Maybe I am being a pain. I will let you decide. A spouse who is writing a book about her experiences brought this article to my attention because she was so upset about it. I invite you to log onto my home page - www.thealzheimerspouse.com - to read the blog and the article.
If she and I are over reacting, I would like to hear from you. If you agree with us, I would like to hear from you. All respectfully written opinions are welcome.
Joan, I can't read the article because I'm sure I will get really mad and won't be able to do anything about it. On the other hand, if you are going to contact the author and would like some comments from us, I would be happy to read and comment.
I have so many examples, much like you, that show how this disrupts our lives and how horrible it is.
I skimmed over the article after I started getting angry at what I was reading. Let her walk a block (I know the saying says a mile, but we all know it would only take a block) in our shoes & maybe she wouldn’t be so quick to make those remarks.
1 in 8? 1 in friggin' 8? Like that's not consequential??
Only someone who hasn't dealt with AD intimately would be surprised about anyone stockpiling suicide pills. (note: apparently her mother suffered AD. Hmmm, I don't know. Maybe she wasn't a primary caregiver?)
Actually, the disease CAN be pretty accurately diagnosed with what's called a PIB PET scan which highlights amyloid plaques, even before there are significant symptoms. FYI to the author.
Summary...I won't say it made me mad, per se. But it does seem to be written from a relatively clueless pov, maybe like that doc whom we mentioned a couple weeks ago who was a little too "it isn't ALL bad, it can be happyhappyhappy!" kind of thing.
Maybe she's scared and wants to sweep it under the rug and not think about it. Like my brother-in-law who, 4 years post-diagnosis, still sort of thinks Jeff has Lyme Disease. (no genetic connection is why he wants to think that, is what I figure.)
This was written by a professional writer? IMHO fiction writers do a better job of research for their stories and claim any errors are their own.
To me this reads like a written version of "stone soup". You know---the community where everyone was so poor they couldn't feed themselves until one bright soul put on a big pot of water to boil and added a stone. Someone asked what he was doing and he said, making stone soup, as he added his lone carrot. The other person said, "I have an onion. If I add it can we share?" It was agreed. Eventually everyone contributed and they had a huge pot of rich soup for all.
Unfortunately, this author's efforts to make "soup" fall far short. Bits and pieces tossed in the pot without regard for quantity, quality; and accuracy lead to misinformation and confusion. There are a very few tiny kernels of good material lost in the dross, but I question if many/any will find them.Even fewer will search them out.
This certainly only adds to the negative material clogging the information pipeline regarding ALZ.
In movie reviwing vernacular I give this an ALLTHUMBS DOWN.
I think this article highlights the dangers of taking one experience and extrapolating it to everyone else for a disease that is so incredibly variable and leads to such a wide variety of experiences. The author is very fortunate her mother had a very calm, idyllic course (from what she wrote). It does not sound that her mother tried hitting her and cursing her on a daily basis or tried hiding her used incontinence pads around the house or had vivid disturbing hallucinations that kept her up at night and got her kicked out of her assisted living facility. She could afford an assisted living facility. Articles like this and the consequence on other families of assuming one knows what another's experience ought to be keeps me humble that my job is to affirm each person's experience and help them through it, not tell them what they should be experience and how they should be reacting. I'm sure she was somewhat well meaning but ultimately somewhat presumptuous in this article. That's a shame.
After seeing and living with all that my husband went through I would kill myself in a heartbeat if I could remember how to do it. You old-timers know what we went through. Ours was not the gentle sweet forgetting-it was violent, mean and dangerous. It lasted too long. My once brilliant, career successful and caring husband became a demon. He died in diapers, no dignity and I hope no awareness. When he had a rare clear moment tears ran from his beautiful blue eyes down his cheeks. He died choking on his own saliva. I don't want to put my family through that horrible experience again.
"All respectfully written opinions are welcome" ..... It will be hard, but I will try...... I am angered but more offended by the article. I tried to write her a reply, but I could not find a way to do so on that website.
She wrote this about her mother: "She recited her favorite poems and surprised me with new material."
CLEARLY her mother did not have Alzheimer's!
"Much mental and emotional ability can survive mere memory loss" .............. MERE MEMORY LOSS!!?????? She obviously has no clue to the real nature of Alzheimer’s!! I would like her to come visit with Lynn and I. Spend some time witnessing what Alzheimer's has taken from him, from us........
