I Have This Terminal Disease,
It Moves So Slow It Is Killing Me!
One of 25 Best Alzheimer’s Blogs of 2012
Mike Donohue is a brave man. Courageous, direct, and bold, his blog energizes readers with a passion for action. Dementia Endured gives a hint in the title as to the nature of this talented writer: he will endure. And with a personality like Mike’s, it’s easy to believe that he shall overcome, as well!
His life experiences are opened to the reader, and his journey recovering from alcoholism to adjusting to Alzheimer’s holds its own fascination for visitors to his site. Mike’s strength and determination will remind readers that dementias are one area in which it’s best not to hold any punches.
Tuesday, February 22, 2011
Monday, February 21, 2011
Read New Ideas in Dementia Care on The Tangled Neuron by clicking on the title to go to the Tangled Neuron or by clicking on Archive where I have posted it. It is refreshing news and yet another example of both "Our Need" and the "How To" dealing with this problem becoming exclusively OURS!
How very important; how very significant; how badly needed to hear more of these new ideas. A new way of thinking about Alzheimer’s Disease (AD) is sorely needed. Not only do we need new direction, as current circumstances will dictate, we will be required to find new direction in the way we care for those of us affected by AD.
The sign posts are everywhere. Cutbacks here, there, everywhere, deficit intolerance, tax cutting fervor, 2 years post democrat landslide republicans walk away with the election.
If you pause to look you can see anecdotal evidence behind the signposts any way you turn your view.
Reading the newspaper this morning there is report of the building gridlock in Congress over the House adopted budget cuts, stalemate in WI, a liberal Governor in MN proposing a budget cutting nursing home benefits for K-12.
Our near term future will be in continuous oscillations between right and left with the only result the balance between what we know as more gridlock, more political and economic stagnation.
Realistically Government will not; won’t; can’t; should not be relied on to fill any needs of AD. Our only hope is to do it alone, ourselves, in groups, in a grass roots way, finding innovative ways that produce results beyond palliative ones, results that not only help, but enhance both quality of life and economy in care for all of us affected by AD.
None of this now exists; economic worth is swirling down the drain to the profit taking practices fostered out of Washington, Wall Street, Big Corps, Big Pharma, Big Health Care Service, Big Health Care Insurance Industry, the list is endless. It is classed under Hi-Profit and Capital Growth Industry in the private sector subsidized by concerted lobbying outright subsidy and regulation out of Congress and the Bureaucracy.
It will be up to us on the local level, designing programs with efficacy and economy, utilizing the many tools we now have. What tools? To name but a few:
1. Religious, Altruistic, Issue Oriented Groups sponsored by and formed to help the people and not to raise money for Big Pharma and Big Health.
2. Neighborhood Co-ops and mutual aid groups to organize common services and care for all seniors with special emphasis on AD needs, seeking economy and competence available to members participating with a common building, development or neighborhood locale. This would be administered by participants and social service agencies.
3. Build the work of social service and like kind agencies with the counsel and cooperation of those AD affected to forming the kind of groups helpful in prolonging persons in early stage, caring for persons able to live at home, operating aiding and staffing small day care, assisted living and nursing home care in small, multiple, neighborhood settings, capable of serving the needs of the area in which it exists and accountable to the people it serves saving the high premiums incurred by uniform homogenized governmental regulation.
4. Form groups from Schools, Primary, Secondary, extended schooling, such as Trade School, Community College, College and Universities to serve. Start with curriculum emphasizing the responsibility to care, morally, spiritually, most of all in order to provide help in a learning environment for students. Follow through with devising, organizing and fielding programs to visit, to help, to attend and to staff the service of helping out.
Add to the curriculum, particularly in higher education levels, programs for serving the actual needs of people affected by AD, such as, Psychology, Social Science, Physical and Occupational Therapy, Education and, other relevant departments with the knowledge, background and management capability to form these programs ranging everywhere from introduction and follow up along with support groups to introduce, teach and maintain the coping skills of living with the disease.
Other groups would be Social, Intellectual and Creative groups stimulating via communication and program the many modalities now existing and those to be added and experimented with to both enhance and maintain quality of life for those affected.
5. A huge untapped resource is the many shrinking exurban, suburban and inter-city urban areas dedicated to the living and growing needs of families with children developed post WWII, and not is tragic decline. All that is left in them are the seniors who haven’t left home and can’t navigate the freeways and highways easily to fill their needs.
