Saturday, May 22, 2010

When Can I Go Home?

When Can I Go Home? is now Available. Well after 21 years of work the book about my mother's Alzheimer's Journey is now available. I can now talk about it more freely, since it is way too late to turn back now. It is available for purchase from the publisher Niagara Press website. I started this book about 21 years ago, a few months before I graduated from medical school, about a year after my mother died, after struggling with Alzheimer's disease for about 9 years. The book talks about so many things, related to this struggle. It was all fresh in my mind back then, years of the journey. Most all of the universal moments are discussed. The behavior changes, the forgetfulness, the slipping of mental faculties. The denial-(my father died a year before my mother was diagnosed), the diagnosis, non one heard of AD in 1979, remember we use to call it "senile" or "hardening of the arteries to the brain" back in the 70's. giving my mother meds in the 1979's that really would not stop or for that matter do much of anything for the disease. Bizarre behavior, that far away look in my mother's eyes, nursing homes, a slow death every day. The roller coaster ride, windows, (some days good, some days terrible,),  nursing home,  losing ones home, (my mother and I lost our home at the same time) losing ones ability to drive. Its all there, all those universal moments, that only a family member of a victim of Alzheimer's can experience. its easy to identify with that part, if you have gone through it.

So I wrote voraciously for a few months, I had such a overwhelming urge to write this, to tell the world, to shout out about this diabolical process. That need came from the profound isolation the disease causes on the victim and the family. thirty years later it still does that. Yes it is a household word now, and the Alzheimer's Association is huge, and we have some FDA approved meds to slow it, and more people than ever are getting it, but in the big picture not much has changed, sadly enough. We still diagnose the same way definitively with brain tissue under a microscope just like Alois Alzheimer back in 1908.

Even though a part of me died with my mother;s disease and ultimate death from Alzheimer's I still had to go on. She gave me something, a part of her, to carry on.
I mean there was really no option but to go on.

The thing about Alzheimer's disease is that if you loose someone close to you to the disease, remember it is always fatal, for those left behind on earth, the story never ends. It still goes on, you are never the same. If you had a mother or father die from the disease, you know a part of you is broken hearted forever, thats what the disease does. but you carry on, you carry on their spirit.

You lived through the process, you want it to be over, you want you loved one to be better, but now they died, that part is over, ...now what?

Yes maybe there is a strange sense of relief, when that part is over, your loved one is not suffering anymore, but now what do you do? You go on. I went on.

The manuscript never went away, I just didn't get a chance to work on it again for about another 17 years. Its funny because thats about how long it was till I got back to the book. That's also how old I was when my mother was diagnosed.  I went back to it, when I was about 44 years old, thats how old my mother was when I was born.

The problem was there is no ending to the process. and there was no ending to the book. Remember you can't write an Alzheimer's book unless it is uplifting, lots of self help, practical, etc. I was not sure the book was inspiring enough, not sugar- coated enough, with lots of hysteria on fish-oil and vitamins and cures. Yes those books sure sell, but this book may be a lot of different things, but the one thing it is is HONEST.

So how could I be a physician and not write a self-help book? Seems almost like a crime. Well I figured there are enough of those out there.

So then it is a basic blood and guts Alzheimer's memoir. All those horrific universal moments. Except I now had 17 years of experience treating traumatized, wounded, angry, lost, sad, suicidal, or homicidal, human beings, actually about 30,000 of them over the years. Yes I have done the math. It sort of colors your world. It was hard not to put those aspects into the context of the book.

So I knew I could not eliminate my world as a doctor, there are lots of nice clinical things about Alzheimer's that are explained in this narrative memoir.

The book is really about three things, my mother who and what she was before and after Alzheimer's and the horrible passive helpless struggle (the memoir), and the second part is the struggle the active laborious thankless struggle to become a doctor, the active and the passive process (simultaneous) that just how it happened,  (the secondary memoir) and finally sort of a long running comment  on all of this from a perspective of a boy of 17, a man and a physician, years later, commenting on all of this. Truth, honesty, and opinion, but honest. That is the part about psychiatry, mental health, medicine, doctors, Alzheimer's disease, aging, how we treat our elderly, our societal values, etc etc. That is the part I think that evokes a lot of unexpected emotions in some, tension, anger, suspiciousness, surprise, validation, redemption, at best it make some feel very uncomfortable I guess. Maybe thats good and maybe not. I mean a lot of it is the stuff we know, but like to pretend we don't. ...or don't want to.
Several things came together to help me close the book. for those who have the will-power, or like to see beyond pretense and fallacy, that is those who appreciate honesty, it will be pretty easy to see the uplifting and even self-help aspects. Some things dawned on me late in the book in regard to Alzheimer's disease. In something that never ends, it was possible to end this narrative.

3 comments:

Lisa said...

Congratulations Joe! What an accomplishment...

Lisa said...

...and meant to say, the title is perfect, for both the caregiver and the person giving the care.

Joseph Potocny said...

Dear Doc,

I am most heartly glad for you and the release of your book. Thank you for allowing me to be one of the first to read it.

Your Friend,
God Bless,
Joe

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