Comment Author briegull CommentTime 30 minutes ago edit delete
NOTE FROM JOAN: briegull posted this under a different topic, but I thought it was important enough to have its own discussion, so I moved it here.
This is in the NYTimes today. What is so very sad is the last couple of paragraphs! This is what we have to combat, the idea that it is disgraceful for someone to admit, or their family to admit, having AZ.
LONDON — Former Prime Minister Margaret Thatcher has been suffering from dementia for at least eight years and has often had to be reminded that her husband is dead, according to her daughter, Carol.
It is common knowledge that Mrs. Thatcher, 82, has been fragile since suffering a series of small strokes in 2002 and since the death of her husband, Denis, in 2003. She gave up public speaking several years ago, on the advice of her doctor, and makes far fewer appearances than she once did.
But while people in Mrs. Thatcher’s circle have long known that her mind is not what it once was, they have not spoken publicly about it until now.
Details of Mrs. Thatcher’s condition are recounted by her daughter in a new memoir, “A Swim-On Part in the Goldfish Bowl,” an excerpt of which appeared in The Mail on Sunday.
Carol Thatcher, 55, said that it was during a lunch at a London hotel in 2000 when she realized her mother was mentally slipping. They began discussing the Bosnian conflict of the 1990s when, to Carol Thatcher’s dismay, it became clear her mother was confusing that crisis with the Falklands war of the 1980s.
Mrs. Thatcher’s confusion was all the more upsetting because she had always been known for her prodigious memory and grasp of minute details.
“I almost fell off my chair,” Carol Thatcher writes in the memoir, which will be published on Sept. 4. “Watching her struggle with her words and memory, I couldn’t believe it. She was in her 75th year, but I had always thought of her as ageless, timeless.”
In the memoir, Carol Thatcher describes how her mother began asking the same questions over and over, oblivious to the fact that she was doing so. She describes how on the day of the terrorist bombings in Madrid in 2004, Mrs. Thatcher was entertaining friends for dinner but, by the time they arrived, had forgotten about the bombings.
Most distressing was the fact that after her husband died, Mrs. Thatcher had to be reminded repeatedly that he was gone.
“Every time it finally sank in that she had lost her husband of more than 50 years,” Carol Thatcher writes, “she’d look at me sadly and say, ‘Oh.’ ”
Nevertheless, she writes, Mrs. Thatcher still has periods of lucidity and can remember details about her tenure as prime minister, which lasted from 1979 to 1990, and stories from the past.
Writing in The Daily Mail on Monday, Amanda Platell, a former press secretary for William Hague, who served as Tory leader from 1997 to 2001, said she looked at Ms. Thatcher’s revelations as a betrayal.
I did a google search for Carol Thatcher and found several sites critical of her revelation. There has to be a way to get our perspective out there. Any ideas?
I feel strongly that the more people come out about this awful disease the better. Ronald Reagan, Charlton Heston, Rita Hayworth. and who knows how many who are kept secret. Now Margaret Thatcher. Intelligent, important, well known people get this disease, and the more public that becomes, the harder the work will be to prevent it.
I'm pretty horrified that a caregiver, because that is what her daughter is, is being vilified for telling the world her own story. Amanda Platell should be hanged in effigy. And yes, that is a bit much, but where are the people who should be supporting Ms. Thatcher (the daughter) in her own caregiving journey? And how do we go public that we do?
So, what are the reasons someone would be upset about the revelation of dementia? How could you possibly be hostile to those who are showing us a human side of an inhumane disease? If you think about it, this hostility is not reserved to famous people. We see it in our own families' reactions, too. Children, sisters, brothers, (and the spouses) often get very upset when someone suggests early on that dementia is involved.
I see a few key points. Not all apply to our spouses, since few of them were heads of state or film stars (!) but you get the idea.
1. AD takes the person OFF whatever pedestal they were on. And knocks them far off. You don't want to accept that whatever status or talent that person had is gone, never to be retrieved. How can you be brilliant one month, and in effect mentally retarded the next?
