gailrae

gailrae
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rural town, The Undiscovered
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October 31
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World Citizen
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One year, when my mother celebrated an eighty-something birthday, I looked at her reflection in the bathroom mirror and asked her how old she felt. "Oh, nine, ten, somewhere in there," she responded. "Mom," exclaimed my thirty-four-years-younger-than-my-mother-self, "that's how old I feel!" "That's how old we all feel, if we think about it," she said [Roseanne's mother not withstanding, I silently edited], her mirror image glinting irony back at me. As it happens, my favorite photo of myself, because it's the only photo that captures how I think my soul would look if a camera snapped it, was taken when I was 10. That's me. Up there. It's how I feel, it perfectly represents my soul, it's how I continue to imagine myself, it's how I will probably always imagine myself. It's how I look. It's who I am.

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MAY 14, 2009 7:28AM

The Alzheimer's Project: Yikes!

Rate: 13 Flag

HBOs The Alzheimer's Project     That's right, "Yikes!"  It's what the "Host" in the Caregivers segment of HBOs The Alzheimer's Project said when Chuck, a care recipient with Early Onset Alzheimer's, reported that 12 out of 14 of his maternal grandparents' children died of Alzheimer's, including his mother.  This word is uttered once more by the "Host", later in the film, when Daphne's partner and caregiver, Jude, is explaining to him an incident of crossed medical signals that she will have to sort out.  After watching the film, I had to echo it. Yikes!  What were the producers of The Alzheimer's Project thinking when they put together this episode?!?

     Despite my immediate reaction, this episode is the hardest of the segments for me to review.  I was impressed with the first episode, The Memory Loss Tapes.  I liked the next two, and the last.  I was really looking forward to this one because I figured, considering what they did with the first two, the one on Caregivers couldn't miss and, anyway, that's the one I was excitedly anticipating, seeing as how I was a companion and caregiver to my mom for a decade and a half.  I can't quite put my finger on what bothers me about it...so, if you don't mind, I'm going to ramble in a combination of stream-of-consciousness and seat-of-the-pants writing. 

 Maybe I was disappointed because of my expectations.  Like when I saw Mary Poppins in grade school.  My expectations had been built up so out of proportion to the movie, I practically expected Mary Poppins to walk off the screen and into the movie theater.  I was disappointed that she didn't.  Still, "they" say, you get what you expect; and, certainly, one of the caregivers in the video, Mike Sanchez, got exactly what he expected in regard to taking care of his dad.  He'd been told taking his father into his home would disrupt his personal and family relationships.  It did.  People told him he couldn't do "this" forever.  He couldn't.  They told him he'll know, he'll just know, when he can no longer do it.  He did.  He was told it takes six months for someone who's been placed in a nursing home to "adjust".  It looks like that will be true for his father.  At four months, his father is still having adjustment problems. 

"It's hard to explain to someone with words until they've been through the experience.  But now that I've been through the experience, I know exactly what they mean."  And yet, almost everything he says, almost everything he tells us he's experiencing as a caregiver, sounds like something someone told him.  I know this because I heard, and read, everything he's saying, often in exactly the same sequence of words.  Almost all of it was wrong for me, and I knew it immediately as I was hearing it.  Almost all of it was right for him...or, at least, turned out to be right for him.  I can't guess whether he thought, as he heard other people tell him everything he said in the film, that they were right.  Maybe he didn't know.  But, somehow, he proved everything right.
I know there are many caregivers to the demented elderly who operate this way.  I've met them.  I've talked to them.  Sometimes I've even advised them, when they've asked.  I've found them frustrated.  I've considered their caregiving instincts blocked, but I've known there was little I could say to them to address a blockage they didn't think they had.  The times I've tried I've been called "a saint".  That's when I know they don't want anyone breaking through their block. 

