Families struggle with Alzheimer's
April 26, 2004 9:44 AM   Subscribe

Then, in one of his unexplained flashes of clarity, he told Debbie: "I don't want to have Alzheimer's." On Saturday, John will be 57. Although he is in the end stage of early-onset Alzheimer's, he still enjoys simple pleasures: walking outdoors, eating ice cream, listening to music. His wife, children and church friends — some of whom have relatives with dementia — will gather at the nursing home for a birthday party. They will honor the man John once was, and the spirit that survives. And some will no doubt wonder if they are bearing witness to their own futures. Alzheimer's is a disease that can create nurses and chambermaids out of loved ones. Jim Broomall doesn't blame his mother. It's not her fault. She can't help it. No one with Alzheimer's can and caregivers must remember that, he says. "If you don't, you'll go crazy". Or maybe even die: home care for Alzheimer's patients is a major health risk for the caregiver spouse. That's the choice for the families of the Alzheimer's patients (4.5 million of whom are Americans).
posted by matteo (26 comments total) 1 user marked this as a favorite
The Seattle Times story in the main link has a very good image gallery. Gloomy post, OK. But there's also marginally good news: diets like Atkins could help prevent Alzheimer's.
posted by matteo at 9:50 AM on April 26, 2004

...or perhaps not...
posted by GhostintheMachine at 10:09 AM on April 26, 2004

Did anybody else get a little confused after reading that "diets like Atkins..." article? The article states that Atkins can prevent Alzheimer's, cancer, etc... But then, at the bottom of the article, it lists what should and shouldn't be eaten to prevent Alzheimer's, etc... Should be avoided: red meats. Most of the people I have seen that are on Atkins eat tons of red meat. Are they mistaken about the Atkins diet?
posted by crazy finger at 10:10 AM on April 26, 2004

Damn... 57 is so young.
posted by scarabic at 10:44 AM on April 26, 2004

I'm sitting at my desk in the middle of my office crying from the story of Debbie and John. It was this particular sentence that broke my heart:

By luck, lunch that day is John's favorite: macaroni and cheese. As John watches, Debbie makes a small, sad ceremony of taking off her Alzheimer's caregiver bracelet — a symbol that her caregiving days are over.

As my own parents age, I worry more and more about this sort of thing. My father had cancer last year. Now my uncle (who lives with my parents) has had a stroke and been hospitalized for weeks. I worry about them, but mostly I worry about my mother, and whether she will have the strength to take care of them. Probably my uncle will never come home again, because she simply can't handle the things he'll need.
posted by jacquilynne at 10:51 AM on April 26, 2004

Alzheimer's really sucks.
posted by troutfishing at 10:57 AM on April 26, 2004

crazy finger: Yeah, the Atkins link is pretty sketchy. I work in an Alzheimer's research center and as far as I know, diets high in and antioxidants and low in fat are believed to be preventative. I can't imagine that the Atkins diet fits any of those criteria.
posted by purplemonkie at 11:12 AM on April 26, 2004

Thanks for the Mayo clinic links and the FPP. It's very good food for thought.

My mother is in her late 70s and is-- touch wood-- very healthy. She is terrified of Alzheimer's disease. She does crosswords and sight-reads new music daily, since her doctor suggested this would keep her alert. I am not sure if he told her this to give her something to do, but it's worth thinking about.
posted by gesamtkunstwerk at 11:15 AM on April 26, 2004

There are so many angles here worthy of comment.

Such as fighting, doing research, experimentation and resisting the disease instead of just accepting it.

The re-design of "living complexes" (think housing subdivisions), so that instead of keeping families apart, families are pushed together into cooperative activities, and long-term care of older adults (and children) becomes again a part of the "community". Ironically, this can be done almost entirely through architectural design.

