How Alzheimer’s Hurts
Alzheimer’s hurts the person who has it, and all those who come into contact with him (or her). My father was diagnosed in 2004 at age 63. The only experience I have is my own (which you can read about at http://alzheimersdad.blogspot.com), and here’s what I’ve seen/learned/experienced:
As my father gets worse, we take him out less and less. Since my mother has 99% of his care, that means my mom goes out less and less. I try to take him with me once in a while to give my mom a break, but it’s hard to pretend he’s “helping” anymore. He’s a hindrance, and that’s awful to say. He balks, he gets lost, he gets loud and argumentive. He can’t carry on a conversation, he can’t carry anything (something that weighs five pounds he’ll complain is“heavy”).
Some of my father’s little foibles are very embarrassing. He is highly flatulent, and he doesn’t rein it in at all. In fact he seems to delight in pretending he hasn’t done anything. The noise and the smell can’t be hidden. Even around people who know he has Alzheimer’s (and who forgive his issues), we’re embarrassed.
I can’t help but worry that I’ll get Alzheimer’s. Depending on what book or article I read, I have a 50-100% chance of getting it. And my dad’s was on the cusp of Early Onset—we’re sure in hindsight that he started showing symptoms in his 50’s. I’m in my late 30’s, and every time I forget something, I think, “Is this how it starts?”
It’s sad and horrifying to see a person you care about basically disintegrating before your eyes, to know that all the drugs and treatments in the world can only slow it down, and in effect prolong the agony.
Beyond a simple DNR order, there are other decisions to be made, and none of them pretty. My father had a heart attack last summer, and he had stents put in as a result. (My mother wanted to spare him the continued chest pains, not necessarily prolong his life.) The hospital ordeal was so awful for him (he was restrained and drugged overnight) that we’ve decided to never put him in the hospital again for anything.
My parents are typical middle-class people. They have a small house, which is paid off, and originally they had two vehicles, also paid off. Nearing retirement age, they had some savings as a cushion. My dad retired as soon as he was able (because of the memory problems, we believe now—he said they used to “get mad” at him for “forgetting things”) and went on Social Security—the grand sum of $1,200 a month. My mom lost her job right after my dad was diagnosed. She is too young to retire and because she has to stay with my dad 24/7 she can’t get a job. His medicines (two kinds of Alzheimer’s medicines, heart and cholesterol medicine, anti-anxiety and anti-depressants) are over $600 a month. Medicare doesn’t pay for 100% of any of them, and by September each year, Medicare pays for none, which means the last few months of the year my mom has to spend 50% of their income on medicine. Because they own the house and have savings, they aren’t eligible for any other government assistance. My mom also has to pay for medical insurance for herself out of that $1,200 a month. When my father finally has to go into a home, the state will take the house, car and whatever is left of their savings to pay for it, as well as my dad’s Social Security. Hopefully by that time my mom will be old enough to retire and get her own check. They can’t afford any kind of respite care or day care. My mom has me or her friend come over and stay with my dad if she needs to go somewhere by herself, but that is very upsetting to him. I have a part-time job so I have the time to do that, but because I have a part time job to have time, I haven’t got the money to help in other ways. It’s a vicious cycle.
All of us in the world of Alzheimer’s wish for a cure. Or a “stop”—find it, stop it where ever it’s at. But in the meantime, would it be too much to ask for help in other ways? The families and loved ones of Alzheimer’s patients need so much more than a bottle of pills. If you know someone in this situation, please reach out. If you are in this situation, and feel like you need help, ask those around you.