"I don't think I'm a saint," Marianne, Chuck's partner and caregiver, says early in the film, after the interviewer tells her that Chuck has said she is.  "And I'm not sure Chuck really thinks I'm a saint.  Maybe in that instance, but..."  Knowing that Chuck was a caregiver for his mother, I'm sure she's right.  Seeing his character in the film, I suspect he said this with a touch of irony that he knew he and Marianne share about their situation.  She chuckles.  She stares pointedly into the camera and grins.  The interview ends.  I suspect it ends there because the "host" is dislodged and doesn't know how to recapture his bearings.
We're not saints, people.  When someone called me a "saint" while I was caregiving I knew that either they were related to a caregiver and were feeling guilty about the help they weren't offering, they were a caregiver who hadn't accepted the role and probably never would, or they were one of my close friends or sisters and were acknowledging a shrewd shared understanding.
Despite this, the editing, the lighting  and the dirge music surrounding all the caregivers in this film, whether or not they were handling the role well, regardless of what they were saying, cast an aura of sainthood around each one.  For me, a caregiver who's been accused of being a saint, it was annoying.  I'll bet it was annoying for the caregivers in this film, too, when they viewed the film created from their interviews.

At the beginning of the film the producers have captioned across the screen:  "Alzheimer's Disease progresses differently in every person."  The producers, however, forgot to mention that caregiving progresses differently in every person who takes on the responsibility of giving care to an Ancient and/or Demented One.  There's a reason for this.  The older we become, the more we differentiate from others.  It's the most important aspect of aging.  That's a medical and psychological observation; it's even the answer to a CME question on Medscape.  Thus, caregivers to the elderly, by definition, are likely to be, within their group, extremely differentiated from caregiver to caregiver, no matter what their age, because each is taking care of someone not just slightly but solidly different.  And yet, producers behind shows like this, even as they present differences, they have to, the differences are inescapable, because they are not focused on these differences and the multiplicity of meanings they confer upon elder caregiving and elder caregivers, somehow gloss over the differences to the point where it's easy for a viewer to miss them.  I think they inadvertently train their cameras and their editing to ignore the differences.  I'm not sure why this happens in most specials of this type.  Most caregivers and people around them know better. 

There were portions of the film that could have spoken volumes of accurate information but didn't.  Daphne's and Jude's relationship, for instance, should have sparkled.  All the elements were there...but the editing took the sheen away.  The segment during the support group session that Jude attended, where Jude endured it with grace, even though, with a practiced eye, one could see that she was actually politely tolerating it because that's what you're supposed to do in a support group, especially if the support you're being offered is doing nothing to support you, could have been edited into a strong statement on the ambivalent support that such groups offer and the subtle tyranny under which such groups often operate.  But, the editing made it seem like this group offered the best of tea and the height of sympathy, even though it didn't. 

Mike says, of caring for his father, Nacho, after he's moved him into a nursing home:  "We know that you just don't drop them off somewhere and everything's fine."  And, later, "When you don't see 'em every day I think, you know, some of the changes affect you a little bit more."
Jackie says of caring for her husband, Marvine, after he's moved into a nursing home: "Marvine and I talked about things, when we were younger, that I would never put him in a nursing home and he would never put me in a nursing home.  And it was like a vow that we made. [Her voice increasingly halts from here on.] But...some vows...you have to break them.  My...health...was...at stake...so...I really didn't have a choice.  It was a very hard decision to make."
Pat says, of caring for his wife, Terry, after she's moved into a nursing home: "When I put her in that home, I used to do the private duty all day Saturday and all day Sunday, because I didn't think the home was qualified enough to take care of my wife."
The scenes in nursing homes could have segued into the discussion of a real and growing problem for caregivers; the inadequacy of the professional care industry to meet the needs of their clients and caregivers; the exorbitant cost of inadequate professional care.  It could have developed into information about efforts to change this situation, like Dr. Bill Thomas' resolve to see every nursing facility in the country closed and his initiation and development of the Eden Alternative.
A good friend said to me a month ago, while spending long and meticulous hours tending to her husband who was enduring live-in rehab for a week in the same facility that handled my mother's live-in rehab for a month, "Every evening before I drive out of the parking lot I sit in my car and weep.  I couldn't help it.  The atmosphere..."
"I know," I said.  "I did the same thing."
Later, after her husband was home and doing fine, she told me, "He and I have made a pact.  If we are ever in danger [Are you getting that?  "In danger"] of going into a nursing home, we're going to close the garage, get into the car, start it up..."
I know these people well.  Both have positive outlooks.  Both bounce back like the innards of golf balls made in the 1960s.  Neither is depression or suicide prone.
But, in the Caregivers segment of this series, the moving of care recipients to a nursing home, when a caregiver's family and community was incapable of providing top-notch support, was delivered with a shrug and the camera moved on, the dirge continued. 