2. A feeling of "It can happen to me too". This is another disease that people just do not want to think about. At least with cancer you have a shot at living, and if it is terminal cancer you are gone pretty quick, relative to the AD 20 year nightmare. "Don't tell me about the person with AD; I don't want to know it could happen to anyone I loved or admired."
3. Especially for our heads of state, the question is always there of, "So when exactly was their judgement impaired? During the last two years? During the Gulf War? During the Arms Race? During the Cuban Missile Crisis?" How do you know that the leaders of the free world made the judgements they did with a sound mind? That's scary. It's another item of AD that we don't want to accept or think about. When does it begin? Did our spouse have full capabilities when they babysat the grandkids last year? Even for ourselves, we wonder on a daily basis if our occasional memory problem is AD.
Problem is, I don't know how to solve the negative perceptions. Usually education makes things better by taking away fear, but I think this disease just gets scarier the more you know about it. The only way to make it more socially understandable is to show that people do get it, and it is preprogrammed in, but your life before AD is not valueless. AD patients can't be seen as a ticking time bomb, leading a useless life until Dx. I guess it comes down to showing that the AD patient is a separate person, one prior to and one after the disease.
Interestingly enough, that's what this whole website is about, isn't it? You have a partner that is no longer the person you knew, and accepting that is the only way you will be able to come to terms with AD. So as we accept our spouse, we need to accept that Margaret Thatcher and Ronald Reagan were still the capable leaders we knew first, and AD patients second.
Well, that was brilliant thinking. But long. Sorry!
Very Brilliant Thinking and I say AMEN! My husband was seeking election to public office back when we were trying desperately to find out 'what was wrong' (so that he would NOT run) However..the doctor ENCOURAGED him to run and he was elected. We were stunned...The first year was relatively ok.. the REST OF THE TERM was a complete nightmare from all the perspectives you mention. He never was concerned, had complete FAITH in his staff (they knew finally in the last year) but WE knew how vulnerable he was..but had no diagnosis AND the doctor had encouraged him!! We managed through but I'll tell you that many many times I thought about Nancy Reagan and what it must have been like in that circumstance. Again.. Trisinger.right on the money!
Without having read Carol Thatcher's book, I think it is difficult to know whether she did a good thing, or a bad thing. Was she trying to educate the public on AD? Or was she trying to exploit her mother's suffering for her own personal gain?
We have to remember that, at least here in the US, we have HIPAA laws forbidding anyone from accessing private medical records, even a spouse or a child or a parent. Did Maggie Thatcher ever AGREE to having the intimate details of her illness splashed across the Mail on Sunday? (Carol's book is being serialized in a major newspaper prior to publication.)
I think there is a huge difference between the AD patient himself making the decision to go public, and a relative or friend offering up private, and probably personally embarrassing, glimpses of what AD did, especially to a head of state. And especially getting paid big bucks to do so.
I found a couple of threads discussing the book, and one of the things that struck me is that very few of the posters were discussing the disease, or the need to educate the public. Mostly, they were using it as a feeding frenzy to praise or denigrate Thatcher for her public policy, and that of her party.
Then there was this review:
...Meanwhile, the details of Thatcher's disease are being doled out in Britain's The Mail. The author, Thatcher's now 55-year-old daughter -- a twin, whom the British tabloids portrayed as jealous of her more flamboyant and doted upon brother -- appears to have written her own 'Mommy Dearest.'
...Reagan's youngest son offered his condolences on Thatcher's now-public condition and agreed the insidious disease can strike anyone, regardless of their mental acumen.
Still, Reagan, whose family only painted a positive face of the once-hearty former president, was critical of Carol Thatcher.
"What exactly does the public learn when we hear she doesn't recognize her family?" he asked. "Everyone knows what it does and what happens: You forget names, places, things. To detail that is shameful."
"People should think about how they would feel if it were their mother," Reagan said of the intimate details of Thatcher's mental decline. "The word is 'salacious.'"
Amanda Platell of Britain's Daily Mail, which is serializing the memoir, agreed.