The "underground" of very low paid, or not paid, "room & board" caregivers. Young adults who take a spare room and food in exchange for providing free part-time home care, then either attending school or saving a LOT of money from their regular job by not paying rent. Surprisingly illegal in many ways, yet with an enormous market demand. Some of these people even learn basic nursing skills, such as how to give injections and manage IVs.
posted by kablam at 11:48 AM on April 26, 2004

She does crosswords and sight-reads new music daily, since her doctor suggested this would keep her alert.

i'm curious about how effective prevention can be, and what activities work. i'd be also curious of any relationships between alzheimer's and beef eating and/or TV watching.

the disease is too heartbreaking to imagine.
posted by mrgrimm at 12:46 PM on April 26, 2004

My Dad was recently admitted to a "care facility" (oh the euphemisms I have learned lately!) exhibiting symptoms of dementia/Alzheimer's, and frankly I couldn't finish the article. Too close to home. I'm bookmarking it for a stronger day. I am glad that he at least still knows who I am, for now.

Regarding keeping the mind active as prevention: this is just anecdotal, but what we've pieced together of the last few months before Dad was admitted to the hospital indicates that he pretty much withdrew from the world and gave up all his former interests and activities. His only connection to the outside world was a girlfriend who, it turns out, has a much further advanced case of dementia than his own, so she couldn't help him to stay oriented or grounded. This seems concurrent with a major decline in his thinking. Now that he is getting some medical care and interacting with people who know what day it is and other such niceties, he has come a long way back from where he was when we first discovered this whole mess. I know this is no scientific study, but with a father and grandmother who both suffered from this, you can damn well bet I will be rabidly pursuing hobbies as a senior.
posted by hilatron at 1:24 PM on April 26, 2004

Apart from my amusement at seeing a guy in Italy link a hometown newspaper article I just read in my neighborhood coffee shop, I found this story heartbreaking. It's something I fear for myself as I get older: the stories I hear from my friends who have become their parent's caretakers are just as sad. They are left with the uninhabited body of a loved one, while everything that made them complex and unique and individual has washed away like a sandcastle in an oncoming tide. I so want to still have a light on in the window until my dying day.
posted by y2karl at 2:52 PM on April 26, 2004

Caring for Alzheimer's patients is soul-sucking. At the advanced stages, you are just caring for a body, really. The personhood of the person is gone.

I worked in a nursing home, caring for some of these people. We're talking no ability to communicate, no recognition of loved ones, no ability to feed themselves, and their days of being able to use a toilet are far behind them.

You get used to it, sort of, after awhile, but it definitely takes some adjustment. Essentially they are just being parked at the nursing home until something kills them. And the state of nursing home care in America is, shall we say, far from luxurious. More like the bare minimum required to meet state regulations and avoid being sued. Families have no idea what it's really like when they're not around. I never saw outright abuse or anything, just... I dunno, I just wouldn't want myself or any of my relatives treated like that. But what are you gonna do?

Caregiver burnout is totally understandable. I can't even begin to really understand what that pain must feel like, watching your loved one disappear day by day.

I really wish we had euthanasia in this country. Sigh. I know I would never let myself become that way, I couldn't do that to my daughter. I will definitely be taking myself out of the picture if I sense Alzheimer's coming on. I just hope like mad that I'll be able to figure it out in time and still have the courage to carry through with my plans.
posted by beth at 3:43 PM on April 26, 2004

I think we will, beth...all the boomers getting older is going to radically change many things about aging--they've taken control before, and I'm sure will do so again re: death with dignity.
posted by amberglow at 3:47 PM on April 26, 2004

I'm another one who couldn't finish the article and is typing this with tear-filled eyes. My beloved mother-in-law is suffering, I believe, from early-onset Alzheimer's. No one has said it out loud, but two years ago my father-in-law called to say she was in the hospital, they didn't know what was wrong, but she hadn't eaten for like four days because "she'd forgotten." She would turn the stove on and forget it, etc. When my husband called her, having just talked to her the week before, she cried and said "I haven't talked to you in years, why haven't you called?" She only recently turned 60.