Despite the obvious acts of courage, love, tenderness and compassion that were demonstrated in this film, the words that resounded were, "demeaning", "frustration", "upset", "stress", "sucks", "hard", "difficult", "exhausting", "scared".
Anyone who's ever been an intense needs caregiver to someone with dementia knows it's hard.  It sometimes takes a superhuman effort to negotiate the challenges involved in giving this kind of care which is why, when I was caring for my mother and had negotiated a particularly difficult patch, I would refer to myself as SuperCaregiver and journal about looking forward to receiving my cape and my SuperTasking paraphernalia.  It can, at times, be frustrating, confining, stressful, frightening; it can provoke anger, depression, tears, anxiety, insomnia, a variety of stress related physical ailments.  It's important to give overt expression to these so the feelings don't subvert you.  This film gives them plenty of expression.
It can also be transcendent, illuminating.
It can delight you by revealing to you the surprisingly resilient and creative stuff of which you are made.
It can, over and over, evoke moments of astonishing acceptance and peace.
It can teach you what compassion really is and make you glad you learned this.
It can teach you what surrender really means and make you glad you learned this.
It can teach you how to acutely tune into a person when everyone else is willing to consider that person "lost" or "already dead" and it can make you glad you learned this.
It can change the way you feel about life, release your capacity for the mysterious.
It can usher you into moments of intimacy you never dreamed were possible with another person.
It can turn you into the person you always admired but thought you'd never become.
It can turn your life in a direction that you realize is so right for you you're surprised you didn't discover that direction before.
I've heard plenty of caregivers talk about these.  But, nobody talks about these in the film. 

Toward the end of the episode the producers have captioned across the screen:  "Families coping with Alzheimer's often face enormous stigma."  As I read this I thought:  "And HBO has just institutionalized that stigma with this program." 

Truth is, The Memory Loss Tapes was a much better caregiver film than the Caregivers segment of this series.

You want to watch a good film about caregivers to the demented elderly?  A caregiver film that doesn't flinch from the depths or the heights?
Watch Marvin's Room.
Watch Proof.
Watch Magnolia.
Watch Savages: Even though it's not what I'd consider a classic caregiver film, it covers a lot of gritty caregiver territory.
Don't watch Driving Miss Daisy: It's too full of clichés.
And don't watch the Caregivers segment of HBO's The Alzheimer's Project.

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"It can also be transcendent, illuminating.
It can delight you by revealing to you the surprisingly resilient and creative stuff of which you are made.
It can, over and over, evoke moments of astonishing acceptance and peace.
It can teach you what compassion really is and make you glad you learned this.
It can teach you what surrender really means and make you glad you learned this.
It can teach you how to acutely tune into a person when everyone else is willing to consider that person "lost" or "already dead" and it can make you glad you learned this.
It can change the way you feel about life, release your capacity for the mysterious.
It can usher you into moments of intimacy you never dreamed were possible with another person.
It can turn you into the person you always admired but thought you'd never become.
It can turn your life in a direction that you realize is so right for you you're surprised you didn't discover that direction before."

I know, that's a huge quote to place in a comment section. I know, too, that you have said exactly how I feel.

I haven't watched the Caregivers segment. And now, probably because I trust your judgment, probably won't.

