Thanks for posting this, Joan. I was reading some other threads about this and someone who has been to some of his concerts in recent years mentioned that he had got some not so great reviews and this must be the reason why. He is a fabulous guitarist and as with so many with this disease, music is something that they still enjoy despite all the other losses. I hope his music will give him pleasure and comfort that he will, hopefully, for some time to come enjoy singing and playing. I understand he also knew how to play bagpipes..read that somewhere.
I'd heard this earlier today and was reminded of favorite songs of his. From reading and experience, I think he'll enjoy music even tho' he has "our" disease. My hb still enjoys music, playing the piano tho' not so much as before.
Fox News is airing a special Saturday night at 10:00 PM: http://www.foxnews.com/entertainment/2012/02/17/fox-news-looks-at-remarkable-career-glenn-campbell-and-his-battle-with/
I am a Glen Campbell fan and sorry he has this horrible disease. But, his nonchalant attitude (which may be denial) bothers me. What bothers me more is his wife's same attitude. I wonder if she were not sitting there if she would be different or maybe she still does not realize the journey ahead? Also, for them it will be easier as they have money for all they will need and he is 75 - not 55 or younger.
I do not mean to make light of it for those whose spouse is older - I know your journey is just as horrible. And many have the same financial problems as us younger ones do.
Just watched the clip with the above link and what I see is our friend "anosognosia". The poor man has AD and doesn't appear to be able to comprehend what that means for him ahead. As for his wife, I'm sure she is just as ill-equipped at this stage as most of us were. Bless their hearts, they will learn it all as they go. I wish them an easy journey.
CBS Sunday Morning ran a story on Glen Campbell last Sunday--it's probably available online. I think it is wonderful that FINALLY, a celebrity who is in the early stages is revealing the diagnosis to the public. They stated that the reason the family agreed to it is that he makes mistakes when he performs and they don't want the public to think he has been drinking (he had an alcohol problem).
I agree with Weejun. I don't believe he understands what is happening to him. My husband has never understood that he is ill. It's not denial...he just doesn't understand.
I don't know much about Glen Campbell. The name and face are familar and that is about it.
(Except for a breakdown I almost had at the supermarket a few weeks ago when whomever was controlling the in store music played "unbreak my heart" followed by " I am the lineman" which I think is Glen Campbell.)
Anyway. Last week, H and I actually enjoyed some of the Grammy awards show. I also don't know much about the Beach Boys, but I did see this moment: the Beach Boys were presenting "Good Vibrations" with a light show and I caught a shot of Glen Campbell. He was reacting and the look on his face just said to me AD.
It just did. I don't mean to offend anyone but it was like "I know, but I don't know" at the same time. I thought it was heartbreaking.
I watched this online, and called DH in to see it, in the hope it might start off a conversation about AD, and i could talk to him about it and his AD...but, no he just said "oh poor man, that's terrible"...he still thinks there's nothing wrong with him..
In the clip, when the interviewer asks how is this fight with Alzheimer’s, Glen replies, “…I feel more like I do now than I did last week…” How ironic. We know he is trying to say, “I feel better this week than I did last week – I’m feeling better all the time.” But, just as with my DH, it doesn’t come out quite right.
When he says, “….I’m fine with it now. It’s just amazing. I’m enjoying it.” That worries me. What a false impression to give uneducated viewers - Alzheimer's enjoyable?. It would be lovely if they air a subsequent discussion with a neurologist to explain anosognosia. But I’m not holding my breath.
Julia, I am also planning on watching it with DH to see if it could start a conversation. My DH also believes there is nothing wrong with him and refuses to follow-up with neurologist.
God bless them in their ignorance. Maybe he should give a concert at an ALF & then he & his wife could see for themselves what his future could hold. But as Charlotte said, he has enough money that they could hire in house help (like the Reagan’s) so he wouldn’t have to go to a NH. (At least the people with lots of money don’t have that worry as a lot of us here do)
According to four different interviews I have seen in the past year about Glen and his family, Glen knew and acknowledged the Alzheimer's over a year ago, but now has forgotten what it is and that he has it. He loves performing, and music keeps him going. His two grown sons are in his band and his daughter is right beside him on stage at all times. HIS kids understand and support him (not like some here have) - and if he starts to forget (even though they have three cue cards set up with the words on them in front of him) they will pick up and start singing (and the audience will too) and he will pick back up again. He looks to his daughter often, and she smiles and nods to let him know he's doing okay. They plan on allowing him to finish this tour - as a goodbye to his fans - and it is sad to watch. He performed at the Grammy's and it broke my heart to watch, but yet, he is loved and is showing the world how he is progressing down the road of AD.