My husband is an unwilling victim, held hostage by the chains inflicted upon him by Alzheimer's. He can no longer walk and is bedridden. He can no longer eat the foods he previous enjoyed; now all he can eat is pureed foods. He can't do any of his basic care needs that we all take for granted. He can't even do simple things that a toddler can, like comb his hair or brush his teeth. He needs total care. On top of all these monumental losses, there is also the DEVESTATION of not just "memory loss" But the loss of all essential aspects of his life that made him a unique individual. He lost his past, his thoughts, his morals, values and beliefs. He lost everything he was, and I lost everything we use to be together....... Mere Memory Loss??? …. An insult to all of us living this hell!!
Mere Memory Loss my FOOT. DH went into the kitchen a few minutes ago to make a cup of coffee. He turned on the light and then asked me how to turn it off. He is watching a baseball game on TV and two minutes ago asked if there was something else I wanted to watch, I told him "No". ONE minute ago he asked if there was something else I wanted to watch on TV!!!!!! On the bright side he seems to have forgotten his paranoia for a couple of days. I hope they aren't famous last words.
joshuy hit the nail on the head. Her mother's experience cannot be extrapolated to others.
It amazes me each time a prominent newspaper publishes such an ignorant point of view. But I have given up commenting on such articles. For one thing, using the word "ignorant" usually is deemed offensive and my posts never make it past the automatic editor.
Joan, if you wanted to submit a rebuttal, I would be happy to have you include my name and hometown on it. It's "The New York Times" - a great platform to educate! If they would publish a rebuttal...
This article is pure Ivory Tower Bilge! IF this woman's mother actually had ALZ and had SHE been the one taking full time care of her, she would not be writing this. 1 in 8 is not something to be unconcerned about...and "mere memory loss"? Is she kidding? Mere memory loss...is it mere memory loss when our LO looks at us and does not have a clue who we are? Is it mere memory loss when they can no longer drive? Is it mere memory loss when they don't know their own house when they stand if front of it? Is it mere memory loss when they don't realize that eating the deco rocks in a plant can harm them? Is it mere memory loss when they pee on the front room carpet? Is it mere memory loss when they can't find their own way around their own house? Is it mere memory loss when they can no longer hold their own head up? Is it mere memory loss when they forget they have to swallow? Is it mere memory loss to find they wear their clothes inside out? Is it mere memory loss when they can't remember their own birthday?Is it mere memory loss when they suffer anosognosia and don't know why they need to bathe and change their clothes, brush their teeth? Is it mere memory loss when one who used to be so particular about their looks now look like a relative of the Unibomber? I could go on.....
No this article was written by someone whose relative, mother in this case, just happened to have some kind of memory impairment and they did not have the 24/7 365 day watch..she was not the one who had to scrap her work or activities or social life to care full time for another, who watched the love of their life disappear before their very eyes, or see the camping equipment in the garage that they can no longer enjoy, the trips that can't be taken, that have the calendars full of doctors appointments, who have to supervise the taking of medications, who have to become a nurse to know when to get the LO to the hospital or watch for complications from other diseases?
This " know it all" will no doubt make the rounds of all the chat shows on the major news networks and spill this bull to anyone who will listen..and we who are trying to make a difference and who know how badly aid is needed for this disease that sends some of us to the poor house in the end, will be marginalized yet again.
Do you think that all this talk about AD is really starting to scare people. I have seen more stories in the past few months than I can ever remember. No one wants to think they are going to get it and there is no cure. So if we make it sound "not so bad". Well then it is not so scary.
I think blue is right. People want a way to think of it as "not so bad." They also (as we have learned) want to cling to the hope that it is preventable, and that's how Jean Carper sells books. The truth is too hard to handle.
The article is certainly flawed and the author is in a dream world if she thinks most AD patients are like her mother was; however, I took her statement about an AD patient's mind (even with memory loss) as being able to retain other qualities that make us human as a positive one. The most outrageous statement I've ever heard regarding AD came from a clergyman (of all people) who explained that what makes humans different from animals is our intellect. And with dementia, he said, one loses their intellect. You see where this is going--he even brought up euthanasia. I found that more distasteful than what was said in this article.