"It felt not only like a terrible invasion of an old woman's privacy, but a personal betrayal," she wrote. "There's a time and place for such memoirs. But this was not it. Too soon, Carol. Too much detail."
In short, was Carol trying to educate the public, or get even with her mother by publicly humiliating her and tarnishing her reputation?
If Maggie Thatcher wants to go public, then kudos to her. If someone else takes it upon themselves to reveal very private matters for financial gain or revenge, then shame on them.
So the more I think about it, I think that it's a good thing to know that this disease can strike anyone, even the brilliant and wildly successful. But do we get so sidetracked by the career that we fail to see the humanity?
Is it better to use the common person, the next-door neighbor, as examples of what can happen, to get the rest of the world to realize what's going on here? Which people are they more likely to identify with? Which examples are more likely to hit home?
Its my own gut feeling on this take as well but i do believe the daughter may be exploiting the situation in the tell all outing. i agree that if Margaret herself agreed to a book about what her situation being done, then that would be different but to out her for financial or jealousy wouldnt be acceptable. its my own guess but maybe the daughter has some special not so memorable feelings with regards to her moms exceptional public life and some criticizing of her as a mother..its been seen before that with huge personas sometimes we find kids/family with ideas of being neglected some. i have no idea why she has chosen to out this now. but being a caregiver isnt any easy task as we know, maybe hers isnt any different than ours and shes having her own crisis along the way dealing with the loss of her super mom..at any rate, it is shedding attention whether good or bad, on alzheimers. divvi
This website might give some insight into why Carol Thatcher chose to tell all now. http://www.independent.co.uk/news/uk/politics/carol-thatcher-i-partly-blame-mark-for-mummys-anguish-519009.html
I liked all of Sunshyne's questions. They made me reflect and re-evaluate some of what was said in the articles criticizing Carol Thatcher and what I thought about her. But - I do think that knowing that people such as Margaret Thatcher get alzheimer's as well as the "common person, the next-door neighbor" might have an impact on the tendency to blame people who get it for not keeping their minds active, etc. No one can say that about Margaret Thatcher.
Thanks, Janet, for the article. It shows us how offspring may react. Finally, mom, I can do what I WANT!
I make no secret, nor does my husband, of his AZ. But whether or not he would give "informed consent" for me to go public, I don't know. Judy, what do you think about yours?
No, Briegull, I don't think my husband would ever give his consent to have his condition announced publicly. He refuses to agree that anything is wrong other than that possibly the 'doctors harmed him when he was in the hospital for the bypass surgery'. However, he DID tell his office staff that the drs. told him he had alzheimers. Not sure exactly what words he used for it however. I haven't read the articles about Ms.Thatcher but the issue of having a loved one trying to carry out public duties when needing so much help was agonizing for us at that time. If this daughter's motives are suspect, what a shame. In any workplace, this disease manifests itself sooner or later and its just hard. Especially if there is no apparent awareness that anything is wrong. My husband's problems were ALL caused by others. Thankfully now, our community is fully aware and so far everyone has been kind. Bless em.
I doubt Mrs. Thatcher would have wanted to go public when she became aware of her disease. To "out" her when she could not grant permission was cruel. The public needs to be aware of how common the disease is among the gifted people as well as the plebeians-but I don't think this is the way. It does smack of Mommy Dearest.
I haven't read the book, obviously since it isn't out, but it is supposed to be the daughter's autobiography. I have no idea if she did a good job of writing the book, although she is credited as being a professional journalist and writer on some of the web pages I saw. I don't know if she was mean spirited or kind in how she presented her mother's journey down into the hell of Alzheimer's.
But I find myself wondering if it is always wrong to admit that your parent has a disease that is normally hidden away. It is, after all, the writer's life as well as her mother's that is being affected by the disease. If her mother had had breast cancer, or gynecological cancers, would we be shocked that it was being made public. I'm picking those cancers because they are the ones that were most likely to be hidden away not that long ago.