They know what is ahead and are doing what they feel is best for Glen at this time. There is no denial of what is ahead - especially in the kids. His wife hasn't been interviewed as much, so I don't know about her. Those who see him can see what it is like, and those of us who have experienced it, wonder how long they can continue. I never felt any embarassment for Dave in taking him in public....he couldn't help it. They have great strength to allow him to go on stage in front of the nation and see what AD is like in this stage.
I'm sure that the funds they are earning will be used to take care of him later.
I agree, Mary*. I think it's wonderful that they let him perform - until he can't. I, too, have never been embarrassed to take DH out in public. It is what it is - and people need to be exposed to it - no matter how it appears.
Mary* & Vickie, I have to admit that at times I AM embarrassed to take Tom out in public. I know I shouldn’t be & when I’ve flashed my AZ “business card” people have been very kind & compassionate. Now I feel ashamed that I felt that way. You both are right. He can’t help it & people need to be exposed to it. Actually the last few times I’ve taken him places he hasn’t been as animated as he was before. He hasn’t gone up to strangers & tried to talk to them. I think it’s just the progression of the disease. So sad.
In the article his daughter said she noticed signs back when she was a teenager - she is in mid 20s now. I agree that he is probably not aware of what he has - even when told Alzheimer's it does not register. I would love to see a follow-up after interviews by someone to explain that he doesn't realized what he has. That many are like Glen Campbell in the disease while others stay very aware of it for a lot longer. It would be great educational.
I watched just a few minutes of the program--recorded it to watch later. The segment I saw was someone talking about the need for caregivers to care for themselves first. If they don't, they can't help their loved one.
I wish they had shown someone that was in their 50 or 60s that has Alz. And, explained how difficult that is financially when the husband has to quit work and the wife has to work, but has to pay for in-home care, and they maybe still have kids at home.
They always seem to show people in their 70s or older. It is all sad but the EOAD ones are the ones that I believe to be really, really sad..If someone finds out they have it in their 70s....you might say, they are living on borrowed time without Alz. But, if the person is in their 50s or even early 60s...their life is probably cut much shorter then it would have been.
I certainly don't mean to offend anyone here with what I just posted. It is all bad some of it just worse then others. I am glad that they may get more research and help in curing this terrrible condition.
Judith - send Fox an email about it, or leave a comment. I did. I was amazed at the postings from people making light of AD. I did like it and husband wanted to watch it too. I am glad the whole hour was devoted to AD. the only part I did not like was VP Biden at the end. He said nothing to contribute to AD and the pitiful amount that has been added to research will barely put a dent in what is really needed. But, I guess a little is better than nothing.
I'm going to send an e-mail to Fox. It might be helpful if Joan could send one that would be more "official" and maybe they might even interview her. The more attention we can bring to this the better it is for everyone.
We saw the program too. MY DH said " do we know anyone with that disease?" I told him my mom had it and he was surprised.... I thought the points covered were important..Liza Gibbons has a book out on how to " get your oxygen". I was in the neuro's office last year and a magazine there had her story about the care given for her mom..she and her siblings were involved but were not full time caregivers as I recall. Maria Schriver was the wife of the Gov of CA and she was hardly a full time caregiver BUT her point about siblings being involved, especially with the other parent suffering an illness of some kind too, was very important. Nancy Reagan's point about losing shared memories was so sad and we all identify with that. And the Campbell family pulling together is ideal..the one thing in common all these people have/had is the wealth to have support so that they can be advocates without having to shoulder some of the other ordinary details like cleaning toilets...they are/were indeed fortuante. I wish FOX would do a follow up with people like us, people of more modest means, to show what we have to do to fight for medicaid, see the eldercare attorneys, what we face when there is no day care in our areas for our LO so we can get our " oxygen" and so much more. Fox made a good start...I think Glen's kids deserve a big pat on the back for being so involved and his daughter's comment about how important it is for her to be with him while he knows her and just to be with him was so sensitive..there is a need to discuss how it is when family are NOT involved and how it is when the spouse is blamed in some cases by other family members for the LOs condition..they just covered the tip of the iceberg.