Anyway, like I said, it's obvious something is wrong, and the last time we visited I saw a bottle of Aricept on the kitchen table. (They live in Georgia, and my husband and I are in Michigan.) It's so heart-wrenching...this woman was always to sweet to me, treated me like a daughter from the first time we met, even though I was dating her youngest, her "baby." She always thought of everyone else rather than herself; she wasn't unselfish, she was selfless.

There is one small humorous aspect of her illness. For as long as I've known her, she's always been the stereotypical gentile Southern lady, never an unkind word about anyone. The last time we visited, I spent some time alone with her, and suddenly she uses the occasional curse word in her conversation, and opened up about all sorts of things that bothered her from the past. And they aren't figments of her imagination, they all happened. It's just that I (nor anyone else) had ever heard her reveal her true feelings...for example, she was telling me about going to the antique show with her husband, and wanting to buy some trinket. He started questioning her about spending the few bucks on it ("do we really need it", etc). She then turned to me and proclaimed "Well, when he had his cancer (some 20 years previous) and couldn't work, I was working my butt off and supporting this family and I didn't say 'boo' and I'll be damned if he's going to question me NOW about spending $2!"
posted by Oriole Adams at 4:13 PM on April 26, 2004

I don't get it.

Why the sudden increase in Alzheimer's (sudden being the past 30 or so years)? This can't just be a case of "well, we didn't know what to call it back then." I really think cases are going up in proportion to the population. Does anyone else think it's something in the food?
posted by Civil_Disobedient at 5:20 PM on April 26, 2004 [1 favorite]

My grandma was a sharp, quick-witted lady.

When she first started showing signs of Alzheimers, I was still in my early teens and my sister and I would get very frustrated with having to repeat ourselves to her four or five times a day. Looking back, I wish I had known what I know now and been more respectful.

Eventually though, despite my grandma's deteriorating health, my grandparents moved away to live in an apartment together, with a maid who cooked and cleaned for them. My grandpa had hoped that perhaps a change of scenery would do her some good.

Unfortunately she kept deteriorating. Every few months I would return back from school abroad and she was more forgetful than ever before. But at least she still remembered my name, that I was her grandson and she would always tell me to work hard in school. Once even, she remembered my birthday and gave me some money to spend, which surprised me.

But it was painful to watch, to see her world slowly shrink down. She stopped going out, she didn't want to eat, she didn't play mah jongg with the other ladies, she didn't even want to wash her hair.

One day, I got a call from my mom. She told me my grandma had become delusional, brandishing a kitchen knife and insisting that my grandfather had relations with the maid (absolutely not true). At that point, she was prescribed some drugs to I guess "slow her down" and keep her from becoming further delusional.

I returned home from school again, but things were very different. My grandma's eyes did not have the brightness they once did. Instead, they had been replaced by a glazed over empty look as a result of the drugs. She no longer remembered who I was or even had anything to say. She just mindlessly stared at the TV and had to be spoon-fed porridge.

The funny thing is, there were times when she would conjure up the strength to insist on not taking the pills that put her in her docile state, and in those times, she would exhibit glimmers of quickness and wit that she had once possessed.

But I could only watch as things got worse. My grandma barely ate anything and required supervision for everything - from getting out of bed to eating, to sitting down, to bathing. And I could see that my grandpa, a powerful man who was once on the board of directors at a bank, was so tormented to see his wife in this state could do nothing to stop it. She was the fulltime job and responsibility of two adults.

You could sense the frustration both in my grandpa and the maid as things got worse. One day, my grandma lost control of her body functions - truly one of the most demoralizing moments for a caretaker of an Alzheimer's patient.

Not long after that, she suffered a stroke and passed away.

Sometimes I wonder if deep down inside her mind still sensed what was going on in the outside world. That maybe she could see or feel that she was at the center of that anguish and pain. And that her last ultimate act of love was to relieve the people who loved her so much to take care of her to the end of their hardship.

