My Wife Has Alzheimer's
by
J. Wesley Sullivan

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Also by J. Wesley Sullivan:
Jam on the Ceiling
To Elsie With Love

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Smashwords Edition
Copyright © 1995 Mary E. Lowd
 (www.marylowd.com)
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Introduction:
With this book I hope to reach out to those persons who find themselves confronted by the terrifying realization that their spouse has Alzheimer's disease.
With that shocking moment comes the knowledge that not only will their partners life be drained by one of the most dreadful of diseases, but their own life suddenly has been wrenched from the companionship of marriage into the role of  caregiver.
What's more, that frightening future stretches out beyond the horizon for an undetermined number of years.
I remember the moment I was forced to face that bleak future, and the combination of helplessness and hopelessness it brought. By telling Elsie's and my story, I hope to be of help to others in similar circumstances.
The writing of this book was a means of therapy.
I'd been a newspaper writer for fifty years. Using those skills provided me with a needed outlet from my caregiver role.  I also felt compelled to pass along to others the counsel and experience provided by Elaine Newsom, the person I hired to guide us through those final, terrible months.
This basically is a love story, an illustration that trying times can bring forth greatness in a marriage. It's also a story of  the power of Christian faith. Woven into the narrative is a "how-to" chronicle of the day-by-day advice that's needed as one moves through the various stages of  Alzheimer's.  Most importantly, perhaps, it attempts to look inside the emotions and sensitivities of the caregiver.
If you are standing at the entrance to the caregiver role, and the dread word "Alzheimer's" has already been spoken, you probably are feeling lonelier than you have ever felt before.  Not only is the companionship of your partner being taken from you, you realize that no one, not your caring family, not the support group which you will join, can walk that road for you.
Come, take my hand. Perhaps I can help.


PART ONE:  THE STORY

Chapter One
We laughed as Elsie pulled the check from the envelope.  The electric power company had  returned it for her signature:  "What a silly thing for me to do," she said.  "Just another sign of growing old."
Inside, however, I wasn't laughing.  The milk bill came back last month with the check missing entirely.  And there were other signs.  Something was definitely wrong.
Elsie always paid the bills, seated at her desk in the den of our small apartment. I tried to pay as little attention as possible to the clutter in that desk. Some sort of order always seemed to emerge from that chaos.  However, I couldn't avoid dealing with the box in the upper left-hand drawer in which we kept important notices of upcoming events and tickets for future plays.
It was frustrating to find invitations and tickets missing from that box.  To lessen the irritation I made a game out of finding where she'd put them, just as we'd made a sort of a game of finding where she'd put her keys.
It satisfied my male ego, I suppose, to have her come complaining to me that she couldn't find her car key, and then for me to check routinely the places where the key inevitably was to be found.  I enjoyed her warm, relieved thanks when I returned the key safely to her once again.
I'd always been the more vocal member of our team. At times, Elsie would complain, with good reason, that I told other people the stories about what was happening to us before she'd get a chance. However, I noticed those complaints were dwindling. More frequently now, when Elsie began telling others about our life, she'd grope for a word and then say, "Wes, you tell about that. You can do it better than I can." It was a natural transition. No one seemed to notice.
All this was part of the pattern of our life in the forty-ninth year of what had become a great and glorious marriage.  It was an example of what a marital union should be -- four fine, grown children, each with a spouse and two children of their own.
Oh, there'd been a divorce or two and a vicious custody battle that had seared our souls that summer.  But we were reaping the rewards of life in our harvest years.  We shared in the management, maintenance and ownership of our twenty-one-unit apartment  complex next to one-hundred-acre Bush's Pasture Park in the center of Salem, Oregon.  An iron footbridge leads across Pringle Creek, fronting our apartments, into the park. Giant oak trees grace and shade the apartments. We are surrounded by friendship, not only from the two couples who live here with us and are our partners, but from the tenants.
Elsie, bless her, always cared for the tenants as her own, taking them to doctor's appointments, ready to respond to their needs.  Each spring when we'd pick strawberries for making jam, we picked extra so Elsie could have a strawberry shortcake feed for everyone.
As former editor of the Salem newspaper, I was allowed to keep a desk in the office where I could compose my weekly Sunday column and tend to personal chores.  We were comfortably playing out the third act of a rich and fulfilling life.
I attached no special significance to it when Elsie returned from driving to Portland in late summer expressing concern about operating our stick-shift automobile. "I just can't seem to keep track of operating the car and managing traffic at the same time," she said, adding, "I'm not going to try driving to Portland again." I'll admit that this announcement added an extra sense of urgency to her complaint.
She'd been unhappy for years that we didn't have a car with automatic drive. I really tried to get an automatic the last time we bought an automobile, but I couldn't find one that also had four-wheel drive.  We need that extra protection because we have a wilderness tract near the coast, on which our youngest son and his wife have built a log cabin:  It's reachable only by using off-road vehicles and by hiking.
However, Elsie's seventieth birthday was on the horizon. I decided it was time to get her the ultimate present, her own car. I settled on a bright red Subaru Legacy -- with automatic drive, full-time four-wheel drive and, all the trimmings, including powered windows and automatic door locks.
How was I to know that this marvelous present would be the means by which we discovered something was seriously wrong with Elsie?


Chapter Two
Elsie beamed at the prospect of having her own new automobile.  I enjoyed seeing this patient, frugal lifetime partner of mine brighten at the mention of the car.
We would keep the older, stick-shift Subaru of course.  So, for the first time in years I'd have a car of my own.  I was sharing in the benefits of my generosity.
I brought the new car home from the garage and spent an hour checking all its buttons and switches with the instruction manual -- interrupted, of course, by people from our apartment house stopping by to admire the car.
"It's Elsie's," I kept insisting.  "I plan to ask her permission each time I drive it.''
I took Elsie for the first drive, explaining the operation of the car, its door locks, automatic windows, etc.  Then I pulled the seat forward and turned the wheel over to her.
Elsie was a good driver. She had no trouble at all. 
We turned south from Salem into open country, past the state institutions to green farms on rolling hills.  It was a warm fall afternoon.  Our course led us down along the Willamette River and across the bridge to Independence and Monmouth.  We stopped for a spaghetti dinner at a restaurant we'd read about. What freedom!
How could we be so fortunate? We had enough time and money to go wherever we wanted, whenever we wanted.  And in a brand new red car.
Elsie asked me to drive the car on the way home.  It was a day or two later when Elsie had need for her car.  I explained again how to start it and how to operate the windows, door locks, and such.
She drove to the home of her friend Peggy Blachly. Each Thursday morning she and Peggy went for a hike. Elsie drove one week, Peggy the next.
Elsie phoned me from Peggy's. She wanted to come home, but she couldn't get the car started. "Could you come or call the AAA?" she asked.
The pattern was to repeat itself several times in the next week or so.  Fortunately, most of the time when Elsie couldn't get the car started it was in our own parking lot, and I was near at hand.
It wasn't just starting the car that bothered her.  It was everything else about the vehicle.  She'd been used to the manual operation of windows in our old car.  I swear, in this new car she couldn't even remember which buttons opened the windows and which locked the doors.
She would inadvertently push the button that automatically locks all the windows and then become frustrated when the windows wouldn't open.
I put a piece of duct tape over the automatic lock button, and that solved the problem.
I produced a checklist, much like the one we used when I was flying B-17 bombers in World War II. By moving down  the checklist, point by point, she could start and operate the car.  I covered the list with clear plastic and put it in the driver's side pocket:
It didn't help much.  When she became frustrated with her inability to operate the car, she'd forget to use the checklist.  Gradually, she learned to drive her new car, but she never felt comfortable with it. She confined her driving to short errands, so she wouldn't find herself stranded far from home.  This surely wasn't what we had in mind when we envisioned the freedom she'd have with an automatic drive automobile.
Elsie and I were blessed with a marriage in which we developed total confidence in one another and total communication.  This was to pay enormous dividends in those final years.
We talked over what we were seeing -- the inability to pay the bills correctly, the trouble operating the car, and her difficulty in finding the right words.  "Why don't we have Dr. Drips give you a complete physical exam?" I suggested.  "Maybe there's some medicine you can take."
In our society, we get used to the idea that modern medicine has cures or at least palliatives for anything that ails us. Our internist, Dr. Bill Drips, is the best available.
It was disconcerting -- actually, downright disappointing -- when, after a battery of tests including a CAT scan, Bill told us nothing could be done.  Physically, Elsie checked out perfectly.
He called her problem dementia, a catch-all word meaning various forms of failing mental capacity.  Not only did he say the problem was beyond the province of Western medicine, he cautioned us against trying to seek a solution.  "You can spend a lot of money and raise a lot of false hopes," he warned; ''but nothing can be done."
He didn't venture to tell us the prospects, except to describe plateaus of dementia.  Sometimes it will continue unchanged for years, he said, but each plateau is lower than the last.
This was a terrible blow to two people accustomed to living their lives without having to accommodate to their health.  Our minds and bodies had always been able to do whatever we expected of them.  To celebrate our sixty-fifth birthdays we had backpacked to the bottom of the Grand Canyon.
Most friends our age had to accommodate one way or another to health problems.  We felt aloof from all of that.  Now, we were about to join their club.
Of course we kept our four children apprised of what was happening.  They had scheduled a surprise seventieth birthday party for Elsie at a Salem restaurant.  Even our disconcerting news about Elsie's condition didn't interfere with that event.
It went off in gala fashion.  Each grandchild presented Elsie with seventy of something, from colored paper clips to M&Ms.  Her children gave her a new Pendleton wool suit and elegant blouse--both red, her favorite color.
It didn't really dampen the spirit of the occasion when I slipped a copy of the doctor's report to each family.  The following week we left in her new car for our annual three-week winter sojourn at Palm Springs.  Hiking daily in the desert sun is an excellent way to ignore what we agreed really were relatively trivial problems.  The word Alzheimer's wasn't spoken.

Chapter Three
During the next year, without making a formal, conscious effort, we wove little webs of accommodation around Elsie's problem areas, isolating them and somewhat immobilizing them, so we could continue to live the good and interesting life we'd fashioned for ourselves following my retirement as editor of a Salem newspaper.
In this stage we freely discussed our situation with each other.  We kept our immediate family informed.  However, we made an effort to hide what was happening from our friends and the other people with whom we associated.
Elsie didn't want people to think of her as different.  She didn't want their sympathy.. She didn't want the world to change its attitude or approach to her.   I worked diligently to accommodate her wishes. If Elsie found herself unable to complete a story, she'd turn to me quite naturally and say, "Wes, why don't you tell them about this?" And I would do so.
It's amazing how far people can deviate from the norm without seeming to be abnormal.  Within one's circle of friends and acquaintances there is an astonishingly wide range of  "normal" behavior.  Some people speak haltingly.  Some are shy.  Some are easily irritated.  Along with storing people's appearance in our mental computers (so we can recognize them even when they have their backs to us!) we also store information about the way they act and behave.
We register information about their families, their backgrounds, their likes and dislikes.  All of  this becomes part of our understanding of who they are.  As they change, our mental conception of who they are changes also. It's an absolutely amazing human capacity.
The subtle changes in Elsie's behavior and capacities were registered and accepted by those around us during the following year.  If some began to understand that Elsie was losing her mental acuity, and I suspect many did, they were kind enough to keep their suspicions to themselves.
For us, life went on much as before. We attended two interesting Elderhostel sessions early in the year.  One was at a beachside hotel in Pacifica just south of San Francisco.  While the seminars at the Elderhostel were interesting, taught by faculty from San Francisco University, our easy access to San Francisco was even more exciting. Elsie was able to enjoy, if not participate, in the discussions.
The other Elderhostel was adjoining an eight­thousand-acre state park north of Orlando, Florida where we spent a week canoeing along slow, meandering streams overhung with vines and tropical trees.  We rousted out alligators, huge turtles, and spectacular birds.  We accompanied that wilderness experience with four days at Disney World and the stimulation of the Epcot Center.  We had little time for concern about dementia.
But slowly, during that year, the problem grew.
At the same time, our ability to adjust to it was growing.   We'd signed up for a five-day hiking/camping trip with our local hiking club, the Chemeketans.  We hiked the entire twenty-six-mile McKenzie River Trail, a section each day, returning to our base camp at night.
By this time, Elsie's inability to operate even fairly simple mechanical devices was more apparent.
I bought a new, single-burner Coleman stove and camp light in honor of the occasion. Elsie was camp cook on all our previous expeditions, taking great pride in preparing excellent meals in the field.
She used to cook hamburger in foil packages before each campout.  As the cooking process neared completion, she'd open the end of the package and let the steam escape, then seal the foil once more.  In this manner, she could store hamburger for days on camping trips without refrigeration, combining the meat with various savories to create appetizing, nutritious meals.
For this trip, however, I brought canned, simply prepared food.
Our setting, in Paradise Campground near the lower end of the McKenzie River Tail was magnificent, next to the rushing river, isolated by a green barrier of mossy maples and ferns from our neighbors.  I hung my string hammock between two towering firs and relaxed with a book.
It was customary for me to set up the stove and camp light and get them operating, but Elsie found herself frustrated when she came to organize dinner.  She couldn't work  the stove.  We'd forgotten to bring a can opener.  When I bought one at a little general store down the road, she couldn't work it.
I'm afraid I wasn't as helpful as I might have been.  Instead of encouraging her to do what she could do, I took over the meal preparation, leaving her little to do except feel concerned about her vanishing responsibilities on our camping trips.
As I look back now, I see the vacuums that her dementia was leaving in her life, and I'm amazed she put up with all this as gracefully as she did.
Fortunately, hiking on the trail was no problem for her.  And when we went swimming at Belknap Hot Springs following the daily hike, the dressing rooms were sufficiently communal so I could help her with getting her clothes into a locker.
She helped prepare the sack lunches in the morning.  It was only at night, as she faced the frustration of campground chores, that she somehow felt lonely and sad.
The green barrier surrounding our campsite allowed us to hide Elsie's frustration from others.  We were learning to live with what we could no longer ignore.
For many years, I'd urged Elsie to go bicycling with me through the Cotswolds in England.   I'd flown B-17 bombers in England during World War II.  In 1963 I received a two-month travel grant to tour and study the British Isles.
The English-Speaking Union was my host.  Elsie and I spent a month touring the country, staying in eight British homes.  Then we rented a flat (apartment) in Central London and lived like the Britishers, buying our groceries daily from the neighborhood shopkeepers and carrying everything home in string bags.  The British Isles held special memories for me.
My entreaties to Elsie for a return trip to England had received polite but persistent rejection.  And then in the spring of 1991 the International Elderhostel catalog gave my petition new life.  A twelve­day Elderhostel biking trip was available in East Anglia, right through the country where I'd flown in WWII.  It was a natural.  We'd be with professional guides.  Our housing accommodations would be provided.
Elsie was caught up in my euphoria.  She agreed to go.  I was ecstatic.  I sent off the application immediately, and we began a regimen of bicycling to prepare us for the trip.  The brochure warned that we would be judged on our biking capabilities upon our arrival in Britain, and unless we were judged competent, we couldn't accompany the tour.
The bicycle tour, in September, was four months away, ample time for us to get in shape.  The brochure told us to be prepared to bike twenty-five miles per day.  I outlined training trips starting at about twenty miles daily and working our way up to thirty and thirty-five.  At my computer I drew up a daily schedule that had us doing nearly a thousand miles of biking before we left.  Surely, we'd be ready for England after that.
Elsie was awed by my pre-England itinerary, but valiant trooper that she was, she entered into our regimen enthusiastically.  Even from the start, however, I could sense that we'd lost a lot of our capability from the time, a few years before, when we toured the Oregon Coast by bicycle.
She lagged behind, which wasn't uncommon.  I attributed this to her not being in shape, something she'd overcome in a week or so.  But it was more than that.
She seemed confused at intersections, uncertain how to get across streets in heavy traffic.  I found myself guiding her across.  At such times, she'd simply get off the bike and walk it to the other side -- a quite reasonable response to her confusion.  I asked myself, however, if the English bike tourists would be willing to wait for her..
On a sunny  weekend in late June we rode our bikes across Salem and out to the Chemawa Indian School, just beyond the Interstate 5 Bypass.  I saw the look in Elsie's eyes as we negotiated that complex interchange.
She was trying.  She wanted to please me.  She didn't want to admit her own fears to herself, much less to me.
Over pizza on the way home, we faced up to the truth about our biking capability.  I could probably get into shape for the England trip, but I recognized that Elsie's growing limitation carried over to her confusion on the bicycle.
"How ridiculous," I said, "to go to England for twelve days, to ride on those narrow roads, looking at the rear ends of twenty-three other Americans.  We'd be going only where they want to go and seeing only what they want to see."
The relief was apparent on her face.  She didn't have to let me down by refusing to take the bike tour.  I was backing out.  This left her free to tell me how uncertain she felt on the bicycle these days.
We rode home feeling that a burden had been lifted from us.  In my mind, however, giving up the bike riding in England didn't mean giving up the trip.  It just meant changing its focus.
Elsie's commitment to go to England with me remained unchanged.  As with all other aspects of our life at that time, my problem now was to find ways to accommodate to Elsie's limitations, to continue to live the good life.  In this case, that meant figuring out how best to pay our reprise visit to the British Isles.
In the burst of euphoria that accompanied our decision to go to England, I'd written to a number of British tourist offices seeking information.  In one of the resulting packets of colorful brochures was a catalog of the Countrywide Holidays Association, a British hiking club with thirteen manor houses strategically located in the best hiking districts in the British Isles.
Here was the answer to our dilemma.  We could hike instead of riding our bikes.  We would be with British people instead of Americans.  What's more, four of the hiking lodges were in the Lake District of northeast England, an area that always had attracted my interest.
This was Wordsworth country, where the fields of golden daffodils cast upon the inward eye the image of blissful solitude.
We mailed off our  application immediately, choosing as our site Forest Side at Grassmere, within walking distance of Wordsworth's two homes, Dove Cottage and Rydal Mount.  We would hike the country of the Lake poet, trying to draw the same inspiration from the land that had nurtured his immortal poetry.
In the meantime, the inquiries I'd made in connection with our prospective bicycle tour of East Anglia were bearing fruit. I'd alerted the English-Speaking Union in London about our plans and that organization, in turn, sent our letter to the E-SU branch in East Anglia.  Its president was Air Marshal Sir Reginald Harland of Bury St. Edmunds.
We received a gracious invitation from Sir Reginald and Lady Harland to stay with them during our East Anglia tour.  What's more, he offered to hire a hall so I could deliver an illustrated lecture on Oregon while there.
As a former first lieutenant, I cringed a bit at the prospect of staying  at  the home of the English equivalent of a three-star general, but the invitation was too tempting to refuse.  Reggie, as we were to come to know him, also threw in an invitation for us to hike with the local Sussex Ramblers, once he discovered we wouldn't be biking.
Recalling our 1963 visit to England, I was fearful of the effects of jet lag.  I'd had to take sleeping pills on that occasion to assuage my exhaustion.  With Elsie's condition, this time I absolutely had to stay healthy.
So, we booked ourselves into the dormitories of the London School of Economics.  It would be an inexpensive place to sack out for two days and recuperate from the flight before going to hike in the Lake District.
We stayed in our room sleeping for a couple of hours in the afternoon, but London was too tempting.  We ended up attending a play that evening in the beautiful Duchess Theater.  As I was reading the Playbill, I noticed the Duchess was the site of the initial run of Noel Coward's Blythe Spirit in 1944.  I'd attended that play on my first wartime visit to London.
The theater had been dark and dingy then, during the blackout. There had been an air raid during the performance, but the audience and cast was so accustomed to the warnings that they paid no attention, and the play went right on.
Now I sat in this glittering theater thinking what a great omen this was for our trip.  It was an accurate thought.
Elsie did fine -- until we got to Windemere, in the Lake Country, on our way to Forest Side.  The bus that was to take us to the lodge was delayed.  We sat for three hours in the station, with Elsie growing more anxious by the minute.
Trying to divert her became useless. She began begging me to take her home to Salem.  I was approaching my wit's end when the bus finally arrived and I was able to get her aboard.
The problem retreated as we wended our way through the narrow, green-bordered roads of  the Lake District and up the long drive to Forest Side.
This was no rustic hiker accommodation as we might have at home.  It wasn't even the functional adequacy of the Alpine huts we had known on an earlier hiking trip to Austria.  This was a first-class hotel.
Forest Side had been renovated so recently that the signs for the construction project were still in place at the entrance.  Our room had matching bedspread, curtains, carpet, and wallpaper.  Gold faucets graced our elegant private bathroom.
Seven uniformed waiters served us at dinner, with three choices of entrees.  We selected from among six breakfast menus.  The sack lunches we took hiking were custom made.
I had  no more  problems  from Elsie during  our stay.   Each day we joined a professional guide to walk through the lowland villages and farms that were part of Wordsworth's life.  As a special privilege, and because there were few people on the tour, I was allowed to sit in the three-cornered chair that Wordsworth used in writing his famous lines.
Among our forty-five fellow hikers, from all parts of the British Isles, were fourteen  different accents.  We were accepted warmly, although  many people wondered, as I showed  them my slides of Oregon, why we'd come to that remote part of England to do our hiking.
The relaxed, comfortable atmosphere we experienced in the Lake District carried over to the rest of our stay in England.
Our stay with Reggie and Doreen Harland was delightful.  If Elsie seemed a bit reserved and at times uncommunicative, neither they nor  anyone else we met had any basis for comparison.  They accepted her as she was.
It was a warmly intense  time for the two of us, never more so than on the afternoon we reserved for ourselves to revisit the Kensington area in London where we had our apartment for a short time in 1963.  It had been winter then.  Snow was on the ground.
 The massive Victorian pile in which we stayed, Edgerton Gardens, looked bleak and foreboding.
But on the sunny October day we paid our reprise visit, the flowers were still in bloom and the leaves were on the trees.  Londoners were out and about in colorful clothes.  It was like a benediction on our month-long visit.
We walked in the sunshine up Knightsbridge to Harrod's, the most prestigious department store in the world.  I allowed Elsie to fondle a $1500 blouse.
We had tea and biscuits in a restaurant there.
I had my greatest moment of panic, however, when I lost Elsie in the crowded store.   It took me three minutes to locate her.  She hadn't been worried, but I was.  What would I have done if I hadn't been able to find her in this huge, confusing place, so far from home?
On the long flight home I reflected on how fortunate we'd been to muster the courage to challenge this great adventure.  Denial has great advantages at times.  As I look back, however, I cringe when I think how close we were skating to the edge.