My DH & Reagan were going thru AD about the same time & people told me that it wasn't as hard on Nancy because of all the help, etc. But I felt the tragedy was not the caregiving, it was the heartbreak & no amount of money could prevent that. Maria had a good point about siblings, but not all families are willing to do that. She also mentioned that she tried to get a program on TV but was turned down. The same thing happened to us--and we were nobody. I'd spoken at UCLA & a TV producer in the audience asked if they could do our story. I signed the contract, hired a showbiz atty, a treatment was written, a well-known actor had agreed to play DH, it was all a 'go' except that not one single network, even cable, would touch it. They said that no one will watch a program about AD, except those who have a personal interest and they are few & they could not sell it & make any money. That was a good 12 years ago, maybe it's better now, but same with my book, publisher said it was good, but men buy spy novels, women buy romance, and unless you already have a 'name', like Michael J Fox wrote about his Parkinson's, or you're a famous doctor, they can't make any money on an AD book. Honestly, before AD came into your life, did you buy any AD books, I know that I didn't. Then it got all political w/Bush and embryonic stem cells and abortion, etc. But he never stopped adult stem cells and they have a better chance of helping. There's no way in hell that I'd let anyone put embryonic stem cells into my brain or DH. The one good & new thing I took away, if I understood Biden correctly, is that federal money will be devoted to our genome, which I've always said was the key. As a layman, since 1993 when we entered the AD world I've seen so much money & effort thrown at the wrong thing--in my view--but I guess most everything is worth a try.
Watching the program brought back a lot of memories, often it was like talking to myself. All in all, I thought it was well done but don't see how it will help the general public understand what it's really like. I'd see photos of Reagan walking in a park, well groomed, stopping to let people take photos, but I saw the same thing in him that I saw in DH, I knew it would all be different when he was home, not a true & accurate picture. People say that after cancer, it is the most feared illness, but unless it's in the family, I think most believe it can't happen to them. Gibbons has been out front for a long time, so are other celebrities. I was surprised that more here did not say they watched it, but I think it will be replayed many times if anyone wants to see it. We really don't cure diseases, we do, however, make progress so that people can live better with them. Time will bring that to AD.
For clarification, the program on Fox is called "Glen Campbell Fights Alzheimers". No mention made of the reason he seems so happy-go-lucky: anosognosia. They should have had a doctor explain that.
Betty, I agree that it won't help the general public understand what it's really like, but I think any publicity for the disease is of some value. Gotta crawl before you walk.
What I don't understand is the statement that cancer is the most feared disease, AD is the second. I could see it if they said "incurable cancer" but many cancers can be cured. I guess that explains why AD research funding is so low compared to other major illnesses.
Bettyhere* My uncle suffered this disease.They lived in the BelAire section ( but not inside the gates) and my aunt was able to send my uncle to an organization called OPICA. He would be picked up about 9 I think and be returned about 3 or 4 and she made friends with others there who had LO in that situation. My uncle died at St John of God's in Jan of 1996. They had doctors from UCLA and a brain autopsy was done there. My uncle had been the President/CEO of Sunkist from which organization he retired well before any symptoms of ALZ.. Did you know of OPICA? There was a TV special on about it when he was there.
Yes, Mimi, I know about OPICA, an excellent organization. I'd gone to a support group there a few times and then thought I'd put DH in their day care. DH died in 2003 & UCLA also did his autopsy. This is what I wrote about what happened at OPICA. Haven't looked at it in some years. We went other places, but never back to OPICA. Anyone in the Los Angeles area reading this might want to contact them. I think they are still there. ******
October 1996
"I was taking DH to his first adult day care. He didn’t object to going, but I was required to stay in a separate room the first time or two. There would be music, crafts, lunch, and exercise. I really hoped it’d work. Maybe he’d make new friends, get some interests going.
