The Alzheimer's Project

May 17, 2009 10:57 AM

The Alzheimer's Project.HBO is streaming online a four-part documentary on Alzheimer's Disease. The Memory Loss Tapes focuses on the experience of people who have the disease themselves, Grandpa, Do You Know Who I Am? tells the stories of children whose grandparents have the disease, Momentum in Science looks at the state of research into the disease and advances in treatment, and Caregivers follows the sacrifices and joys of those who care for people with Alzheimer's.

From the description of "The Memory Loss Tapes" on the HBO website:

Among the emotionally gripping stories: a mother who holds on fiercely to her simple lifestyle, yet recognizes that her memory failures are making it more difficult to do so; another mother who complains to her daughter "I have lost my independence" after failing a driving test; a woman in a nursing home who thinks her mirrored reflection is her "best friend," and who is haunted by imaginary snakes crawling over her wheelchair; a onetime computer whiz who keeps a blog to chronicle his activities while he still can; a father who no longer can remember his family, but can still steal the spotlight when performing in public with a local vocal group; a daughter who must build a fence around her farm to prevent her mother from wandering off; and the onetime host of a kids' TV show, whose wife brings him to a hospice after his body finally starts shutting down.

Each of these stories are profoundly moving, fascinating, and devastating. I was particularly touched by "Woody's Song" (about halfway through "The Memory Loss Tapes"). Woody doesn't remember who his family is or what he is doing for longer than a moment or two, but when he gets up on stage with his old singing group, he sings a song word for word, and beautifully.

posted by ocherdraco (14 comments total)

I got free HBO for 3 days because of this. Anyway it was pretty moving.
posted by azarbayejani at 11:44 AM on May 17

I just know that if I watch these, I'll be sobbing all over the place, so I don't know if I will.

But the impact is as you say, devastating. My great grandmother is in and out of herself. She's nearly 98. It's not uncommon for her to talk about things that happened in the 30s and 40s as if they were happening today, or about going to meet her husband, when she's been a widower since the 70s. Granted, we've had many years with her and she was independent into her early 90s, but it's still hard on a family.
posted by cmgonzalez at 12:18 PM on May 17

Oh, but I am glad that they've made and broadcast this. Perhaps I will try after all.
posted by cmgonzalez at 12:21 PM on May 17

Related & Previously, Days with my father.
posted by cashman at 12:58 PM on May 17

THE FORGETTING, broadcast on PBS a while ago is both sad and scary. The stage when the brain's ability to regulate emotion from one minute to the next has deteriorated is painful to watch.
posted by Hammond Rye at 1:05 PM on May 17

I worked in a nursing home and cared for two women who were so far gone with alzheimer's that they didn't open their eyes, and their faces were masks of pain. They were empty shells that we were just keeping alive. I will never let myself turn into that.

My rule is if I lose my way to the grocery store twice, I will kill myself. I get one freebie. There is no way I'm putting my daughter through watching me get to the point where I don't even recognize her.
posted by marble at 2:02 PM on May 17 [2 favorites]

I'm a big believer in preventive care
posted by nervousfritz at 2:53 PM on May 17

i saw my grandmother, and had extended contact with my aunt & my mother, when they were losing their minds to alzheimer's (although in my grandmother's time, it was called hardening of the arteries). my aunt, especially, knew pretty much what was going on from the beginning when she started to slip. she retired a year early when she couldn't remember what she'd done with her purse, started missing appointments, and couldn't remember how to hold a pencil.* she came to me one day after she got off the phone with the doctor, waving a scrap of paper. 'what do you think this means?' i looked at the paper, which has something like neural degenerative something or another written on it. i interpreted it as, 'you're losing your mind.' of course, i couldn't say that, so i feigned ignorance. she told me once when she was fairly lucid that if it wasn't for her religion (catholic), she'd just open the medicine cabinet & take every pill in there. she would spend entire days washing clothes, except sometimes there were no clothes, and quite often when there were they wouldn't make it through an entire cycle because she'd pull everything out after the wash cycle but before the rinse cycle.

by the time my mother started down that path, i at least had some idea of what to expect. knowing what to expect, though, doesn't help much. i wasn't terribly surprised when i found my mother's purse in the refrigerator, but not being terribly surprised is not the same as not being affected--it truly is heartbreaking.

and of course, grandmother-->aunt-->another aunt-->my mother--> ... more than likely, me. that's more heartbreaking yet.