Marilyn, What that so called "man of the cloth" said is beyond outrageous. If that is his opinion then marriage vows mean nothing at all to this man. If a person with dementia has no intellect than what are we married to? Protoplasm? I wonder what his advice to one of us would be, morally speaking, about living with an "animal".good grief.
Good grief is right. Someone else told me that euthanasia has been discussed in medical circles because of the future explosion of AD. We baby boomers had better watch out.
It just reminds me of all the articles about doing puzzles, exercise, diet, lifestyle changes, etc will prevent you from getting AD. Hogwash to them all. May they be the next victims!
Dear Joan once again a person who has an opinion engaged their mouth or in this case a poison pen to write an article about something of which they had an opinion about and really had nothing else on which to call up as first hand experience. And as we know opinions are like A**holes everyone has one. nuff said
Apparently it's not just Elinor Fuchs, an emotionally bankrupt drama queen from Yale who studied her mother's changing speech patterns during AD (I'll rent an emotion for 400 Alex); but, also Margaret Morningrage watch who comes out of my Gullette from the writer and watercress sandwich crowd who's intellectual depth is exhausted by watching a play once by three guys named Mark Dantonio which was so off broadway that it was in Korea, or was that Lee Dingdong's at Cannes that was panned?
Want to talk about impaired cognition? Here's the article boiled down for those in a hurry:
I'm making sentences with big words so I'm a writer. I went to a play. Some British guy is dead but he's still influencial. Lets all pretend that a terminal disease can be cured by imagination. My mother got it and she got to forget about George Bush so it's not all bad and I'm really this deep (hair flip) I have no idea what I said but I wrote this. Oh look, I'm late for my tennis lesson with Siegfried.
This woman is definitely stunted, both emotionally and intellectually...and she has the gall to write an article about something she has done very little research on other than her personal experience of seeing her 90+ yr. old mother going through some forgetfulness issues! Amazingly ignorant article...Joan you are not over reacting at all! Perhaps this woman should log on to our site and read some of our testimonials; or maybe visit a Nursing Home caring for AD sufferers of all ages; or attend a caregiver support group session...But you know what? She probably wouldn't even "get it" if she were invited into one of our homes to spend a few hours with one of us caregivers and our spouse!
Thanks, carosi. I read the article, and agree with the above comments. I also looked up her position at Brandeis University and found her e-mail address: mgullett@brandeis.edu. I'm not real good with words, so maybe some of the rest of you could e-mail her your comments.
For what it is worth, the author was a member of the Boston Democratic Socialists of America, and spent time in Nicaragua supporting the Sandinistas. My guess is she will stand by her "expertise" no matter how wrong she is, and no matter what anyone says... (no offense to any socialists)
No offense meant Mary, but I doubt her politics have much to do with her grasp of Alzheimer's and its implications. I think we span the political continuum here on the Board. Although her political activities do throw into question Wolf's assertion that she's late for her tennis lesson with Siegfried. More likely, his name is Joaquín.
I didn't mean to imply her politics affect her grasp of AD - only that her committment to her politics - would indicate she may feel stronlgy about her opinion she shared in her article.
She has written several books and is in the progress of writing another related to ageing and ageism. This appears to be her current passion.
Ok, gotcha. That could be so. I would be interested in her general take on aging, given her cavalier attitude toward AD as a serious problem, although in GENERAL terms a positive outlook would seem to be an asset. When you get so positive you start sweeping things under the rug, well then Houston, we've got a problem.
here is a lengthy excerpt from her 2004 book "Aged by Culture" http://www.press.uchicago.edu/Misc/Chicago/310620.html
I think she wants to dispell the negative stereotypes associated with ageing - but as you said - there is a giant leap from that to entering a land Oz where Alzheimer's can be viewed as a normal part of the process, or as an overblown condition, which is not so horrible.
Since she is well published, and an "expert" on the topic of ageing, perhaps a barrage of "Are you kidding?" emails may have her take a second look at the topic. Who knows?
Frankly, I had a difficult time understanding the main thrust of her article - was it that our society is becoming hysterical about normal forgetfulness associated with ageing? - or was it that AD itself is not so bad?
