My Wife Has Alzheimer's

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