Starling, I found myself wondering the same thing today. I feel ambivalent at times in sharing my personal story with AD because of the misconceptions about the disease and stigma that still surrounds it. Also, there is still an ignorance of AD's devastation as evidenced by the thoughtless jokes that are made about people with AD. We are afraid to share some of the odd behaviors or graphic details in order to protect the dignity of our loved one. However, these odd behaviors are not representative of the true spirit of our loved one. As Joan as put forward, this the the "devil" AD.
Well, I made the decision a few years ago to be interviewed by a TV reporter about my husband. They were doing a story about Alzheimer's Disease and featured the facility in which my husband was living. I did make sure they would only film my husband from the back because he looked so bad in late December of 2003. We talked about his age, how difficult it was to find a place for him and how I was handling the situation. I got a lot of calls from old friends who had no idea what we were living with.
What's so good about here is that we can pull a "limited hang out" - isn't that what Nixon called it, or his friends? We let it all out here but feel safe enough to think the tabloid press isn't monitoring us to see if any famous people are telling tales on their spouses. This is the best way.
I know that my DH would not want his story splashed across the country, even though it is something to be told...he had retired in 2001 & we were to begin our "retired lives"...diagnosed in 2004, he didn't want to tell his kids or his family...he said i could tell my family, which I did (needed someone to talk to about it all), but it was hard when his family 'found out'...it's not that he was disgraced about his situation, but more of a privacy thing, i think...he just wanted life to "be" without pity or sympathy...what's wrong with that for the person affected?? perhaps that's what is communicated in the "early stages" of alz, i.e Reagan...and in honoring his wishes, I would have kept it silent until the end. When we joined a support group, we were asked if we'd mind having our pics taken & our story told...DH said no...i stuck with him, and still would to this day. I feel it's a "personal" choice, even it it means that the public doesn't know ALL there is to know...each person has to deal with it in his/her own way -- same with our kids, realtives, friends, neighbors...i try not to 'judge' them, altho sometimes hard, but we just don't know how we'll respond to something until we walk in the shoes...
The problem is ignorance and taboos are fed on just these fears. Keeping them quiet and hidden will only feed the ignorance fire. I say tell the world! It is no secret Margaret Thatcher has dementia. It has been known for at least 3 years. So I assume all the hub bub is about the book her daughter wrote. I haven’t read it, so I have no opinion.
I will only say, the more people speak out, the more attentions and therefore money, Alzheimer’s research gets! It can’t be denied, when famous people have a certain disease, it gets more attention. I will always remember Roland Reagan’s letter to the nation…. A true hero in my book
“ Nov. 5, 1994 My Fellow Americans, I have recently been told that I am one of the millions of Americans who will be afflicted with Alzheimer's Disease.
Upon learning this news, Nancy & I had to decide whether as private citizens we would keep this a private matter or whether we would make this news known in a public way. In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures we were able to raise public awareness. We were happy that as a result many more people underwent testing. They were treated in early stages and able to return to normal, healthy lives.
So now, we feel it is important to share it with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it. At the moment I feel just fine. I intend to live the remainder of the years God gives me on this earth doing the things I have always done. I will continue to share life's journey with my beloved Nancy and my family. I plan to enjoy the great outdoors and stay in touch with my friends and supporters.
Unfortunately, as Alzheimer's Disease progresses, the family often bears a heavy burden. I only wish there was some way I could spare Nancy from this painful experience. When the time comes I am confident that with your help she will face it with faith and courage. In closing let me thank you, the American people for giving me the great honor of allowing me to serve as your President. When the Lord calls me home, whenever that may be I will face it with the greatest love for this country of ours and eternal optimism for its future.