When she passed away that day, I wasn't particularly sad. My grandmother had left me long before she passed away.
posted by PWA_BadBoy at 6:33 PM on April 26, 2004

I really wish we had euthanasia in this country. Sigh. I know I would never let myself become that way, I couldn't do that to my daughter. I will definitely be taking myself out of the picture if I sense Alzheimer's coming on. I just hope like mad that I'll be able to figure it out in time and still have the courage to carry through with my plans.

Me too Beth, me too. (For me of course, I'm not suggesting that you should go off yourself...) My great-aunt passed on this year after have alzheimer's for almost a decade. She really had no idea who any of us were. It was tragic.

Does anyone else think it's something in the food?

I don't know about the food, but my personal opinion...note that I have nothing with which to back up this theory...but I believe it has to be environmental. The heavy metals in the water supply maybe, or air pollution...it could be anything..
posted by dejah420 at 8:43 PM on April 26, 2004

Alzheimer's is the disease I'm most terrified of. Luckily most of my family has managed to avoid it, but still...
posted by SisterHavana at 9:38 PM on April 26, 2004

I've always assumed it's not something in the food, but rather, the fact that we simply live so much longer now than we ever did before. I think people probably used to die of other things before Alzheimer's had a chance to get to them.
posted by jacquilynne at 5:11 AM on April 27, 2004

Is it something in the food?

C_D, check out my link (second comment). Some doctor is suggesting there's a link between ground beef and Alzheimer's. I'm not convinced of his findings from what I've heard of them, but you never know.
posted by GhostintheMachine at 7:12 AM on April 27, 2004

Thanks for pointing that out, GitM.

And the 'ol "we live longer" argument isn't very convincing. I don't recall a lot being written about this 60 years ago, yet life expectancy figures were already up into the 60's by then (with plenty of folks living into their 80's and 90's). Also, Alzheimer's doesn't just happen to old people (as the article points out), so where were all the early-onset Alzheimer's patients from the turn of the century?

I'm sure a lot of them may have been diagnosed as "dementia" (you do see a lot of that in early literature), so perhaps that's it. But Alzheimer's isn't just dementia (as the second and third link point out), and surely doctors a hundred years ago would have noticed a marked difference between simple "looniness" and "forgets things more and more."

I wonder what the specific statistics are for Alzheimer's patients in other parts of the world where the diet is significantly different -- Asia, for example.

Or, perhaps it's just that the media makes a bigger deal about it now than before, and that the stats haven't changed at all. I honestly don't know.
posted by Civil_Disobedient at 8:02 AM on April 27, 2004

I'd go for the "diagnosed as dementia" explanation. The first documented Alzheimer's patient wasn't considered unusual in the quality of her dementia, just that she was experiencing it so young (late 40s).
posted by Tlogmer at 3:16 PM on April 27, 2004

These comments really resonate. (I don't think I'm even going to try to read the post itself.)

One grandfather is living with Alzheimer's now--like Oriole Adams' mother-in-law, he's lost a lot of self-censorship. Two years ago he started telling stories about his time with the Army in the Pacific during WWII. Some of it we're not sure whether to believe (did he really see the mushroom cloud?), but other bits are clearly true, and stories he's never told anyone in the family before.

My other grandfather died after years and years of fading slowly. We were lucky--until the last six months or so he was relatively strong physically, he kept the same gentle personality, and even after he stopped talking we still saw the occasional flash of his sense of humor. Despite that, it was almost a relief when he died. Once I didn't have to see him getting worse and worse it felt like I was released to remember him as he used to be.

My grandmothers are still quite lucid. It looks like they'll both go of physical causes before their minds go--something for which I'm grateful.
posted by hippugeek at 4:40 PM on April 27, 2004

Such a topic. My mother was diagnosed with Alzheimers just this year. Seems I may have been the first to notice the change, since I have the least frequent contact.

However, I have read some concern that Alzheimers is confused with CJD (madcow) and vice-versa. Maybe the increase is CJD?
posted by Goofyy at 11:29 AM on April 28, 2004

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