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.

The Media-Research-Alzheimer's Breakthroughs

Did you ever notice how many treatments and cures there are for Alzheimer's.

Cell phones, video games, vitamins, statins, anti-inflamatories, high fat diets, low fat diets, all kinds of diets, lots of coffee, no coffee, more exercise, think healthy thoughts, sudoku's etc etc and on and on, we cling to each new breakthrough, and possible cure, but we never really look at the process. It is almost like finding the missing pearl in the shell.

We accuse the drug companies of holding out. Not enough money for reaearch, not enough dedicated to research. The pearl must be sop basic and so obvious, it must be right under our noses. Probably not.

Emerge the media. On a slow news day- big reporting,

"A NEW ALZHEIMER'S BREAKTHROUGH" and so it goes, and caregivers and victims get their hopes up. They are little pieces of the puzzle. It is an emotional roller coaster for the caregiver, who cling to every media report, only to be let down. If the cure was cell phones, or a vitamin, wouldn't that really have caught on by now?

I wish the media outlets would do an expose on what the media process does to people, and maybe we need a summation of all the little breakthroughs, the tiny pieces of the huge Alzheimer's puzzle we have filled on so far.-

Except that would not make good news. It would not be sensational for people. Not like "THE" BREAKTHROUGH. We are constantly hit with promises of a clear and completed puzzle. As family members we cling to any hope. It is human and it helps those suffering with the disease and their family members.

We are more quick fix, and need instantaneous gratification more than ever, I wish the answer was truly as simple as the constant claims make it out to be. I guess it makes news and gives people something to talk about. It does raise awareness. I keep thinking their must be something more than raising awareness, and reporting on the latest, previously missed, yet so obvious breakthrough. Something just is not right about the whole picture.