Yesterday while driving I happened to tune in the Diane Rehm show and she was interviewing Meryl Comer whose book, Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimer's, is being released September 2. It was an honest interview with a very articulate woman who is advocating for Alzheimer's research, but also shining a bright light on the struggle that caregivers have in caring for these patients. Meryl is currently caring for her mother and her husband, he after being denied facility care due to behavior issues associated with his disease. BTW, Diane Rehm's husband has/had Parkinson's, so she understands these brain disorders and the burden of caring for the patients.
For those of you who are somewhat tech savvy, you can download or listen to the Diane Rehm show on your computer. Even if you don't plan to read the book, the interview is well worth the listen.
I found her story very sad and interesting http://www.nbcnews.com/health/health-news/diane-rehm-my-husbands-slow-deliberate-death-was-unnecessary-n150096
Thanks marche. I just read the interview. It was so interesting that I just ordered her eBook that is going to be released and downloaded for me on Sept 2nd.
There are two stories here: 1) the story of Meryl Comer, and 2) Diane Rehm's story that bluedaze*5-5-10 posted.
Both are well worth the read, as is the story that Charlotte brought to attention: deadatnoon.com. For the latter, as well as John Rehm's story, it is best to read them with no bias, that is, just as stories of how people manage their lives and difficulties. It is impossible to walk in another person's shoes, and we know this better than most, so it is right to respect these decisions, even if we might not agree with them. The real point here is the incredible pain (physical and psychic) inflicted by these diseases.
I, too, am awaiting the release of Meryl Comer's book.
I purchased the Kindle version of this book yesterday and am already halfway through it. As I'm reading it, I keep thinking "yes, I understand", "yes, I feel that way too". Meryl Comer has been a brave and unstoppable caregiver and advocate for her husband. I can only hope to be as brave and courageous as she has been. This is a definite must read for all of us.
Adding to my comments above, I should have said it's a definite must read when you have the time! My DH was pretty content watching TV yesterday and didn't mind going up to bed alone so I stayed up a bit later to read. As I'm reading Meryl Comer's story, so many of you here come to mind, caring so faithfully and diligently for your spouses. We are an underground community in this world, but I hope books like this one will bring our struggles to the surface.
By coincidence, this book arrived in the "new non-fiction" section of our library yesterday and I checked it out. I was hooked by page 2, where the author says:
• “Harvey has long forgotten me, but I a constant as his copilot and guardian. . . . I bear the burden of all the decsions for us both. The demands and terrors of his world define mine. Any challenge is self-defeating. I play into his reality and pretend that his fate and our life together are not doomed. Unfortunately, I know better.”
And this:
• "Many times, personal stories involving Alzheimers's gloss over the unseemly details of care. They are written as love stories of unquestioned devotion or living memorials to honor someone during better times. . . But I never wanted to embellish or soften the edges around the truth. It does not do justice to the disease.”
elizabeth* 9/2/14 "The unseemly details of care." Ohhhh, yeah. I have to get this book. ("…pretend that his fate and our life together are not doomed." Ohhh, yeah. Yes, indeed.
Like many I read the book in almost a day. It was good reading, not really depressing. A couple facts that bothered me was her comment his retirement was only $39,000 which to many of us would be a fortune. The other was much of the care for him was able because they did have higher income than many of us here.