ALZHEIMER’S UP CLOSE

NOTE: Permission to write and post this blog was granted on the condition that the married couple depicted remains anonymous.

HE dozes on the couch in front of the television, wakes up intermittently, stares at a clock for a few minutes, and then dozes off. It’s his way of making time go faster, so that an upcoming televised basketball game will start sooner.

SHE cheerfully awaits the start of the game with him. In truth, watching televised sports is as appealing to her as walking barefoot on hot coals.

“If you feel this way, why do it?,” I asked.  The short answer was “Alzheimer’s disease.” The long one was as selfless as they come. “Sports events are among the very few things that hold his interest for any length of time, and he wants me near him constantly.” Put it all together, and you get a loving wife who handles the role of sports fan like a pro.

A love affair built to last

Having spent many hours visiting with the two of them and privately interviewing her, I’m convinced that she will do anything to protect the sweet, seamless continuity of that love—whatever mood she’s in, no matter how tired she is, or how unknowingly thoughtless he may be. And she tells her story in complete honesty, which means she doesn’t sugarcoat the toll it takes on her.

A few unwritten rules govern this love affair—rules that, for some wives, amount to a prison sentence. “Rule number one is never leave him alone,” she explained. “Imagine the trouble a toddler could get into, if allowed to roam around the house without guidance. Then you’ll understand how important this rule is—and how restrictive it can be for me.  Because of it, my days are completely driven by his needs, even during the few hours each week we’re apart.”

When they’re together, rule number two kicks in: Keep him calm and don’t insult or upset him no matter how problematical things get. “To abide by this rule, I have to be very careful about what I say and how I say it. In other words, there are many times when I can’t really be me,” she pointed out.

Surprise!  Surprise!

None of this is easy, but all of it is necessary, including what is arguably the most difficult rule to live by—Expect the unexpected.

This incident gave new meaning to the word “unexpected:” Most of us have experienced the shock of receiving a sleep-ending, late night phone call. When it happened to her recently, the shock went a step further toward pure panic. She made the gut-wrenching discovery that her Alzheimer’s-stricken husband, whom she thought was sleeping beside her, wasn’t there. The mystery—but not the fearful concern for her husband—was quickly cleared up by the caller, who lives a few blocks away. He and his wife were returning home when they saw her husband lying face down in the street. Apparently he had tripped on the curb. He carried no identification, but gave the caller his telephone number; 911 was notified, and the caller told her which hospital was treating her husband.  He was kept there overnight and received five facial stitches. There were no serious injuries. End of scary story.

What got him out of bed and on the street is another scary story. As he told it, he thought (or dreamed) he was invited to a neighborhood swimming pool party. So at approximately 11:30 p.m., he left the house fully dressed and started walking in hopes of finding the pool and joining in the fun.

The next day special locks and an exit alarm system were installed on every door in their home.

A difference of opinion

Two days after he went wandering she faced another unwanted wake-up call. The culprit this time was an alarm clock that went off with a vengeance at 5:30 a.m.

He was ready to meet and greet the day, able to doze whenever, wherever he felt tired. She was hoping against hope that he would be tired enough to go back to sleep so she could do the same thing. For her, daytime naps are once-in-a-while events to be cherished. Dozing is out of the question. Incidentally, this battle of wills goes on every morning, with predictable results.

So there he was, sitting up in bed impatiently urging this thoroughly fatigued woman to rise and shine. After a few mild protests, she managed to rise. But 5:30 is definitely not her shining hour. Half asleep, she made breakfast and tried to focus on the day ahead.

At this point, a brief overview of the week’s activities is in order.

The “Guess Who” game

Label every Monday “adventure day.” That’s when the day care lady takes over from 9 a.m. to 1 p.m. But who will she be? For one reason or another, a different Certified Nursing Assistant is sent almost every week. All sorts of reasons are given to explain why “our scheduled caregiver is unable to assist you.” This confuses and, worse still, irritates the man of the house. Understandably, it frustrates his wife beyond belief.

She must familiarize newcomers with the house and show them where certain things are kept. She also briefs them on exactly what their duties are. Of course everything focuses on him. Having to repeat this on-the-job orientation so often rips her shopping and errand plans to shreds.

However, things get better as the week progresses and her husband’s social agenda unfolds. On his schedule are a couple of hours of not-too-strenuous tennis devised by a group of old and understanding friends, light workouts at a nearby gym, and a more sedate weekly stopover at a senior citizens day care center (he’s 78).

Little time, lots to do

This leaves room on her schedule for grocery shopping, the cleaner’s, the bank, doctor’s appointments for her own medical problems and usually a list of last minute to-dos. “It’s sometimes a tight squeeze, but I manage to get everything done and pick him up on time wherever he is,” she said.

Added highlights include an occasional movie and dinner with friends at his favorite restaurant.

In between these activities, he has the couch to doze on, the television (and clock) to look at, and the company of a woman who proves that the worst of times can bring out the best in people who care enough.

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