Chapter Four
By the time of our return from England, in the fall of 1991, I found myself doing most of the cooking in our apartment. Ordinarily easy activities were becoming more difficult for Elsie.
For eighteen years she had been a coordinator of the Salem Meals on Wheels (MOW) program.  This required her to organize the routes for the MOW drivers each week and to recruit the volunteer drivers.  Each Monday she was responsible for seeing that the drivers were on hand at the Senior Townhouse where the meals were prepared.  If a driver failed to appear, she took meals to the eight or ten people on that route.  Over the years, she had learned every alley and back road in Salem.
Reorganizing the routes each week to keep them as short as possible almost became second nature to her.  And yet, it was taking more and more time each Sunday night for her to assemble the route slips into their plastic containers.  I recognized that more of our Sunday evenings was being taken up by this activity, but I didn't grasp the significance.
She didn't complain to me about her problem.  It wasn't something I could help her with even if she had.
As the end of the year approached, so did the prospect of returning once again for a few weeks in January to our little motel in Palm Springs, California.  We looked forward to this mid-winter break.
Each year the same people came to the Monte Vista Motel.  We had developed a separate set of friends there.  We hiked or bicycled in the morning, ate our lunch at some interesting place in the desert, and returned to the motel in time to have a swim and play shuffleboard before dinner.
It had been a year since I passed out the medical reports on Elsie to our family -- an enjoyable year in which we'd been able to shield ourselves from Elsie's increasing limitations.  We looked forward, as we had the year before, to letting the desert sun help us escape, temporarily, from our concerns and our ordinary routine.
The thousand-mile trip to Palm Springs involves two long, grueling days of driving.
Ordinarily, we broke up the trip by staying overnight with Elsie's family in Southern Oregon, but on this occasion we were traveling with our son Steve and his wife Yan.  So we drove straight through to Sacramento and then, the next day, on to Pasadena where Yan's family lives.
We were escorted to Long Beach the next day to visit the Queen Mary and Howard Hughes' Spruce planned for the evening. It was an interesting but very tiring day.
Following the dinner, we drove another twenty miles to an outlying area to stay at the luxurious new home of one of Yan's cousins.  I hadn't fully realized how much of a strain this all was putting on Elsie.
For a year and a half, as Elsie's problems developed, she was finding it more and more difficult to maintain the facade of being "normal."  With every passing month, this took more of her energy.
That night, in a strange home with relatively strange people, she began to hallucinate for the first time.
Elsie and I had been under some tension for months over a child custody suit in the family.  The prolonged court battle for our grandchildren Joel and Gail, and our inability to influence the outcome, had taken a heavy toll on Elsie, for whom family was of paramount importance.
That night Elsie glimpsed the two young children of our host family running back and forth in an upstairs hallway.  Suddenly, she announced, "Joel and Gail are here.  I've seen them running upstairs."  She began calling, "Joel! Gail!" When they didn't appear, she began berating those around her.  "Why are you keeping them from me?  Bring them downstairs where I can talk to them."
We stood there in startled silence.  Then I explained, as calmly as I could, that our grandchildren were back in Oregon, that they couldn't possibly be here in Los Angeles.  She would hear nothing of it. As her agitation grew she began pacing about, then climbing the stairs.
Our hosts, along with us, were dumbfounded.
This was our first experience with such irrational behavior on her part.  It was even more difficult because we were in the home of people we hardly knew.
Elsie accused all those around her of conspiring to keep her grandchildren from her.  When the situation persisted, she declared, "I can't stay in this house."  Turning to me, she said, "Get our suitcases," and she moved towards the door.  Trying to placate her, I picked up our bags, which were sitting in the hall and took her outside to the car.
It was nearly midnight.  We were in a totally unfamiliar part of  the vast Los Angeles Basin.  I couldn't imagine what I would do by myself with Elsie in that condition.  In the dim glow of a distant street lamp, I tried to reason with her.  "Where will we go at this time of night," I asked?
Even in her distraught state, she recognized our plight.  Reluctantly, she allowed me to take the baggage back into the house.
It was a sleepless night for me, lying with Elsie on a pad in an upstairs bedroom.  Even after Elsie dropped off to sleep, I lay awake wondering what the next day would bring.  I worked out two or three scenarios, including our return by air to Salem, leaving our car to be driven home by son Steve.
Elsie was asleep as I went down to breakfast the next morning.  Steve asked, "What do you plan to do?"  I told him I had no idea about what that morning would bring.  About then, Elsie carne downstairs, fully dressed.  Somehow she'd regained her composure during the night.  She acted as though nothing untoward had happened.  As the conversation progressed, it was obvious she expected us to continue on to Palm Springs that day. So we did.
Our warm welcome at the Monte Vista and the familiarity of our surroundings were beneficial.  Our entire stay was without further untoward incident.  I talked with Elsie about what had happened.  She recognized she had been hallucinating, but somewhere in her mind she never completely abandoned the idea that our grandchildren could have been in that house.
I launched into the long trip home with some apprehension, and with good reason. Again thrown into entirely unfamiliar surroundings and long drives in the car, she lost touch with reality.
We stopped in Ventura for a mid-afternoon break and walked along the promenade by the ocean.  As we sat on a bench, a Hispanic man walked by with a brown book under his arm.  Elsie grabbed my arm and said, "That man has stolen that scrapbook.  He took it from the cupboard in our apartment."  She started up to grab the book from him.
I restrained her just in time.  Just as I was diverting her attention, she announced that she recognized all the people who were walking by.  "All these people are from Salem," she told me.  Before I could stop her, she began talking with them.
She approached two couples about our age saying, "How nice to see you here."  The people were gracious enough.  They all seemed willing to recognize her, but they couldn't quite decide where.  Finally, I was able to get her back to the bench.
We then initiated what would become a chronic dilemma.  She needed to go to the bathroom, but she refused to enter the public women's restroom on the promenade because she was fearful of who else would be in there.  Only when I determined no one was using the facility and stood guard at the entrance would she enter.
I got her back to the car, finally, and set off driving towards Santa Maria, where we were to visit Bill and King Whitehead.  Bill was the first pilot of the B-17 in which I flew as co-pilot in World War II.  We'd known the Whiteheads for 45 years.
As we drove north, Elsie pointed to passing cars and declared they contained people who were out to harm us in some way.  I wondered to myself how I would present Elsie to the Whiteheads and what kind of visit we would have.
However, from the moment we drove into their driveway, Elsie was her normal self again. We spent a relaxed evening together and left the following day without untoward incident.  I learned later, however, that King recognized something was wrong because when Elsie asked to help in the kitchen, she wasn't able to do the simple things King asked her to do.
But from my standpoint, the visit was a total success. We'd had a good night's rest, and I hoped that the shorter trip the next day would be less stressful.
We stopped in Berkeley and took the Bay Area Rapid Transit (BARD) into San Francisco for an early dinner and a show.  All went well until we returned to our motel about 9 pm.  I'd hoped we could get to bed early and get a good night's sleep.
The people in the next room weren't ready to go to bed at 9 p.m., however. The little noise they made alarmed Elsie.  She demanded I go to the office and complain.  I had a hard time dissuading her.  She insisted I park the car directly in front of the room where we could watch it during the night.
Her fears grew to the point that she refused to take off her clothes, so what sleep we got was with her fully clothed next to me.
The experience with the Whiteheads taught me a lesson.  The following morning I suggested we go a bit out of our way, to Sacramento, to visit our good friends and former Salem residents, Gladys and Erwin Peterson.  This turned out to be a good idea.  She looked forward to seeing them, and we had a delightful lunch together.  This helped get us back to Oregon. But the following night at an Ashland motel we went through similar problems concerning noises from the room next door.
That morning, we were to visit Elsie's brother Jack and his wife Lucielle at their home along the Rogue River near Grants Pass.  I pulled into a park near their house and had a talk with Elsie.
"Honey," I told her, "I have to have help. I can't carry this burden alone. I have to let your family know what is happening.  Please let me tell them."
Despite everything that had happened, she still didn't want anyone else to know.  And when we got to Jack and Lucielle's she maintained her normal composure.  I wasn't able to share my burden with her family.
We drove back to Salem without incident.  Back at our apartment, the crocuses were in bloom, heralding another spring.  But the time had passed when we could pretend life was normal and that if we just accommodated ourselves to Elsie's limitations, we could go on as before.


Chapter  Five
Dementia is a multi-person problem, affecting not only the patient but the caregivers. Unless they, too, are cared for, they can and probably will extend themselves beyond their capacities.  Sustaining the capabilities of the caregivers is an essential element in sustaining the patient.
Like most caregivers at this point in our developing problem, I'd relied heavily upon denial.  I desperately wanted Elsie to continue to be the loving partner with whom I'd shared almost all my adult life.  We'd learned the secret of developing a happily married life together.  We'd raised four wonderful children, surrounded ourselves with an interesting, comforting coterie of friends.  We'd made a respected place for ourselves in our church and in our community, and in retirement we were reaping the benefits of what we'd sowed.
It's not surprising, therefore, that I consciously and  subconsciously  did  everything  within  my power to pretend that life could go on it its accustomed pattern.  Simultaneously,  Elsie was struggling within the increasing limits of her capabilities to do the same.
The events of the trip south in January, however, forced us to seek help. On the advice of a psychiatrist friend we signed Elsie up for a day of testing by a psychotherapist.  I'd never heard of the term before.
We were apprehensive as we approached the office of Dr. Pritam Rohila on the second floor of the busy Lancaster Mall. This strange and unusual situation was magnified by the appearance of Dr.Rohila himself.  This small, dark man, obviously from India, greeted us kindly but without emotion.  His accent meant that we had to pay special attention to what he said.
Circumstances which were foreign to us became even more foreign.  For a fee of more than $800, Dr. Rohila spent most of a day testing Elsie's abilities.  Although I realized Elsie had lost some of her mental acuity, I had no idea how far this process had gone.   Perhaps I just didn't want to recognize the obvious. I couldn't deny the result of the tests.
She no longer could count by threes.  When shown a card containing a number of pictured items, she couldn't recall what was on the card after it was withdrawn.  She didn't remember what she had for dinner the previous evening.  She was one year off on her age, two years off on the date she graduated from college.  She didn't know the age of her children, didn't know her telephone number.
I could hardly believe what I was hearing and seeing.  I'd lived as intensely and closely with Elsie these past months as any time in our married lives, and yet I discovered I had no idea how far the dementia had progressed.  The interlocking of our lives somehow shielded me from the progress of her deterioration.
As the testing progressed, I found she couldn't even complete the first, elemental section of a test linking colored cards to numbers.  She couldn't connect dots on a sheet of paper and at the same time connect letters of the alphabet.  She didn't know the capital of Italy.
But she passed the vocabulary section with flying colors, giving the definitions for even the most complicated words.
We went home almost in silence.  I was too astounded to comment, other than to compliment Elsie on her answers in the vocabulary section.  I have no idea what Elsie thought of the testing and its results.  Did she fully realize the implications?
For me to explain what I understood about what happened that day would only cause her pain and unhappiness.  We went back to our daily routine.
A week after the tests, we appeared at Dr. Rohila's office to hear the results.  It was a most depressing experience.
I knew, of course, that Elsie had fared poorly on most of the tests.  But we'd found ways, over the previous year, to ignore or bypass most of the weaknesses that showed up in the testing.
So Elsie couldn't remember the capital of ltaly.  So she couldn't reproduce a drawing once the original was taken away.  What had that to do with the way we were living our lives?
Dr. Rohila went through the tests one by one, emphasizing failure after failure, shortcoming after shortcoming.  After fifteen minutes of this, he told us, without even changing the inflection in his voice, that he believed in all probability Elsie had Alzheimer's disease.  He said "in all probability" because it was impossible to conclude the result definitely without putting a segment of her brain under the microscope.  But his experience and her test results left him no alternative diagnosis.
We sat there stunned.  It was what we most dreaded to hear.  My reaction was to explode in anger.  Why was he doing this to Elsie?  Why did he persist in emphasizing only the negative aspects of her test scores?  Why couldn't he have leavened his session with us by pointing out that Elsie passed the language recognition sections perfectly, never missing the definition of a word?  Why did he have to leave her devastated?
Dr. Rohila was taken aback by my attack.  He explained he was only filling his professional responsibility.  We left on less than amicable terms.
There it was.  The word had been spoken.  Oh, we'd been studying up on Alzheimer's, along with other forms of dementia, but somehow we'd been able to disassociate ourselves from it.  Now, we had to apply all the terrible things we'd read to our personal futures.
We telephoned a good friend, a woman whose husband had passed away from Alzheimer's a few years before.  They had been in a social group with us for thirty years. We'd watched as her husband was less and less able to recognize and relate to those around him.  Finally, they stopped coming to meetings.
While expressing sympathy for their problem, we'd effectively shut them out of our lives until it came time to go to his funeral.  Now, for the first time, we became interested in what had happened in those final years.
She graciously met with us.  She shared an essay she'd  written during the time of her greatest distress.  It still was emotionally difficult for her to tell us her story.  And she gave us the folder full of Alzheimer's information she'd accumulated during her experience.
In this and in checking into similar experiences, we began to realize that each Alzheimer's case is so different from all others that it's hard to find patterns, to draw generalities.  Not only does the brain lose its capabilities in different ways, the varying societal and cultural backgrounds and the temperamental nature of the patients help determine their reactions to the disease and to their caregivers.
We went through the packet of leaflets and papers on Alzheimer's disease.  We checked out all the material on the subject we could find in the library.  Paradoxically, although Elsie couldn't  remember the capital of Italy, she still was capable of absorbing and  analyzing the information about the disease that was slowly sapping her abilities.
I found this to be the cruelest part of Elsie's affliction.  Many other Alzheimer's victims become blissfully unaware of what is happening to them and what their futures hold.  Not so for Elsie.  Not only was she painfully aware of what lay in store for her, she was far more aware than most people of what it meant to have a dehabilitating illness.
Elsie's mother developed Parkinson's disease during  the final years of her life.  This affliction gradually immobilized her and robbed her of the power to speak.  Year after year, she sat in her chair in the beautiful family home along the Rogue River at Grants Pass, constantly cared for.
Elsie's father gave up all the other activities he loved -- hunting, fishing, and being active in the community -- to watch over her.  He did nothing else, except for yard work.  As time went on, he hired help to care for his wife.  Two days every month Elsie went to Grants Pass to assist.
These became times of great stress for her, not only as she watched her mother's condition deteriorate but as she  saw what was happening to her father.  His horizons  closed in on him.  He would brook nothing of what he called "interference from others in the family," especially Elsie.  All her suggestions for improving conditions and easing the burden on her father met with recriminations about how "you always come down here and try to change things."  After her two-day vigil, Elsie would return home, and I would wipe away her tears and try to ease her frustration.
As the end neared, as happens often in such situations, the caregiver went first.  The pressures on her father mounted.  They had failed to give a power of attorney to one another before her mother's condition became bad enough to where it was no longer possible for her to grant such a power.  Half their estate was immobilized.
One afternoon her father developed internal hemorrhaging.  The doctors could not save him.  Elsie's mother spent her final months in a nursing home.
Elsie and I said to ourselves and to one another as this final chapter played itself out that of all the fates that might lie in store for us, this was the one we prayed most fervently would not be ours.  And here we were.
What's more, Elsie felt she had reason for an even greater fear.  Her paternal grandfather spent his last years in the state mental hospital.  She didn't know exactly what was wrong with him except that he had been found wandering at times.
During her periods of depression in the months that followed, when she poured out her deepest fears to me, she would express her concern that she would end up in the insane asylum.  Nothing I said could erase that dread.