I now begin the journey that will lead me into the sunset of my life. I know that for America there will always be a bright dawn ahead. Thank you, my friends. May God always bless you. Sincerely, Ronald Reagan”
I disagree -- it is not a "fear", but a "chosen silence" by the one affected, and/or their family. The Reagan's may have "announced" the Alzheimer's in their family, but that was the extent of it...no more details, except a 'sighting' every now & then in the park and in the end, definitely no information shared...even 4 years later, there has been no outpouring of information from Nancy about what all she & Ronald went through during the 'end stages' or even the 'middle' stages. As for Margaret Thatcher...didn't know anything about that until reading this post -- apparently I've been under a rock, in addition to dealing with Alzheimer's for 4 years. Even those who are announced in the media do not disclose all the details of what they go through. Suspect it is just too hard to talk about, and I know I can truly relate to that --
This is a public forum, too, don't forget. Not to chase anyone off, but when you share here, you are also sharing with the world. How many times have we discussed things that our spouses might not have wanted shared? All the stories I tell about Andrea...she would never have wanted to share her affliction in this manner. But I am not doing it to gain anything, or get revenge, or anything cruel, I can promise you that. I share because as we have told each other countless times, it HELPS to hear it. natsmom points out that we know Reagan had AD, but we never saw any of him during the later stages. I'm not saying I want to know about him pooping on the floor, but to have NO idea at all of what AD creates makes it very hard on the next person who is facing this disease. How many times have you come here and read something that helped you in a later stage? How many times have you helped someone to feel better because you were able to share information that they could relate to?
We have our little world here that is safe, and we share to educate. I feel so sad for the millions of caregivers who haven't found this lifeboat, and feel so alone. If the Reagan or Thatcher family published even a little of what it is like to be a caregiver, think how many people could find the comfort we have found. Of course, anyone who publishes with an agenda to harm ought to be spanked. I speak only of the publications that are designed to help and educate....like we do every day.
I posted this New York Times video link (The Rarest Gene) in case anyone wants to view it. It will give you a clearer picture of who I am and my DH (actually my ex-DH). Chuck has been very brave speaking out about FAD and EOAD. It is really hard but I pray it will make a difference. While everyone will not and cannot go public, speaking on this forum, to your friends etc. will raise awareness as trispringer pointed out. I am sure there are researchers and journalists also reading on this site. Chuck & I realize his family's story is very unique and he is leveraging this interest to raise awareness of the disease. He will be giving another interview soon.
I know that Joan had posted the link of Chuck testifying before the Senate Commitee on Aging earlier this year. He was inspired by his aunt who testified 30 years ago and interested researchers in discovering what disease was destroying her husband and his family. I was also very impressed with Sandra Day O'Conner's testimony and grateful that she came forward.
I hope I do not offend anyone by posting this. I really appreciate this site and have been learning alot from everyone.
Good point trisinger. I am aware that everything I write here can be read by anyone in the world. It doesn’t trouble me in the least. But then again, I am not famous. I can speak from The heart without fears of being misquoted or sued. But as far as the Reagan’s go, I think considering we are talking about a former president of the United States, they were very open with the public.
The Reagan’s did speak out. I have watched numerous TV spots, read many articles since his 1994 diagnoses. His children spoke of the heartache. - IMHO -President Reagan, was the first person of such international repute to admit publicly to suffering from Alzheimer's disease.. That takes guts. I think they shared enough, while still keeping their nitty gritty, thier "poop partrol" private.
Lizbeth, I just watched the video. Thank you for sharing such raw emotions with us. I commend you, your husband, and your daughter. I had tears running down my cheeks right along with them..... so moving.
I just watched the video, Elizabeth. It is so moving! I really appreciate your sharing your journey. thank you!
I personally find I have no remorse in sharing almost everything on this site. However, in the early stages (MCI) I was very worried and shared a lot with a close friend. She was very understanding and a good listener. She has since moved away and while I never worried that she would dishonor my confidences, I felt that I was betraying the marriage by telling so much.
By being able to talk about 'stuff' here, I don't need to share with others. I don't talk to anyone about the various behavior changes, his child-likeness, peeking around corners, etc. For one thing they wouldn't have any idea what I was talking about. They wouldn't be able to understand or have any empathy for what he's going through.
I feel safe here. I am not betraying our marriage by talking here and I so appreciate it. I belong to a care-givers workshop. All kinds of things there--cancer, diabetes, autism--but no AD. I listen but do not feel like I want to share. But, that's just me.
THE FOLLOWING POST IS A RANT. THE FOLLOWING POST IS A VENT.