I read the article twice and I guess I am missing something. I got the impression that she was writing about the people who treat Alzheimer’s the way they used to treat cancer. That she was saying there is no reason to be scared of people with Alzheimer’s. That the fear she was talking was misplaced and wrong and that people with Alzheimer’s should not be treated as outcast and that they are still people. We all talk about not seeing friends that stop coming by because they are uncomfortable with being around the person with Alzheimer’s. It sounded to me like she was saying that they should not be afraid of Alzheimer’s and that the person with Alzheimer’s is still a valuable person. I don’t see this as an attack on either those with Alzheimer’s or their caregivers. What I think she was trying to say is that every person that can’t find their car keys doesn’t have Alzheimer’s and they should not go off the deep end because of a onetime event. I know I have had times when I couldn’t find something or remember something. That still happens once in a while but I don’t have Alzheimer’s. Maybe I am reading it wrong but I just don't see anything wrong with it. I saw it as a positive artical.
I agree with you Jim. A fair reading of her article concludes what you did. She didn't actually deserve what I wrote about it.
The article though is too hard to decipher because the first eighty percent is used to assault the old paradigms and it's that part that is fleshed out with too much detail. The main argument is almost lost that we should take on more realistic ways to accept and deal with memory loss.
The truth is your summary of her article is much clearer than her article.
Good point Anchor and Wolf. It may be just a poorly constructed thesis as opposed to true obtuseness. I definitely did get the impression that she wants us to revise our view of the DISEASE of Alzheimer's as not such a bad deal, so if that is not the case some further explanation from the author would help.
OK...I read it again...I stand by my opinion...I wa s probably a little harsh with the name calling, though. I really don't understand what she is trying to say...the article goes in different directions. I guess she is saying that people in general stress out too much if there is some memory loss, and assume that it must be AD. And that even if someone has some memory loss, they still have some of their brain power left; so they can still be creative, imaginative, etc. and the person and/or family should not be discouraged. But I still think she needs to educate herself more on the realities of the disease of Alzheimers, and other dementias; so that she will realize WHY our society fears it so much....she needs to realize that such a diagnosis IS a big deal, and carries a lot of horrible consequences with it for the person affected and his/her caregiver. I feel that if someone decides to become concerned about memory loss, and maybe be alert for any further signs of dementia, mentioning this to his/her doctor wouldn't hurt, and testing, treatment could begin if needed. Perhaps the author should have discussed further the actual signs/symptoms that SHOULD be a concern...
I just read it for the third time; I too stand by my original post. I too understood the gist of the article to be the fear of old age and dementia, the problem for me began when she downplayed the "horror of Alzheimer's".
ONLY 1 in 8? Seriously, is she in denial? That number is expected to increase drastically, there is cause for alarm.
“Advocacy groups, manufacturers of so-called anti-aging products and the news media have, for varying reasons, tended to inflate the number of sufferers and the horrors of the condition.”
Inflate? I beg to differ!!!! I don't think there is enough information telling the TRUE horrors! And it is horror, only someone who hasn't been affected by it would make such a gross understatement.
The problem with this article is that she only has the experience of mild memory loss with her mother. She hasn't witnessed someone she loves wasting away.....If ALL we were dealing with was mild memory loss.... perhaps I wouldn't be so offended by her words.
I once wrote that I wish AD was not called a disease of forgetting--it is so much more than that. I suspect many of you have explained that losing your car in the parking garage is NOT a sign of AD. So much is written & advertised about it in recent years that more and more people are aware and, rightfully, but needlessly frightened. So she's right on that point, but the rest of it is elitist gar-bage. I remember telling our adult children that it would all be OK, if Dad forgot something, I'd just remind him. Boy, did I have a lot to learn. When the brain cells that control your senses are damaged, you can 'forget' how to hear and smell, how to dress to be warm or cool, if you just ate or are hungry, how to control elimination. You can't remind someone how to do those things, you have to do it for them and I agree with many of you who think her mother either did not have AD or she was never an intimate caregiver.
My 89 y.o. sister is senile, demented, if you will, but she does not have AD. I suspect it is vascular dementia. While I will not diminish dementia, it isn't always AD, she's much easier to take care of and I think the general public--and possibly this writer--who badly needs an editor--does not understand the utter devestation that AD brings. Yes, a lot is still there--my DH smiled at me the day before I died. But we all know of others in a vegative state. I don't think I'm mad about the book--there are others like it, mostly I'm just saddened.