Chapter Six
If we seemed doomed to live out many of the worst aspects of Elsie's parents' final years, at least we could learn from their experience.  For starters, we drew up a new will.  We exchanged powers of attorney.  We created living wills and gave each other a health power of attorney.  We put everything in our joint names, so either of us would have access to it.
Perhaps even more importantly, I made sure that not only were our children fully informed about the progress of Elsie's problem, I tried to involve them directly.  I assured them we were a team, that the family would face this together.
We'd face it together?  No.  We'd all face it differently.  For our children, it meant volunteering time occasionally to help.  It meant a changing pattern of family visits.
For me, it meant readjusting my life and my activities.
Bowing to the insistence of the rest of our family, I made plans to continue my work in the community as a part of sustaining myself for the rigors of the caregiver role.
But for Elsie, for my Alzheimer's patient, it meant gradually losing not only her mental capacities but everything she held dear, and eventually her life.  I still marvel at the equanimity with which my wonderful life partner faced up to this terrible future.  I often wondered if I could have been as calm and as courageous in the face of such an ordeal.
While we talked about the problems her disease presented, I didn't probe the depths of her mind.  It. wasn't her style to vent her inner feelings.
As has happened so often in our marriage, it was Elsie who provided us with one of our best ideas.  We were approaching our forty-ninth wedding anniversary, on March 14, 1992.  Before we realized the significance of that date, we accepted a dinner invitation from a young couple of our acquaintance.  Their first child was a few months old.
Spending the evening with a couple who were facing the challenges and opportunities of a relatively new marriage turned out to be a delightful way of reminding us about our own experiences.
As we prepared to leave for dinner that evening Elsie turned to me and said, "I have a favor to ask of you." In an expansive mood, I said, "I'll grant you anything."
"You'd better be careful," she replied.
Caught up in the euphoria of the moment, I reassured her, "Today, my dear, whatever you want is yours."
I was a bit taken aback when she said, "I want you to write me a book, the story of our marriage."
She explained she was afraid that her disease would rob her of her memory.  She feared losing the remembrance of our years together.  A book would help keep those memories alive.
I'd never written a book. The only book to my credit was a collection of my newspaper columns compiled by our two youngest sons.  I'd tried to write a full-scale book at one time and gave up in frustration.
That evening, I told our young friends about Elsie's request and my intention of filling it.  I even mentioned the proposed book in my weekly newspaper column the following Sunday.  I used these means of screwing up my courage about the upcoming venture to be sure I wouldn't back out.
I needn't have worried.  When I sat down at my computer early one morning the following week, the book came pouring out as fast as I could type it.  Over the next few months a pattern developed.  I'd get up at 5:30 am and write a dozen pages.  Next I'd get Elsie up and make her our standard breakfast of oatmeal laced with raisins.  (She wouldn't eat it without the raisins, and oatmeal was all I knew how to make for breakfast.)  Then I'd read what I'd written, and we'd laugh and we'd cry, reliving the ups and downs of nearly fifty years of marriage.
It was a most emotional experience.  As the story developed, we not only were reminded of how truly interesting and marvelous our marriage had been, we had reason to focus on the positive past rather than just to dwell on the fears of the future.
While I began to write the book for Elsie, I came to realize what a blessing it was for me as well.  Until then, I'd had no reason to go back over our marriage, to put our past lives together chronologically, to revive latent feelings about what happened to us over the years.
I came to realize this was a valuable exercise for every marriage.  It shouldn't take a failing memory to initiate such a reliving of one's past.  And although Elsie was supposedly the one with the memory loss, I was impressed with how many times she was the one who came up with the missing name or recalled a special event.  How much pleasure that gave her.
Compiling the book helped to intensify what was fast becoming a very special time in our marriage.  We were making the most of the months we had left.
About halfway through writing the book I sent off a draft of what I'd written to members of the family.  By its nature, the book was an intimate recounting of events that included all of them.  I wanted to be sure they wouldn't object to what I was disclosing.  They all were gracious in their responses, emphasizing how much this story would mean to the rest of the family as well as to us.
The book's title, To Elsie With Love, fell into place.
By the end of July, I was finishing the final chapter.  At no place in the book did I refer to Elsie's problems.  I ended our story with our trip to England the previous fall, as we walked in the sunshine up Knightsbridge in London towards Piccadilly Circus and on into our future.
In my spare time, during the following months, I revamped the book looking towards making it available not only to the family but to others who were interested in it.  This was too intimate a book to promote and seek widespread distribution, as we had the book of my newspaper columns, but it was apparent that it would have special meaning to a wider audience than our family.
For several years Elsie had been wanting to replace the carpet in our apartment.  And I had been ignoring it.  Now, with time beginning to close in upon us, I decided she should have her new carpet.
It was a major undertaking, requiring that we move every piece of furniture and take all the books off the shelves.  In putting the books back in place, I noticed a red-bound volume I hadn't seen in years.  It was Elsie's diary, from the year 1944, when she followed me from Army base to Army base as I completed my pilot training.
It almost seemed that fate was handing me a great gift -- Elsie's own, personal story of one of the most poignant portions of our marriage -- just as I was about to publish my own version of our half-century together.  What's more, not only did Elsie's diary contain a wealth of interesting, detailed material, her recounting of events showed up lapses in my own memory.
Now, I could include Elsie's book, Diary of a Wartime Bride, in my book, on different colored paper to distinguish it from mine.  What a wonderful addition!
During this period Elsie and I shared in finding ways to modify the impact of her problems on our lives.  At her suggestion, I prepared a weekly calendar of events.  Under each day of the week, I listed everything I knew would be happening that day and the time I expected it to happen.
Each morning I went over the events of that day.
I left the weekly schedule on the coffee table in the front room where she could refer to it.  For perhaps a year this became her means of staying in touch with the reality of our lives.
In an effort to keep us doing  things together as long as possible, I signed her up as a volunteer in the Technical Services Section of the city library, working along with me.  I was chairman  of the new Heritage Room in the library, a beautifully appointed room with historical exhibits.
As a feature of the Heritage  Room project, the library purchased a $40,000 Questor computer  designed to store electronically all the historic photographs  and  documents of the Salem area.  I had become a volunteer, electronically scanning photos into the computer.
I noticed  that some  of the volunteer jobs in the Technical Services Department where I worked weren't very demanding.  In fact, some were deliberately designed to be done by persons with limited capabilities.
I decided that bringing Elsie into the library as a volunteer would give  her  a sense of worth.  It seemed to work, for a time.
Elsie had two jobs.  She used a rubber stamp to imprint a date on the pieces of paper that would be inserted in books telling patrons when the books were due.  The other job entailed her drawing a heavy black line through a bar code on books which were being removed from the library's collection.
Each of these jobs taxed her capabilities to their maximum.  Each time she arrived, she had to be instructed in how to stamp  the pieces of paper.  Eventually, that became too much for her and she was reduced to using the felt marking pen on the discarded books.  Even that required instruction each week.
Reflecting back on that period, I can't fully decide when the benefits of working with me on a volunteer job began to be outweighed by the anxieties and fear of failure this obligation imposed on her.  I suspect she kept on longer than she enjoyed the work in deference to my desire to have her do the job.
By this time, however, I'd begun to recognize the hazards of imposing my will on her.  When she finally protested that she'd rather not go to the library, I accepted her decision.
For more than six months we'd had no repetition of the hallucinatory problem that had bedeviled our trip to Palm Springs the previous winter.  I was determined to keep Elsie as involved in as normal a life as I could.  So we signed up for the summer outing of our hiking club, the Chemeketans, for a week in the Mt. Lassen area.
About a hundred people attend the annual outing.  The club brings along a seventy-foot-long tent to house the camp kitchen and dining area.  Two cooks prepare wonderful meals.  We camp out in our individual tents, taking hikes each day.
I raised our big blue-and-gray family tent next to a grove of trees, with easy access to the rest of the camp.  I stretched our string hammock out between two of the trees and put our folding chairs in front of the tent.
I built a portable toilet so Elsie wouldn't have to venture out to the outhouse during the night.  We completed the week, but it wasn't easy.  I had a terrible time getting Elsie back into bed once she'd gotten up to use the toilet.  Somehow, she always became disoriented at night when the tent was lit only by our flashlights.  She got lost in the campground during the day.
The other campers were cooperative and kind in assisting us. We hiked with groups during the day, and as long as I was with her, she had no trouble fulfilling her responsibilities to the group.  We completed the week's hiking and camping as scheduled, but I'd stretched our capabilities a bit too far.
We had scheduled another sizable trip for the fall.  Every two years, my World War II B-17 bomber crew has a reunion.  I was in charge of the get-together in October in Monterey, Calif.  I reserved rooms in a motel by the bay.
Our trip south not only was free of problems, it was highly enjoyable.  We drove along the Oregon Coast highway we had once toured by bicycle.  We went through the California redwoods in the early light of dawn.  We arrived at Monterey without a problem.
Our reunion was filled with the usual war stories, camaraderie, and a full schedule of the local scenic attractions.  I'd alerted the others to our problem.  Elsie held up well until dinner the final day.  The strain of attempting to carry on a normal appearance became too much for her.  At the restaurant, she suddenly pointed to a man at another table and whispered to me, "That man is going to steal our car."
I knew we were in trouble, but I tried to calm her fears and to focus her attention on the meal and on our friends.  It was useless.  She started telling everyone at our table that the other people in the restaurant were conspiring against us.
When our companions tried to placate her, she began pawing at the wife of another crewman with her napkin.  I took her back to the motel.
The trip home to Salem was less carefree than the trip south.  At one point, in a convenience store near Redding as I was getting gasoline, she began haranguing the people in the store.  I rescued her.
As we drove home the final day of the trip, I finally faced up to reality.  This was the last time that Elsie and I could do automobile touring together.  Gradually, but irrevocably, Alzheimer's was tightening the leash it held on our lives. 


Chapter Seven
I'd been doing all the cooking and the housework for months.  Actually, I was feeling quite proud of myself, shouldering the increasing burden without difficulty.  The diet wasn't fancy, but it was well balanced.  I spent more time with Elsie than usual, but when I had a meeting to attend, I still felt comfortable leaving her alone for an hour or so.
That was beginning to change with her increasing problems.  What's more, the onset of the fall season brought additional community responsibilities for me.  I needed extra help.
Sixteen years before, Elsie and I had sponsored a Vietnamese refugee family.  At the time, scores of families were being moved into Salem.  We were to take a two-week trip to Israel.  We volunteered to let the sponsors of  the refugees put a family in our house while we were gone, until they could find a more permanent location.
When we returned home, at 2 am, after twenty-four hours of travel, we found all five of our bedrooms occupied.  We went to a motel for the rest of the night.  When we arrived the next morning, the Vietnamese were out sweeping our lawn with brooms.
The mother, father, auntie and four children became "our family."  In the years immediately following, Elsie spent much of her time guiding them through the maze of American paperwork and cultural mandates.  We became the "parents" of the family.  It never occurred to us that some day we would be dependent upon them instead of the other way around.
But here we were.  As they became aware of the seriousness of Elsie's problem, they insisted on bringing food to us twice a week and taking over the housekeeping chores.  Son Dave's wife Janet volunteered to come from Corvallis, thirty-five miles away, one morning a week to give me time to write my weekly newspaper column and attend to other business.
In  that  manner the situation  was stabilized through the fall of 1992 and into the winter.  Soon we would make our annual trek south to Palm Springs.  But this time, having learned from the experience of the previous year, we would fly.  I found a direct flight from Portland, thus avoiding plane changes.
However, a week or two before our scheduled departure in mid-January, the situation took a rather dramatic turn.  Up to this time, Elsie could be relied upon to stay at home.
Suddenly, one morning while the Vietnamese were at the apartment doing housework and I was at the newspaper office writing a column, I got a call from Della Mae Greider, a friend who lives a quarter-mile away, across the park.  "Elsie is here," she said.  "She's perfectly all right.  I'm giving her some coffee."
"Keep her there," I said.  "I'll finish up some work and be there shortly."
A minute or two later, Della Mae phoned again.
"She's gone.  I couldn't talk her into staying.  I think she's headed towards your office."  I dropped everything and headed towards my car.
Snow was on the ground.  It was below freezing.
Elsie was bare headed.  I began cruising the area, handicapped by the one-way streets.
I caught up to her, walking swiftly a block or two from the newspaper.  While still agitated, she got into the car quietly.  Apparently the noise of the vacuum cleaner and the difficulty she still had in understanding the Vietnamese ladies somehow had combined to send her into a panic.
This pattern repeated itself in the ensuing days.  I never could be sure at which home she would turn up.  She obviously knew where she was and where she was going.  But it was highly unsettling.  She always seemed pleased to see me and willingly returned home.
She confessed that the Vietnamese ladies, whom she loved dearly, disturbed her now, with their foreign accents and, to her, unpredictable behavior.  This was symptomatic of  her heightening sense of paranoia.
The Palm Springs trip was fast approaching.  I'd be there without help for a week and a half until the arrival of Elsie's brother and his wife, for a five-day visit.  We were scheduled to return a week after that.
I had son Steve and his wife Yan meet us at the Portland airport to help us depart.  The flight south was uneventful.
I'd alerted the couple that managed the motel about our problem.  Belle, the wife, met us at the airport.  Elsie seemed glad to see her.  But once at the motel and safely settled in our room, Elsie began hallucinating about the people she saw passing by.  "Those men are going to rob a store," she said as two of the motel's regular guests passed by.  "We'd better keep our car where we can watch it."
By the next day, with the sun shining, our lives began to brighten.  I rented a car and we set about enjoying our normal regimen of packing a lunch and going for a daily hike in the desert.
We'd had problems in Salem with her periods of depression and crying in the mornings.  At Palm Springs, these began to intensify and lengthen.  "Why are you doing this to me?" she would insist.  She would curl up into a ball in bed, crying, and refuse to eat.
Each day it took longer to bring her to an emotional state that would allow us to resume our usual activities.
The following Sunday morning we'd agreed to meet friends from Salem at the beautiful Community Presbyterian Church at Palm Desert, a few miles away.  That morning, however, Elsie's spell of panic and crying lasted longer than usual.
"Honey," I said.  "Mary Ann and Bob will be waiting for us at the church.  They expect us."  It took me a long time to fully understand that logic and reason would  have no effect on her.  I simply had to wait it out, until her panic would subside far enough to allow her to be functional.
I had to start slowly, urging her to come sit in the sunshine outside our room.  She had to get dressed for that, of course.  Then perhaps she would eat a bit.
I began to realize what a trap I'd set for myself, so far from our support systems at home.  The church service was about ready to begin when she calmed down enough to get her into the car.  We slipped into the church in time for the sermon and met our friends after it was over.
After church, we were scheduled to attend the Palm Desert street fair, block after block of colorful booths.  Elsie always looked forward to this in the past, but this time the confusion of people sent her into a panic.  I was forced to apologize to our friends and to take her back to the motel.
I was grateful for the arrival of Elsie's brother Jack and his wife Lucielle early that next week.  This didn't lessen her morning periods of depression, but I could share the responsibility.
It was a shock to her brother to see her in such a condition.  They had the room next to us.  We shared breakfast at a table in the sun outside our rooms.  The managers provided grapefruit and oranges picked from trees in the apartment complex.
One morning Elsie began her panic attack during breakfast.  Jack and I had to carry her, crying in a fetal position, into our room.  Later that morning, however, she rallied and we were able to take a car tour of the Joshua Tree National Monument in the mountains to the East of Palm Springs.
Seeing her enjoying the scenery and companionship, it was hard to remember the bundle of fear and anxiety with which we had been dealing only a few hours before.
As the time neared for Jack and Lucielle's departure, I became more concerned about that final week.  Matters came to a head when I checked with the airport and discovered that our through flight to Portland was being cancelled.  A week from then, we'd have to change planes going home.
I telephoned our family describing the situation.
I told them we were coming home a week early.  Jack and Lucielle could see us to the airport.  Our decision to return early triggered conference calls among our children.
Elsie was highly distraught at the Palm Springs airport.  I was glad Jack and Lucielle were there.  I met some friends of Elsie's in the line waiting to check in their baggage.  When I told Elsie of their presence, she calmed down immediately and went over to greet them in a normal fashion.
After a few minutes of pleasant conversation, she returned to her brother and his wife and almost immediately resumed her agitation and crying.
When she felt it was necessary, she still could muster the energy and determination to appear normal, but for an increasingly greater share of the time, she no longer felt capable of coping with the demands of the world.
 

Chapter  Eight
Son Bill was designated by the family to convey to me, upon our return from Palm Springs, the decision that I must hire regular, trained help.  He arrived at our apartment from his home in Eugene late the following morning.
That morning began badly and rapidly became worse.  Elsie refused to get dressed, refused to eat.  She kept up a steady tirade about my failure to help with her problems.  ''You don't care one bit about me," she cried.  "All you think about is yourself."
I felt helpless under this barrage.  It did no good to counter her arguments with my own.  That only made matters worse.  It was pointless to try to cajole her.  I felt my own nerves beginning to fray under the attack.
Even though a person knows that this dramatic personality change is caused by a raging disease, it is very hard to hear your character and motives attacked mercilessly by the person you love and still not have some kind of response.  At the same time, the caregiver lives in fear of how much worse things might become.
As hour after pitiless hour went by that morning, I became frantic.  Somehow, using up all my resources, I'd made it back with Elsie from Palm Springs.  Son Bill had promised he'd be there in the morning, but he nor any other member of the family was there when I needed them most.
When he finally did arrive, shortly before noon, instead of greeting him warmly, I berated him for not getting there earlier.
He responded by saying, "I deliberately waited, hoping that if you had problems with Mother this morning, you'd be more willing to accept the fact that you need to hire help."  I felt like strangling him.
He came prepared to take me for a long walk in Bush's Pasture Park, across the footbridge from our apartments, and to soothe my sensibilities while he quietly sought to impose the family's decisions.  He found his task much easier than he supposed.
The arrival of Bill at the apartment calmed Elsie down.  I put her on the couch for a nap.  This allowed us to slip away for a few minutes.
It was the first of February, a bleak time in the park.  The cold wind merely added to the chill that was pervading my being.  I remembered how difficult it had been for Elsie's father to find competent, reliable help to care for her mother during the years she had Parkinson's disease.
It seemed as though every month or so the search had to begin again.  And when Elsie's father, the caregiver, passed away and her mother had to be transferred to a nursing home, the entire house was stripped of its heirlooms and valuables.  We always suspected that those working in the house had cased the place and were ready to burglarize it.
With that example in mind, I had dreaded getting caught up in hiring caregivers.  But my experience of the past weeks in Palm Springs put all that far into the background.
Bill made it plain I wouldn't be carrying this responsibility alone.  "I plan to stay here just as long as it takes to get competent help," he said.  I felt relieved.
We began that afternoon to look for a companion for Elsie.  I made some exploratory telephone calls, among them a call to longtime friend Della Mae Greider.  Della Mae had help staying with her and her husband Carl, who had a stroke.
 We felt fortune was with us when Della Mae's helper, Paula, told us about Louise, a friend of hers with experience in caring for Alzheimer's patients.
Louise was looking for work.
It turned out that Paula and Louise were part of a small group of women who rely upon one another for tips in finding new jobs.
We called Louise and arranged for an interview that evening.
Louise was a large, colorful woman, probably in her 60s.  She wore a bright green dress, had gold bracelets, all of which set off well against her well coiffured blonde hair.  She had a deep, hearty voice, and gave promise of having a fine sense of humor.  She obviously wanted to impress us, and we were willing to be impressed.  "I certainly know about Alzheimer's," she said.  "I cared for my mother during the 13 years she had the disease."
While she obviously wanted the job, she also let us know she needed 40 hours of work a week in order to make ends meet in the mobile home park south of Salem where she lived.
She wasn't the ideal candidate.  She wasn't just heavy, she was immobile.  Oh, she could move around the apartment as needed.  But what would happen if Elsie were to decide to take off again?  Louise couldn't follow.
Realizing we were unlikely to find the ideal candidate, Bill and I agreed we'd pay her for 40 hours each week, whether she worked that much or not.  We'd build up a backlog of un-worked hours, to be used later when we needed her more.
We raised the issue of taxes.  We'd be required to pay her social security and to send other tax information to the government.  She assured us she'd take care of her own taxes.  We decided to settle that issue later.  At that moment we both wanted her to go to work the next day.
Bill and I were conducting these negotiations in the den while Elsie sat in the front room.  When we'd agreed on the terms, we told Elsie what we were doing and sought to get her confirmation.  She was noncommittal.
Louise, smiling, assured her that "You and I are going to get along just fine, dearie."
Bill returned to his home and family in Eugene.  Louise arrived the next morning.  She was to work from 8 am to 4 pm, Monday through Friday.  I'd prepare Elsie's breakfast.  Louise was responsible for lunch and would have dinner ready before she
left in the afternoon.  She would do light housework in addition to monitoring Elsie.
I discovered the first day that having an extra person around the small apartment overcrowded the place.  Hiring Louise was one way of freeing me to do my community and civic chores, but I didn't need to be gone eight hours a day to do that.
I went to the newspaper office to write my weekly column.  I visited the library to work as a volunteer in the technical services department.  I visited shut-in friends.  I attended committee meetings and my service club.
Three noons each week I had lunch with groups of men.  But this still left a lot of unfilled time.  I no longer could work in the apartment on my computer where I not only would be under foot but would be distracted by what else was going on.
If the arrival of Louise upset my life and routine, it was a far greater imposition on Elsie, as it turned out.  Although my wife no longer could function well within her apartment, she still felt it was her space.
But now Louise was in charge of the kitchen, or so it appeared.  She was gracious enough to Elsie, but it was apparent that Elsie's role was to sit around in the background while Louise got things done.  Louise was the soul of kindness to Elsie, treating her with deference and care, tending to her every wish, talking to her in tender terms, acting like an old friend.
In retrospect, these tactics were exactly the wrong thing to do.  Looking back, it's obvious that the last thing Elsie really wanted was someone to come into her home and begin acting like a pal.  Elsie was a private person.  Louise invaded and threatened that privacy. 
Not only was Louise dominant in Elsie's kitchen, Elsie had to submit to her presence while she was getting dressed and in the bath.  Louise's efforts at endearment only emphasized how dependent she expected Elsie to be on her.
For a time, Elsie followed the habit she adopted early in her life when she was angry and upset.  She simply remained silent.  But the tempest was building inside.
Finally, when I was safely out of the house, Elsie resumed her pattern of growing angry and leaving in frustration.  Louise, because of her size and inability to move quickly, was unable to follow her.
Anticipating such a situation, I remained available by telephone as much as I could.
"She's gone gain," Louise would report frantically, indicating the direction she had taken.  By the time I could get to the apartment, Louise had begun driving her car around the neighborhood, searching.  I'd go to the 100-acre park next to our apartment complex and begin searching on foot.  But by that time Elsie would be far away.
Eventually, we'd both give up and return to the apartment, waiting for a telephone call from one of Elsie's friends announcing where she was.
These frantic times obviously were taking their toll on Louise, also.  She felt responsible for Elsie.  I think she was more apprehensive than I was for my wife's safety.  I'd been through this many times before.
When Elsie returned of  her own volition or I would be summoned to get her at a friend's, she showed no sign of remorse.  Instead, she rebuked us, saying, 'What are you worrying about me for?  I knew where I was."
Nevertheless, I couldn't completely divorce from my mind the fear of her becoming lost and helpless.
I decided desperate measures were called for.  With son Bill's acquiescence,  I bought a plastic cover for the front door knob, the "childproof" type.  This meant she couldn't open the front door. It long had been impossible for her to operate the sliding glass door in the dining room.
This gambit lasted only long enough for Elsie to realize what we'd done.  She exploded.  ''You're making me a prisoner in my own house," she cried, refusing to be solaced.
She began beating on the window panes in the front room. I feared she would shatter the glass.  She opened the sliding windows and tried to climb through the opening.  When that failed, she went into the bedroom, came back with a heavy hand mirror, prepared to attack the windows once again.
I managed to wrest the mirror from her hand, which wasn't easy.  Her outrage added to her strength.
I was overwhelmed by a burst of compassion for this dear woman who had shared my life for a half century.  She wasn't just rebelling against her confinement but against me.  Her partner was turning into her prison guard.
I conferred again with Bill and we agreed that Elsie needed the escape valve of being able to leave our apartment if she felt it was necessary.  I had put a brass identification bracelet on her arm months before.  We had to take our chances that, as she had in the past, she'd return when her feelings had calmed.
Louise had been with us almost two months when matters came to a head.  I had mistakenly believed that Elsie and Louise had reached a kind of accommodation.  On the surface, the situation was calm.  No angry words were spoken.
But one Friday afternoon, Elsie calmly and coldly told Louise, "I don't want you here on Monday.  You are not to come back to this apartment."
I was used to discounting what Elsie had to say.  Her reasoning wasn't always rational.  But I had to admit that she sounded as though she meant exactly what she said in this instance.
I took Louise aside and reassured her that Elsie probably would have forgotten by the next day what she'd said.  I confirmed that I wanted Louise to continue.  We parted for the weekend on that note.
But the following day, Saturday, I got a telephone call from  Louise.  "I can't continue," she said. "Emotionally, I can't work in that atmosphere.  I've done my best to make friends with Elsie, and I don't think she ever will accept me."
I responded by reminding her that Elsie was an Alzheimer's patient.  "We can't let the patient dictate what we do."
She agreed that I'd treated her well and that I really needed her.  "Please try it again for another week or so," I pleaded.  "I assure you I'll make things better."
After calming her fears as best I could, Louise agreed to return the following week, and I hung up the phone greatly relieved.  Louise was capable and good-natured and trustworthy.  I felt lucky to have her, and fearful of having to find a replacement.  The following afternoon, Sunday, I found the house keys and Louise's resignation behind the screen door.  She blamed our inability to resolve the situation regarding how her taxes were to be handled, but I understood that what had driven her to quit was Elsie.
My wife had won the battle to reclaim her apartment from this woman who had been imposed upon her for two months.  I stood there pondering the prospects before me.
In the two and a half years since Elsie first showed signs of having a problem, I gradually had lost my battle with denial, with the futile attempts to fend off this disease by trying to keep a "normal" life. In the previous humbling two months, I learned a lot about my own limitations as well as Elsie's.
I still didn't know enough about my own shortcomings, despite all I had read about this dread disease and the experience of the past two months, to realize how much I needed to learn and how much I needed, not just someone to care for Elsie, but a teacher for myself as I faced the unknown in the months and, perhaps, years ahead.
I didn't have the insights to pray openly for that kind of help.
All I knew was that it was Sunday afternoon, the worst time of the week to look for help.  I was alone with Elsie, simultaneously caring for her and facing the daunting challenge  of getting adequate assistance for a patient who had just proven she wasn't ready to accept it.  I'd never felt so lonesome. 


