Dealing With the Realities of Dementia, H. Hodgson (Excerpt)

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The Alzheimer’s Caregiver: Dealing With the Realities of Dementia by Harriet Hodgson

Using This Book

This book summarizes the latest Alzheimer's caregiving research. I have woven my mother's story into the research to make it come alive. In medical literature, health professionals are called "primary caregivers" and family members are called "secondary caregivers. " These are misleading terms because the work family caregivers do is hardly secondary.

So these are the terms I use: Professional caregiver (doctors, nurses, nursing assistants, public health nurses, etc.);

* Family caregiver (adult child, niece, nephew, or other relative); Spousal caregiver (a special category because special problems are involved); and Others (friends, neighbors, other concerned people in the community).

The book will help you care for a loved one, a friend, a neighbor, a colleague, a nursing home patient, or maybe even a stranger in need. Each chapter examines a different caregiving problem and offers solutions to it. More important, each chapter ends with a summary of action steps called "What Can You Do? "

The book is aimed at caregivers in general. However, some chapters pertain to one type of caregiver more than another. For example, chapter 1 focuses on family caregivers. Chapter 6, "1 Have a Boyfriend, " which is about sexuality, focuses on spousal caregivers. Still, all caregivers will benefit from the research summaries and tips that are offered.

Page through the book before you start reading, to get an idea of its structure. Scan the bibliography, too, because it contains lots of leads. We're all pressed for time, but try to complete the forms in the appendixes.

Finally, remember that the caregiving you do isn't just a job; it is sacred to life itself.

Caregiving Demands Our Best

I answered the phone on the third ring. It was my mother. "I'm not moving to Minnesota!" she yelled. "It's too cold. "

"But the arrangements are all made," I answered. "We've got our plane tickets and a hotel reservation, your moving date is set, and your townhouse is lovely. "

"Well, I'm not moving, " she repeated.

Mom had become a danger to herself, and persuading her to move to Rochester, Minnesota, had taken a year. I had to follow through, but what should I say? "You were the one who called to tell me you were found wandering in a Sears store. You said it was a scary experience. "

Silence. Although I could hear Mom breathing, she didn't say anything. "Do you remember calling me? " I asked gently.

"No, " Mom said.

"Well, that really happened, and you were also in a car crash. Plus, you've had several mini strokes. You need to be close to your family now. "

Mom sighed a long, weary, defeated sigh. "All right, I'll come, " she agreed.

I reviewed the moving plans with her again. My husband and I would fly to Florida, start packing her goods, and arrange for a tag sale. Later, we would return to Florida to finish packing, supervise loading, and drive home in my mother's car.

It turned out that we moved Mom just in time-two more weeks and I'm convinced she would have been a bag lady.

She had been deteriorating mentally ever since my father died in 1982, when she had her first transient ischernic attack, or mini stroke.

Against the advice of family and friends, she moved from the house on Long Island where she and my father lived, to Melbourne, Florida, to be near her sister. Three years later, her sister died. Mom missed her terribly and, despite church friends and a nearby cousin, lived a solitary life.

From our phone conversations, I could tell she was getting more forgetful, using poor judgment, and spending too much money. The thrifty mother of my childhood had been replaced by an avid spender. Every phone call included a reference to a major purchase. Gold jewelry. A china cupboard. Two new cars.

A nondriver all her life, Mom managed to get her license at age seventy-nine and bought herself a new compact car. When she took the car in for its first service check, a salesman sold her a new Cougar off the showroom floor. It had leather seats, a computerized dashboard, a radio/tape player, wide racing tires, and a "hot" engine.

In addition to becoming an avid spender, Mom became an avid traveler, visiting Scotland, Italy, Greece, Alaska, and parts of America. One Saturday she called to tell me she was "out west. "

"What state are you in?" I asked.

"I don't know," she said.

"Well, what town are you in?"

"I don't know. "

"Where are you now? "

" I'm in a phone booth, " Mom replied cheerfully. "I'm on a bus tour and having a wonderful time. We're going home tomorrow. I can't talk any more because the boat is going down the Colorado. " Then she hung up.

I pictured Mom, always a woman with a zest for life, wearing a pith helmet, clinging to a rubber raft, and splashing through roiling rapids. I started to laugh and then I started to cry. Mom was a growing source of worry. What would she do next?

Christmas time she gave my husband a light bulb -Mom thought it was a lamp. At Easter time she missed the flight from Minneapolis to Rochester and accepted a ride from a stranger. Thank goodness she called from the airport to tell me this news. I said it wasn't wise to accept a ride from a man she didn't know.

"What can he do to me? " Mom asked.

The stranger turned out to be an IBM engineer, and a genuine Good Samaritan, who recognized my mother's dementia. He drove Mom to the Rochester airport, as promised. Although the incident haunted me for months, Mom forgot it quickly. In fact, she forgot the entire trip. I didn't realize how much her mind had failed until I visited her.

I was shocked when I walked into her condominium. Newspapers, magazines, mail, and coupons covered every flat surface. Discarded shoes and clothes lay where Mom had dropped them. The air smelled of rotting garbage and the kitchen was a public health nightmare.

Mom was wearing dirty clothes a few coffee drips here, a few ketchup drips there, and chocolate drips all down the front. Worse, her closets were crammed with new clothes, many with price tags still on them. Although Mom wore a size sixteen or eighteen, the clothes were size six or eight.

My mother had no concept of personal safety. During my visit she kept walking around nude in front of the windows. Her condominium overlooked a golf course. If I could see the golfers, they could see Mom. That didn't stop her from going "au naturel. "

At night she locked the front door and put in a burglar bar.

But she left the back patio door unlocked and open, with only the screen across. To compensate for the warm, moist air, Mom turned the air conditioner thermostat to the lowest possible temperature and slept under an electric blanket.

Somehow, Mom could fix simple meals. She insisted on driving us to the grocery store. I agreed, only because I wanted to observe her driving. Several months before she had driven into the path of an oncoming car and sustained multiple injuries. Was this an isolated incident?

When I saw the car up close, I almost changed my mind. The car was so riddled with dents and scratches it looked like a battle-scarred tank. It seems Mom drove by sound -when she hit something she changed directions. Yet I was pleased with the way she fastened her seatbelt, checked the mirrors, and backed out of the parking space.

Instead of using hand-over-hand steering, Mom held the bottom of the steering wheel and inched her way around the corner with agonizing slowness. Suddenly she floored the accelerator. The Cougar raced forward with an amazing and alarming-burst of speed. At this rate we'd pass the grocery store before Mom saw it.

But she fooled me. Mom slammed on the brakes, made a wide turn into the parking lot (narrowly missing a car), and came to a lurching stop across the white lines. "See, I can drive! " she exclaimed.

Well, I wouldn't call it driving. Mom could make a car move and that's about it. The visit convinced me I was doing the right thing. Whether she wanted to or not, it was time to move Mom to Minnesota. Getting her there proved to be the challenge I anticipated.

On moving day Mom sat in the middle of the living room. She refused to budge. This slowed down the crew and they didn't finish loading the van until 6:30 P.M. My husband and I were exhausted.

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