It's hard to explain, isn't it? After caring for my dad, and then my mom, and seeing them out of this world I feel like a grown up. Really, for the first time in 48 years, I feel like an adult.

Maybe I'm not so unusual, after all.

Highly, highly rated.
Gracilou quoted exactly the passages in your post that struck me the most deeply. Beautiful, heartfelt writing.

A big thumb for you.
You know that of what you speak. I won't watch it.
I can see some of that pain, though I don't pretend to understand it all. I worked in a nursing home that had a 'pavilion' for those with this affliction and left in the same state to often to name. This sticks out as an offering; though, to my poet heart:

Perfect flow -

"It can also be transcendent, illuminating.
It can delight you by revealing to you the surprisingly resilient and creative stuff of which you are made.
It can, over and over, evoke moments of astonishing acceptance and peace.
It can teach you what compassion really is and make you glad you learned this.
It can teach you what surrender really means and make you glad you learned this.
It can teach you how to acutely tune into a person when everyone else is willing to consider that person "lost" or "already dead" and it can make you glad you learned this.
It can change the way you feel about life, release your capacity for the mysterious.
It can usher you into moments of intimacy you never dreamed were possible with another person.
It can turn you into the person you always admired but thought you'd never become.
It can turn your life in a direction that you realize is so right for you you're surprised you didn't discover that direction before."

peece and love,
David j
I have to share this with the daughter of the man I provide care for.
I think there should be one treatment for the diagnosis of early Alzheimers. Extensive computer training on a Mac. and an Iphone. People were much better off when it was called senility. As long as I can read, I have already put all the information I could possibly need on my computers.

It is well known how much people are shaped by other's expectations. The testa ae ridiculous and seems based on the idea there are no clocks, pdas, iphones, computers, dictionaries, calculators, pens, paper, all the necessities of an organized life.
It is just the newest way to disempower the aging.
I'm a 24/7 caregiver for my wife who was diagnosed at age 56 with AD. She is now 69 years old and has been totally bedridden going on six years. I thought the series was fairly well presented but they didn't show any of the patients who had "early-onset" AD as with my wife. Other than than that, I feel that any documentry that brings info out into the open in regards to AD is a plus. I personally have gone through most of the negative aspects of the disease but I feel blessed that I can still care for my wife and show her love in all that I do. She has been basically like an infant for the past five years and I feel like that lightens the physical demands on me.
It is very scary. Did you see the family where the father had died of early-onset AD, and five out of the surviving six children all had it? Some of those children had children. They even said that all they had to cling to was the research although it probably would not help them. The mother and one daughter did not have it. Whenever I think my life is shitty, like I do today, I just think of that family. But I do like this series, I like hearing that you can teach an old dog new tricks, a dog who exercises and eats right. I like hearing about the research.

I've been lucky in that none of the elderly people in my family who have died had Alzheimer's disease. Sometimes I wonder about my father who has diabetes. He could have diabetic dementia, and then they had an episode about the insulin connection. I do not want diabetes, but I knew that. But the fact is that only one of my close relatives (besides my living parents) lived beyond 73, so who knows? Thanks for this post. It's a great series, I think.

I didn't find the fault with it you did. I thought the caregivers and families weren't perfect and it didn't cover everything, but it was very touching at moments, like when the woman who liked to talk to herself in the mirror but didn't know her son brightened up when he mentioned her dog, and the man who sang with the Grunions. He seemed pretty content. Maybe you should get busy on your own documentary.
I would also say watch "Away From Her." It's an excellent film. Julie Christie was robbed of an Oscar this year for her work in it. It's based on an Alice Munro short story.
Excellent catch, emma, thanks. I had a bit of a problem with the movie because I'd read the short story on which it was based, The Bear Came Over the Mountain, first. Although Fiona was dementing in the story, the thrust of the story wasn't Alzheimer's. The thrust of the movie was. On that score, though, I have to agree, it's an excellent Alzheimer's movie on several counts and pulled no punches about what it can do to relationships, as well as how the dementia develops. All the actors were excellent, too, in my opinion and the production, editing and photography were exceptional.
In case anyone wants to read the story (I repeat, it's NOT the movie, not at all, even though quite a few of the scenes and internal and external dialog are in the movie), here's the link:
http://www.newyorker.com/archive/1999/12/27/1999_12_27_110_TNY_LIBRY_000019900