Chapter Nine
For more than two years I'd convinced myself I would be strong enough to care for Elsie, whatever happened.
Not only was this illusion shattered by our experience in Palm Springs, I'd been growing more dependent daily for the previous two months on having help with me in the house.
Suddenly, with Louise's abrupt resignation, I was left without assistance.
My first reaction was to call for help from Barbara Nelson, leader of our Alzheimer's support group.  I'd been working with Barbara attempting to organize an Alzheimer's day care center.  I knew she'd be responsive to my needs.
But she had no suggestions.  An hour later I was still groping for ways out of my dilemma when she called back.  She remembered a woman who normally attended Alzheimer's cases but was serving as a companion at nights to a woman living alone.  Maybe she'd prefer day work. 
For more than twenty years in addition to my work in the community, I'd written a weekly personal column on the editorial pages of the Statesman Journal newspaper.  In baring myself and my feelings through the column, I had allowed people who don't know me personally to identify with me, to vicariously enjoy our family log cabin on the Siletz River and to share in our lives.  I made no secret of my Christian faith.
This willingness to share my feelings with the public was about to pay a big dividend.
Elaine initially wasn't interested in taking on a new Alzheimer's case.  She concluded her last case a few months before, one which had her caring for a woman 24 hours a day, seven days a week, with only one day off a month, for the final two years until the woman died.  The intensity of this experience was draining on Elaine.
But as Barbara explained who Elsie and I were, Elaine responded that she felt she already knew us, having read my columns in the newspaper for years.  What's more, our Christian orientation appealed to her.  Was the Lord calling her to us?  She agreed to visit us the next day.
Elaine arrived at precisely 11 o'clock, the appointed hour.  I was to discover later she always arrives at exactly the expected time.  Predictability and punctuality are high on her list of  job requirements.  The people she cares for learn she can be depended upon.  They need that sense of security, she says.
She wore no makeup.  Her brown hair was twisted into a small bun atop her head.  Her light clothing and jacket lacked color.  When Elaine works in someone else's house, she is determined to remain in the background, as unobtrusive as possible.  Especially when dealing with a woman patient, she never wants to appear threatening.
But there was no escaping the warmth of her smile or the compassion in her eyes.  She let it be known early in the interview that she feels called to her work, that it is part of her Christian commitment.  She seemed pleased that Elsie and I were elders in our church and held a similar outlook on life.
I would have been hard-pressed to guess Elaine's age.  She was probably a generation younger than ourselves, and her obvious vitality gave credence to her assurance that she enjoyed walking.  She would have no problem keeping up with Elsie on those occasions when Elsie's frustration with life caused her to bolt from the apartment.
Elaine said she was staying nights with Margaret Miller.  She would continue that as she worked twenty-five hours a week with us.  Did we know the Millers?  I assured her we knew the Millers.  I'd given the eulogy for Margaret's husband, former Salem Mayor Dr.Vern Miller,when he passed away a few years earlier.
Yes.  It seemed to both of us even then that she was called to be with us.  We set up a schedule of twenty- five hours a week.
It was obvious even on that first day that Elsie not only would accept Elaine but she would grow to love and to depend upon her.  Ever self-effacing, Elaine encouraged Elsie to take the lead in any project they began, deferring to Elsie's place as woman of the house and asking Elsie's permission and advice.  Whatever needed to be done got done in that manner.
From my standpoint, I now had an in-house expert on Alzheimer's, ready to explain Elsie's reactions and condition to me, to alert me as to what to expect.  Even with her knowledge, she deferred to me and my manner of dealing with Elsie, allowing me to learn rather than just telling me what to do.  One of her most challenging assignments was to lead and guide me in the direction of providing medication for Elsie.
At the onset of Elsie's problem both she and I agreed we'd avoid medication as a "solution" to her illness.
For her entire life, Elsie avoided taking pills.  I could count on the fingers of one hand the times she gave in and took aspirin for a headache.  We shook our heads at some of our friends who have plastic pill cases with compartments for days of the week and hours of the day.
We'd been to nursing homes where medications are used not to assist the ill but to make it easier for the staff.
We'd watched society futilely try to substitute the use of chemicals for solutions to problems.  We began our Alzheimer's experience determined to let nature take its course and to avoid getting ourselves caught in the grip of chemical dependency.
The decision to avoid giving her chemical medication grew out of the fear of  turning her into a zombie, taking away what conscious awareness she retained.  For the first two years of the disease she was able to share ideas and help in decisions.  I wanted to hang onto that part of het as long as I could.
After our enforced return from Palm Springs, however, her crying spells and her desperate attempts to leave the apartment made it obvious I had to consider some form of medication.  We'd been directed to a woman psychiatrist.  She'd interviewed Elsie earlier.  It was time to renew that association.
The four of  us, including Elaine, talked for an hour.  The doctor explained the options.  Number one:  we could hope that Elsie's developing good relationship with Elaine would permit her to avoid periods of depression, and we could get along without medication.
Number two:  if medication was necessary, we could use a low-level dosage of an anti-depression medicine.  This would take two weeks to take effect, but would moderate her crying spells.
Number three:  we could use an anti-psychotic medicine which would relieve her tension and would work to eliminate her hallucinations and her need to escape from the apartment.
We decided the first alternative was the best.  So we tried it. After only a week or so, however, it was obvious something more was needed.  In one particularly intense period of distress, Elsie pleaded with us to find some medical relief for her.  Before that she had resisted emphatically whenever we'd tried to give her pills.
So, with the doctor's consent we began the anti­depressant drug, one pill a day.  She took the first day's pill voluntarily.  The following day, however, she announced she would take no more pills.  No amount of pleading by Elaine or by me would  get her to change her mind.
I'd decided long before that I would not give her medication without her knowing about it.  As her partner, I would  protect her from that.
Now, however, the only way to find out whether the anti-depressant drug was  effective was to administer it.  But I was afraid of losing her confidence if she found out  I was  giving her the  medicine without her knowledge.
What a dilemma!  I consulted with Bill.  He said I'd eventually have to tell her.  What then?  Finally, I decided I would do what I'd determined not to do.  I crushed a pill and put it into her morning oatmeal.  After two weeks, we could see some improvement in  her response.  She was still crying but not as much.  She was willing to stay in the apartment.
One night when she was calm and alert, I explained what we had done.  She accepted  the situation and showed no resentment towards me.  So we continued the medication, but we still didn't do it openly.  One consolation was that she wasn't being turned into a zombie.
Nevertheless, the gradual decline of her capacity to think rationally and to communicate easily, which had begun long before we instituted medication, continued its pattern.  I had steadily growing reservations about how much longer I could take her out in public places where she would be exposed to new and unexpected situations.
We were scheduled to attend  the President's Associates Day at the University of Oregon, a day filled with interesting classes.  It included a fine luncheon.  This would precede by one week our attending our fiftieth class reunion at the university.  It was a kind of test run.
Elsie did well.  She attended the morning classes and the luncheon.  After the lunch, I escorted her to the rest room.  Somehow, she managed to avoid me as she left and it was a few minutes before I could locate her.  By that time, she was becoming concerned about the people we passed.  I decided to take her to son Bill's house.  She stayed there, enjoying the family the rest of the afternoon while I attended classes.  She was tense all the way home, critical of my driving.  But all in all, the day had been a real success.  I had great hopes for our class reunion weekend.  I was co-chairman of the  event, so I had to be there.
By the middle of the following week, however, it was apparent she was in a new period of decline.  She began running away.  She accosted the man who does the yard work at the apartment.  She became apprehensive and irrational.  By Friday, the day of our scheduled departure for the University to the class reunion, it was obvious she couldn't go.
In desperation, I telephoned son Steve in Portland.  He came down to assist, with Elaine's help, while I went to Eugene.  Elsie didn't seem unhappy she was missing this important event.
For more than twenty-four hours, I was caught up in the reunion with old friends, able to fulfill my responsibilities without a constant concern about Elsie.  I even had time for a bicycle ride and a long conversation with Bill.  It occurred to me this was the first day I'd been away from Elsie since all this began almost three years before.  It was a revelation to see what life was like without that constant responsibility.
Like Cinderella returning from the ball, I had to leave the class banquet early to relieve Steve.  I was glad to get back to Elsie, but I now was aware of how engulfing my caregiver role had become.
The next day Elsie continued to be distressed and to resist my efforts to help.  I talked her into going to Willamette University to walk through the botanical garden there.
A convention of some sort was under way at the Sparks Field House on the campus.  People were gathered under banners near the entrance.  Without warning, Elsie left me, approaching the people and demanding that she be given "the right to vote".
I tried to explain her problem, which made her all the more agitated.  I finally got her into the botanical garden, but as we walked further she strode over to a dormitory and, once again, began complaining to people that she was being denied the right to vote.
I was becoming desperate, cut off from any support and unable to get her to walk home.  All I could do was to block her from moving further from home.  Two young men in a sports car stopped and asked if they could help.  Again, as I attempted to explain, Elsie's level of irascibility heightened.
I had no choice but to simply wait her out, refusing to allow her to go any other direction than towards our apartment.  It took more than an hour to get her home.
I telephoned son Dave and his family to help me get through the rest of the day, and then called the doctor for advice.  We obviously needed to move to a new level of medication.
We then added the anti-psychotic medicine, and after two days found  that Elsie was becoming more relaxed and more able to enjoy her life.
During the worst of the trouble, however, I began to realize the  limitations to my ability to keep her living in the apartment.  If she persisted in screaming  and  accosting  people,  we'd  have  to  put  her where that kind of behavior can be dealt with.
I took my problems to Elaine who explained, "As long as Elsie is in the apartment, she feels responsible for it.  At the same time, she recognizes she can't manage things here, and that heightens her frustration and anxiety level.
"If Elsie were living elsewhere, she wouldn't feel that  responsibility," she added.  "Once Alzheimer's patients are in rest homes where they are cared for and on a regular, predictable routine, they adapt readily to their new environment," she said.  In our Alzheimer's support group I'd met several men whose wives were in nursing homes.  The men confirmed  Elaine's statement.
She wasn't recommending a nursing home.  She just wanted me to know that it might not be as bad a choice as I was making it.  Her counsel made little impression on me, however.  "I can't rid myself," I told her, "of the picture of what it would be like for Elsie to 'wake up' and realize she no longer was in her own  home and that her worst fears were  realized."  As her partner, I felt I must resist this at all cost.
Once I explained my feelings to Elaine, she joined me in a determination to keep Elsie at home.  Without my realizing it, Elaine began planning how that could be accomplished. 
Gradually, however, some of my objectives modified.  Some of the patterns and practices I would have resisted strenuously I now accepted.
So there I was, at exactly the place I vowed I would not be, giving her medication two or three times a day designed to keep her from being a problem to herself and to others.  And I no longer doubted but that as her problems increased, so would the medication.
Looked at it from one perspective, of course, we should be extremely grateful for the availability of medicines that can artificially regulate and control Alzheimer's patients.  The patients would endure personal terrors without such medical help.  But it also is healthy to be skeptical and concerned about the power they give over the people to whom the drugs are administered.
In the political arena it is said that power corrupts and absolute power corrupts absolutely.  Even with the best of intentions, it is impossible to draw a fine and firm line between using the power of medication to assuage the problems of the patients and the problems of the caregivers.
Make no mistake, Alzheimer's imposes its demands on the caregivers as well as the patients, regardless of vows and determination to resist.  Medication lies in wait.  It's  not a question of whether but when it will be used.
Treating Alzheimer's means constantly having to face up to the unthinkable.  It began to sink in that I not only did not have the rational, sharing partner I once had, I never would have her again.
However, there still were flashes to let us know Elsie was still there.  When Elaine explained to Elsie how much of a burden this all was on me, Elsie looked at her and said, "Oh, yes?  Well then why don't Wes and I exchange places for a while?"
Elsie told Elaine one day when things were particularly bad, that she wanted to die and to die as quickly as possible.  I accepted that as a rational statement, one made while she was as fully aware of her condition as she could be at that stage of her illness.
But it had been months since I was able to delve into her mind and understand what was going on there.  If it was true that she wanted to die, it also was true that she was striving to survive, to cope with her environment and surroundings as she envisioned them in what was left of her reasoning power.
I was left to evaluate this all on my own now, without her rational help and guidance.  I couldn't help her die, but I could protect her while she was doing it.
Keeping her at home not only was a means of keeping her safe and comfortable in a familiar environment, where her family and other support groups could be near her, it provided the best assurance she would be allowed to go naturally and easily when that time came.  We would put no barrier in the path of that happening.
In deciding to let her die, I was fulfilling my obligation to look out for her best interests. 