There are no services for them nor is their as yet a superstructure forming out of the vacant infrastructure to service this needs. It is too costly to build, as much to renovate. We need programs of renewal, a bold Urban Renewal Program out of Washington would be wonderful but is not to happen.
What we can do is use existing governmental and social organizations at lower level to form, manage and fund improvement making it economical to do. The result is neighborhoods in place, retail space available, both waiting for the other to come and make a marriage.
One possible funding source is the one we developed in the days of locally fostered public works using the local governments to write lower costing tax free bonds, providing programs for tax increment financing and all of the schemes the became unpopular after Morning In America dawned.
I will stop at five of an otherwise endless list of proposals that will provide Effectiveness and Economy in Care and benefit all of us as be left out in the street when the federal bank breaks!
Little is now being done, so much more needed, and after sufficient stagnation it will be required of us.
So hat’s off to what the folks are doing in Rochester, NY where the meeting and work reported in The Tangled Neuron was done.
Sunday, February 20, 2011
Saturday, February 19, 2011
Friday, February 18, 2011
LIVING NOW - FOR NO MORE THAN A MOMENT
I read somewhere once that we live within the confines of our activities. Our reality is what we do, who we are, how we relate to those around us. We develop styles of relating, routines of doing, etc. This seems to keep us going and accountable to ourselves while we are getting there.
In this “what we are” “how we have are defined” by ourselves and those around us, and “how we do things” becomes a lot of who we are. A personal tradition rules in large part without necessity of much thought or decision making.
Think about it:
You encounter a person or event for which you have already formulated your definition for what it is. An example: You are on your way to this party at your Aunt’s. They are always boring beyond belief. You can’t wait to leave. There is a bias involved in your expectation of the event that is difficult to overcome and accept should it turn out to be enjoyable and interesting.
We experience moments of freedom when we find ourselves in a completely new and different event, one for which we have neither familiarity nor preexisting attitude with which to encounter it. We have never been here before. We do not have a formula to use with it nor do we have the experience with which to employ a pre-decided bias.
I for one in such an event feel exhilaration and freedom. Boredom is broke. Everything is new and mine to decide how I relate to it. Sometimes these are difficult. A kid in a new school can find it a kick or a curse. Leaving home and taking on the world as a young adult can be a joy. It has so much to do with what you make of it.
This has been my reaction to my Alzheimer’s diagnosis. At first I went through the Kubler-Ross formulated steps of grief. When I was through with it I came to a personal decision: “So, what are you going to do about it?” My answer: “Make the best of it!”
What followed was the most freeing event of my life. I no longer have to be anyone or anything that was expected of me. I am not what is expected of me by me or by anyone else. This led me to the decision to take what I had been diagnosed as having and use it to help others. My purpose in this is to make this terrible disease that is mine the course of which is dreadful “Count for Something!”
That is what I am about with my diagnosis more than two years ago. My acceptance of it has given me more peace and serenity than I ever though possible.
The are as follows: click on each to go to posting.
- It's All in the Learning, that is Plus and Minus
- Working To the Endpoint
- LIFE: THIS FINITE WONDERFUL PLACE IN TIME
- DANCE WITH THE ANGELS
- We Join the Grand Celestial March
- Is There More That We Can See?
I Think Therefore I Am!
• Everything that happened follows a direct course linked to the events which led to it. One after another they all connect. In this way these previous events do influence the subsequent events.
• It is as if they form a pattern. A pattern I have had little or no hand in formulating.
• So many of the events are such that there is no way I would have chosen them to happen. They are no more directed by me than was my birth to my parents in the time frame it occurred with the gender choice for me as I entered this life.
• The degree to which I stepped back out of the way eased the process of the happening of these events. The extent in which I could turn it over, let it be, go with the flow, the easier time the process has reaching its result.
• As each of these events transpired, one following necessarily on the other, the pattern of them produced in my view a favorable result. Not a pattern I might have chosen. But, not something I would now choose to turn aside. I like the result in spite of what I would have had it be.
What is significant about it is this: It is in this way it seems to happen. Anything I have done to defeat it backs up and beats me. It occurs in spite of me. When I take control of my moments and try to direct my response it makes it harder for the natural consequence of my moments to occur. Having 74 years of living this experience I am convinced this is how it works!
Thursday, February 17, 2011
See the articleAlzheimer's Prevention: Reducing Your Risk by clicking on it