IT IS NOT IN RESPONSE TO ANYONE'S THOUGHTS OR BELIEFS.
IT IS ABOUT ***ME*** AND NOT ANYONE ELSE.
I, like Nikki, did hear Reagan's children speak out. Especially the oldest son who became the family spokesperson.
I knew when he no longer knew who his children were. I heard his older son talk about how well his step-mother (who he didn't much like 20 years earlier) was taking care of his father. In fact it was quite obvious at the funeral that he was there supporting Nancy in a way that no one would have expected when his father was President. And that was because whatever unhappiness there was between them had been burnt away during the years that the disease took his father away from him.
No, there were no visuals, but Margaret Thatcher's daughter wasn't providing visuals either.
I really wish I knew more about what actually is in the book. Is it just a chapter in the middle of a book about the daughter's life? Is it the focus of the book? And what, exactly did she say? Was she talking about her mother's disease, or about her own pain? If it is her own pain, why is anyone vilifying her for that?
I think it is necessary to get more of what we all know about this group of diseases public. The only way that is going to happen is for the children of famous people to go public. When Rita Hayworth's daughter did that, to the tiny extent she did it, she also got vilified for it. And all she did was admit in public that her mother had died from being sick with a specific disease.
I say this, but I also went through a very hard time the first time I told anyone "My husband has dementia." I think it is very important to "go public" for the caregiver's sake. I think hiding the crazy lady in the attic has just plain got to stop.
When I was growing up, between the ages of 7 to 17, there was an old Victorian house on a corner two blocks from our house. It had a waist high iron fence around it with honeysuckle vines all over it. The bushes close to the house were overgrown and you never saw anyone coming or going (a perfect setting to scare people on Halloween). There were always tales about that crazy lady who lived there - and someone said her relatives kept her in the attic. We didn't know since we never saw anyone there! They drove into the garage and went from the garage into the house. I wonder if there was an older person there who had Alzheimer's. Starling, your last sentence brought up that memory that I hadn't thought of in 40 years!
When my husband's memory began to fail, he noticed it first and saw his doctor, who sent him to a neurologist. The neurologist did an MRI, said he was fine. He wasn't. We entered a memory study at Duke University and over a period of time was diagnosed with MCI. Finally, the neurologist concurred. Bob has been in several studies at Duke and we saw Dr Doraiswamy several times over the last 5 years. We were interviewed on local TV when Dr Doraiswamy's book "The Alzheimer's Action Plan" was published. Friends and acquaintance's were most supportive of us. Our family and close friends had known from the start about the disease. For the most part Bob is outwardly positive about his disease, but frequently I see more and more frustration and confusion. That is the part the only I see and I appreciate this website because I know I am not the only one in this struggle. Maryd
Lizbeth, thank you for the link. It is exactly that kind of "speaking out" that has the potential to educate the public, tell the world what AD is all about. Such courage!
The link is most appreciated. he is truly a brave man, and I was sorry to hear at the end that he is rapidly going downhill. My best wishes go to his wife, who is as we all are, his caretaker, and his daughter, who May or may not be carrying the gene. I pray that this disease will be licked by the time she might have to face it. I say again, the more publicity this disease gets the better. I don't know what Margaret Thatcher's daughter said, but I did not know she had the disease before I read it on this forum. Again.... The more famous people who admit it, the more publicity it gets, the more research dollars will go to Alzheimers. Then answers will come and not before.
Thanks for your support. One thing about the story that is not correct is that Chuck is still holding his own. He has declined since the interview but he can talk and walk pretty well. I think the journalist wanted to add more drama to the story. I don't think it needed it. Another thing with interviews is that Chuck gives is his point of view which is sometimes not the way I see it. However, as I have told my friends, it is the message that counts.
Thank you for that link. I was not aware that the Chuck in the Washington DC video was your husband (ex), nor was I aware of the video link you posted. Next year, when I go to DC, if they have that forum of AD speakers again, I hope to attend it. I missed it this year, because I flew in too late. Tony Pesare, whose wife Tracy just passed away, attended that forum.
