I wish I were on that road least traveled. Not in the Alzheimer’s Disease (AD) Lane of the road I’m on. It is not the road least traveled. More and more folks are out on this road.
That is a matter of concern. We are starting to see an exponential growth in folks with AD. This is caused by reason of people living longer, more people in their Senior Years where each year the risk of the disease increases. This is so because of the statistical anomaly of the post WWII generation named the Baby Boomers. They are coming into senior age.
Of the many anomalies about the Boomers is their number. There are so many of them. All of a sudden there is a huge increase in people occupying a segment of the population. As they pass through like a bubble they are followed by much smaller populations.
The mass of the Boomers become critical because of their numbers and because the populations behind them do not have the numbers necessary to adequately support them. The Boomers are also the spending rather than the saving generation who now face the substantial loss of what was saved because of the recent economic collapse. At their current age they do not have the time to replenish this loss.
What a perspective as I look in the rear view mirror. What a different world I see as I look forward on the road ahead of me. This is certainly a new paradigm and one I am fortunately able to describe and share my experience being on it. It is also one that forces me to be the oracle of doom as I see the cost I face multiplied by the cost the generation after me will face with fewer funds and less population to pay it.
It has become my mission to talk and write about AD as much as I can. I can share what I experience having AD. I can share the unique perspective I have living with AD. I can share the challenges and pitfalls we each individually and we as a community face because of this disease.
It is in this last venue where I believe I have so much to offer. Until you get this disease you do not realize what an impact it makes on the rest of your life, on that of your loved ones and on our communities. It is going to be epidemic in numbers and enormous in its need of care at intolerable cost.
I am fortunate with this disease, my cognition is still cooking and I can still write. This gives me the opportunity via this blog to get on my soap box and just talk about it, deal with the issues of it as I encounter them, and hopefully, by doing this accomplish something good by reason of my having this disease.
I certainly don’t need this disease but if I am to have it I want it to come to some good. Therefore if some greater knowledge is acquired by another, or benefit obtained for any AD purpose my mission has been fulfilled.
That is my primary reason for keeping this Blog. Using the unique soapbox I have. I want to explain it from the inside as much as possible and give my views out of the experience of it as to what should be done with it and because of it.
All of a sudden being diagnosed with this disease, standards and patterns shift. It is an entirely new universe not only to the one AD afflicted but to all of those loved ones equally affected. Given a choice would I opt to be one afflicted or one affected I do not know. I believe it is harder to be the caregiver than the one cared for.
Everything is changed, is different. Priorities are absolutely shifted; quality of life degrades slowly, surely, almost unnoticed as it occurs. I know I have slipped these past four years since diagnosis. I am so very different, withdrawn, not an active partner to Diane my wonderful wife. I know I am different but do not really know how or why.
I come to see it best when I experience her grief and her loss of the partner she once had. That is almost beyond bearing. Watching her see me slipping away, remaining my support yet needing to forge a new life without me, when I am still home, there, quite alive, but different. It is tragic to see.
It is so hard, like attending your own wake, holding the hand of your loved one, as together you look up at the corpse of what was, laid out in the casket before you.
This is not dramatizing! It is precisely the way I feel when I see her grappling with this new reality, our life.
There is so much that is needed to provide the wherewithal to cope to those of us affected. So little is done for us who are still functional, we who are in the early stages of AD. We are relegated to the back bedroom of life, forgotten and not much cared about excepting by those closest. There are so many programs and activities that could enhance our quality of life that are simply not being done.
99% of the activity supporting AD is raising of funds to find a cure. This compares in my mind to be the same as this:
A terrible auto accident has occurred. Wrecked cars are twisted and turned all about, steam and smoke rising from them. Bodies are strewn about and remain in the wrecked autos, injured, damaged, bleeding, pools of blood gather on the pavement.
The scene has been blocked off. For help to those involved in the crash? No, to avoid more crashing into the crash scene. Once safely blocked of the police, the spectators the news people, the health care worker called to the scene are concentrating on organizing ways and means to avoid this crash happening again.
It becomes more important to re-design the highway around and away from the dangerous curve causing the crash. They cannot allow another accident to happen causing injury and damage to others. Oh, and by the way the injured are left to bleed and then die with out ambulances, first aid or any other measure of attention.
Couldn’t they do both and attend to the injured immediately?
If you have this disease or have a loved one affected by it you are screwed. There is little or no care leading to that point where you or your caregivers can no longer provide the care that is needed. When more is needed the quality of care that wasn’t does not improve.
Whether it is home care, day care, assisted living care or nursing home care, the cost is prohibitive and the quality little to non-existent. I have discussed the reasons in past blog posts and will probably repeat them ad-infinitum. Short of that this time I would prefer to finish this with quoting a young lady who recently found my blog and left the following comment:
Julie has left a new comment on your post "Stressful but Vital: Picking a Nursing Home":
This is very interesting stuff! I know there are huge differences in care in America vs. Canada, but the cost just blew me away. I can only speak for the facility I work at and private care (out of pocket funded) is roughly $40 thousand a year. Government funded is simply that....no out of pocket cost. The difference in care between the 2 is interesting.... one would think private care would equal better care, but in my experience that isn’t necessarily true. Government funded care has oodles of mandates, laws, rules etc. Private care none of this exists.
I do know that after spending time working in both government funded facilities and private facilities, should my parent or spouse ever be diagnosed I hope to be able to hire, full time, a personal care aid or RNA, some of which the government will also fund. That way, a loved one could remain at home and still receive care that a family member may not be able to provide.
Are any of these things available to you?
My answer Julie is an emphatic NO! We have the best medical and health care in the world here in the good old U.S. of A. (so they say!) Somehow we pay more for it, pay more for the drugs manufactured here than you do for those same drugs, and, until the new health care reform takes affect we pay more across the board with no government assistance unless we are too poor.
We are in the stranglehold of the Corporate and Political Oligarchs who took over control with Reagan and are doing there best to dislodge that uppity black of ours recently elected who is trying to make a difference.
I close with CHAGRIN!
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