Correct me if I am wrong, but isn't Shelley Fabres (more recently on "COACH") an advocate and National Spokesperson for AD? Seems like I recall her mother had it??
Nancy B - Yes, Shelley Fabraes is an AD advocate, so is her aunt, her mother's sister, Nanette Fabray. Leeza Gibbons, David Hyde Pierce, Maria Schriver are among other notables active. Dozens of others, not so much in the spotlight support the AD cause--Barbra Streisand & Rosalind Kind, Laura Bush, ' Dear Abby's' daughter, Penny & Garry Marshall, Justice O'Connor, Sally Struthers, Michael Reagan, etc. All have a close relative w/AD, they will appear at fund-raisers, things like that but the public does not see them as much, but they are suportive.
Bettyhere., I believe it's just not a popular health topic with most of the public who has not experienced it. I talk about the "just Like Me" generation who vote for candidates they can relate with, support causes that affect people their age or that they can relate with.
Mental illness is scary for people who have not lived around it. When children play "scary games", they might pretend to be an insane person, right? Wild eyed, arms waving in the air!! Others scream and run from them ....
I sincerely believe that is why our friends and family stay away after the illness has progressed to a noticible state. We are fighting two causes, the disease itself and the public's understanding and ultimate acceptance of its ever-increasing presence.
Oh, yes, Nancy, you are right. People just do not want to know, hide them in the attic, and many still do. Remember as children how frightening the work 'cancer' was, could not even speak it aloud. I like to think that will change w/AD, but I'm not so certain--it's the insanity, the wild eyes, the rages--don't have that w/cancer. I had friends & family who were honest enough to tell me that they could no longer bear to see DH the way he had become. Yeah, right. How did they think it was for me!
In my family, we never said "pregnant". We said "expecting a baby". As an aside, my mother even lowered her voice to a whisper if she had to say "divorce". That was in the 40's. Sad how that word has become so commonplace today.
There is a big Caregiver Conference in May in West Palm Beach, Florida. It is a two day event with speakers and break out sessions. Last year, Shelley Fabares was the scheduled keynote speaker, but she broke her hip, so Laine Kazan filled in. Her mother had AD. This year, Deidre Hall (Days of Our Lives ) and Teena Cahill are the keynote speakers. I don't know who in her Deidre's family has AD. Teena talks about caregiving in general, although her husband's cerebral hemorrhage and stroke have caused dementia symptoms, and his spinal cord injury - well, she has her hands full.
I have found that yes, there are many celebrity spokespeople for AD, but unless you're personally involved in AD, no one pays much attention.
Laine Kazan was very honest about her caregiving situation. She said her sister bore the brunt of caring for their mother, because Laine was busy with her career. She went home and helped when she could, but she was not involved in the day to day caregiving.
Thanx. I added Kazan to my list. For those who have not seen it, I have a list of well-known AD individuals or people who have AD in the family, like Kazan & Hall. It is surprising the number of actors, artists, musicians, sports figures, politicians who have it. All have been active mentally--very active mentally, and pysically, probably ate reasonably well--but they got AD anyway--as we all know, no matter what the experts say. You can see the list by going to Joan's home page, look in the left hand column until you see "Other Links" and then Betty Weiss. Click on 'You're in Good Company.'
I wasn't kidding about Carol Wells...she did indeed wear tinfoil under her clothes...at the time, we all thought she was nuts....but real good on her job, so we let it slide.. Yes I am hurting a lot inside and tend to use humor as my antidepressant instead of the pharmaceutical kind.. and I refuse to become a victim, and wil not lose my optimism. I also thought I would care for my dw at home until the end, but I took her to a nh sunday to visit a neighbor, and my wife wandered from room to room talking to everyone, and she was so content...I have not seen that for about 2 years. So, if and when the time comes, I will have to compare my abilities to those of a nh and decide who is better
phranque - that was wonderful your wife was content with interacting amoung the residents. Have you thought about some daycare for part of the week and pursue her interaction. I think that would be great.
