Minding the Missing Them: A Voice for Those Who Can't

Play soft music. Not classical, no, the kind of music you would hear in a lounge down Park Avenue while you smoke Parejo cigars. Yes, a song with French lyrics sung in a smoky whisper. Hushed. The curtains, which ought to be transparent, should be drawn. The water must wait, though, until I sit in the chair. Of course, the chair needs to be absolutely dry and placed firmly in the tub at least five feet away from the faucet. This will prevent me from slipping and will give you ample room for washing me. You do not want an accident do you? No, no you do not. Speak to me while you, cautiously, switch on the showerhead. Place the water temperature at 90-100 degrees Fahrenheit before it touches my skin. Distract me. Remind me of a bird we might have seen that day. Make up a name for it. Tell me it was a song sparrow that came a season early, lost on its way to the eastern hills. Yes, I am asking that you deceive me. Squeeze the sponge as it lifts the grime from under my folds of skin. It will not, and most definitely should not, take long. Realize that the rinse is for health not beauty.

Make me feel in control. This will make the process easier and provide a sense of dignity for the both of us. Surely, you will be tempted to feel ashamed if I am obviously unable to do anything to clean myself. The illusion of control helps us both. That is, to a certain point. The pity you will feel over my frailty will become dejected horror when I am unaware and apathetic towards my vulnerability. Give me a towel and help me dry myself slowly. When it is time to brush my teeth we must brush together. I can then look to you for guidance in case I forget the purpose of this activity. After I have rinsed my mouth show me to my clothes. Too many choices means we’ll be there too long. So don’t give me a choice.

If we go out to dinner, let’s go out early.  Not when I’m too tired-- too obvious. If we go later make me nap first. Is the restaurant quiet or noisy? Do we have to wait to be seated? What kind of restroom do they have? Are there extra spoons? Extra napkins? Extra bowls?  These are questions you will need to consider to make the experience easier for not only us, but also the staff who must bear the annoyance only a decrepit old man could bring. Also, and perhaps most importantly, make sure they are understanding. Be direct, say, “My dad has Alzheimers disease. He is going to say things that are probably offensive and unexpected. Thank you for your understanding.” If they aren’t don’t be afraid to ask for someone else. And don’t be ashamed to take me to a different place.

Ask me to sing. I might remember.  If I sing, let me be loud. It won’t last long, I promise. As my voice gets drowsy, drooling out the words, keep me going. If the words fail to come, as they will, let me hum.  

Don’t take me to church. In the name of everything that isn’t holy don’t take me church. I don’t care how much you think it will help. Don’t take me to church. You have spiritual needs, not me. Not the me that is there.  If you pray, pray for the worthwhile. Just as the Christian does not pray for the return of amputee’s leg do not pray for whatever identity I had to reemerge. Don’t give yourself comfort in an impossible fate of the future. It is a false, selfish, consolation for I am not something to be fixed.

Be realistic about holidays. I didn’t give a damn about them before so don’t pretend that I did. Halloween was my favorite, though. Make the house a little spooky with stickers on the walls and cob webs in the corners.  And do be sure to have plenty of candy for the ghouls at our door, we don’t want to be ‘that’ house. Also, dress Camus as a pumpkin. Camus is the name of the cat. As you likely know, I’ve always wanted an existentialist feline. But when I call her by the wrong name, because I will, correct me. A cat deserves as much dignity as I do.  

Keep me safe. If I got lost, an ID will let others know I’m different. Those silly life-alert bracelets won’t be so silly when I’m wearing one. This is a case where safety trumps dignity. Sometimes, when a family’s child gets lost they feel a vast sorrow in not having a recent photo. They use one a few years old but know that the child doesn’t quite look the same. So make sure to have a recent photo. You don’t want to be returned a different senile old man.

The behavior is part of the disease. When I hide the ‘channel changer’ under my pillow, its fine if you get mad, just don’t yell at me. If I start rummaging through the nooks and crannies know what for. When I say that I don’t know walk me back to my chair. Even if I get angry at you, even if I deny my inability to find it, walk me back to my chair. But If I do, if I remember that lingering object, help me look for whatever it is. Searching will provide me with a momentary purpose, and it just might help you find something you were looking for. Check the trashcan, though. I might not have remembered what it was for.

Recognize the impaired me as someone possessing a past, present, and a future. Alzheimers brings a burden, but I will not be a product of my deficits. Remember: While babies do not tell their own stories, they are still a part of our lives. I, like the baby, am someone even in my state of decay. Also realize, as I hope you have, that there are few more horrifying prospects than the complete loss of one’s identities. One of those prospects is inherent in Alzheimers. As the disease progresses, I will bear witness to the destruction of my selves. And will be unable to do anything of it. Each day, as my memories fade, I will lose more and more of my ability to scream that I am still here. Indeed, from the inside and out, it will be difficult to say that I am anyone at all. As I begin this march to oblivion, one of fear, isolation and eventual apathy, please do mind the missing me.

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