I still maintain the article is poorly written and further, largely unsubstantiated. Where does the 1 in 8 statistic come from? Is it 1 in 8 Americans? 1in 8 in the world? Right now the US count has been published at 5.+million and rising fast. That's NOT an insignificant number. My Mother, soon to be 83 has some cognitive problems. Every change has been or is being checked out. She has vascular and heart issues, among others and we (all 6 of us) are encouraging her to go into an ALF. She admits she'd like help with showering and some housekeeping chores. We've lost count of the times she's "fallen and couldn't get up" on her own. The Drs. have told us her decline isn't AD, but is age related. To me the author's mother's decline sounds more like my Mom's and not necessarily related to AD. Implying it is (undocumented) and is not "that bad" to deal with is invalid in discussing AD.
Not at all well written and therefore detrimental to the public's understanding of AD.
Charlotte--The Amy T article doesn't define what type of care she is talking about. It refers to medical care or care of people with Alzheimer's, but doesn't give any examples. I think many of us have decided on our own NOT to proceed with medical treatments for concurrent conditions--is that what she's referring to? Or is she talking about the type of dementia care done in facilities (I don't think so, because some of that is private pay and the person she is quoting is referring to government expenditures). I'm confused.
I share Marilyn's uncertainty about the article Charlotte referenced. The writer of the article is Amy Tuteur. Even reading the comments she herself posted following the article, I'm unclear what position she personally endorses, so I have to assume she's just raising questions. She does extensively quote the medical ethicist Baroness Warnock, who seems to present the questions more starkly.
Even so, I'm not sure what—if pinned down—either would have to say about a answer to questions they're raising. There is quite a bit of talk about extending life via tubes and ventilators and whatnot, and I'd have to agree with Marilyn that many of us have already concluded that such interventions are off the table as far as what we'll allow for our AD loved ones.
I guess the sticky wicket about the article is that it raises the specter (at least in people's minds) of imposed euthanasia, and I may be naive, but I can't see our society going in that direction. Interestingly, fantasy novelist Terry Pratchett, who suffers from PCA (my husband's condition as well,) has stated fairly frankly that he is considering the "Swiss option" for himself, which means self-elected euthanasia. As the caregiver of a PCA sufferer, this leaves me to wonder: Will he actually be able to give the nod to such a procedure all by himself by the time he's decided he's ready? That's the self-limiting problem with our fantasies about how we would choose suicide. By the time it's time, can you still make the choice? In many cases the answer will be no. I know that Jeff no longer has the self-awareness to make that choice.
So, I guess I'm saying that the article doesn't make me angry, it just makes me need her to clarify. "What exactly is your point, ma'am?" I want to say. Then we can discuss specifics.
What I took from the article is the now common argument that money should be spent on the children who have not lived life yet and not on those over 65 who have had their chance at life. Much of 'socialized medicine' advocates that. I know here most of us agree that care to keep them comfortable and not take any steps to prolong their life. But, in her article she seems to argue against even that. We all know this disease can go on for years which makes it such a costly disease because so many end up in nursing homes that are outrageously expensive. She seems to advocate even not allowing that - so where are they suppose to go when they can not be cared for at home?
The link was posted on Memory People in Facebook and most pulled the part about spending money on medical care for the young and not the old.
Yeah, I see how her thinking could lead to thoughts of old people being set adrift on ice floes. OTOH, on a strictly theoretical model, many of us would opt to save the child vs saving the 70 year old with dementia in the old "the lifeboat has space for 1 person" scenario.
Hopefully, a real life extension of the "how to distribute funds" question would be to put more into research so that AD could become preventable. Then the little kids get to grow up AND not lose their brains.
Right, I don't know what fate Baroness Whats-er-name would wish on old folks whose families can't care for them. Let's not put her in charge.
Emily, I think that the Baroness is implying that euthanasia is the answer to the problem. However, I can't see that becoming a reality in this country--look at the rukus about Dr. Kevorkian. There is no other altermative I can think of if families can't care for them and the government won't fund care, except require everyone to purchase their own LTC insurance? The government is trying to encourage that, but it's certainly not mandatory right now.