Chapter Ten
Most people go through life without knowing what it means to have a panic attack.  It's just as well.  A genuine panic attack leaves every nerve ending in the body tingling.  It is accompanied by a feeling of total loss of control, of being completely overwhelmed.  It is total fright and fear combined.
I know.  I've been there.  When I had what is commonly called a midlife crisis at about age forty, I went through a panic attack.  It left me shattered, a shambles.  When I went to the doctor, however, he discounted it.  It's just a case of nerves, he said.  It can't hurt you.  Once the nerve endings are all jangling, that's as bad as it can get.  It will go away, and you'll be none the worse for it.
I really told him off.  Why didn't you warn me ahead of time, I complained.  If I'd known what to expect, it wouldn't have frightened me so much.
He cautioned me about one thing, however.  Once you've experienced a panic attack, you'll never forget it.  You always will remember that terror and know that it can happen again.  He was right.  There are some things you are better off not knowing about.  High on that list is a panic attack.
Elsie had panic attacks frequently.  It goes with Alzheimer's.  Perhaps it was helpful for me to have experienced one, because I was more sympathetic with her plight, with her inability to function while she's in one.  I was more patient during the time it took for it to go away.
Having panic attacks is particularly difficult for Alzheimer's patients because it's so hard to explain to them what's happening.  They are left with a shell of their rational mind by this dehabilitating disease.  It was useless to explain panic attacks to Elsie.  We just had to live with them.
I remember one in particular, one that centered around our vacation homes at the Coast.
In 1947 Elsie and I built a small beach cabin at Lincoln Beach out of surplus materials from Camp Adair.  By 1968, with the family mostly grown, we began looking inland from the beach cabin, hiking over old logging roads, trying to get to the Siletz River, which we knew was only two miles from the Coast.
We not only succeeded, we found a 54-acre isolated tract along the Siletz, with no road, which we bought and made our own.  Our youngest son Bill and his wife Janell built a log cabin on the Siletz tract.  So, our private wilderness area, which we could reach only by trail, was but a few minutes from our beach cabin.
Each year in June we helped son Bill, his wife Janell and their two children, Karen and Ian, move in for the summer to the Siletz log cabin.
The roof rack on their car is always stacked as high as the car itself.  They take their car over the first big hill on the route into the Siletz using four-wheel drive.  They then carry all the material for the summer, including a caged cat and a rabbit, the last half mile by cart or on their backs.  It's traditional for Elsie and me to help with all this.
Ordinarily, I go in a few days ahead to scythe down the grass in the front yard of the cabin, but age plus Elsie's condition precluded my doing that this past year.  We'd been into the Siletz property a few weeks before, noting that the beavers had not rebuilt their dam across our dirt access road.  During the winter the beaver dam raises the water on the road creating a secure barrier against intruders.  We'd cleaned out the beaver dam a few weeks before.
I assumed that Elsie would be looking forward to this annual ritual, but the previous week had been a down time for her.  We increased her medicine to keep her stable.  On the morning we were to leave for the beach cabin and the Siletz, she had seemed quite tractable.  However, as it came time to get into the car, I sensed a growing tenseness.
She began to complain about my driving as we left Salem, and by the time we were on the highway to the Coast she was into a full-scale panic, crying and demanding we return to the apartment.  I got about eight miles down the road before I had to turn back.  I telephoned Bill, who was still at his home in Eugene, and told him the situation.  Perhaps we wouldn't get to the Coast after all.
I'd learned to accommodate to almost any situation, so I placated Elsie as well as I could and assured her we didn't have to go to the Coast unless she wanted to.  She refused to eat lunch.  Panic attacks normally are accompanied by acrimony.  "Why are you doing this to me?" she complained.  All sorts of imagined fears surface.
The attacks usually lasted for an hour, although that varied.  Once I finally got her mind diverted, she could be induced to lie down.  After about a twenty-minute sleep, she would awaken on the path to recovery.  And if l didn't push her, within another hour or so, she would become functional again.
In this instance, it took about four hours.  When she seemed calm enough, I said, "You know, if I were to put a pillow in the back seat of the car, you might feel comfortable in going to the Coast."
When she responded, "How big a pillow?"  I knew we might be able to make the trip after all."
She got up once in the car, half way there, and asked, "Where are we?"  I explained where we were, and she was satisfied.
Panic attacks, of course, are just part of the larger problem. It was all I could do, once we were at the beach cabin, to keep her satisfied with the situation.  She kept suggesting we go home, and I kept delaying the decision.
We went for a walk, the customary way of keeping her occupied and diverted.  I was beginning to run out of alternatives when Bill and family arrived at the beach cabin on their way to the Siletz.  The appearance of family members always was a boost to both of us.  It allowed Elsie to focus her attention on people she loves, and it gave me a needed support system.
After off-loading some camping gear, Bill and family departed for their log cabin.  It was too late in the day, and the circumstances with Elsie were not such that we could assist them.  So we stayed in the beach cabin alone that night.
Bill had suggested that I accompany him during summer on some hikes associated with the Oregon Coast guide book he was writing.  I'm useful in that I can drive a car to the other end of some of the hikes, so he doesn't have to backtrack.  He urged me to go with him for two days, leaving Elsie in the care of Janell at the beach cabin.  I readily agreed.
The following day, however, Elsie and I were scheduled to go to the log cabin for the day.  Elsie accepted the idea, right up until the time we were to leave.  This was a typical case of her wanting to do something she knew she should want to do.  But she was fast running out of the ability to do even what she'd enjoyed doing in the past.
She began to complain about my driving on the ten-minute trip to the entry road.  Her concern mounted, along with mine when we got to the beaver dam area.  The beavers had returned.  The water on the road was about eighteen inches deep, deeper than we'd ever driven through before, especially with our new car.
Waves of water piled up ahead of the car, almost going over the hood.  My only consolation was that obviously Bill, with his loaded car, had made it through the night before.  There was no turning back at that point.
We made it, continuing in to the parking area, at the start of the trail along the river leading to the cabin.  Elsie was in a full-scale panic attack by this time.  It was all I could do to get her moving on the trail, crying and complaining.  After the first hundred yards, as she was compelled to move vines aside and kick sticks from the trail, she began doing what she has enjoyed so much on the way to the cabins.
Once in the warmth of the log cabin, sitting in the kitchen by the stove, with family busily around her, her spirits brightened.  After a meal and after an hour or so of activity, she was her old self.  I helped grandson Ian string a hammock in front of his little play log cabin, and Elsie enjoyed watching this.  We returned  to the beach cabin that night in relative calm, Bill brought his family back to the beach cabin the following day.  With Janell in charge of Elsie, Bill and I left early the next morning, before Elsie was up, and began two glorious days of hiking together.  While Bill was hiking, I had time to relax and to think.  It was the first such free time I could remember.
The experience was different.  I was by myself, on my own.  I realized Elsie no longer would be accompanying me on such experiences, as she had for the previous fifty years.  Like it or not, I would have to build my own life.
The grim experience of getting Elsie to the beach was a reminder that we were entering a new phase in which Elsie would be more confined to our apartment.  Would I be confined also?
Up to this point in our journey with Alzheimer's, I had hired our caregivers solely for day care during the week.  Elsie and I went together to evening events and on weekend excursions.  Elaine lived several miles south of our apartment.  It wasn't convenient to call upon her for evening and weekend assignments, even if she was willing to accept them.
We had an apartment becoming vacant in our complex just a couple of doors from our own.  Suddenly, it occurred to me that I should  rent that apartment myself, for Elaine to live in, so she could be close at hand as Elsie's needs became greater.
The idea began expanding in my mind.  I could use the apartment at times during the afternoon to rest or to read.  I couldn't ever do that in our apartment.  And while I had a mini-office at the public library and I was welcome at the Statesman Journal office, neither offered me a place to relax.
What would Elaine think of all this?  In a previous assignment she'd lived in the same house with her patient for two years.  But that was a terrible strain on her.  I didn't dare impose on her beyond her endurance.
An apartment nearby would  present less of a strain.  I would continue to be with Elsie at nights, ordinarily.  However, there should be some arrangement where Elaine could sleep overnight in our apartment when I needed to be gone.
My time with Bill was becoming more valuable to me than I had realized.  I hiked 14 miles with him in the two days at the Coast, returning tired but refreshed.
I think the separation was good for Elsie also.  Janell assured me that things had gone quite well while we were gone.  It wasn't until later that I discovered Elsie kept Janell and the children up for four hours in the middle of the night simply by refusing to go to bed and to quiet down. She had wandered about, rattled chairs, turned lights on and off, and sat on Janell's bed.
All seemed well upon our return, however, as we enjoyed Janell's excellent dinner.
The good mood carried over to our trip back from the Coast, which was calm and uneventful.  Elsie and I had a good conversation before going to bed in which I outlined to her my plan for renting the apartment for Elaine.  After an initial concern about the cost, she seemed to accept it without question.  I explained how the arrangement would reduce even the remote possibility that we might not be able to care for her in our apartment.  She was entirely sympathetic with that objective.
The following morning Elaine seemed pleased with my ideas.  She began planning how she could shift some of her furniture over to the apartment to make it a pleasant place for her to stay.  Within a day or two she purchased a sofa, for $15, that was suitable as a place where she could sleep.
When the apartment became vacant, I helped to clean it.  I had the electricity transferred to my name and laid plans for putting in a telephone.
In the months I worked with Elaine, I learned how to read what she had to say.  She had trained herself to be accommodating.  She never wanted to offend.  I learned, however, that her way of reacting negatively to an idea was simply not to express enthusiasm, while still seeming to accept it.
In the days leading up to her occupation of the apartment, I began to sense a diminishing enthusiasm, an unwillingness to finalize the agreement.  She was to move in on a Monday.  On the previous Friday afternoon, Elaine said she would pray over the decision on the weekend and give me her answer Monday morning.
I therefore was prepared on Monday for her rejection of the apartment.  But I wasn't prepared for the substitute plan she offered.
Elaine said she was ready to accept responsibility for the care of Elsie twenty-four hours a day, seven days a week, for the duration.  It took a while for the impact of what she said to sink in.  She had  to explain in more detail.
She'd arranged with her friend Sylvia and another woman, both of whom had many years experience with Alzheimer's, to become part of her team.  One of them would be either in the apartment caring for Elsie or on call at all times.  The object of this full­time program was not only to give more carefully monitored, stabilized care to Elsie but to give me free time.
I could count on having overnight trips away from the apartment.  For starters, they would expand their direct care from twenty-five hours a week to forty-five hours, from 7 am to 5 pm Monday through Friday, plus whatever evenings I wanted off and availability on Saturdays and Sundays as needed.
The cost, of course, would escalate, to one level now and to a higher level when Elsie reached the stage of needing constant care.
The figures she suggested reflected the fact that the women saw themselves as called to this type of service.  Eight dollars an hour is very little for such professional care, especially when considering that the employee or contractor must pay Social Security taxes as well as income taxes on that amount.
However, it was becoming obvious that extended home care of this type would be costly.  Round-the­ clock care would escalate to about $40,000 a year, with no insurance available to lessen the impact.
But the financial burden was not paramount in my mind.
As I sat there, I could see a new life opening before me.  I couldn't sleep the following night as my mind raced over the new options at my disposal.
I was being given back an important part of my life, the part that included hiking, time with friends and family, more work in the community.
Of course, I would accept her offer, even though it didn't involve her accepting the apartment.
It was nearing six months since our Palm Springs trip.  We were entering a new era.  While it would give me more freedom, it also meant that Elsie was moving ever deeper into the grip of the Alzheimer's that would some day, who knew how long, take her life.
I had to face up to the fact that I would be called upon to make more heart-wrenching decisions concerning the fate of my life partner.
This was brought home forcefully one day in a note from Elaine outlining, in graphic terms, what was required in the days and months ahead.
I kept that note, and resolved I would keep a journal in the future.  Not only would the journal help keep me focused on what was required of me, it would provide a place where I could come to grips with the emotions that Elsie's illness was setting loose within me. 


PART TWO:  THE JOURNAL

Chapter Eleven
July 24
Elaine has left me the following detailed  note.  It is at once mundane and mind-shattering.

Food to purchase:
eggs
fruit muffins
crackers of choice
raisin bread
English muffins
strawberry, banana Jello
cheese of choice or cream cheese
yogurt
Ensure (cold-regular, strawberry and vanilla)
nuts of choice
fresh vegetables ready
instant  potatoes, scalloped or au gratin
canned or frozen (meals)
stuffing mix

I can make up these quickly for you, Wes, to heat up (more later)

We probably will need to have her hair cut here as time goes on.  I have some scratch paper -- will bring.

Elsie must have either a small meal or (1/2 muffin) and cocoa or liquid Jello every 2 hrs. minimum, as well as other items listed (variety).
I can make up a large recipe of muffins on a good day and freeze them.
Also a supply of meat balls (basic recipe) sauces can be added, as desired.
Eggs for deviling if liked or boiled.

Medication:
Benadryl 25 mg is widely used by many doctors for basic anxiety.  Can be bought over the counter.

I believe with the Benadryl we won't need other (Zoloft) medicine until 7 or 8 pm.
Good nutrition regularly with continuous use of Zoloft pm and 25 mg Benadryl am in a "vitamin syrup" -- (being honey) will keep things relatively smooth.
The Zoloft at night should help Elsie rest so she can eat a normal breakfast for a while yet.

Wes, I think we should set a flat rate (pay) for periods of high stress or anxiety for Elsie and I'll come for times you need to be away.  Plus you need some free time to just walk or drive, etc.
You need at those times to have nothing to do but not have a set schedule to return.  10-12 hrs. are very helpful.
If you have a friend you could use part of his or her home to  just sit and read or TV or sleep, or think, this would help you.
These in the midst of the really bad days.  Like last week, just after the bad days, she will rest a lot.

For Elsie, a schedule is a must.
She must have regular meals and snacks.
She must have a set rest period two times a day.  Her walks should be short or shortened gradually.
This prolongs everything and stirs up anxious feelings.  (On the bad days of course we should do as she wishes.)
She will enjoy outings on good days (extras should be avoided) or again as she wishes.
We must anticipate her being cold or hot as she can't figure out what's wrong only that something is wrong and it upsets her.
In brief we must be tuned into every feeling she has.
We will need soon to monitor bathroom needs.  As she won't be able to process the urge in the brain.
If we can eliminate the stress of all of this other, she can focus on body needs of food and elimination properly, sometimes to near the end.
It expends a great deal of her energy to do and say (the right thing) being around friends and public, and she has naturally a GREAT desire to do just that, the right thing.
If she feels she's failing, she wants  to give up entirely.
She needs the same feeling of security  and freedom of a two-year-old, that all needs will be met.
This is an exhausting procedure for the caregiver as it is hourly, daily, monthly, yearly.
So very few can handle it.
Elsie is in the last stages already, but it will still be two years or so.
As Mrs. Brydon was used to meeting needs for Jock and  it  comes second  nature  for  women to caregive.  It made it easier, too.
Through GOD's reliable help of the Holy Spirit He will strengthen us and give us wisdom for this task.
As we stay in prayer He'll guide.
For Him, Elaine.


Chapter Twelve
July 31
It is six months to the day, as I write this, since I brought Elsie home a week early from Palm Springs.
Alzheimer's  moves so slowly, it takes a six months' perspective to see how it advances.  Viewed from that distance, however, the disease is marching ahead at flank speed.
I brought Elsie home because, with her bouts of depression and crying, I wasn't sure I could cope with her alone a thousand miles from home.  Still, I can't help remembering that she was functional and rational most of each day then.  We enjoyed hiking in the desert together.  We could discuss any items of interest in our lives.  She cared for all her own personal needs.
I have no other experience with Alzheimer's against which to measure what's happening, but from what I see I must accept Elaine's and her partner Sylvia's assessment that Elsie is well into the "final stages."
Far from being able to care for all her personal needs, she now has retreated to where she must be dressed, garment by garment. While she's capable of pulling on her own socks, much of the time she doesn't.  And when she does, she may put both socks on the same foot.
She chose what she'd wear six months ago.  Now, she wears whatever is put on her, with no comments or suggestions.  She may submit to having her nightgown put on, but she frequently will go to bed with part of her day clothes on.
Six months ago she argued about the way we treated her.  She was resistant to anything she saw as patronizing.  Now she no longer cares.
Her horizons have retreated.  She no longer, except on rare occasions, is conscious of the needs of others.
Six months ago I was continuing my conscious effort to keep her stimulated with outside activities, to keep her mind as alert as I could in the hopes of sustaining  her reasoning  powers.  When Elaine joined us she accepted my efforts.  But as the months pass, Elsie no longer responds to such mental stimulation.
Increasingly, I've had to accept Elaine's assessment, that Elsie is only attempting to enter into such activity to please me, not because she enjoys it.  On the contrary, it is taking a great deal of her energy to pretend to be normal.  I've come to accept the idea that the best thing for Elsie is to keep her on a predictable routine here at home.
I still plan to take her to the beach cabin, for example, for family events, but I recognize that I'm really doing her no favor, and we probably will pay for such excursions with her having a panic attack or a period of depression after they are over.
Even six months ago it was hard for her to concentrate on reading for any great length of time.  But she still spent much of her time in meaningful activity.  She has reached the stage where much of what she does is meaningless.
In some ways that's a blessing.  There was a long period in which she wasn't capable of doing little chores, but she still needed that form of activity.  As a result, she was frustrated.  She complained a great deal about having nothing to do.  That phase has passed.  Now she doesn't demand as much attention.
In its place, she now spends hours at a time simply moving things from place to place.  She will take her shoes out of her closet, for example, move them about and then leave them for some other activity.  Although it means following her around once or twice a day and putting things back, at least she remains occupied and apparently content with what she's doing.
For a long time, she continued to take an active interest in what was happening in the kitchen.  Although she was incapable of cooking, she still wanted a role in that part of her house.  It was very frustrating to both of us at mealtime during that period.
I had the responsibility of getting the food ready.  Whatever I was doing, it wouldn't be satisfactory to Elsie.  Because of her difficulty with communication or because of her own confused thinking, she was unable to put her own ideas and plans into action.
This frequently resulted in fits of crying, and made it very difficult to get the meals on the table and to get her to eat them.  Mostly, because of the fine food brought twice weekly by our Vietnamese family, all I had to do was to warm things up in the microwave oven.  However, it still wasn't possible to resolve Elsie's problem.
Early on, I came to recognize that attacking any issue with rational argument was futile.  Even backing off wouldn't resolve things, because once Elsie's cycle of frustration begins, nothing can stop it except exhaustion.
In recent weeks, however, her lowering level of acuity has left her less interested in what goes on in the kitchen.  She still sometimes tries to do things there, but mostly it involves taking plates out of the cupboards and silverware out of the drawers and leaving  them on the kitchen counters.  She still washes dishes from time to time, usually in cold water.  I wash them again later.
I get concerned when she turns on the stove.  She knows this is off limits.  If the problem persists, we will have to take the knobs off, putting a knob on only when we want to use the stove.  I put the dishes and silverware away at the end of the day.  I never follow her around cleaning up after her or in any other way indicate that what she's doing during these periods of activity is wrong or should be stopped.
For, I know, what seems meaningless to me may be important to her.  I never want her to feel demeaned.  And yet, circumstances continue to demean her.
Her occasional incontinence has forced a major change in the way she's treated.  She no longer has any privacy.  We insist she wear diapers during the night and frequently during the day.  This means that each time she gets up during the night to go to the bathroom, I must accompany her to pull down and pull up the diapers.
At times she isn't aware where the toilet is, so I must direct her to it.  Occasionally she is physically unable to bend to seat herself on the toilet.  Often, under such circumstances, she will resist and begin crying if I try to bend her to get down to the toilet.  This becomes a real concern for someone with back problems such as I can have.
Getting her back into bed can be a problem, especially if she finds herself unable to move her legs up into the bed or to readjust herself in bed.  Frequently I must simply allow her to fall into bed in any position she happens to land, covering her as best I can.
In those times when our efforts to adjust her have resulted in a crying spell, she can end up sobbing on the floor in the fetal position, and I have no option but to cover her with a blanket until she's slept for a bit and has awakened in a more compliant mood.
It becomes increasingly difficult to treat her as a person rather than as a patient, as her ability to function as a person decreases.  And yet, the primary purpose of keeping her here at home, which we are determined to do, is to respond sensitively to her as a person.  We want her to feel comfortable in her home surroundings, to realize she remains a part of the family, surrounded by personal love and care.
We are involved in a constant balancing act, trying to administer the anti-psychotic medicine in such modest doses that it keeps her calm but doesn't render her unaware of her surroundings.  In the back of our minds, we know she can't be allowed to become so frantic that she runs away, is constantly screaming, becomes violent to those around her, or breaks windows, or in some other way threatens to seriously damage the apartment.
We've experienced all these, things, and we know that if  they are allowed to persist, we can't keep caregivers in our employee.  We couldn't maintain a compatible atmosphere in our apartment complex.  In other words, we couldn't keep her at home.
Another latent threat is her increasing proclivity to get up and wander around in the middle of the night.  Until very recently she slept quietly through the night, getting up a time or two to go to the bathroom and returning by herself to bed.  By going to bed a little early myself, I got a full night's sleep under such circumstances.
But this past week, for the first time, she's become restless at night, getting up every hour or so to do meaningless things.  Even when she does get back to bed, she may sit in the bed for a prolonged period.  Coupled with the need for me to get up to lower and raise her diaper, I no longer can get a full night's sleep.
During the day, I am less functional.  Unless I am able to recoup my strength by napping or resting during the day, I go into the following night at less than full capability and a downward cycle begins. This again threatens our ability to keep her at home.
I am extremely grateful to Elaine for devising the program to give me more time off and to help me keep up my physical and mental strength so I can cope with this for the long haul.
Currently, I am the caregiver on weekends and at night, but in theory at least I can call for help any time I choose.
As a practical matter, I can't overload this system.  Elaine hasn't had full success in assembling her team.  And I must take into account her physical and mental capabilities as well as her good-hearted desire to take the burden from me.  We are in the process of testing how the new system will work in practice.
I had a good sample this past week as Elaine spelled me off for two days and one overnight.  I went to the Siletz log cabin to be with Bill, Janell and family for the first and only time this summer.  I hadn't thought I would get even that.
The weather was perfect.  Bill and I felled and cut up five big trees, enough stovewood for the entire next summer.  I've done this chore at the log cabin every year, although in recent years I haven't had the energy to do it by myself.
I really had to face up to how drained I've become as I grew exhausted at the end of the first day at the cabin.  I got the first full, good night's sleep in months.  I still hadn't recouped my strength as I headed for home.  Being away made me realize I must do more of this.  I'm scheduled to attend the Chemeketan Outing at Mt. Rainier with Steve and Yan week after next for three days.
Perhaps the most difficult part of this new phase of my life is the realization that I must now begin to develop a life of my own.  After so many years of being able to share my thoughts and feelings with Elsie, I feel lonely.  I am appreciative, however, of the great support I have from family and friends and to Elaine for attempting to care for my needs as well as Elsie's.
The plan to have Elaine move into a nearby apartment included the option of my having a place I could go to be alone, to rest and work.  When that plan was abandoned, I was forced to come up with an alternative.  I had a plan of last resort.  We have a small room a few feet away from our apartment which we use for storage.  It holds tools, a freezer, our camping gear -- all the stuff we'd normally have in a basement.
It has a nice window and a little space heater.  I determined to clear the room out and put in a sofa.  We had another problem to solve with the plan to have Elaine or someone else spend the night caring for Elsie.  They would need a place to sleep.  The hide-a-bed in our den was totally inadequate.
We solved two problems at once by moving the hide-a-bed sofa to the utility room and buying a fine, new futon in the den, which Elaine finds to her liking.
As for me, the new arrangement fits my needs nicely.  In my utility room hideaway, I'm far enough away from the apartment not to be under foot.  After the first day, Elsie has stopped coming to look in the door to see if I'm there.  But I'm close enough to be called to the phone or if I am needed in any other way.  It makes an ideal place to write on my computer, which I am doing at the present time.
The past six months have seen an escalation in her disease, a disheartening slide into ever new levels of incompetence and confusion.  And yet, the past six months have been an amazing period of adjustment, of coping. 
I truly feared our return from Palm Springs, knowing I would be thrown into a new and more difficult era of coping with Alzheimer's.  But answers, sometimes almost providential answers, have been found to each new problem.
Elaine was brought to us, with her insights, her compassion and her dedication to Elsie.  And Elaine brought others in her wake, all competent people whom Elsie likes and who like Elsie.
I've moved beyond feeling the full responsibility for a disease I dreaded and didn't fully understand and an understandable concern for my ability to continue my life and activities.  At the end of six months, I can, for the first time, look forward to having a few days of summerlike enjoyment on my own.  I am able to continue to work in the community, to have time to have lunch with friends, to attend my breakfast church meeting, to write my weekly newspaper columns.  In the midst of despair, I have hope.
And I have the satisfaction of knowing that Elsie is getting the best possible care.
Elaine assures me that the worst lies ahead.
Things will happen I find difficult to imagine and really don't want to know about now.  I will find my physical and emotional limits strained, I have no doubt.
But I also believe, on the basis of what the past six months have brought, that resources will be made available to me to deal with whatever transpires.
As I look at Elsie and what has happened to her in the past six months, I'm grateful she no longer is so aware of her predicament that she no longer spends time in anguish over her inability to find things to do.  If there is no way to relieve her of this terrible affliction, the most I can hope for is her declining awareness of what it is doing to her.
Christianity doesn't promise us a rose garden, but it does teach us how to respond to what comes to us in life.  Keeping our focus on how best to respond will take us through the next six months and however many more six months lie ahead before this is lifted from us.  Amen.


