The Helplessness of Alzheimer's

The process of living through Alzheimer's disease in a loved one is essentially an emotional prison. You are stuck behind the walls of helplessness. You can't stop the disease from progressing, you can't reverse it, you can't cure it. you have no control of the situation. You are involved  very passively and helplessly in a process. Sort of like being caught in a tornado, and waiting for the storm to end, wondering how much destruction will be there, and if you will even make it, and of course in the middle of the storm you are not sure it will ever end.

Prison, you freedom, your control is taken away. It leads to anger and frustration, we often end up lashing out at those whom are closest to us, the guilt leads to more anger. 

You remember the loved one in better times and you want those times back, but you can't have them. People that have not experienced it feel bad or sorry, they think it is terrible, but you feel a wall between you and them. That is what the disease does.

It is diabolical, one of the worst things to experience, in our modern society, the disease is a machine that is non-stoppable, it isolates a person, physically and emotionally, it alienates siblings and family members, it should bring families closer, but it usually does not do that, it seems to conquer and divide. Every family member goes through the living grief in their own unique way. 

That is all part of the Alzheimer's process. We hang on every hope, the media exploits, just it doing their job, with reports of breakthroughs, but the fact of the matter is the efforts to work together and conquer the disease are quite fragmented. The disease conquers and divides. It is isolating. 

The great non-profits of the world, do their best: missions, always missions, conquer, cure, stamp out, stop the diabolical killer. Walks, fundraisers, see and be seen. Stop the disease. Remember all the tax status, non-profits have to balance budgets, survive, pay salaries, send press releases, go on with the mission. sometimes the mission of the non-profit is unofficially to survive, legitimized behind the official altruistic well meaning MISSION. 

We must be doing something wrong, or it just not that important, how is it that all these public sector and private non-profits, researchers, doctors, clinicians, everyone, can not simply come together and get it done? Lots of little worlds, fragmentation's, fighting for grant money and publication, notoriety etc etc, can't come together? Fragmentation. The disease conquers and divides. The helplessness of Alzheimer's. 

Does anyone who has not lived through it, really understand that forbidden feeling we all have? Hating the victim, and constantly having to remind ourselves we hate the disease and not the victim? 

Worse yet, wanting it to be over, wishing, wanting, hoping the person will die, since it is so awful they are suffering, we want it over. Then we remember our loved on and who they were before the disease, and we are overwhelmed with guilt,-the living grief.. My God no wonder there are so many health problems, and depression in caregivers and family members. What can that kind of stress do to the immune system, the bodies resilience?  

Sadly with what has happened to our health care, and honest to God where it is headed, I am so worried about the lack of honor and dignity placed on our aging population. Euthanasia may take center stage, and the media and politics continue to color our collective thinking. Well since we can't beat the killer lets join it.- Wrong direction to go in, I know it, I promise.

How did we essentially conquer AIDS in 25 years? Were we just lucky? Better money, Better resources? More important people had it? What is AD trying to tell us about ourselves as a society? 

Is there a way to truly work together, to come together, to conquer this killer? Right now there is something wrong with the paradigm. So many self interests hiding behind the mission. Why is it so fragmented? It does not help any that we are more narcissistic and youth-worshiping as a society than ever, with absolutely no attention span and completely aggrandizing and novelty seeking. Are we redefining Altruism? At this point it seems you can't officially be altruistic if you don't have the correct tax-status. fight each other and cut the throat of others for the money, for the grant. for the publication. For the recognition. It seems we are pretty screwed up in our priorities and how we are going about this. Perhaps it should be a law that every American has to adopt a AD victim or an AD family, for even a day, an hour. 

Maybe all the Alzheimer's efforts should be mandated to poll their resources. no fragmentation. Except we all know where that would go, more bureaucracy, and power struggles for control, and in the end somebody a few making money.

Well Doc Here I am again.

You have nagged me to post again. So I decided to post a post that my wife posted on my blog. Is that toooo many posts. She is my main caregiver and since your blog is more to that arena, I thought it would be ok. But notice her post is not 42 paragraphs like some people we know. Love You Man.

Joe posted a few weeks ago about the fact that we have had some difficulity. He has had some issues and yes I was hurt by them. But in all fairness I guess I am to blame too. As you know he can still find his way around the computer and sometimes it gets him and others into trouble. So as a caregiver and as a spouse I am going to say that we need to ask questions when our other half is doing something that we are not sure of. We need to check the bank statements and credit card statements just to make sure there are no charges there that we do not know about. $10 here and there really add up. Also just like we do with our children we need to know who they are talking to. Whether on the phone or on the computer. So I am sure that we will have a few more arguments about how we nag and are trying to control things but, if we don't damage can be done that can not be forgiven or forgotten. Fortunately we are working on our end. So do not be surprised when he writes that I am being a nag and not liking me or others very much. We do it out of love.

Pay Attention to what is going on around the person you care for.

Lynn

The Course of Alzheimer's

Good to see Joe and Karen and the resurfacing of Lisa-so glad you are back blogging again. Very dear, Loyal and good people, I can't say enough about them. We are all  universally connected by this AD machine.

One of the things I have been thinking about lately is the course of this disease. The seven stages are quite well known and popular over the last 15 years. It does not matter how you break down the timeline of the disease, on a long term basis it is always predictable. One of the confusing things is that it gets diagnosed at all different times on the continuum of the illness. So it may seem to last anywhere from five years upwards to twenty years. Someone may be several years into the process when they are actually diagnosed, or very early on in the process, depending on the family, the doctor, even ones willingness to make the diagnosis, including the doctor, the family the victim.

In the early days and years the disease is quite a bit of a roller coaster ride, peaks and troughs, good days and bad days. They often happen for no apparent reason, the phase of the moon, the alignment of the planets, you never know when a good day or bad day will come, in the earlier stages. So the day to day course can be quite variable in that way. It is enough to drive anyone bonkers.

Here's why:

One a good day things seem clear, oriented, lucid, the family, the caregiver, gets this sense that maybe everything will be okay, maybe the AD stopped. Maybe it is a miracle, maybe I am waking up from this terrible nightmare. Yes we know logically it is not true, but we are all human, and it takes us for an emotional ride. we get a strange little candle flame of hope. But the next day for no reason is a bad day, disoriented, a bad scene, getting lost if driving still, leaving the stove on, getting dressed inappropriately, forgetful, confused a bad day after a good day, anger, despair, grief, a feeling of being betrayed by God or whoever you look to- a terrible emotional roller coaster.
Sadly as time goes on these are less good days and over time a lot more bad days, when you are close to it, it is tough to look at the big picture and you live day to day and loose perspective, you want to get off that ride, but you can't and you won't.
You start to hope for good days, less and less over time, you try to laugh, but it gets harder to laugh.

Yes in the big picture the course is always predictable, the various ways of breaking it down the early intermediate or late stages, it is universal and correct. But early on these is not enough credence that can be given to that roller coaster ride.
Even if we understand the stages in the big picture, it give us a nice sense of false control over an out of control situation, but it does not help to much in that day to day ride when you are so close to it, just trying to survive another day.

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.