There's yet another Alzheimer's movie that, unfortunately, has yet to be released on DVD, at least here in the states. I'm chomping at the bit to see it, though; wasn't able to catch ANY MOVIE in a theater at the time it played. It's from Japan, called "Memories of Tomorrow", with Ken Watanabe. It's possible that it might run in an art theatre "near you" before being released. Here's the address for a review of it by Roger Ebert:
http://rogerebert.suntimes.com/apps/pbcs.dll/article?AID=/20071129/REVIEWS/71129006
I've wondered how the AD documentary series would treat the results of a prestigious study released in the Fall indicating that years of research by brilliant scientists have been wasted. It was long thought that the formation of plaque was a cause of memory loss and that when that could be controlled, Alheimers could be controlled. It turns out that the plaque (copiously illustrated in the series) is merely a side effectof the disease, and that research must now center on neurons. This is an enormous change of perspective, possibly involving an entirely new set of scientific skills. But so far as I've seen, the documentary embraces the old notion that plaque research is moving toward a cure. A PBS documentary after the truly heartbreaking recent scientific news promoted the same out-of-date optimism. Had the HBO series been put together in the Fall and it was too late to scrap the lengthy positive interviews? Or is this an extension of the George Bush school of scientific blind man's b[l}uff? Maria Shriver, whose father was diagnosed six years ago, says she's been surprised to learn there's been so much failed research. Every week, it seems, we hear reports of medical "findings" that sound more like causal fallacy than actual breakthroughs. The best outcome of some of these studies appears to be the enhancement of careers as the scientists publish their precipitate conclusions. Also, several years ago, we were told that AD is a relatively rare form of dementia. This series informs us that it is now the most common form. One wonders how much of this apparent change is owing to some kind of outbreak and how much is the result of more frequent diagnosis. In any case, the first two installments are somewhat disappointing.
I'm glad you mention this, barbara. The entire thrust of my review of the two "Momentum in Science" episodes was directed toward exactly what you mention.
[link here: http://open.salon.com/blog/gailrae/2009/05/13/the_alzheimers_project_alzheimers_101a_b_c]
In addition, as I mention in the post and as is mentioned in the supplemental video "The Story of Flurizan" (see link above for a further link to the supplemental video) , the primary piece of research that is responsible for redirecting cure search theory and practice hit the news in late June of 2008. Although the series can be brought to task for not making more of this, since, essentially, most of the information broadcast on cable flew in the face of the current redirecting of dementia research, the 1st of the Momentum in Science episodes ends with a segment on the failure of research on a vaccine. Considering the obvious attempts by the producers to keep the mood upbeat, none of the science segments or the supplemental videos avoids the fact that dementia research is a choppy sea of confusion; although neither do they push this fact.
Your last point is also well taken. There is more than adequate evidence that the stats on dementia, including Alzheimer's, are primarily due to the fact that medicine and science are looking at dementia, now. There is a stat mentioned in the program, well, instead of quoting the program, which mentions it without elaboration, let me quote Joanne Lynn, author of "Sick to Death and Not Going to Take It Anymore", copyright 2004; quote taken from pg 9, paragraph 2 of the hardcover edition: "Cognitive disability and frailty are rapidly becoming dominant elements of dying in old age, even though they are hard to track because these conditions are not reliably identified and recorded. Already, half of Americans who die past age eight-five (and one-third of us live that long) have major memory loss as part of their final phase of life (Corononi-Huntley et al. 1985)."
Notice the date of that pronouncement? Almost 25 years ago.
I was pleased, as I mentioned in my review of the science episodes, that the series even acknowledged the convoluted nature of information, theory and research at this time in the dementia game. I'm sure that the reason these episodes of the series didn't dwell on this was to try not to create a down cycle in what is the bipolar nature of dementia science, right now. Truth is, not too many years ago, the mood wasn't bipolar, so the fact that it is, now, is an improvement. It means science and medicine have abandoned the idea that dementia is going to be easy to "cure" or even ameliorate. And, considering that only a small audience share saw the series, I've made my piece with the science presentation.
Regarding your well-taken observation: "The best outcome of some of these studies appears to be the enhancement of careers as the scientists publish their precipitate conclusions." You are right, this certainly is the appearance and probably much of the fact of it. This, of course, is an economic and political problem which further complicates the study of any somatic problem.