Chapter Thirteen
August 5
I vowed I'll never put Elsie into a nursing home or any other institutional environment.  Like many of the vows I've made since her Alzheimer's began, I look at this at times and wonder whether I'll be able to keep it.
When I think of my dear wife awakening in one those rare moments of total awareness, finding herself in strange, impersonal surroundings, I renew that vow with all the fervent dedication I can muster.
But even so, I can't stop the steady and inexorable deterioration that brings caregivers to the brink of desperation and forces them to institutionalize their loved ones.
If events of the past week or so haven't brought me nearer a decision to put Elsie into a nursing home, they have brought the nursing home closer to us.  In fact, this past week I finally reconciled myself to the fact that our apartment has become a nursing home for Elsie.  Elaine and her staff are right.  Elsie must have the secluded, stable and controlled environment a nursing home offers. We will provide it for her.
I guess I so wanted Elsie to be a part of my life outside the apartment and to participate in family and social activities, that I pushed her far beyond the time she was capable of enjoying them.  Time after time, I would find excuses not to recognize the reactions she would have later -- the crying and recriminations -- as the letdown that followed her efforts to appear normal.
Even such a traditional and ordinary activity as walking with her friend Peggy in the park brought a reaction later.  Having our friend Marian Lewis over to dinner on Thursday nights -- something we've done whenever we could -- was followed later by a setback.  Normal animated dinner table conversation no longer included her, of course.  Now, it just stirred up confusion in her mind.
Our care team made it plain that the medicine to calm her would have no effect if it were countered by such stimulation.
Son Dave dropped by the other evening for a few minutes to discuss his tree farm.  We paid for that stimulation after he left. Even telephone conversations could set her off.  A call from our daughter Nancy about a family problem kept me on the phone for twenty minutes in Elsie's presence.  Elsie was crying as the phone conversation ended.
"Damn, darn," she said.  I've never heard her use such language.
Once I determined to turn our apartment into a nursing, home environment, I had to begin not by convincing our staff but by convincing me.  Intellectually, I know what I must do.   Emotionally, I still forget and trigger problems.
For example, we were eating a meal with son Dave recently when the phone rang.  It was Clarilyn Philley Anapohl from Baton Rouge, Louisiana calling to ask after Elsie.  Clarilyn is one of our oldest and dearest friends, dating back to World War II days.  I took the call in the front room and filled Clarilyn in on our problem.
Of course I should have left it at that.  But I couldn't bring myself to end the call without asking Elsie if she wanted to talk with Clarilyn.  Certainly she did.  I asked Dave to bring Elsie to the phone.  Elsie headed the opposite direction.  She didn't know where the phone is.  She couldn't move her feet properly to get her started the right direction.
When she got to the phone, she couldn't hear the connection.  By the time we got her to a more clear telephone instrument, all she could say was "Hello, Clarilyn."  Poor Clarilyn, on the other end of the line, having some idea of the difficulties we were having, began saying kind things to Elsie, but by this time Elsie had lost it.  She was crying and unable to continue.
The call ended disastrously with my being forced to terminate it as Clarilyn told me she would write what she had to tell us about her life in Louisiana.  It was an hour before we had Elsie calmed down enough to simply sit in a chair.
I visited her friend Peggy yesterday, along with Marian Lewis.  Peggy came this morning, the time she usually takes Elsie for a long walk.  Peggy visited calmly with Elsie for just a few minutes, as she would in a nursing home.  Then she left.  Marian won't be coming for dinner.
I visited my friend Paul Harvey at a nursing home this week.  As I came through the lobby I saw all the little old ladies sitting in their wheelchairs with their heads lolling.
For the first time, as I passed them, I said to myself:  there's Elsie.  This is the environment in which she now belongs.
But turning our apartment into a nursing home ward means another major adjustment in the way I view my home.  I no longer come home to a wife.  I come home to a patient and then take my place as the de facto nurse when our other caregivers leave.
Increasingly, I am unable to relax and enjoy my home surroundings while I'm there.  If I'm going to create a nursing home environment in our apartment, it must be at the expense of the activities I normally enjoy there.
No more television.  Oh, she'll let me watch [missing] or the Lawrence Welk Show; these programs don't seem to seriously disturb her.  Occasionally she will submit to an old movie, something from the 1930s or a film with Fred Astaire and Ginger Rogers.
Elsie becomes anxious, however, if I try to watch the TV news -- except perhaps for the weather forecast.  Usually there isn't time for watching TV anyway.  I need to get Elsie to bed early, if for no other reason than she gets bored in the evenings.  It sometimes takes a long time to get her to bed and to keep her there.  I also must get to bed early because I'll be up several times during the night -- periods of undetermined length, depending on how long it takes to get her toilet chores finished and put her back to bed. 
Interestingly enough, I find I don't miss the TV much.  It was mostly mindless and irrelevant anyway.  Elsie is relevant.
I find that reading a book -- a big, long book -- is a great substitute for TV.  For one thing, I can pick it up at odd times.  For another, it doesn't inject itself into Elsie's environment.  I keep another book near at hand, to read to Elsie.  I know she doesn't listen much.  She usually drifts off to sleep quickly after I start.  But I still like to pretend I'm entertaining her, that we are having a good time doing something together.
Because life at home is totally routine in deference to her needs, I am having to find ways outside the home to create a new life.  I went to a movie by myself for the first time last week.
I talked over my situation with son Dave as we climbed a mountain in the Little North Fork country.
Henline Mountain is just over four thousand feet tall.  The trail to the top rises 2200 feet.  I needed that to prepare for my three days next week at the Chemeketan Hiking Club summer outing at Mt. Rainier.
Dave, like some of my other friends, inquired as to whether I was giving any thought to my life after Elsie is gone.  Was I thinking about marrying again?  He suggested I would be eligible material, given the ratio of widows to widowers.
I told him, as I have others, I have no time for such thinking.  I'm concentrating on Elsie while I have her, even if all I have is a shriveled physical presence of what she once was.  I have that fine picture of her in our living room to remind me of how she was.
I threw Dave off a bit, however, by telling him the joke about the man who was asked by his wife if he would marry once she was gone.  He thought for a moment and then said he supposed so.  She asked if he would give his new wife her piano.  He mused again and said he supposed so.  She asked if he would give his new wife her set of golf clubs.  He said, no, she's left-handed.
If I'm forced to build a new life, it will be an independent one.  When Elsie's gone, I want to be as self-reliant as I can be.  I want to make any decisions about  my future  from the base of my own independence rather than feeling it necessary to rush into a new relationship to fill a void.
I told Dave I was looking forward to being a better grandfather.  That's not as easy as it sounds.  To be a good grandfather, one must seem relevant to one's grandchildren.  They must want to do things with a grandparent, enjoy their company.
I've given that problem some thought.  Some of our grandchildren are being  home-schooled.  Maybe there's a role for me there as a teacher.  I've served as a mentor to children in Salem schools on several occasions.  I enjoyed it, and I really got to know the kids I tutored.
Surely there must be areas of curriculum that my grandchildren need and in which I have some competence.  I will be giving more thought to this in coming months and will be anticipating such a role.
I've been amazed at how little emotion I show in connection with Elsie's illness and her problems.  I guess when you live so close to such a great tragedy for so long, and it kind of slips up on you gradually, you don't have many emotional peaks or valleys.
But as I talked with daughter Nancy this morning on the phone from Olympia, I told her I had lost my wife.  I choked up as I said those words to our only daughter.  Telling it to Nancy made me see what's happened in more depth, with more clarity.
I've done what I hoped I'd never have to do.  I've put her in a nursing home -- within in our own apartment.
 

Chapter Fourteen
August 14
I'd been looking forward for a month to spending three days at the Salem Chemeketan Hiking Club summer outing at Mt. Rainier.  Son Steve and his wife Yan would be there.
I was scheduled to leave Monday morning.  I had Elsie alone on Sunday.  She had a poor day, terribly distraught, angry, uncooperative.  Elaine phoned during the evening to report that Judy, a member of her caregiver team, couldn't stand the emotional pressure of dealing with Elsie and wanted to quit.  Elaine said she'd talked Judy into working Monday and Tuesday.
Sunday night Elsie was worse.  It took an hour in the middle of the night to get a clean diaper on her and to get her to bed.
Finally, in desperation, hoping to get some sleep before my trip, I moved to the futon in the den and slept for three hours.  When I awoke, I found Elsie had taken off the diaper and had soiled the bed.  At 6 am I changed the bed, washing the bedding and made breakfast, awaiting Judy's arrival.
She didn't come.  Panicking, I telephoned son Dave and his wife Janet.  Janet said she would be over from Corvallis at 11 prepared to stay the day.  Elaine assured me she could handle the schedule.  I left for Mt. Rainier with foreboding.  I told Elaine I would telephone the following afternoon at 5 and would be prepared to return that night if the situation hadn't improved.
I was greeted at the Chemeketan camp as I knew I would be, with an open-armed welcome by all the friends with whom we've been sharing these outings for years.  It was reassuring to see the seventy­foot-long yellow tent housing the pantry, kitchen and dining area.  I pitched my small tent near Steve and Yan's.  I enjoyed a hearty dinner and the first night of uninterrupted sleep in weeks.
The next day we hiked through fields of wildflowers near Paradise Lodge on the western side of Mt. Rainier.  Always in the back of my mind, however, was that 5 o'clock phone call and the prospective rush back to Salem.
At 5 pm I listened carefully to Elaine's glowing report on the phone.  ''We're having no problems," she said.
"I'm not sure you'd tell me if you did," I replied.  I knew she felt I needed to get away for a few days.  I questioned her in detail.  I couldn't hear any sign of trouble at home.
I went to another great dinner at the dining tent, reassured.  The following day, Steve, Yan, and I climbed Dege Peak on the east side of the mountain.
We were rewarded with magnificent views of Rainier as the clouds parted.
Being away from home allowed me to think more clearly about our situation.  I was trying to create a protective, detached atmosphere in our apartment, something like an excellent nursing home would provide.  And yet, Elsie was still unsettled, unhappy, uncooperative.
Was I part of the problem?  Was it possible to provide a detached atmosphere for her while I was there to remind her of her former life?  I knew that nursing homes require the spouse to stay away for at least the first two weeks.  Should I move out, and if so, where would I move?
I determined that if, upon my return home I discovered that things had gone well in my absence, I should consider removing myself from our apartment.
I got home earlier than expected on Thursday.
Instead of spending my precious third day hiking around another part of Mt. Rainier, I decided to drive all the way to our log cabin on the Siletz river for the day, where I knew the rest of our family was assembled, including six grandchildren.
I felt reasonably refreshed after three nights of sleeping in the woods, and there were all those good Chemeketan meals.
When I got home from my day at the Siletz I found Sylvia and Elaine in the front room.  Elsie was asleep in the bedroom at 6 pm.  Things had not gone as well as Elaine had told me over the phone.
It turned out that Elsie had become aggressive.  I found the remnants of chocolate ice cream spread around the bedding where she'd thrown it while Elaine was trying to give her medicine.  Our two remaining caregivers were about at their wits' end.
Elaine suggested we had reached the point where we had to consider sending Elsie to a nursing home.  "I've checked with the nursing homes that I'd recommend," she said.  "There's a vacant spot in the Marian Home at Sublimity in the ward reserved for distraught and potentially violent patients."
I'd told all the family in the previous two days that I still was determined to keep Elsie out of a nursing home, but if I was threatened with the loss of Elaine, I might be forced to reconsider the nursing home option.
Elaine knew my feeling about nursing homes.  She watched my reaction.  I needed  time to think.  I didn't  feel competent to make such a far-reaching decision by myself.
I told Elaine, "I want to take you to the Siletz cabin tomorrow so you can talk with my children.  I want you to explain the options to them and the reasons why you are ready to recommend a nursing home.  I don't want them to hear those reasons second hand from me."
Our children have confidence in my decisions, but when it came to opting for a nursing home, I wanted them to be able to question Elaine personally.  Sylvia said she would stay with Elsie.  Sylvia is a jewel.  She not only is devoted to Elaine, she's become devoted to Elsie.
I ran some necessary errands late that afternoon, and upon my return I found that Elaine and Sylvia had agreed upon another plan. 
"I can find a third person who will help us out," Elaine said.  "Among us, we will be on duty from 8 am to 5 pm every day and from 10 pm to 6 am every night."
Then she added, "This will require that we get a hospital bed, put it in the living room and keep Elsie in bed, applying restraints as necessary."
Elaine told me I'd have to get my doctor's permission to use restraints.
Restraints!  That means a strait jacket.  Elsie in bed all the time?
"Elsie is ready for this," Elaine assured me.  "She can't walk unassisted.  In bed, she will be easier to control."
"We can't leave her on the floor all night as we've been forced to do," Elaine explained.  "It takes two people to move her, two people to feed her.  We must put her on a liquid diet because at times she forgets how to swallow."
I absorbed all this one shock at a time.  Sure, I knew all these things were coming.  I'd read the literature.  But I still wasn't ready for them, not for my Elsie.
And yet, if I put her in a nursing home, she'd be handled exactly that way, kept in bed under  restraints.  And I wouldn't be there to see what else was happening to her.  Also, I wasn't able to shake that persistent concern that she would wake up in a nursing home during her periods of rational consciousness and find her worst fears realized.
I was forced to come to terms with what creating a nursing home atmosphere in our apartment really meant.  I was ever so grateful to Elaine and to Sylvia for giving me this option.  Even so, I wanted Elaine to tell the whole story to our children.
Elaine opened the day's newspaper and found a classified ad for a hospital bed, for $350.  She said that was a bargain price.
As Elaine and Sylvia left that night they expressed some concern about Elsie's condition.  She was lying on her back in bed, breathing shallow.  We thought we could detect a rattle in her throat.  Sylvia said, "She may have contracted pneumonia while lying on the floor at night."
When they left I looked at my poor wife.  I was reminded of the final hours I spent with my mother as I waited for her to pass away in 1972.  She'd lain all night on the floor of her retirement center apartment before they found her.  She contracted pneumonia.  They never were able to bring her back to health.
I crawled into my sleeping bag on the futon wondering whether the big vacuum in my life which will occur when Elsie goes was about to happen.  It loomed large and dark in my mind.  I want all this to end for Elsie as quickly as possible, but in my heart I dread that day.
Elsie stirred awake at 11 pm, and I tried to get her up to go to the bathroom.  She had trouble moving her feet.  She wasn't comfortable with my efforts.  I asked her what she wanted.  She replied, "Another husband."
For some reason, she fears being laid down in bed.
I've learned that bringing the pillow up behind her head helps.  Gradually I calmed her.  I reminded her I was home again.  I even was allowed to cuddle her a bit and to kiss her forehead.
She relaxed and went back to sleep.  She was still asleep when Sylvia arrived at 8 o'clock the next morning.  She'd more than slept the clock around.
As for me, I got a good night's sleep, knowing she would still be there in the morning, and believing that I really wasn't the problem.  Maybe I was part of the solution.  Maybe my being home again helped her get her first good night's sleep since I'd been gone.
Elaine's and my trip to the log cabin and the family on the Siletz was everything I could hope for.  For one thing, it was fun to show Elaine this place she'd heard about so often.  She said it was even better than she expected.
It really is quite spectacular to drive through the tall grass along the Siletz River on a road that isn't a road at all, through the water where the beavers have built their dam.
Then there is the half-mile hike along the river trail, over the roots of the huge spruce trees and around the big hill to the pasture.  There's a bench beside the trail at the bend of the river where we first get a view of the pasture.
Further on is the first cabin.  We found Dave and Janet here, surprised to see us. The family conference took place in front of Bill and Janell's log cabin on the other side of the pasture, with the sounds of grandchildren playing in the background.
It was a rewarding session.  Most of them had met Elaine, but here they got to understand the depth of her compassion and commitment.  Nancy spoke for them all in her wonder that Elaine would be willing to take such a difficult assignment.
"I really appreciate your willingness to do something this hard," Nancy said.
Dave added, "We could all say that."
Elaine responded, ''I've talked this over with your Dad.  I've had a lot of things in my life to prepare me for this.  This is what God has called me to do.  When the phone call came about Elsie, God gave me the strength and the capacity to understand what I had to do.  God carries the burden.  Yes, when I get away, I'm just exhausted, but I get a great deal of satisfaction in knowing I'm doing what needs to be done for Elsie."
I was pleased to have the family hear Elaine explain her assurance that God has called her to this work
Elaine and I talk about this frequently.  The family needed to hear it.
I took notes on the conversation, most of which I can't read now.  I guess I was too interested in what was being said to record it properly.
It's been hard for the family to realize how fast their mother's condition has deteriorated.  Elaine's explanations helped.
She told them about Elsie's frequent falls.  The previous day Elsie sat down and missed the chair.  Elaine and Sylvia fear she will break a bone.  What's more, she resists being helped.
"The hospital bed is the safest means of protecting Elsie," Elaine said, adding, "we can't know what Elsie's reaction will be.  Judging from what's happened thus far, Elsie may be belligerent.  She may make so much noise, we can't keep her in the apartment."
Bill suggested, "Why don't you use a wheelchair?"
Elaine responded that a wheelchair won't work.  "I couldn't physically get her in and out of a wheelchair. I can't even move her up in bed so she can be changed.  The hospital bed, with its capacity to raise and lower patients is the better alternative."
Someone asked, "Would she be in bed all the time?''
"Yes," Elaine said, adding, "Elsie is losing strength as she deteriorates.  She no longer wants to walk.  "She suddenly may have manic fits of strength, but these just weaken her further."
Elaine explained, "When Elsie says she wants to go home, she means she wants to go back to her condition before Alzheimer's.  I can take her through the apartment, showing her mementoes to prove she is home, but she will have forgotten thirty seconds later.
Nancy suggested, "If she won't eat, this maybe her way of attempting to die."
Elaine said, "We won't force feed her.  In a nursing home they might try to feed her intravenously.  She needs food simply to remain stable, to cope with her daily condition. Absence of food will increase her manic problems.  We will begin giving her Ensure, a liquid diet with rounded nutritional values," Elaine said, adding, "It took Sylvia an hour and a half to feed her a cup of macaroni recently."
Elaine asked that if we are forced to put Elsie in restraints that the family members come to see what that is like.  "It's an imposed fetal position," Elaine explained, "much the same position Elsie retreats to when she's on the floor."
As our session together neared its end, Nancy asked Janell to take Elaine for a short walk so she could talk with the family.  After Elaine left, Nancy said, "We're not paying her enough.  I don't want to get as my inheritance money that should be going to Elaine."
I explained, "I've had trouble with Elaine.  As long as she's working for God instead of for me, she insists on taking a minimal amount of money."
When we brought Elaine back to our circle, under the consolidated family pressure, the family let her know, "We expect to pay you for your services."
I was pleased I'd taken Elaine to the Siletz.  It was the right setting for such a discussion.
So, we've set our course in yet another direction, complicated by the uncertainty about the direction of Elsie's condition and the uncertainties associated with the hiring of help.  While the eventual end of Alzheimer's is certain, its path is diabolically filled with uncertainties along the way. 


