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      CommentAuthorStarling*
    • CommentTimeOct 16th 2009
     
    We were watching Dr. Phil's Friday show, and The Coach who wrote the Caregiver's Playbook was the last guest on the show. Did any of you catch him?
    • CommentAuthorKitty
    • CommentTimeOct 16th 2009
     
    I watched it. The only thing that bothered me was that the family thought that all patients are like the coach's wife, a little generic. But I still think it could be a good book. I noticed they are giving it away for free. Something like 600,000 copies in the U.S. and it has been translated into many languages, also given away for free. He did have some very good tips, however. I believe his name is Frank Boyles.
    • CommentAuthorAdmin
    • CommentTimeOct 16th 2009
     
    I did not see it. Kitty - what do you mean "like the coach's wife". What was she like? You can get that book for free from the Alzheimer's Association I think. Or just Google it.

    joang
    • CommentAuthorKitty
    • CommentTimeOct 16th 2009
     
    Well, the family, seemed to come up with some kind of formula to keep the wife happy. Lots of social activity. The daughter said she enjoyed it. Although the family let it be known it is difficult, the problems that come up on this site were not discussed. It was sort of like social activities for Alzheimer's was the answer. As we know, often people with dementia have difficulty in social situations, noise, etc. None of that was mentioned.
    • CommentAuthorAdmin
    • CommentTimeOct 16th 2009
     
    Because I didn't see the show, it wouldn't be fair for me to comment on it, but I can comment on what Kitty said.

    Kitty,

    I have found that what you said about them not talking about the problems that come up on this site IS the problem. One of the reasons there is such a public misconception about AD is that no one talks about the REAL stuff. The relationship changes; the personality changes; the rages; the incontinence; the agitation. Which is why, when a loved one gets AD, the caregiver is in such shock at the real nature of the disease.

    joang
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      CommentAuthorNikki
    • CommentTimeOct 16th 2009
     
    I read the book years ago. It is handy for those first diagnosed and does have helpful information. But, it does not begin to cover the devastation of this horrendous disease. I agree with Joan, the REAL stuff needs to be brought out into the open. I just wrote the Dr. Phil show, I doubt anyone will respond, but we will see .....
    • CommentAuthorWeejun*
    • CommentTimeOct 16th 2009
     
    Just as I mentioned on another thread about "research" the only way society is going to learn of the devastation of dementia diseases is if and when the "real story" gets out there. My girlfriends were here for a few hours this week to play dominos and go to a local cafe for lunch. When my DH called me 9 (nine!!!) times in the hour we were gone to lunch they sorta got the "picture". Keep in mind, there was a paid caregiver here while I was entertaining my friends and he still felt the need to reach out to me nine times in that hour.

    Someday Joan or somebody like her will be on one of those gosh-awful shows (my opinion) like Dr Phil or Oprah and we might get some good press.
  1.  
    I wish I had known, six years ago, that behavior was an early sign. The cognitive skills started then, sort of slowly, but the memory issues came much later. Now that we have a DX and meds, I realize that Seroquel could have helped so very much back then.
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      CommentAuthorStarling*
    • CommentTimeOct 17th 2009
     
    This was one of the first books I read, and I found it very useful It was BRUTALLY HONEST about what the end stages were going to be like, and kind at the same time. Because there is so much more information on the web, here and in other places, a book like 36 HOURS isn't as useful as this little booklet was.

    And I think they are right about socializing in the earlier stages. I know I stopped socializing way too early. It wasn't good for me and it wasn't good for him.

    They made it clear, by the way, that all dementias are fatal. They might not have talked about violence and aggression all that much with Dr. Phil, but it is possible they didn't have much in the way of problems with that with that particular patient.

    They had about 15 minutes, and the big focus was that there was this book and it was free and it was about CAREGIVING.
    • CommentAuthorZibby*
    • CommentTimeOct 17th 2009
     
    I got 4 free copies from the Alzheimer's Assoc when we received 1st diagnosis for children and me. Helpful for starting the road. Now I rely on this site for questions/answers/observations/experiences. And I thank you very much!
  2.  
    I've gotten them several times from Alz. Assn. - and have ordered them to be mailed direct to family and friends. It's does not go deep into the disease- it's light and easy insofar as addressing the disease and the hardships we know all too well for the AD person and for the Caregivers.