Thank you, barbara, for your thought on this issue and your drive to comment. I truly believe that the mask is always scarier than the reality. The Alzheimer's Project did, indeed, have trouble taking off the once dominant science mask, even though current scientific theory discarded it well before the program aired. I am not happy the series did this, but, at least, occasionally, they let the mask fall away, if only for a fraction of the time, which is better than what other programs have done, as you pointed out. I'm not unsympathetic to optimism, even when it's overused. Optimism tends to encourage people, scientists included, to reach, once again, beyond failure.
Optimism Optimism is nice. As Gabriel Byrne's character says on the other HBO offering "In Treatment," "A little denial is a good thing." But it seems cruel to tell patients and relatives hanging onto the doctor's every word that a cure is imminent. I recall the joy on the faces of relatives in the earlier PBS special on hearing that a means had been found of obliterating what they thought was the brain-eating plaque. At what point would they realize the revered doctor had misspoken about the most critical question in their lives? And how in the world can the Alzheimer's Association expect to encourage donations when they're essentially telling people the battle is nearly won? They should be informing people that a new front in the war must be created and that the new effort will require enormous generosity and sacrifice. I recall the Time magazine article about a dozen years ago indicating that a Texas doctor (on the cover) and his team were on the verge of finding the key to treating cancer. Now we're told that 110 different types may require 110 different strategies. A similar article appeared celebrating an impending advance in multiple sclerosis research, though at least in that case there has been some measure of progress. Television networks frequently lead with teaser "headlines" suggesting breakthroughs in fighting major diseases, but when the report airs, we learn that the cure rate is minimal, years down the line, or highly speculative. And how many years did Jerry announce that research on muscular dystrophy for his "kids" had finally closed in on a solution? These false announcements are insulting and cruel.
Barbara! This is fun! Thank you for revisiting.
Regarding your valid issues about optimism, I've got a story for you that I think you'll appreciate and at which you'll probably shake your head in horror.
Because of my online journaling about my mother and me, I'm acquainted with a genuine Alzheimer's research fundraiser. Personally I enjoy knowing her but, professionally, I have certain conflicts with her. She continually tries to influence me to agree that my mother's experience with dementia was tragic, for instance, when it wasn't, neither for my mother nor me; although I agree with her and many that the development of dementia is often a personal, familial and societal tragedy.
Anyway, a while back, as her non-profit organization was gaining considerable and well deserved traction, she sent out yet another mailing soliciting funds. The organization's habit is to target particular researchers, find out what they're doing and what they need and mount specific fund raising campaigns. This particular claim asserted that this researcher was at the brink of curing Alzheimer's but for a particular amount of money. I knew better in regard to the research so, when I got wind of the campaign, I confronted her with what I knew and asked her why she was lying about the state of Alzheimer's research, this avenue in particular and the entire field in general, in order to solicit funds. My argument contained a version of what you wrote above: "[You] should be informing people that a new front in the war must be created and that the new effort will require enormous generosity and sacrifice."
Much to my astonishment, her guileless response was, "But, it's the truth! His research WILL cure Alzheimer's!"
Barbara, there was nothing PRish about her response. She absolutely believed this, beyond all reason and all evidence; likely she may have believed it beyond the campaign's targeted researcher's own sensibilities.
I agree with you: False beliefs about this or any area of research are dangerous because they are discouraging and cruel to the possible beneficiaries. However, at this point, because, for a reason I don't understand but may very well be obvious to others, it seems like most people are not levelheaded about dementia. It's rather like atheists arguing with theists about the existence of god(s). Observers often think that differences in consequences of either side of the argument are minimal. Unfortunately, that's not true. As you so eloquently stated, the disappointment is palpable in the faces of those who depended on empty promises and later feel betrayed. It may not directly affect the natural drive of researchers, which depends on a can-do spirit, but it certainly effects whether people hand over money. Eventually, those disappointed, and, believe me, the field of Alzheimer's is littered with these, become weary, suspicious and close their pockets.
Researchers, I think, have no choice but to be optimistic. Otherwise, they wouldn't be researchers. However, fundraisers, I think, have a duty to be scrupulously realistic. If they aren't, they are perceived as untrustworthy and can't raise the funds to support the researchers.
"When someone called me a "saint" while I was caregiving I knew that either they were related to a caregiver and were feeling guilty about the help they weren't offering, they were a caregiver who hadn't accepted the role and probably never would"

