Southern Sorrow

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.

(Photo by whittlz / Creative Commons)

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:

Darby Britto

Darby Britto

I was raised in the south by a pair of Yankees, and everyone around me wore combat boots. I think this explains a lot. A childhood spent working in little theatre and a professional career in television, tends to give me a point of view not often shared by others.

  1. Your article was poignant and remindful to me of that process that no one is prepared for…the utter helplessness and bewilderment. And the pain. As the witnesses to this in our loved one(s) as they walk down this path alone, we agonize over the decisions, the emotions, the aloneness we feel as well.

    I have two parents now in this journey of Alzheimers. They are together in a wonderful home, sometimes can’t find one another if a door is closed, they ask to go home – that metaphor for where they lived with all of their faculties – and have that look on their face that tells you that they don’t know where they are or how they got there. And there is no pill or procedure we can get for them to ease their lostness or unease they are feeling.

    During this journey we have been on for the past decade, I have learned to find some sweet moments where we have been able to reach one another. Maya Angelou said, “I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel.” I have found this bit of wisdom a key to reaching my mother and father…even if only for a moment. Their fleeting recognition or acknowledgment flashes like a smile in their eyes. They may grasp my hand, touch my nose, smile or cry but they have been there in that moment along with me. Just as those patient souls who sit by the beds of their loved ones who are in comas, and talk to them or read to them or sing to them in hopes that somewhere inside someone is listening. I know that my words have been heard…and my parents feel my love and caring…and I feel theirs.

  2. Darby, what a touching article and story of your first hand experience with this horrible disease. My husband lost his Mom last July to Alzheimer’s. It was a long battle and thankfully it headed peacefully for her in her sleep. I am so sorry for your loss.

  3. Darby, you very powerfully described how devastating Alzheimers is to not only the patient, but to the family. I am fortunate that this disease has not struck my own family, but have watched friends struggle with the diagnosis of a loved one and every decision made thereafter. I pray with all my heart that a cure is found soon..
    I did not know that Glen Campbell had Alzheimers either. I did see him performing in late night tv last week and wondered at the reason. Now I know. So very sad.

  4. Thank you Darby for articulation so eloquently what many have faced, are facing, and will face. I hope anyone going through this terrible experience can leard from your words. Blessings to you.

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