Lizbeth - Thank you for sharing the video with us. It was very moving and I really could feel your husband's (ex) anguish over this disease, not only for him, but for your daughter as well, and too for his own mom, even though she is gone. This is such a sad disease. Thanks again for sharing.
Nikki & Starling - Thanks to y'all for sharing w/me about the Reagan's speaking out...i guess perhaps when they were speaking out, I, like many others who were not dealing directly with this, didn't pay close enough attention. I guess that's how I feel now -- that not enough people pay attention, unless they are dealing with it directly. Sadly, it is like that with alot of other diseases and illnesses.
One note - the reason I guess I'm not wanting to "share" openly, in addition to trying to honor my husb's wishes, is that when I do, the response I get, even from friends & family, is not one of compassion and concern...they 'listen', but then in the next breath, talking about "their lives" and just sort of going on with whatever they are doing...it's hard to write about it & it doesn't happen all the time, for sure -- there are friends who truly have a heart & hand out to offer me -- a shoulder to cry on if you will, but I guess it's those times that I share with someone I "think" will be a listener/friend/comfort & they don't that really makes it hard to speak out. And/or the comments that are made and I start feeling 'protective' of my spouse, kind of like when someone bad-mouths your child...you swoop in & want to protect and rescue...so instead of having to fight that & deal with that issue, you just "quit sharing" and "quit going" and "quit calling"...i hope i'm making sense. It goes back to 'some people just don't know what to say'...it's a hard disease to deal with, whether you are on the inside looking out or the outside looking in...
Here's a comment that really got my goat and you'd've been proud of me. I kept my mouth shut. tight!
I told of a little incident (can't remember what it was now) and how frustrated I was getting. This person said to me "Oh, you shouldn't feel that way. Everyone has their troubles!" Believe you me, I couldn't get away fast enough.
I see her frequently and I am the epitome of politeness and small talk. That's the way it should be that way. Like Natsmom said: She just didn't know what to say and it's best I don't say anything to her.. Right? right!
Nikki, I truly understand the quit [fill in the blanks]. I didn't really have much of that, but the little I did experience was enough.
I think one of the reasons that a lot of people didn't know that the Reagans were going public when he reached stage 7 was WHERE they went public. His son was on at least one of the political (republican) talk shows. I think that they had a hard time finding places that would allow them to talk. I know that it was one of the talk shows that I heard him because I was listening to a lot of talk radio at that point, especially during my long drives to and from work.
Briegull, that is so funny. People are always asking how DH is but they really don't want to hear any gory details. We are again dealing with the driving issue. My fault, Just should have let it go. I was doing all the driving anyway, so who cares. They are scheduling him for a roadtest, and he is really angry. Who knows, maybe he'll pass. Then what. Maybe he'll forget about it, that's always possible. On the subject in question, I think it's most important that people are made aware of this awful disease. Especially the EOAD. My husband is 85, and we have had 37 yrs together. I consider myself extremely lucky to have had him so long. What about these people who are dealing with this awful disease and have young children. I hate to say this, but so much money goes to AIDS which infact affects a small number of people in this country (and I do mean in this country), but AD which will be affecting almost everyone in the next few years is just not getting the publicity it should. The more public it becomes the better.
chris, what I say when people ask is that he is doing "as well as can be expected." It is the truth without all the gory details. Frankly, I DON'T WANT to go into all the gory details myself.
I've gone public with my local community, with my tiny family, and with his friends from his previous jobs. If they ask real questions they get real answers. If they are just being put in the loop I give them a general answer.
The way you get funding for a disease, any disease, is to get people to go public. And you don't get that going public thing if a caregiver is vilified for just admitting that their parent has dementia. I think that is why I went so ballistic about this entire situation. I think it is the right of any caregiver to go public no matter what their demented LO thinks about it. Once you have dementia, it is no longer your call. I still can't get over THE FORGETTING where in both cases the caregiver died FIRST. And that included one case where the patient could no longer wake up when her daughters called her. She was obviously in the last weeks of life and her husband died FIRST!