Wow, you totally nailed this. I don't really consider myself a caregiver, because I don't live with my grandmother, but I am her legal guardian. I wish I could do more, but I live in NJ and she lives in Florida. Every member of my family refers to me as a "saint" for helping out my Grandma, but the reality is, they just don't want to do it themselves. Even though a few of them live 15 minutes to a couple of hours away, they never call, much less visit. The family members who live in different states never call or write, even though I've told them how much it means to her when they do.

It's just so much easier to leave it to the "saint", as though dubbing me that should alleviate their guilt.

Grandma lives in an excellent nursing facility just south of Miami and I consider myself lucky to have found it. She only suffers from mild dementia, which is lessened by medicine.

This was a well-written and thought provoking piece. Thank you. Rated.
Thank you for visiting, SpittingKitty (great screen name) and confirming what I consider to be one of the more important caregiving observations. Certainly, it is an observation that hits each and every caregiver to the elderly and/or infirm between the eyes at one time or another.
I was diagnosed with cancer at 27 and as a result I am an ass kicking bitch when it comes to managing health care - be it my cancer or my loved one's dementia.

Canned dementia caregiving advice (doled out to me in large quantities by the soc. workers and directors at the locked Alz unit and at the Alz. Assoc hotline) feels like placating bullshit meant to ease my feelings and make this all seem easier for me, as in - "It's okay, you are one of a pack."

Yes, this is hard on me, but my goal in getting caregiving advice is not to make it easier for me; it is to find the best way to care for my loved one. What is supposedly true for other patients has not been true for him, but if others just say it over and over again, they hope they can fit him into a tidy little mold of how a dementia patient is supposed to behave. Which yes, is in direct contradiction to the constant reminder that this disease is different in each patient. Love your take on this!

Kairol Rosenthal
http://everythingchangesbook.com/
First, I'm sure you have pain to feel, but this piece is just too rambling and busy for me. Secondly, I don't think Driving Miss Daisy was about caregivers or Alzheimers. You certainly missed that point. But I did like the part where you decided that everyone who might refer to the positive characteristics of any caregiver as a "saint" was evil, a slacker, or oblivious to the entire situation. I mean, way to take compliment, girl. And I liked how there was recogntion that older people are considered "different personalities." Did you somehow think they were all alike before you had the opportunity to learn differently?
Rose, I'm pleased you rambled my way. I was wondering if there were irascible contrarians here at OS and, here you are. Welcome! Please come again! I can always use a good soul sharpening!
I so wish I had read this post during my dad's rapid decline from
Alzheimer's Disease and during my four+ years caring for my mom who suffered dementia principally from a head injury incurred by a fall down a flight of stairs landing on her head. I watched the transformation of my new husband and was awed by his tenderness, humor, wisdom.

I will read this again and again and send it to anyone I know who is a caregiver. Bravo.