Chapter Fifteen
August 24
My two-day camping trip with son Bill and his family this week culminated in an afternoon of carnival atmosphere in the resort town of Seaside, an unlikely conclusion.
We'd hiked to Cape Falcon the previous day and climbed Neahkahnie Mountain that morning.  I left Bill at Ecola State Park after lunch at the start of his eight-mile hike around Tillamook Head.  That left me with Janell and the two children to enjoy the creature comforts and entertainment of Seaside for the rest of the day.
Grandson Ian obviously wanted me to rent a dual­tricycle to pedal around the city for an hour, so I graciously submitted.  That still left plenty of time for shopping.  I looked for gifts for Elsie and Elaine.  I reluctantly concluded Elsie no longer would understand the significance of anything I brought her.
But I needed to express some gratitude to Elaine, whose willingness to stay overnight with Elsie made my two-day idyll with Bill and family possible.
None of the gimcracks and souvenirs in the Seaside shops seemed acceptable.  Elaine enjoys books.
But what kind of book?  I asked at the Seaside book store for books on religious and philosophical subjects.  I was referred to a small shelf, a paltry selection.  I was discouraged.  And then I found a tiny volume by C.S. Lewis entitled "A Grief Observed," and I knew I had what I wanted.
I only had time to scan the contents.  As a fan for 'many years of C.S. Lewis, I really didn't care what it was about.  I packed it away for delivery to Elaine upon my return.
A few days later Elaine brought the book back to me.  ''I think you'll want to read this," she said.
There have been many times in my life when I feel I've been led.  This was one of them.  I'd been taken into a little bookstore near the Promenade at Seaside to find a new kinship with C.S. Lewis.
His tiny book (only eighty-nine pages of large­sized print) was written from the same motivation that is carrying me through the writing of this book.  It is a needed therapy -- something to help hold me together, to give coherence and meaning to my life while I'm going through an especially traumatic period.
As those of you who have enjoyed C.S. Lewis's works probably know, he was an Oxford don and later a Cambridge professor.  When he came to rediscover God and Christ in his life, he put his thoughts into writing.  His books form an intelligible and entertaining way of describing religious faith and experiences.
He was a bachelor until his latter years when he married an American poet, Joy Davidman Gresham.  In the three years of their marriage, they found all the pleasures and happiness of wedded life.  Joy had cancer when they were married, but it went into remission.  Then suddenly it flared to life, and she was gone.
He was devastated.  How could fate, how could God have snatched away his happiness, his life, so soon after it was fully opened to him?
Searching for a way through his grief, he began writing about what was going on in his mind and soul.  Every day he chronicled his feelings in notebooks he found around the house.
His inconsolable state is now recorded in this small book, to be a consolation to others.  His readers can measure his battle with grief against their own.
I was forced to face up to my own struggles with grief in the discovery and in the reading of his book.  Just as he found consolation in writing, I became more fully aware of how I've done the same.
Writing the story of our fifty-year-marriage in To Elsie With Love was a way of coping with grief as Elsie and I headed down Alzheimer's road of no return.  How grateful I've been as I've read and re-read the book to Elsie that she'd opened this avenue of dealing with grief by asking for the book.
How natural it seemed, when Elsie began entering the more difficult stages of the disease, to turn once again to writing, not only as a means of release but as a way of bringing cohesion, order and even some sense to all that was happening.  If I couldn't forestall it, I could at least try to understand it.  Perhaps that would lessen a bit the fear I had of this unrelenting force that was sapping the strength of my loved one and my life.
And there on the first pages of Lewis's story I met myself and my own feelings.
"No one ever told me that grief felt so like fear," he said.  "I am not afraid, but the sensation is like being afraid.  The same fluttering in the stomach, and same restlessness, the yawning.  I keep on swallowing."
So, I must face up to my grief.  I must confront it, confess it, and,  like Lewis, try to understand  it.  Perhaps that will make me conquer it.
I've been watching for grief during the past three years, dreading it, fearing that it would undermine my motivation.  If I've had little grief, perhaps it is because I can't afford it.  I must keep myself strong, dedicated, so I can continue to serve Elsie.  I haven't time for weakness now.
Will I suddenly become shattered with grief when Elsie goes and I no longer have a reason to hold it at bay?
I asked a close friend about that recently. He lost his wife to cancer a few years ago.  "Did you get most of your grieving out of the way during her terminal illness?" I asked.
He did his best to reply.  "You will find the strength you need," he assured me.  I came away understanding that grief and one's response to it is a highly personal thing.  I can't go to a magazine article or even another person and find a formula for responding to my grief.
For that matter, C.S. Lewis can't guide me by the hand through grief, either.  It's  just as well.  I wouldn't want to have his inconsolable grief, the loss of the loved one and lover so soon after finding her.
I've had a hard time feeling sorry for myself these past three years.  In fact, I can't feel sorry for myself at all -- at least not yet.  I can feel unbounded sorrow for Elsie and what she's going through.
But we had fifty years of marriage, and as To Elsie With Love attests, we found just how great marriage can be.  I was a child of the Great Depression.  In my life and career I found greater satisfactions and rewards than I ever dreamed possible when I was a youngster.
I was an only child of a broken marriage, but I went on to have a large, marvelous family of my own and now bask in all the blessings of those relationships.  And, oh, those grandchildren.
I was one who was spared by World War II, who came back unscathed from the bombing missions.  Me, feel sorry for myself?  How ridiculous.  No matter what price I pay at the conclusion of my life, I can never repay what life has brought me.  I owe.
Does this help assuage the grief I feel on the way home from helping son Dave with his forest property when I suddenly realize I won't be able to tell Elsie about what I've done that day?  Does it help when I discover a new park along the Coast and realize I never can take Elsie there?  I believe it does.
I also believe it helps that Elsie's incapacitation was slowly spread over three years.  I wasn't shut off from her caring and her companionship suddenly.  I gradually grew used to not having her respond as she once did.  I gradually was forced to become self reliant.
Until very recently I was being drawn ever more closely into her disease with her, becoming a part of Alzheimer's.  And then, thanks to my family and to the arrival of Elaine and her perceptive caregiving, I'm being allowed and encouraged to resume living a more full life, in anticipation of continuing alone.  C.S. Lewis writes of the time when, after enduring seemingly unending depths of grief, he  finally looked at the world about him and still found it was beautiful.  I haven't had to undergo that.  Thanks to the help I've been given, I always have continued to find the world beautiful and my work in that world worth doing.
Perhaps I paved the way for that myself by refusing to cancel all my community work, even when I could have justified spending all my time and attention on Elsie. I reasoned that Elsie and I have always been a partnership in doing the work the Lord has for us to do.  If Elsie is failing or is gone, that's all the more reason why I should continue to do our work ­- not just for me but for her.
And in doing that work, I was unwittingly aiding my own salvation.
I'm not home free.  Far from it.  I dread the time when Elsie will be finally gone and I'll be truly alone.
Elaine says I'm strong because I'm willing to keep Elsie here at home, to watch her deteriorate day after day.  Is there something masochistic in being willing to witness this terrible disease taking its toll?  Not for a moment.  If she has to endure it, surely I can at least watch it -- surely I should be there to help in any way I can.
I keep the photograph of my vibrant Elsie, in the full flower of her mature energies, on the bookcase. 
It helps. It's hard, however, to keep thinking of Elsie in the way I knew her, when all I can do is hold her hand and watch her emaciated face as she cries.
What an interesting coincidence, to have found C.S. Lewis's grief therapy as I am writing my own.  And how appropriate that I should find the book while looking for a gift for Elaine to thank her for using her experience and her compassion to care for Elsie and for me.
No one, not C.S. Lewis nor me, can tell another person how to deal with grief.  All we can do is recite our own experiences.
This book is the story of Alzheimer's.  Grief plays but a secondary role in that story.  It will go on after these chapters have ended.


Chapter Sixteen
August 28
As I look back on the August 14 chapter, I can hardly believe the transition that has happened in two weeks.
It's best to handle it chronologically.  Two weeks ago we were flirting with taking Elsie to a nursing home.  Elaine and Sylvia doubted they could cope with controlling or handling Elsie's panic attacks.  They hadn't been able to stabilize her medicine.
While they were willing to continue treatment here at home, they said they needed Elsie in a hospital bed.  While always willing to comply with their requests, I dragged my feet about the hospital bed, hating to see Elsie immobilized so.
We found an advertisement for an electric hospital bed, for $350, an amazingly low price.  A good used bed is about $1000.  They rent for $150 a month.  I sent son Dave out to buy it.
He reported back that it had no headboard, footboard or sideboards.  He came home without it.  As we continued our search for a bed, Elsie's condition began to stabilize.  She slept better at night.  She had fewer fits of crying.  The medication was having its desired effect.  I could sense a lessening of pressure on Elaine and Sylvia.
Perhaps the most stabilizing effect was our new policy of no visitors.  Many of her panic attacks and crying spells occurred after we'd  had  friends or family in the apartment along with conversations about what was going on in their lives.  Elaine told me, "What Elsie needs is to keep to her own world, and not have confusing outside ideas  brought within her range of hearing."
At the same time, Elsie continued her retreat.  She now could walk only with assistance, tiny, shuffling steps.  She paid less attention to her surroundings.  When she wasn't sleeping during the day, she sat tearing at newspaper.
The hospital bed search was getting nowhere.  Elaine and Sylvia went to look at the $350 bed and pronounced it useless.
About that time I got a copy of the Nickel Ads giveaway paper.  In it I found an ad for electric hospital beds,"$35. U-haul."  That seemed ridiculous.  I telephoned the number, in Estacada, about forty miles away.
The man explained he runs a medical supply company.  About three years ago he renovated the hospital at Silverton and replaced all their hospital beds.
He had the old beds stored in his warehouse.  He'd tried to give them away to a charity, but got no takers.  After all this time, they were taking up valuable space.  He just wanted to get rid of them.
He had about seven left, one or two of which were in good condition.  Dave came to the rescue again, taking a niece's old pickup to Estacada to pick up the bed.  I was hiking that day at the top of the Cascade Range with the Chemeketans.  I dreaded the return home, to find a big, ugly mechanical bed in my front room.
What I found, however, was a good looking hospital bed with wood headboard and footboard that matched our furniture.  Dave had fixed the electric plug, had checked out the motor and all mechanical parts to see they were working.  He and Elaine had cleaned it up.  Sylvia's daughter supplied the mattress.  The next day we moved Elsie into the bed.
She slept through the night.  The next morning when she awoke, she seemed more lucid than I'd seen her in weeks.  She looked around her and told me, "I'm afraid."
I explained to her that not only was she in her own apartment, the bed was guaranteeing she would stay there.
From the start, she was quite content with the bed.  Suddenly, life for Elsie became acceptable.  She hasn't had a crying spell this week.  Admittedly, a large part of that is due to her progressing illness.  She no longer is conscious enough of her condition to resent it.
Some of her docility must be charged to the medication, which she gets normally four times a day.  But we've been doing without some of the medication at night and she still seems comfortable and content.  She now knows she is safe and everything is being done for her.
I really can appreciate the value of the hospital bed now.  When she was in our bed, we had to wrap a restraint around her to be sure she wouldn't roll or get out of bed.  Now, we just raise the sideboards on the hospital bed.  She isn't capable of getting over them.
Her head can be raised easily to feed her or to give her medicine.  No more leaning over, straining to hold her upright while pushing a spoon towards her mouth.  Sylvia still gets her up for bathroom purposes and to sit on the davenport during the day.  But Elaine, who has back problems, needn't do this unless she chooses.	 Elaine has explained to me about the hazards of bed sores.  She is getting small plastic foam cushions to use in propping up Elsie so the pressure falls on different parts of her body.
All the pads and other supplies needed by Elaine and Sylvia are now housed on a table next to the bed, adding a sense of order and efficiency to the entire apartment.
Interestingly enough, I found that the hospital bed changed my own life dramatically. For one thing, I could now return to my own bed for the first time in weeks.  I'd been sleeping on the futon in the den, both to keep from disturbing Elsie and to get more sleep for myself.  With the restraint tied across the bed, I couldn't sleep in it anyway.
Now, not only am I allowed to regain the use of our queen-size bed, I also have the entire bedroom to myself.  Suddenly, I realized that Elsie never again will be in that bedroom.  For that matter, she no longer will be using any of the facilities in our apartment.
For months, I'd taken just the opposite tack.  I'd assumed the entire apartment was Elsie's, and I used it and interfered in it as little as possible.  If she wanted to rummage in the desk drawers and upset all the pens, paperclips and other paraphernalia there, let her. It gave her something to do.
We put all the knives in the kitchen out of her reach.  Important keys and documents I kept stored in a locked cabinet, but everything else was where she could get at it.  From time to time, I'd go around and restore some sense of order, but the apartment basically was hers to do with as she pleased.
I've always had the closet arranged so her clothes, rather than mine, were easiest to get at.  She has the largest dresser drawers.  Her needs determine the amount of bedding at night, and so on.
But now, for the first time, I realized I had, in effect, the apartment to myself.
I rearranged the clothes in the closet so hers are at the sides.  I put my shoes where they are easiest to get at.
I sorted out the drawers in the desk, throwing out all the stuff I didn't  need and arranging the rest conveniently.  I took some of the items out of the locked cabinet and put them where I can get at them.
While I still use my computer in the storage room I've fitted out for myself, I don't really need to do that unless I feel like it.  I can work at my usual computer station in the dining room without disturbing Elsie.
It almost seems harsh and unfeeling to start going on about life as though Elsie were not there, but I might as well get used to this now. It will make the transition easier when she actually goes.
Our family has decided we should all meet together at Timberline Lodge on the side of Mt. Hood for two days.  I agreed to make the arrangements.
We'll hike together, swim in the lodge's wonderful pool and have dinner in the luxurious dining room.  Free dinners go with our room -- this is the offseason.
We'll talk about Elsie, of course, but we're proceeding as though she already is gone. She'd want it this way.
I can do this with no regrets because I'm totally convinced that Elsie is getting the best possible care and attention.  Elaine, as usual, was right.  What Elsie wants now and for the rest of the time she's with us, is the security and comfort of being in that hospital bed.
When Sylvia arrived the other morning, Elsie waved at her from her bed and told her, "I'm glad you are here."  We're giving Elsie the greatest gift we can, keeping her in her own apartment.
When daughter-in-law Janell and granddaughter Karen visited her yesterday, Elsie showed no emotion.  She said a few unintelligible words and then detached herself.  She answers no questions for me.  She didn't for them, either.  We were able to talk in her presence without disturbing her.
She no longer admits the outside world into hers.  Admittedly, this makes it easier for me to deal with telephone calls and conversations with Elaine and Sylvia.
I will go to my doctor for my annual physical exam next week.  There's nothing wrong with me as far as I can tell.  Other than the fact that I always have a physical exam at this time of year, the major reason for the visit to the doctor is to confer with him about Elsie.
I want to spell out for him what we're doing -- that we are going to keep Elsie with us in the apartment until the end.  We don't want to involve her in the medical system, except to keep her comfortable.  I have Elsie's health power of attorney, and those are my wishes.  They would be hers too if she had the power to make them.
I want to be sure the doctor understands and accepts what we're doing.
As for our situation here, it can go on just as long as is necessary -- weeks, months or even years.  All it costs is money, and as the children have told me, this is what we saved our money for.
I'm going to end this chapter and go for a walk in the sunshine across the footbridge into Bush's Pasture Park, just as Elsie and I have done for the more than thirty years we've lived in this area.
I'm living in a suspended world, between having Elsie and not having her.  But at least that world has become stabilized.  I can live with that.
 

