Saturday, October 17, 2009

Alzheimer's, books, blogging, publishing,

I just found a really nice blog by Helen Ginger, called Straight from Hel 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 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.


Helen Ginger said...

I'm guessing, but I think people without a connection to Alzheimer's don't want to read about it because it scares them - and people with a family connection to Alzheimer's don't want to read about it because it scares them even more.

I want a cure or a way to fend it off. I would probably never pick up a fiction book on Alzheimer's, but the one you blogged about sounds interesting.

Thanks for stopping by my blog and for posting such a thoughtful comment.

Straight From Hel

Renae from New York said...

It is unclear how you managed to be your mpther's primary caregiver at 17 and then go on to medical school. Did you have any help? Who took care of her when you were in college? Were you responsible for her bathing, etc. and her finance. Seems like quite a lot and at 17, you were still a minor. You were the only caregiver she had during her disease? That is incredible. Who was paying for your school, lodging as well as hers?

Joseph J. Sivak MD said...

All of those questtions are discussed in my book in depth. My mother actually had to enter a nursing home in my freshman year of college.

Lisa said...

Joe, good for you for getting your story out there. Only you need to feel comfortable doing so.

As a caregiver, I don't feel shame or humiliation. I only feel alone and depressed...deeply alone and depressed.

NO ONE gets the stress, pain, etc., that a caregiver goes through until they themselves feel it. I've heard some pretty insensitive comments from those who haven't had to care for an ailing or dying loved one.

Perhaps your story will shed a more far reaching light on our struggle.

Susan said...

Susan from Virginia

It is obvious that there were others that were caring for your mother at this time. You obviously were not working but going to school. I suspect that many other family members were caring for your mother at this time. Apparently you did not have the major issue of money as most AD families have-your mother was in a nursing home and you were in medical school. Ad families constantly worry day in and day out about where will the money come frm.

Talking about the book with the Lake Superior wind....... a calm day