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Posts tagged ‘longing for home’

I Suffer from Alzheimer’s

Ростислав Иванович Фелицин (не позднее 1820-х годов-1882) – Печальное известие (Чтение письма) (1856)

I drive home sobbing from the residence where my mother lives. Sometimes instead I rant about the injustice of a disease that kills a person before their body is dead, and kills their supporting family in fragments that leave us bleeding. Every once in a while I catch the glance of the driver next to me, shaking their head at my inattentive driving skills. I’m going to cause an accident if I don’t pay better attention. I know but still I cry or scream.

The stricken want to go home. To the house in Santa Monica or Chicago or Trenton where mommy and daddy live. They wait for their husband to pick them up except he died fifteen years ago. They must meet the school bus and walk the children from the stop even if their children have grandchildren. It’s time to make dinner though they haven’t cooked in over ten years because the last time they poured a bottle of soda into the spaghetti sauce and left the gas burner on overnight. They want to drive their car home. It’s parked outside though it isn’t, they have not driven or had a license for more than a dozen years, and no one will let them leave the locked residence where they now live. Still, they demand to go home because this place is not where they live, and you are a criminal for keeping them locked up. You no good terrible husband – wife – son – daughter. If you loved them, you would obey their demands to go home. You must not love them.

They can’t remember anything that is not a memory less than thirty or fifty years old. Certainly nothing that happened ten minutes ago. Many have no memories at all, which is why they don’t eat when they’re hungry (they don’t recognize hunger) or overeat when they aren’t (they can’t recall having eaten five minutes ago) or devour packets of sugar, pour tablespoons of salt on their food, chew on napkins, use a knife in place of a fork, fingers for their soup, or shove an entire slice of cake in their mouths as if it’s one bite. Loss of memory and confusion over engaging in appropriate daily activities are two sides of this damaging illness.

Daytime activities include playing Bingo and Wheel of Fortune, ping pong, chair exercise, singing, dancing, putting together jig saw puzzles, making collages, spreading paint, glitter, and glue in art class, watching the birds in the garden, dozing, and just relaxing. Occasionally they laugh. Some activities earn pretend money. They shop at the residence store where a few “dollars” will buy magazines, jewelry, sports hats, note cards, scarves, crossword puzzle books, gloves, wallets, socks, handkerchiefs, photo frames, pens, sunglasses, playing cards, and snacks like granola bars, cookies, crackers, or miniature candy bars. The most expensive items are the snacks because it prevents them from over eating junk “food.” Some of the residents walk. Walk and walk and walk and walk and walk. Yes, it is like that for some. They cannot sit or stay put for more than a few minutes because they have important things to do, places to go, people waiting for them. They are busy with activities.

They converse though it’s difficult for me to follow muttered conversations, rambling words, or disconnected thoughts. They smile at compliments and say they love you. They pause when you talk to them, nod at your suggestions to get out of the hot sun, or to watch the day’s entertainer. Then they ignore your words. You don’t speak their language either.

We will not discuss bathroom behaviors except to say you must imagine a two-year-old in the body of an eighty-year-old. We will not describe the stubborn and angry refusal to “freshen up.” We will attempt to forget the humiliation of what is disgusting. They have forgotten soap. Being fastidious. And being clean. But I promised: we will not discuss.

You thought you knew Alzheimer’s disease from the commercials, you who do not suffer. I’m not making fun of you or casting aspersions on your vision or curses on your lives. They are not like those people in the pharmaceutical ads, smiling and agreeable, ready to go for a ride to the park for a picnic or to the doctor’s for a check-up. That’s a ten second view of this disease, and you are forgiven for believing it’s the whole story. How would you know? May you never know otherwise.

When it’s time for me to leave where my mother lives to go to work, to go home, to meet appointments or obligations, I’m overwhelmed with guilt. The guilt weighs me down so I can’t lift my feet without stumbling. The guilt in my gut demands to be fed with sugar and carbs, the garbage that savages my diet and my health. For friends, the guilt in their gut leaves them unable to eat anything at all, and their self imposed fasts savage their diet and their health. We all endure bouts of anxiety, so leaving means we really do not leave – we take our ill loved ones with us. They accompany us throughout our day. They sleep at the assisted care residences but they sleep also in our dreams, our nightmares, and when we cannot sleep for worrying. Hours and hours of sleepless nights, and days of exhaustion to follow.

I do not have Alzheimer’s disease but my mother does. Therefore I also suffer. Now you know why I drive home sobbing.

 

*Painting Sad News, 1856, by Rostislav Felitsin

*The official position taken by the Wikimedia Foundation is that “faithful reproductions of two-dimensional public domain works of art are public domain“.

This work is in the public domain in its country of origin and other countries and areas where the copyright term is the author’s life plus 100 years or less.

This photographic reproduction is therefore also considered to be in the public domain in the United States.

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