Tuesday, May 25, 2010

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.

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.

Thursday, May 13, 2010

Letting Go- Author Unknown

Nice Poem, Do With it What you will.

Letting Go
Author Unknown

To let go doesn't mean to stop caring;
it means I can't do it for someone else.
To let go is not to cut myself off...
it's the realization that I can't control another...
To let go is not to enable,
but to allow learning from natural consequences.
To let go is to admit powerlessness,
which means the outcome is not in my hands.
To let go is not to try and change or blame another,
I can only change myself.
To let go is not to care for, but to care about.
To let go is not to fix, but be supportive.
To let go is not to judge, 
but to allow another to be a human being.
To let go is not to be in the middle arranging all the outcomes,
but to allow others to affect their own outcomes,
but to allow others to affect their own outcomes.
To let go is not to be protective,
it is to permit another to face reality.
To let go is not to deny, but to accept.
To let go is not to nag, scold or argue,
but to search out my own shortcomings and correct them.
To let go is not to adjust everything to my desires,
but to take each day as it comes and cherish the moment.
To let go is not to criticize and regulate anyone,
but to try to become what I dream I can be.
To let go is not to regret the past,
but to grow and live for the future.
To let go is to fear less and love more

Wednesday, May 12, 2010

Blogging about Alzheimer's and Social Responsibility?

     After Joe P's last post a couple of weeks ago, I started thinking about the purpose of this blog. Joe says people with AD read the blog (I am not sure who besides Joe) but then again it is a blog. Joe's posts have been fantastic and articulate, I know he works hard on them and for someone with AD, he challenges all of our stereotypes of an Alzheimer's victim.
     I wish there was a way I could get rid of Joe's disease to make him well again, for every victim and every family I wish I could do that. If someone waved a magic wand and said change your blog or stop blogging or jump this high and you will cure Alzheimer's- wouldn't that be fantastic? Joe talks of the frustration in reading this blog, not always understanding what I am posting. This shows the same frustration and the helplessness and out of control feeling I felt with my mother many years ago, as she succumbed to the disease. I still feel it for Joe and the five million other people suffering with the disease and the 40-50 million loved ones affected. All those feelings.
     I know if I tried to change the blog it would not stop the out of control disease. I wish I could.
     The posts are getting a little hard for him to read and of course being a person who happens to be a doctor and a physician and basically spending all day, every day trying to help people giving all of one's inner strength to others to help and heal them (because that is what being a real doctor actually does, ( contrary to our societal prejudice and stereotyping of physicians and psychiatrists.), I started thinking are my sometimes angry, even sardonic, sarcastic yet honest posts not nice? not helpful? not therapeutic?
     Do we blog for ourselves or do we blog for everyone else?
     I am not interested in making anyone feel bad or confusing them-with hard to read posts or in any other way, so honest to God, if you read this blog and you are a caregiver or a victim in early Alzheimer's stages and you read this and it makes you upset in any way, DO NOT READ IT. That is not the intent.
     I promise that there are thousands of blogs out there written in so many different ways, some offensive or hard to understand and some much more self-help and user friendly than this one, and everything in between.
    I hope it helps some people by providing info, knowledge or wisdom or experience, but that was never really the primary goal. In fact the primary reason for blogging was to just write, to blog. I know sometimes the posts are helpful, filled with info that might not appear on other blogs. Sometimes it is just writing and publishing, and it is about the reader, like a book, a connection for better or worse, between a writer and a reader.
     Other people get to blog freely, so why can't I, freely and honestly? Pressure and a conflict in myself.  If I blog as a person who happens to be a physician, do I have an ethical obligation (that others don't) to always try to make my blog helpful to people? Thereby compromising my integrity, freedom and honesty? People complain so much that physicians are not human and disconnected, so if you are human like in this blog: I have learned that people are not always happy with that either. People are not really comfortable letting go of their stereotypes of docs.
As much as people have their terrible misguided animosity towards physicians or psychiatrists, based on their own terrible experience that they expected or they heard about from someone else, would it be better to start over and lie (like some many blogs out there and pretend I was something other than what I am?) I guess I just can't do it.
     I promise not all psychiatrists are low life weasels, but so many people need to hold onto that, serves some purpose. Frankly it gets a little old. Truly it upsets some people if you even try to defend your profession, you just can't win.
    My book like the blog, sort of lets people in on quite a few things, that are totally upsetting to read about and certainly not something the medical world openly discusses. People don't like that part, it makes some mad, I get so tired of pretense and lack of honesty, so someone needs to talk about things.
    This blog is not really clinical, it is just my thoughts and feelings, not meant to be above or below any one's intellect. Its just how I think as a human being, we all get some slack don't we? I mean sometimes it is clinical but sometimes it is just thoughts, that's the beauty of blogging isn't it?
     When I went into psychiatry, 20 years ago, I really thought it was the most humane of medical specialties in so many ways. It took many years to figure out what a scapegoat the entire profession is. Think about it, people bring their terrible upbringings to you- pain, trauma, abuse, in-humanness, terrible experiences, with an expectation that another person will fix it all. Do you think a little of the pain, rage and anger,  if not like all, gets displaced onto that "SHRINK" especially when they can't fix it all. Throw in the wonderful world of psychopharmacology and there you have it.
     Perhaps the toughest part of the work, the most emotionally grueling aspect, is that as a doctor you basically give up most of your life in an effort to help others, you must treat everyone with the same empathy and compassion and positive regard, no matter how much your moral compass disagrees or disagrees with the actions of that person you have taken an oath to care for, you still care.
     In other words think about it, you get to (you must) treat a child molesting, murdering, rapist, in the same nonjudgmental compassionate way as you would that sad depressed old lady who is now widowed and whom basically gave up her whole life serving others and is now suffering with Alzheimer's disease- and do all that in the span of a half hour.
       Remember we are all connected by this disease, 5 million people have Alzheimer's. I hope this blogs helps somebody, if only by enlightenment, validation or simply, entertainment. I have considered the original intent of the blog, and always struggled with the moral or social responsibility or obligation I might have in blogging, I mean I'm not practicing medicine, I'm just blogging. Somehow by speaking the truth, my Truth, am I violating that social responsibility, probably not, I am just letting some people down maybe, by challenging some of their pretenses. If as a blogger I do have some higher ethical obligation to do whatever I can as a blogger (who happens to be a person and a doctor) wouldn't everyone who blogs, every human being have that social responsibility and ethical obligation as a human being to help others in some way? Yes? or No?

Friday, May 7, 2010

The House That Built Me

One of the bittersweet things I have to deal with is visiting my folks house without them in it. It was tough in the beginning but it is getting easier. Their home is beautiful. Built in 1972, it is the only home I ever knew, as I was born in 1973. It is a large home, brick finish, roughly 4500 sf and sits on 25 acres in Northern Georgia. Pines, tulip populars, cherry trees, azaleas, countless bulbs, tulips, lily's, mom and dad have gradually landscaped it over all of these years. It hurts me that they can't be there. It also haunts me, in a good way, with a lifetime of memories.

I, of course, still deal with daily grief, I actually call it "survivors guilt" related to my parents as well as the day-to-day stuff related to managing both their estate and their health. Recently I heard a song by Miranda Lambert called "The House That Built Me" Listening to that song literally heals my soul. It entirely describes how I feel when I visit their house and my late grandmother's house which is right next door. I am including a link to a youtube video of Miranda Lambert performing the song and talking about the beauty of the songs lyrics. I hope you enjoy it as much as I do!

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