* i still give big props to union oil, the company where she spent most of her working life, for somehow allowing her to retire early with full benefits.
posted by msconduct at 3:46 PM on May 17

msconduct, I don't want to get sidetracked, but atherosclerosis (hardening of the arteries) is a significant risk factor for multi-infarct dementia. Alzheimer's has overtaken it as the most common form of diagnosed dementia, and in the long run most dementias look substantially similar, but they are not really identical.

not being terribly surprised is not the same as not being affected

This, I absolutely agree with.

My father has a different type of dementia known as frontotemporal. Whereas Alzheimer's is generally an atrophy of the parts of the brain responsible for memory, frontotemporal attacks the parts responsible for semantic, organizational, and social ability. In some ways it can be considered a crueler disease because it robs someone of their "ability to be liked" (many AD patients retain social ability long after verbal skills have disappeared). Anyway, after nearly two weeks in the ER and hospital, he was moved last week to a secure memory care unit for his own safety. He knows enough to get himself in trouble, you might say. He's also strongly opposed to being there and is likely to prove an elopement (as they call it) risk. This afternoon we had a difficult visit where he seemed to expect our showing up as a promise to take him home. He has the communication ability to hear us saying that we believe he's safer this way, but lacks the insight into his own condition to hear this as anything but a refusal to "help" him.

My mother and I have watched part of this series so far. I was astounded by the honesty and bravery of the children in the Maria Shriver segment. In the same way, all my roundabout adult argument with my Dad was short-circuited by my niece (his former ward) saying "we love you and want you to be safe" in a simple, heartfelt way.

There are surprisingly few treatments of Alzheimer's in the media, although this is changing. Everyone seems to know The Notebook (and its prevalence as an IMDB recommendation is mind-boggling), but there's also Away from Her, Iris, and The Savages. I can't recommend enough Complaints of a Dutiful Daughter, a 1994 documentary that attempts -- often successfully -- to find joy and love in the trauma of caregiving.
posted by dhartung at 5:07 PM on May 17 [1 favorite]

Nothing make you feel more hollow than your own mother looking at you without the slightest clue who you are.
posted by RavinDave at 6:45 PM on May 17 [1 favorite]

Months ago I saw this fluff piece about a old guy who ate Taco Bell every day for many years. The restaurant sent him a free delivery because he started going absent, supposedly due to Alzheimers. I couldn't help but see a connection there. When you consider the debatable quality of the US mass market food supply, case in point the shenanigans going on with BSE / beef testing, the controversy over pesticides and GM, and the appearance of chemicals in certain food imports, I can't help wonder if Alzheimers isn't so much chance or genetics as it is diet or environment. Even those things can be passed down family lines through tradition, favorite foods, and living in the same neighborhood, giving some semblance of a genetic risk factor.

Of course I have nothing to back this up with, but I wonder if there's a shred of a possibility here. The only thing I've seen in this area is the aluminum can panic.
posted by crapmatic at 9:30 PM on May 17

crapmatic, this is actually a closely researched area right now:

* Study: Link Between Diabetes and Dementia
* Obesity Can Increase Dementia Risk By Up To 80 Percent, Study Suggests
* Research on mice links fast food to Alzheimer's

Also, the aluminum correlation has not been discarded.

The primary reason that we have an Alzheimer's epidemic right now is increasing longevity, but it's long been believed that environmental factors are important in developing the disease. Other dementias are less well studied; some of them may have genetics as a primary factor. There are Alzheimer's "family clusters", but they represent a minority (and seem predisposed to early-onset Alzheimer's, appearing in one's 40s or 50s).
posted by dhartung at 9:39 PM on May 17

I was young grade school aged when my maternal grandfather was in his late stages of Alzheimer's. I remember a very few things about his condition. I guess he mostly sat in his chair immobile while I frenetically ran about the house, so there wasn't as much behavior to note, or noticing being done.

One thing I witnessed, though, was my grandmother, who was taking care of him, helping him figure out what he wanted. "I want... I want... I feel something." "Are you hungry?" "I don't..." He turned out to be hungry.

Forgetting what hunger is, at least to the degree where you can express it, is something that frightened me.
posted by wires at 6:24 AM on May 18

When is this on again?
posted by Poet_Lariat at 1:32 PM on May 18