Your Father is Dead. Grieving Children-Fathers and Sons.

It was 34 years ago today January 28, 1978, The residents of  Cleveland and Buffalo and Erie PA (where I was), remember it as the "blizzard of the century". It was a Saturday Morning and the wind was howling and the mountains of snow were piling up. In Cleveland. it was and still  remains the lowest recorded barometer reading in history.
 I had just turned 16 a month before. On that  morning, I stood in the driveway trying to jump start our car, as somehow my father in the hospital at Cleveland Clinic 100 miles away from Erie, had taken a turn for the worse. We had to somehow get the car started and make it 100 miles in the blizzard to see him. No one including myself, believed in his mortality. It wasn't magical thinking, it was just that my father the strongest, smartest person, whom could provide all forms of safety and security, like no one else in the world ever would or could.
As I stood in the driveway, that phone call came- the one that in an instant changes the course of your life-   'we didn't need to come to Cleveland now'. My Mother in a panic shouted  to my sister and brother, "Dad just died."
My first thought was, "Oh no. Now what am I supposed to do?"  34 years later I am still trying to figure out the answer. It is a timeless question for the ages maybe only asked and answered in a way between fathers and sons. I do wish I would have asked him when he was on earth, but I am not sure I would have been ready for the answer then. It might be something that is demonstrated through life, a question we go back to and revisit over the life span.
In that blizzard. I knew then that life would never be the same. I wondered what it would be like for my father to be dead. Would he be all right? How could he leave us? What would the world be like now? What was I supposed to do right then and what was I supposed to do for the rest of my life?
I had a lot of questions and there was now a fundamental problem that has plagued me forever. If the most secure thing in the world -my Father , could die, then there really was nothing secure at all in the world.
I had lost part of myself and part of my identity. When you lose part of your heritage, you roots and your essence, it might figures that one would not know where they were supposed to go or what they were supposed to do from then on in the future.
My life has never been the same, The world has always been a bit more uncertain, and maybe a little cruel, without that safety and security. His loss has colored every aspect  of my life. All the success and all the failures, all my roles as a man have been touched by this loss. From father to husband, brother, uncle, friend. personally and professionally.  All of the good and all of the hardships, since he died, oh so many hardships, the pain, the sorrow and agony, which I mostly as a man have kept to myself- all these have been colored by his loss, and they have been experienced and endured without him.
On earth I was nobody's son anymore. My mother soon took sick with Alzheimer's. It is a foul, lost feeling not being anyone's son, not belonging to anyone. We create relationships through out life, some are fostered and  nurtured, some are lost and decay, but there is no bond like a father and  son. There is only one.  

My mother died of Alzheimer's disease.......

Wow, it has been two months since I posted on this blog. Not much new in the Alzheimer's world as far as cures or new effective treatments. Of course the National Alzheimer's project passed, if you are suffering with AD or are a caregiver, this really does not change much in your life on a day to day basis. Perhaps our children or our children's children will not have to be stricken with AD.

24 years ago today, March 6, 1987, my mother died from Alzheimer's disease. Her children were at her bedside as she took her last breath. It was five days before her seventieth birthday. I was 25 years old and a third year medical student. She had been diagnosed 9 years before she died and went through all the classic stages of AD. By the time she died it had been so long, since I had known her as my mother, since she was able to converse, laugh, smile, at times it was hard to remember her that way.

About 10 minutes before she died, I was sitting at the foot of her bed. (We were all holding vigil, she was fairly comatose, No feeding tube, just nasal cannula oxygen. She had been like that for almost two weeks/ We all wanted her to stop suffering, we wanted it to be over. For her torment and suffering at the hands of this rotten nefarious neurologically deteriorating process.)  In the final ten minutes of her physical life on earth, a wave of anguish came over me. I had a sense, some atavistic instinct that it was over.  She was leaving the earth.  I started to cry hard, and I felt so terrible, it seemed that all the years I had tried to be strong during her ordeal were coming out. I didn't want her to die, I wanted her to be back and be her old self. I knew somehow that it was over, the Alzheimer's had taken everything and the last thing left to take was her physical life, her breath.

The sad thing is, when you loose a parent to Alzheimer's, you feel like a part of yourself dies with them. That feeling never goes away. I think because it in part a living death every day. A slow progressive heartbreaking daily thing. On one hand you hope for a cure, and on another hand you want them to get better and die and stop suffering. It is a profoundly ambivalent form of grief. Then when they do physically die you are so damn heartbroken over the whole long drawn out process.
another year has clicked by. most of us always remember the date our parents died. I guess it is one more way to mark the life cycle.

To all those struggling, if you are having a bad day, hang in there, life is not static it is dynamic, it will not always feel as bad as today. If you are a caregiver and you loved one is having a good day, cherish it, laugh, smile, hold it in your heart forever. God Bless

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.