She lies in bed with her feet curled under the sheets, hands gripped in tight fists wrapped around small stuffed bears to prevent her nails from stabbing her palms. She stares into space, now completely blind, with a blank expression. Her past-time these days is to curl her tongue around her mouth, stick it out and start over again. She sips water through a straw, is fed baby food with a spoon and her hygiene needs are attended to by others. She has end-stage Alzheimer’s Disease and as it progresses, she regresses deeper into infancy.
Amazing how this woman is ending up where she began. And, as far as doctors know, she’s unaware of the changes in her life. Eventually her brain will stop remembering how to swallow.
Alzheimer’s Disease is a tragic way to die. This woman’s progression is now 8 years into diagnosis with her family responsible for her care. Their lives are on hold and her husband has essentially devoted his to her, rendering him housebound with occasional relief days to steal a few hours out of the house.
“Hi baby” he coos to her when he returns home.
“How are you?
Did you have a nap?
Are you thirsty baby?”
Blank stare into space. Tongue rolls around in mouth. Evidently that response triggers him to reach for the water-glass to give her a quick swig. And “quick” is the operative word here. Her sucking impulse is strong and she’s likely to gulp down more than she can process. A couple coughing and gasping spells is all that’s necessary before that lesson sinks in.
It’s a lonely life relegated to Alzheimer’s families. They suffer the disease more harshly than the patient because they watch the deterioration of a human being who used to be a vital member of the family.
There is no substitute for the love of an Alzheimer’s caregiver.
–Bob DeMarco
Pat Summitt stepped down today as Head Coach of the Lady Vols. Less than a year ago she announced a diagnosis of Alzheimer’s Disease. Fortunately she has plenty of money to pay for round the clock care. Most people don’t. But all the money in the world can’t reverse her fate. Not yet.
Maybe someday?
This has. to be 1 of the most prevalent fears in america. I think most of us would rather have our minds stay strong while our bodies give out. The fact that there is no known cause and no cure is terrifying.
Good essay, Joyce. Thanks.
Beautifully written, Joyce … my daughter and ex-son in law cared for his grandmother in their home with very little financial support from his dad and very little emotional support for 5 years as she progressed (?) into Alzheimers. It takes it’s toll on the family – hence, their marriage did not survive the stress.
It takes a huge toll on the family. I consider it a family’s disease. Thanks for contributing.
Just as good as your last post. Do you accept advertisers?
Have never been approached by advertisers so I have no answer yet.
I have 3 paternal aunts that have Alzheimer’s and 1 marnaetl aunt.Since I have 4 aunts (females) that have Alzheimer’s, I fear I may have early onset. I say this because I hear my sister say “I know you told me that” a lot.If I get tested, will Aricept (sp?) help slow down the progression of early onset?
Dear Smith,
I’m afraid I know nothing about Alzheimer’s drugs so I can’t help. Try googling the drugs and see what you find, or contact the Alzheimer’s Association. Good luck to you.