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Alzheimer's was the Rotary eClub One's first Vocational Study Team project. Its focus was on patient care, touching briefly on the role of the primary care giver whose life can be turned upside down by this invidious disease. This program, by an eClub One member, is a window on the life of one care giver and his efforts to cope with reality. He shares it with the hope it will inform us all as well as give other Alzheimer's care givers courage to "hang in there".

 WHETHER TO LAUGH OR TO CRY

 Robert D. Peck
(Member Rotary eClub One)

My wife, Lylia, moved into the Hampton Alzheimer Special Care Center about a year ago.  It was a bitter sweet day for both of us: knowing that it had to be done but not wanting to do it. Preparation for the move, on the other hand, was a clandestine affair, orchestrated and planned to avoid any arguments and emotional disturbances.  After the word came that an opening was available, everything was ready except what we should bring and when we should arrive.  For the first, a short list was handed over and for the later, the Director said that just before lunch would be very good so Lylia could move directly into one of the regular activities of the day. 

My weekly visits are actually quite pleasant.  Seldom has she complained about being there, about the locked doors, or the company she has to keep.  The moments of despair or sadness or dismay about the circumstances with which she now has to cope are very infrequent. Our visits are carried on as we walk the halls and greet the cats and dogs that have free run of the place.  She comments about the pictures on the walls and directs my attention to the comfortable couches and chairs located in various lounges.

Dedicated Alzheimer Centers are “assisted living” institutions, not nursing or convalescent homes.  What they do is assist residents with the business of daily living under the shadow of severe memory and related cognitive problems.  They tend to be designed and decorated to resemble the homes of 50 or so years ago in which the residents grew up.  And the activities are all planned around similarly dated experiences.  The feelings associated with the past are deliberately cultivated. 

By now, Lylia’s routine has settled.  But it was not always so.  This is the second time around for us.  Her mother died of Alzheimer’s about 15 years ago—just a year or two before the earliest signs began to appear for Lylia.  Thus, it was not unexpected but it was disturbing.  The memory lapses and consequent confusions.  The difficulty balancing the check book.  The mistaken identity of casual acquaintances. The forgetting of landmarks when driving around town.  The meticulous menus for every meal and elaborate descriptions of appointments.  The shopping lists that were highly specific and could not suffer deviation.  Misplaced objects—jewelry, hair brushes, remote controls, keys, table service, clothes—even shoes.  All these things we had already seen with her mother and, though Lylia seemed not to recognize the connection, it was obvious to me that “we had been here before”.  

This is a curious disease in many respects.  The loss of memory and the related confusions it causes are well known.  What is not well known is how certain parts of the brain that are not closely tied to memory, continue to function quite well.  One of them is the sense of feeling. Early on, I noticed this with my wife.  She is a great lover of classical music. The one element in the Hampton about which she expresses criticism on a regular basis is the country music that is played on the radios positioned throughout the building. This kind of music never appealed to her so the radios get turned off if she can find the knobs or they get covered up with pillows other wise.

This world of feeling continues for some time after rational lucidity and reasoned behavior have disappeared.  It may come as a surprise to note that two of the world’s greatest musicians suffered from this disease: Beethoven and Brahms.  Beethoven wandered around as the town lunatic and Brahms was committed to an insane asylum.  But they composed some of their greatest music at the time.  If music and painting and art and drama and poetry and song and dance are significant and meaningful for the sane and well among us, how much more so are they for those of us who are unable to benefit from a clear mind and a straight thought.  

Before she moved to the Hampton some very strange behavior began to appear.  Disrobing, for instance.  I can’t recall when it started.  About two years earlier, I think.  At first it was only the top or the bottom but it finally extended to full fledged nudity.  Of course, my first reaction was to ask for reasons and try to dissuade her with other reasons.  This sort of thing simply doesn’t work.  In fact, it has a decidedly negative effect.  Actually, the stripping didn’t bother me personally.  After all, over 50 years of living together has produced a rather candid acknowledgement of our exteriors.  It was the glass window in our entry door and Lylia’s readiness to answer the door when the bell rang that got my attention.

The only effective way of dealing with this sort of thing is by redirection.  For instance, about a year ago, I came up from my downstairs office to see all the sheets, blankets and pillows from her bed piled up in the front entry hall.  And then I heard a small voice call down from upstairs:  “I need a little help up here.”  At the top of the stairs, there she was tugging at the mattress from her bed, trying to get it down the stairs. My first reaction was horror, the second was anger and the third---well, redirection.  Here is how it went.

“Ah.  I see you’re airing out your mattress.” 

“Yup”  

“Good idea.  Here. Let me help.  Which side was up?” 

“This one.”  

“OK.  That means this side should go up now.”

“Yup” 

“Let me give you a hand.” 

So, the mattress went back on the bed.  I then had to rush downstairs to recover the bedding.  After it was done, there was another nod of approval and the incident was over.

This kind of housekeeping went on for at least four months, day and night.  She never slept for more than 2 hours at a time and never stopped keeping house at all.  The dishwasher was kept busy day and night as did the clothes washer and drier.  A steady stream of dishes from the cupboards moved back and forth.  Sometimes they didn’t move.  If the machine was full of dishes it was often simply started again. The same was true of the laundry machines.  Sometimes, things got mixed up.

All the TV remote controls got thoroughly washed and dried—how many times I have no idea.  I say, all of them, but that isn’t really the case.  I found only 4 of them, the rest were in the garbage bag.  Of course, trash bins, waste baskets, drawers and closets were favorite places for things like this.  They also got jewelry (I have never found her engagement ring), dentures, eye glasses, make up of all kinds, as well as shoes and socks.  Nothing was more bothersome to her than socks.  For some reason they drove her to distraction (and still seem to do so).  What it is about socks?  The disrobing I mentioned above?  No matter where it ended, it always started with the socks!

As with all fathers and husbands, I have not told the kids much about any of this.  In fact, from the beginning, I have delayed, concealed, camouflaged, and misrepresented a good bit of it.  They have picked up a lot more than I sometimes suspect, however, and often express their feelings about it. But there is no dissention between us, no mixed feelings about treatment or struggle for control.  No one will raise a hesitant voice about life support, for instance, or any other sustaining health care for either Lylia or me.  Whatever dignity the law will allow, surely will prevail here.

The insidious character of Alzheimer’s is one of its most damning symptoms.  It comes in the dark of the night, like a chilling breeze.  It moves with the stealth of a shadow across the room with the painless touch of a forgettable dream. Each night, as it returns, the footprints become more clear.  It seeks out the elderly more than not.  And it touches our mothers more eagerly than others.  And when the specter is visible, we deny its presence and conjure its demise with fruitless potions and plaintive prayers.

There is a one-way door at the end of this long corridor down which we have been travelling for so many months, through which only my love can pass.  It is getting closer.  We have said our good-byes.  She is so frail and so desperately alone.

 

Oh God, would that I could take her hand and guide her along those treacherous paths.

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