Through the half-open door where I waited, I could hear his participating in a discussion about a 63-year old woman’s giving birth, and he was perfectly lucid, making valid points about the effect it would eventually have on the child.
Soon I heard music and sneaked a peek. That’s when I lost it. He was sitting in a circle with the others, like children in kindergarten, this brilliant, loving, handsome man, shaking a tambourine, mouthing the stupid words to that stupid, stupid song, “Yes, We Have No Bananas”. I didn’t want to see this. I wanted to see him angry, resisting the program, offended that I’d take him to such a place--refusing to participate.
I began backing away from the door, pushing myself into the farthest corner of the room. If there had been a hole under the carpet, I would have crawled in and pulled it down over my head. I couldn’t bear to see what I had just seen, and the tears came in overpowering waves, tears that would not be stanched.
Someone was sitting next to me, the program director, talking, but I couldn’t understand her at first. Finally her words came clear. “It’s not your fault, dear, you shouldn’t be feeling guilty.” She kept repeating that, handing me tissues from a box, and she wouldn’t stop saying it. I couldn’t make her stop saying it and I couldn’t stop crying.
I didn’t feel guilty. Why would she think that I’d feel guilty? I didn’t cause any of this. I’d have to be crazy to bring such anguish into our lives, although I could wish that I had such power. If I had that kind of power, I’d undo it all.
It took great effort for me, finally, to stop crying, to tell her the obvious--I wasn’t feeling guilty, I was grieving. She didn’t seem to know what to say. I asked her to leave and she did. It was clear to me, more than ever, that DH was embarking alone on a journey where I could never follow. Our life, as we had always lived it, was over--I was grieving.
At lunch break, he found me and said he wanted to leave. So did I. He told me that he didn’t want to come back again and I agreed. There were no more tears as I drove away. No worry--I knew I wouldn’t lack for them in the future."
Oh, Bettyhere, when I got to the part where you said, "it was clear to me, more than ever, that DH was embarking alone on a journey where I could never follow." That is my realization as I watch my hb doing 100 piece jigsaw puzzles marked for ages 3+. Everyday, there are happy moments, but there is grief and lose,as well.
Thanks for the link. I just watched the video. So sad.. I would think that by now Kim must have some idea of what is coming. I guess like most of our spouses, He doesn't really understand what its all about.
When I see Glen Campbell, though I see so many similarities with my Dado, it amazes me how he can say so many sentences and actually converse. Dado mainly "parrots", and can use very short sentences. He simply could not carry on a conversation. Everytime he goes to do something, he is going to get the "basket", or sometimes, the "gourd" When other people are around he tries a bit harder.
An update on Glen Campbell: http://www.capitalnewyork.com/article/culture/2012/10/6538242/fond-farewell-glen-campbell-carnegie-hall
Intersting that the author notes "The level of comfort was evident on Campbell’s face, even in moments of confusion: a song would start and he’d stop the band, wondering if they had played it earlier that night. It happened a couple times, and after each one he’d joke, “Anybody in this room, did any of y’all ever forget anything?”
Yet the author also states,"Campbell was diagnosed with Alzheimer's over a year ago, and has said he would prefer to wrap things up while he’s still 100 percent"
I guess that is the only silver lining - that Glen can still feel he's at 100%...
Here is a link to an article that was USA Today about Glen on August 13, 2013. It tells about his battle with agitation and hallucinations a while ago. Only thing it made it sound so easy to adjust meds but nice to know even the rich do not escape the horrors of this disease.
The latest issue (Fall, 2013) of care ADvantage, the caregiver magazine published by the Alzheimer's Foundation of America, has a lovely article written by Glen Campbell's daughter who has been serving as one of his 24/7 caregivers. Very touching. (That same issue also carries one of my articles on how I came to place Clare in an assisted living facility.) Issues of care ADvantage can be accessed on the AFA website, www.alzfdn.org ... anyone can also sign up to receive issues mailed to their home for free.
people are commenting how fast but when he first announced he had been diagnosed they said he had had problems for few years, but did not go to the doctor about it.