“By the rivers of my memory…
That keeps you ever gentle on my mind.”
Many of us have seen the poignant news coverage that Glen Campbell, recently diagnosed with Alzheimer’s disease, will soon embark on a farewell tour. As we watch him on stage, a star slowly dimming, he remembers the words to this song — and others — that had so many of us singing along over the years. And, because he made the courageous decision to take his diagnosis public, he is — for now — the newest face of Alzheimer’s. But, soon he won’t remember the words. Perhaps he’ll be able to read them for a time, but he is most certainly going to forget how to read. He won’t understand those, or any words, because Alzheimer’s will steal it all, bit by bit. For Mr. Campbell, the tour will be over, and he’ll become another unseen face of Alzheimer’s.
I have seen the faces of Alzheimer’s. Like many families, mine was visited by this heartless thief, and I have my own horror story of heartbreak and emotional devastation. My father was a face of Alzheimer’s. And our story was not any different from those raging in millions of homes across America. But, unlike most diseases as rampant as this one, there is no real protocol to follow; no time tested way to help a family cope. Not that caring for a loved one stricken with Alzheimer’s is something you can prepare for. You can seek legal power of attorney, draw up the now customary “end of life” medical documents, and find professional counseling. But nothing, absolutely nothing, can prepare you for what lies ahead.
The family of an Alzheimer’s patient is thrust into an unimaginable hell along with their loved one. The choices that await sons and daughters, husbands and wives, are the kinds that crush the human spirit. Unfathomable choices. And you question every decision you make. Your rational mind knows why you are taking away their car keys and your rational mind knows why you can’t let the stricken go anywhere alone. Yet, as you anguish over each and every decision, the look of confused hurt on the face of your Mother or Dad will make you doubt those decisions. You now have the impossible burden of explaining these new rules to someone without a rational mind. The cruelest of ironies is that as you take away your loved one’s independence, you will, in turn, begin to lose some of your own.
In my family, we had to hire someone to come in just to sleep in our home, because my dad would get up and wander in the middle of the night. Or fall, because he had momentarily forgotten how to walk. Mother is hard of hearing and would not wake to know he needed her help. It came to the point that we had to hire a service to come in simply so my mom could go to the grocery store, a doctor appointment, or just take a coffee break with a friend. My father, once a lifeguard and swimming instructor, became so afraid of water he wouldn’t wash his hands. My mother was left to cope as best she could, as I was working on the other side of the country. I struggled daily – and nightly – with the weighty moral dilemma: Should a good daughter – an only child – end a career, jeopardizing her own security, when there was no work for her back home? Where does one go for the answers to such questions? Sadly, nowhere I was able to find.
There was one thing I did learn for certain, however. I know that for most of us, the face of Alzheimer’s does not gracefully step out of the public eye. The unseen face of Alzheimer’s yells at the painting on the wall because the girl in the picture won’t talk to him. The face of Alzheimer’s isn’t reading your fan letters, because he has forgotten how to read. And, on the days when my father could remember how to talk, he would ask my mother to take him home. We assume he meant to the home where he grew up, but we will never know for sure. My Dad could not read the notes I sent, and he could not talk to me on the phone. Two weeks before he took a terrible turn for the worse, I’d come home and taken him for a walk. In a rare, very lucid moment he told me I could not understand what it was like to no longer feel like a man. I said, “I love you daddy, please show me the way in case this happens to me some day.” I cried myself to sleep that night.
Amazingly, my father found a way to make one final choice of his own. He couldn’t live this way, and somehow found the strength and determination, deep within his lost mind, to handle this disease his way. I greatly admire this from a man who fought two wars and survived being a POW. A man who would not accept being what he somehow knew he’d become. This daughter grieves a little every day and will forever be heartbroken it came to that.
The unseen faces of Alzheimer’s are everywhere, although you don’t see them. They’re lining the hallways of care facilities, mumbling and staring at the floor. Or they’re home confused and lost, while people who love them struggle to make it through another day. The face of Alzheimer’s is anything but gentle on the mind, Alzheimer’s is hell.
To learn more or to help fight: http://www.alz.org/index.asp