I just found a really nice blog by Helen Ginger, called Straight from Hel http://straightfromhel.blogspot.com/ Helen is a freelance editor and seems to have been around the publishing biz for quite awhile. Moreover if you read the comments below a couple posts ago, Helen has survived the battle of AD in some close family members.
I don't know why I and so many others have a need to write about AD, our memoirs and our experiences. I know the experience is perhaps one of the most isolaitng things anyone would ever have to go through. As a caregiver, you want to cry out to the rest of the world "DON"T YOU GET IT"
Joe Potocny http://living-with-alzhiemers.blogspot.com eloquently and without sugarcoating things covers that isolation and lonliness quite handily in his blog.
I finished Lisa Genova's book Still Alice a couple weeks ago. It is a NYT's best seller. It is quite fascinating that this book is a work of fiction. She is an incredible writer and the book was extremely ENJOYABLE and went fast for me. She gets a lot of praise for "getting it right" and has to be commended for raising awareness of AD. In the end it is a work of fiction.
I would love to see somone like Joe whose life is not a work of fiction end up on the NYT's best seller list. Joe has dementia.
It may be true that the world, the rest of the world is not ready for non-fiction. Maybe it has to come in increments. Still Alice was so well written, it was enjoyable, it was infomative, it made you hopeful. There was lots of improtant info in there. Not all the info, but important info. But the book did not make you cringe; to psychologically shift in your seat uneasily. Perhaps for all the people not directly affected, it did make them uneasy. Uneasiness makes people feel "icky" and uncomfortable, it does not raise awarenss. You shy away from it.
I wrote my book When Can I Go Home? over quite a few years. Originally it started out wiith a motivation to be heard, to be understood. That motivation shifted from the lonliness of an Alzheimer's Caregiver, to the Lonliness and need to be heard from a physician's point of view. The so called 'other side'.
I couldn't end the book. It goes on. Then I realized through all this technological blogging, that the real ending was that AD goes on and we are all connected. Alzheimer's is getting us faster than we are getting it, I'm sorry to say.
I did finish the book, and I hope it can bring people hope and maybe help them deal with that uneasiness that makes us shy away from thinking and talking about the disease, and consequently as a society doing something about it.
Like all Alzheimer's memoirs, it is profoundly personal and intimate, an extended relative of mine, who is quite a writer, and a product of the internet age, told me maybe to put the book away in a drawer. It is so personal and intimate, a self-intrusion upon my own experience, an exhibition for the world to see. I almost put it away. When I looked around on the internet world and saw the relatively small sample of what is really going on out there with AD, I relaized I was going to carry through and get this memoir out there, regardless of my original motivations. Every Alzheimer's story needs to be told., all the non-fiction out there. I hope my book and every memoir out there that needs to be written, will move past the embarrassment, or shame or humiliation that we as caregivers impose upon ourselves, (with the help of our 'empathic' society of course). I think we all could use a nice grant to study the embarrassment and shame and humiliation a caregiver or a victim struggles with. I don't see that happening though in health care reform. Just think there a five million potential blogs out there about the reality Non-Fiction of AD.
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