You are doing a good job phranque. Here is a pat on the back. (((((((cyber pat))))))))))
ur thebackbone of this site Imohr...thanks...the only daycare around closed two yrs ago..wish I could find one...but movie nights have been great....Tues for my son and fridays with my daughter..I am considering trying to arrange something with a local nursing home...I am disguising it as "volunteer work", at the nh, and let my wife help where she can...but thanks to our wonderful attorneys, most nh are afraid of the liability issue...so I am volunteering her as a volunteer.....hope it works
phranque, that may be a very good solution her volunteering. and what a good thing she was comfortable running from room to room in the NH. maybe they could find her something there to help out as well and get her 'aquainted' with being there. it would be to your advantage she likes and enjoys it. divvi
I told DH he was 'working' at the adult day center & he was getting paid to help w/the others. He happily went to work & the staff was in on the whole thing. As hard as it is to place a LO, it is often better because the patient has more interaction & stimulation than being alone at home with just the one caregiver.
I brought this ttt again because this morning, I was thinking it would be great if Barry Petersen, who wrote the book "Jan's Story" could appear on Oprah to talk about EOAD. Since he's a CBS News correspondent, I thought they might even personally know each other. Then I researched a little and found that King World, which syndicates the Oprah show, is owned by CBS News! So it's a no-brainer!!!!!!!!!!! And yet, the book is out, and he hasn't been on Oprah. To my knowledge, she has never done a show on EOAD--strange.
There are actually lots of people who talk about the caregiving part of this disease. What we don't have is SURVIVORS.
As for Oprah, she mostly doesn't do sickness shows now that she has launched Dr. Oz into his own show, just as she mostly stopped doing psych shoes once Dr. Phil had been launched.
Neither of the doctor talk shows has done a show on dementia as far as I know, and that is one place where they should have done one.
Terry Pratchett is a well-known British author who wrote (among other things) the popular Discworld series. He has been public with his AD, which is of the Posterior Cortical Atrophy variant. Perhaps this is why I am attuned to it, because references pop up in PCA searches.
Dr. Oz did a minimal segment on dementia. It was extremely disappointing, because the message was the same old, same old - crossword puzzles, exercise, blah, blah, blah.
I think when the disease is something like a cancer or a neuromusclar disease, it is rather easier to get press coverage and discussions going because there is a sliver of hope for recovery while with dementia of any variety there is no hope of a recovery ( at this time) and people do not want to face this. Just look how many of us mention here how family and friends drift away when our LO is given the dx. If it weren't for the Alz Assn and the walk...there would not be as much notice taken by the public. We have Black History Month maybe we need an Alz Awareness Month to fix focus on it.
We DO have Alzheimer's Awareness Month - It is every November. This is just one of the blogs devoted to it - http://www.thealzheimerspouse.com/index-ADnotwhatyouthink.html
For Costco members: I have been emailing Costco regarding selling 'Jan's Story'. A while ago they had a book about someone with Alzheimer's but I can't remember which one it was. Not the long goodbye. I guess hitting them up now may get it in by November.
Marilyn, I so agree that a celebrity spokesperson or just a celebrity coming out and able to speak about it would make a world of difference. The first thing that comes to my mind is Tom DeBaggio and the books he's written primarily Losing My Mind. But most particularly the 10 YEARS OF INTERVIEWS NPR did of him the last one being in June of this year. Of course now he is speaking gibberish but for quite a while he was able to convey his experience. Joan used to have it on the main page and maybe it's still there but I didn't see it. You can google "Debaggio NPR decade" and come up with the site that has links to all the interviews.
I've mentioned this several times on this site and presume many have listened to them. They were so helpful to me from the beginning as he had such awareness and sounded so much like my DH. Plus the interview with just his wife midway through made me feel a lot less crazy and worthless as she talked about how she never was able to get a handle on her depression and felt like she should have been able to do that. She also talked about not being able to continue working as an artist, and all the things we can all relate to.
NPR I know has a limited audience and I'm glad to see Barry Peterson getting more mainstream attention. I also believe he can be of great value. But I don't agree that it has to be a caregiver because most AD people are diagnosed in stage 5 or so. So many are being diagnosed earlier and there are several memoirs written by then. It's the celebrity we need to get the attention. Remember Rock Hudson and AIDS? I don't remember if he became a spokesman but he definitely put a human face on it for people. Like Magic Johnson and HIV. I think Emily mentioned the writer whose name slips my mind. Not sure if he is speaking either, but it would be helpful if he did.
Mike Donohue's blog post I copied on my thread about MY TALK on AD was so helpful to DH and I've gotten calls about it since the talk. The people in the audience were very very moved by hearing the voices of real people from this site and the feeling sof someone who has Alzheimer's.
I read where Sparky Anderson died from complications of dementia. I tried to find out what kind he had but there is nothing. His family sure has been mum on it like in the old days - embarrassment. Anyone know more??