Chapter  Seventeen
September 6
It's 2 am and Elsie is mumbling in her hospital bed in the front  room.  I walk to the side of the bed and look down at her.
I gave her the usual medicine at 8 pm.  There's nothing else I can do.  I tell her it's the middle of the night and Sylvia will be here in the morning to look after her, but I have no idea whether she understands me.
She closes her eyes and the customary deep breathing resumes.  She'll be quiet until morning now.
I'm in the midst of a learning process as I readjust my thinking about her future.
A month ago she was failing fast.  I believed the end was near.  When the opportunity presented itself, I talked with our children for the first time about the final services.  Long ago Elsie and I discussed this and decided we want to be cremated and our ashes distributed at our Siletz River wilderness area.
I admit I took the lead in proposing that, but Elsie agreed in every respect.  We don't believe in our taking up room on the planet with our last remains.
Let our ashes provide nutrition for the planet instead.  I not only found the children accepting of this idea, Steve said he'd been thinking about the same thing for Elsie.
No funeral.  Instead, a memorial service at our church, a place where we can celebrate Elsie's life.  I've been to more funerals than I care to these past few years.  The ones I've found to be most meaningful have had a table at the front holding memorabilia from the person's life.
I could envision having Elsie's Meals on Wheels pin there, her Chemeketan shirt, her Service to Mankind award plaque.  I'd want the wonderful picture Dr. Walt Achterman took of her at the 1968 AFS banquet blown up at the center of the table.
On our dresser is the teddy bear called Grandpa Wes that Elsie gave me years ago.  It has a Chemeketan shirt on and glasses.  Originally, it had a newspaper in its paw.  Cuddled next to it is the Red Riding Hood doll I bought Elsie.  I'd want those dolls there, in each other's arms.  One of the children should give the eulogy, along with the pastor.
I passed my physical exam with no problems, as expected, and I talked with our doctor about Elsie.
I told him I won't be asking for any medical attention or treatment for her.  He accepted this and provided me with a number of prescription renewals for the anti-psychotic medicine that keeps her stable.  My final preparation was to have a preliminary talk with a funeral director, a friend who's in my Rotary Club.
But with the hospital bed and other adjustments, Elsie's downhill slide has stopped.  She not only seems stable but comfortable.
Three things have come together to provide this.  The hospital bed not only makes her care easier for Elaine and Sylvia, it provides a safe haven for Elsie.  Her hospital bed is now the limits of her world.
The no visitors policy reinforced that, eliminating the confusing outside information that came to her.  I'm careful now not to tell her what I've been doing.  She sees only family members now, besides Elaine, Sylvia and  me, and not many of those.  They stay just a short time.
The third key to Elsie's stable condition is that we've mostly mastered the administering of the medicine.  I've tried to convince myself we give her the medicine for her own good and not just to make our job easier.  But I can't really be sure.
In any event, thoughts of final services --- and what might come afterwards -- are retreating in my consciousness, replaced by a new analysis of what it means to provide  continual care for a loved one who's lost her mental and most of her physical capabilities.
As usual, Elaine and Sylvia had prepared me for what is happening, but, as usual, I preferred to look at what I saw rather than what they told me would occur.  Elaine said there would be slides followed by plateaus.  We're on a roller coaster.  Like a roller coaster, each climb is more shallow until we reach the end of the run.
But as Elsie feels more comfortable with her surroundings, it appears this plateau may last a long, perhaps an indefinite, time.
So what am I to think about all this?  After all, my emotions have been on the same roller coaster.  A few days ago I was preparing myself for the end, almost anticipating it.  For months now, I've told myself and others that I wanted Elsie to go as quickly as possible.
I told them that Elsie would not want to be in the condition she is now.  She'd  want it over, and I wanted what she would want.  Five months ago, Elsie told Elaine she wanted to die.  I accepted this, but at the same time, I dreaded her finally going.  I dreaded the emptiness of the apartment.
I've asked myself over and over until I was afraid to ask myself again, how a good and loving Lord could allow Elsie to go through what she's been put through with this disease.
I appreciate the miracle that brought Elaine and Sylvia to us.  I'm grateful for the fact that our apartment is an ideal setting for patient care, for our Vietnamese family bringing me food twice a week.  But none of this can compensate for what's happening to Elsie.
This past week, however, I've been forced to face up to the fact that Elsie is, if not happy, at least relatively content.  If she no longer understands how bad off she is, is she really bad off?
When I greet her in the morning, she makes an effort to smile at me.  She is cooperative with me and with Elaine and Sylvia.  She seldom makes an effort to leave the bed.
A few mornings ago, however, when her restraint wasn't tied correctly, she did manage to slip out of bed.  We found her huddled on the floor, not saying a thing.  Sylvia said she acted kind of smug about her escape.
One morning she had tangled herself with a bed railing.  As I was trying to move her she complained, adding, "Careful.  I don't want to die."  I can no longer be sure she says what she means, but that statement was significant.
She no longer is acting as though she wants to die or intends to die.  Her every need is cared for.  She feels at home and comfortable.
Should I continue to want her to die?  Perhaps not.
I'm in the  process of reviewing my thoughts and feelings about what constitutes a reason for living.
As someone who  has earned his livelihood through intellectual pursuits, I, along with most of humanity, assume that having one's mental capacities is essential to having life be worthwhile.
And yet, I've known  many  families where one of the children has had  Down's Syndrome or some other form of mental retardation.  I've seen parents care for  these children, make them a part of their lives.
I've always thought well of such parents for making such a sacrifice, as I envisioned it.  I've  never really understood what it would be like to have such a handicapped person in the family.
When  the parents of mentally handicapped children campaign for their "rights" and for equal treatment, I join in their cause.  But I somehow think we are doing them a favor.  It's  been hard for me to think of non-productive members of our society as equals.
Strange.  Here I am a confessed Christian, mouthing the Lord's message that he sees all creatures as his own and loves them equally, and yet in my own, private vision of the world, I accord some of them second-class status.
As I stood looking down at Elsie in her hospital bed, her mouth open, breathing heavily, most of her mind gone, I realized I've been doing the same thing to my own, dearest loved one.
Instinctively, and with  the help of Elaine and Sylvia, I've done the right thing.  I've made her comfortable and safe.  It's past time that I realized that if the Lord can love and accept Elsie fully as she now is, surely I can do the same.
It occurs to me that one of the hazards of being a self-centered human being is the danger of treating love and compassion in human terms rather than in the Lord's terms.  We tend to think that if human beings, and animals and trees aren't serving our needs, they are a burden and are somehow expendable.
Seeing Elsie, it came over me more fully than ever before that the Lord is Lord of all creation and it isn't my role either to deny it or to judge it.
No.  I can't understand why Elsie had to have her powers stolen from her.  I can't understand why famine and pestilence are let loose in the world.  I can't understand why I was allowed to complete my thirty-five bombing missions over Germany in World War II while row upon row of white crosses I saw in the American cemetery at Cambridge in England covered the graves of comrades who had their lives snuffed.
But I do understand that my calling isn't to question or to understand these larger mysteries, but to love and care for Elsie as she is now.  The Lord loves her as he finds her.  Of course, I'll do the same.
How grateful I am to Elaine and  to Sylvia for showing me, through their example, how to love Elsie as she is.
Elaine has told me she admires my willingness to keep Elsie at home and to tend her.  She tells me that in many of the Alzheimer's cases she's tended, the husbands have walked away from the responsibility, detaching themselves from the care or sending their wives to nursing homes.
If I didn't have Elaine and Sylvia and the resources to keep Elsie here, I'd have to do the same.  I can no longer care for her.  This requires professional skills.
I had to give her medicine in the middle of the night recently.  To do so, I rolled up the head of the hospital bed.  'Two hours later she was crying.  She couldn't  tell me what was wrong.  I stood there helpless, inadequate.  Then it dawned  on me.  I hadn't rolled the bed down.  When I did, she went back to sleep.
I must confess that the main reason I've avoided a nursing home was my unwillingness to have her reach one of her periodic moments of rationality and realize she was in an institution.  I didn't keep her home because I wanted her near me in her present condition.
It's pained me to watch her, to see her deteriorate.  Now, however, I'm getting new insights on this phase of our struggle with Alzheimer's.
Granted, Elsie can no longer provide me with any of the satisfactions of our marriage.  I can't tell her what I've been doing when I get home.  I can't snuggle up next to her in bed.  I can't cook waffles for her on Sunday morning.  I can't hike through the woods with her to a distant backpacking spot.
I can't even read her the story of our marriage, as I did up to a few weeks ago.
But surely our marriage wasn't just composed by what she could do for and with me.  If I gave her unconditional love, as I always claimed I did, then I will want to love her and to care for her now.  She's not just a gray-haired patient whose bones stick out through her increasingly pallid skin.  She's my Elsie.
And while I continue to build my life independent of her, fulfilling our mission in the community, our church and our family, I will continue to actively love her and care for her.
Yes, I'll let her go when the time comes.  But there's no hurry.


Chapter  Eighteen.
September 14
I've spent the past few days doing the things that Elsie and I would enjoy most doing together.  The difference is that now I'm doing them alone.
Or am I?
Not entirely alone.  Elsie's and my life together has prepared me for the things I now do by myself.
For example, every year in early June Elsie and I spent a morning picking strawberries.  In the afternoon we made jam together, and in the evening we invited all the people in our apartments in for a strawberry shortcake feed.  Yes, we had a lot of energy in those days.
I've  been hiking in  Minto-Brown Island Park lately, down by the Willamette River.  Again, it's something Elsie and I did a lot.  Recently I couldn't help but notice the bounteous crop of blackberries.
If Elsie were with me, I knew we'd agree to come back with buckets and make blackberry jam.
So that's just what I did.  I ended up with more than a gallon of excellent blackberry jam.  What's more, I strained out the seeds.
Now, was I doing that alone?  Not completely.  I certainly never would  have done it if Elsie hadn't taught me how enjoyable and rewarding it was.  So, she was a part of the process, even though she was lying inert on a hospital bed in the front room.
I feel the essence of Elsie with me. She built herself into me just as I built myself into her.  That's what the marriage vow about "one flesh" really means -­ not just the physical union but the improvements and enhancements of life that have grown out of being with one another.
I must encourage the essence of Elsie that is in me to grow and flourish, so that she truly will continue to live through me despite the fact that she will be gone.
Another example.  This past weekend our entire family gathered at Timberline Lodge at Mt. Hood for two days of family enjoyment.  Some of us hiked up the mountain a ways together.  We all swam in the huge swimming pool and basked in the hot tub.
I particularly liked swimming on my back from one end of the pool to the other watching that magnificent mountain appear to rise out of the other end of the pool.
We ate dinner together in the dining room, with six grandchildren behaving themselves at a separate table.  The many separate conversations, the playing of shuffleboard, even the search for the lodge's mascot St. Bernard dog built the family fellowship that everyone agreed grew out of our time together.
Elsie was in her hospital bed at home, but what she helped to build was building anew at Timberline Lodge.  I had an opportunity to confirm with some of the children the plans for the services when Elsie goes.  They put their arms around me and gave me the support I need so much just now.
Before I left for Timberline, I stood and watched her lying in bed.  Her eyes stared up at me vacantly.  It's easy at such times to believe she's really gone.  And then she coughs and purses her lips in the way she always has, and suddenly some of Elsie is still there.
I know I'm just looking at the automated responses her body has built into her movements over the years.  But when you live with someone year in and year out, those automatic movements are a lot of what you see.  It's hard, in these final stages, to convince yourself she's gone when she's still reacting in some of the ways she always has.
And then, as I was preparing to leave, she slowly took my hand in hers and drew my hand to her mouth, and kissed it.
I've borne up pretty well emotionally through all this, but at that moment I was devastated.  I experienced pure anguish.  Elsie still was inside that poor emaciated body, and she was telling me in the last way she has left that she still loves me.
When I recovered my composure, I said a silent prayer of thanks that I had insisted Elsie be kept in our apartment.  In those few moments that are still left to her when she understands her surroundings, she will know that she's in her own home and not in some impersonal institution.
Was she kissing my hand in thanks for having provided Elaine and Sylvia for her, for keeping her with me?  I doubt it.  It's hard to conceive that she can reason that far.  But I guess I can believe what I want to believe.
One of the hardest parts of this stage of Alzheimer's is the uncertainty about what will happen next and when it will happen.  Elaine and Sylvia, despite their long experience, aren't really certain either.  About the time I prepared to go to Timberline Lodge Elsie had a calm day or two.  Not only was she cooperative, she held Sylvia's hand and smiled at her.
Slyvia took me aside and said that her experience told her that Elsie might be preparing to go.  She added that Elsie had a rattle in her voice and she suspected that fluid might be building up in her lungs.  When I left I had the Timberline Lodge number on the outside of the telephone book along with the numbers of the doctor and the mortuary.
It's somewhat disconcerting to be flirting daily with the prospect of Elsie's immediate demise.  The caregivers say she is forgetting how to swallow at times -- one of the signs that the final days are approaching.  If she can't swallow food she will starve unless she's fed intravenously.  And then, when I returned from Timberline she was doing fine again, with all her vital signs in order.  Alzheimer's is like riding a roller coaster, with frightening dips and calming plateaus on a long downhill run.  It's no different as the end nears.
People keep inquiring about Elsie's status, and I try to be honest.  I met the Statesman Journal publisher Sara Bentley and her son in a supermarket last weekend.  Sara inquired after Elsie.  It happened that was one of those days when Elaine and Sylvia confided that the end could come anytime.  That's what I told Sara.
At the time I was loaded down with canning supplies as I prepared for my blackberry jam venture.  I told Sara that while I'm waiting I will be making blackberry jam.
I didn't think about my response until later.  It might sound strange to some people that I'm waiting for Elsie to die by making blackberry jam.  But that's the best way to wait for the end -- to keep doing the things that help to keep the essence of Elsie alive.
Christ talked about sending down a comforter, the Holy Spirit, to help care for us.  We need that comforter at times like these.
Yes, for His own reasons, the Lord is taking Elsie.  I must endure the anguish that goes with her taking my hand to her lips and kissing it.  But most of the time, as when I was with the family at Timberline Lodge or when I was making blackberry jam, I'm enjoying the legacy that my life with Elsie has left me, and I will continue to do so.
I wonder what theologians would think a bout me seeing the Holy Spirit in the making of blackberry jam?

 
Final Chapter
September 22
As I write I'm waiting for two men to come to haul the hospital bed away from the living room.  Elaine will be along shortly to take away the medicines and the equipment she and Sylvia have been using for the past six months.
Soon the furniture will be back in place and the apartment will resume a normal look.  But it never will be normal again.
Elsie is gone and I am experiencing the aftershocks of her loss.  A few minutes ago, at breakfast, I glanced down at the placemat under my cereal, a picture of Mt. San Jacinto at Palm Springs.  I was reminded that I must write to the managers of the Monte Vista Motel where we stayed telling them to cancel our reservations.  I dissolved into tears.
How many times in the next weeks and months will I see something or do something that reminds me of her, and be shattered by grief?
And yet, I have no regrets whatever at letting her slip away this past week.  That terrible, final waiting period began the day after I returned from our family outing at Timberline Lodge.
Elaine took me aside and explained, "It is time to let Elsie go.  She can't swallow.  To put liquid down her throat risked strangulation.  I agreed we had no other choice but to allow the final process to take its course.
She was slipping into a coma.  She could occasionally move her half-closed eyes.  The only other sign of animation was labored breathing through her open mouth.
Another weekend was  upon us.  We began to maintain a twenty-four hour vigil.  We had to coat the inside of her mouth from time to time with margarine or some sort of salve that would keep her tongue and other tissues from drying out and cracking.
I would stand in front of her so she could see me, if she were capable of knowing who I was.
I telephoned the members of the family to tell them the situation.  It no longer was a question of whether but of when.  Daughter Nancy phoned to say she wanted to come down.  I discouraged her.  I had been getting about two hours of sleep a night, and I didn't want to cope with anything or anyone not essential to our situation.
However, Nancy phoned back to say she was coming anyway.  She needed to be with her mother.  The moment I heard her decision I was glad.  Yes, I was going to need family help.
Son Bill phoned to say he would be down Tuesday, when Nancy was scheduled to leave.  Bill would stay to the end of the week. 
I telephoned Elaine at 6 am Monday morning.  Elsie's breathing had become more erratic.  I could hear a rattling sound.  I asked Elaine if there was such a thing as a death rattle.  She assured me there was.
Elaine arrived within twenty minutes.  But by 8 am, when Sylvia got there, the regular labored breathing had resumed.
At 9 am I telephoned a friend at the funeral home and asked to see him.  He told me to come right over.  For an hour or more I was led through questions the mortuary needs to have answered.
"How many certified death certificates will you want?" he asked.  How was I to know?  He explained the need for such documents.  He also gave me a detailed listing of funeral costs, as required by federal statutes.
As best I could, I answered questions about plans for the memorial service at our First Presbyterian Church.  We would have son Dave give a eulogy about Elsie's family.  Pastor Rob Elder will give the eulogy about Elsie's role in the community.  No flowers.  Even though we specify gifts go to Salem Meals on Wheels and the Alzheimer's Association, there will be plenty of flowers without our ordering more.  We'll ask our friend Betty Anderson to sing.
On and on went the questions -- about the bulletin, the obituary, the reception following, and the fee for the organist.
I found the mortuary director Tom Golden ready to take care of all the details.  I wouldn't be burdened with implementing any of our decisions.
About the cremation.  Tom brought out a golden foil-wrapped box.  He explained the remains weigh about six pounds.  At our request, they will be in a paper bag inside the foil-wrapped box.  I've decided not to take them to our Siletz property myself.  Why subject myself to such emotional anguish?  Instead, I will let Dave or Bill carry out that mission.
They are to remove the biodegradable bag from the box, to return the ashes to the soil of the planet -­ ashes to ashes, dust to dust.
I left the mortuary with a packet of papers in my hand.  Nancy arrived during the lunch hour and took up the vigil at Elsie's side.
We were talking in the den at 4:35 pm when Sylvia looked in and motioned for us to come.  A death pallor covered Elsie's face.
I bolted from the room in uncontrollable sobs.  I wasn't able to regain my composure for minutes.  I couldn't bring myself to return to the living room as Sylvia, with Nancy's help, laid Elsie out.  I'm not sure what all they did.  But I know now why she and Elaine kept such a close monitoring at the last.
I telephoned the mortuary immediately, and within minutes Tom Golden was there, with sympathy and with more questions.  We settled on the following Saturday for the service.  More people would be able to attend on that day.  I gave Tom a beautiful picture of Elsie for the newspaper.
They took Elsie's remains away, and I began to telephone the other children and people who would expect to learn about her death without reading it in the obituary column of the newspaper.  Nancy sat by my side reminding me of people I should telephone.  I could feel my thinking begin to muddle.  I'd had only two hours of sleep each night that week.
The next twenty-four hours were the longest of my life.  Again, two hours of sleep.  The obituary in the newspaper was correctly done.  Then the telephone calls began, all those wonderful friends who needed to tell me how they feel.
And the food and flowers began to arrive, a casserole, bread, garden-fresh vegetables, a cake.  I know it was coincidence, but six widows were among those bringing their offerings.
At 8 o'clock the following morning, neither Elaine nor Sylvia arrived.  I'd grown used to having them come, to having my morning conversation with them before I went out about my business.  I'm losing more than Elsie.  It will be lonely when everyone who has helped with Elsie is gone.
All during the morning, daughter Nancy was packing Elsie's clothes and other personal belongings.  I had a premonition that I would need to get rid of her things quickly, and I was right.  I couldn't look at her dresses without seeing her in them, working around the apartment.
I couldn't see her jacket without seeing her walking with me around the park.  I finally decided not to look at the clothes.
By early afternoon, Nancy had all the boxes in her car, ready for her departure to Olympia.
Then son Bill came and we had dinner. Listening to the two of them talking back and forth in an animated fashion brought a new surge of memories, of all the family gathered together around the table for meals.  And Elsie never will be able to share in that again.
Mostly, my grief takes the form of anguish.  This time it was anger.  It isn't fair.  Elsie shouldn't be denied the rewards of all her labors.
That night, Bill and I talked about grief.  Bill said he was denied ten years or more of being with his mother, of having his children get to know her.
Nancy's grief had been the same.  Her daughter Ana, age eight, would lose her memories of the grandmother who was able to swing with her in the hammock at the Siletz.
I appreciate their feelings.  I've lost ten or more years of the harvest time of life with the person who shared my lifetime journey.  On that final afternoon, I sat reading my book about our fifty years of marriage, To Elsie With Love.  It provided solace.  It reminded me of what we had rather than what we are losing.
As Nancy and I sat yesterday afternoon waiting for Bill, as the stream of visitors came and went, we commiserated with each other that as difficult as this time was, it was far better than the afternoon before, when we sat watching Elsie's body fight its losing battle with death.  Enough.
The movers have taken away the hospital bed.  The furniture is back in its usual place in the living room, as if all this tragedy had never happened.  The apartment looks normal.
But it never will be normal again.


About the Author
J. Wesley Sullivan was born and raised in Portland, Oregon.  He married Elsie Brownell at the start of spring term of their senior year at the University of Oregon in 1943, graduating in journalism just as he was being inducted into the Army Air Corps.  He flew 35 missions over Germany in WWII as co-pilot of a B-17 bomber.
He became News Editor of The Oregon Statesman in Salem, Oregon in 1945.  He was awarded a Nieman Fellowship to Harvard in 1957-58.  He was named editor of the newspaper in 1975 and finished his career as Chairman of the Editorial Board of the combined Statesman Journal.  He retired in 1986.  He writes a weekly personal column for the newspaper.
He was inducted into the Oregon Newspaper Hall of Fame in 1989.
His previous books include ]am on the Ceiling, a collection of his newspaper columns, and To Elsie with Love, the story of their 50-year marriage.
Elsie died of Alzheimer's disease in 1993.  Wes died fourteen years later in 2007.  He was survived by his fourth wife, Ruth Gray, and the four children and eight grandchildren that he shared with Elsie.


About the Book
My Wife Has Alzheimer's was written on a Compaq Contura laptop computer using Microsoft Word.
It was transferred to disc and formatted into a book on a home computer by William L. Sullivan, son of the author.  He also served as editor.
The book was printed, assembled and bound at a Kinko's copy shop.
The cover was printed on a color copier at the same shop.

Then many years passed before the book came into the hands of Mary E. Lowd, granddaughter of the author, thanks to Ruth Gray who had continued to publish and distribute it.  Mary handed it off to her mother who disassembled it, scanned it, and emailed a Word document back that was finally converted into the e-book that you've been reading.