What do you know? What should you do? UPON LEAVING THE DOC’S OFFICE DIAGNOSED WITH AD

Care to guess, considering you knew the words Alzheimer’s Disease (AD) only from a distance. The only response most would have “beats me!” If you are a little bit cool you might think in addition to that response, “I’m gonna go home and think about it, talk to my spouse, call my brother.”

That’s about all there is to do with the current state of “What To Do When You Get It” put out by doctors, public service groups, churches, synagogues or mosques. You’ve been seeing a counselor, call her she might know? 50% odds get you no competent answer.

There are ingredients out there no one seems assertive enough to tap and put together. I have suggested it to organizations including Alz.Org as much as two years ago, in an effort to be concrete, to say something more than simply “YOU GOTTA DO SOMETHING MORE FOR THOSE IN EARLY STATE WHO CAN BE WORKED WITH TO KEEP THEM OUT OF THE PROHIBITIVE AND CONFISCATORY CYCLE OF HOME, ASSISTED LIVING, OR NURSING HOME CARE!

Have I seen anything being done? Nope

To be concrete I took recommendations to Washington D.C. in June, 2009, where my wife and I appeared on a panel before the Joint Conference of National Alzheimer’s Association and the Federal Agency on Aging (AoA) who were fact finding under the direction of Congress to report back on what we needed in better Alzheimer’s legislation. These were nicely received and produced wonderful discussion with the large group of Experts and Agency People who attended. I have also been seeing edified seeing results. It of course moves slowly in my impatient view.

I sent the recommendations noted first to Alzheimer’s Association in Minnesota, got great lip service, no action. In frustration I then sent them to Jewish Family and Children’s Service and have been meeting with them for over a year, meeting with the Temples and Synagogues in the Twin Cities and am seeing progress on a number of fronts. My Hat’s off to them. My Hat’s equally off to Lyngblomsten Lutheran Social Services whom I cited in my last blog post.

In August 2009 I sent an essay including the recommendations which can be seen by clicking on:  Minnesota’s Alzheimer’s Disease Working Group (ADWG). This was an organization then in its formative stage, that met for the last year and one-half since drafting and proposing legislation to our State Legislature revamping AD services in Minnesota. It was following the same format that produced California’s legislation reported on this blog recently. Click on You Wouldn’t Believe Something This Close To The Mark Could Happen In One Of Our States! to read of California’s adoption of such a law.

I served on the committee in Minnesota and the material was submitted to the legislature and is now being debated. We hope and we pray!

The first of my recommendations First Stop Program is pretty simple to understand. I proposed:

           

First Stop Programs: A Place With People such as Early Stagers that patients recently diagnosed can come to and learn about AD and how they and their families can deal with it. This could be supplemented by the managing agency with a resource list of services. The existence of this should be circulated throughout the Health Care Community.

The description of it says all there is to it.

I have AD. I am blessed, I still have ideas, I can still be creative, I have never been a good administrator, organizer or technician, as I recall some of the classifications given types of work talent by socio-occupational experts.

Knowing my limitations but wanting to see activity I have done what I am good at, writing and advocating. Doing so I attempted to elicit support for my ideas and am currently getting good response from Jewish Family and the Jewish Congregations. I know there is support emanating out of the Lutheran, the Methodist and other Protestant Groups. I have seen nothing of the Catholics or Islamic, although I do know social services are reasonably well turned out of the Mosques. Does anyone know of a senior center providing such a program?

I have only chagrin when I see the absence of these programs coming from the various Alzheimer’s Association local chapters.

 Doing it is so very easy and the local Alz.Orgs are the best positioned to do it. If any one asks: “What do I do?” if an answer is given at all it is 99% likely: “Call information, get the number, then call Alzheimer’s Association. They should be able to tell you.”

As stated more than once in this series of blog posts we in the Early Stages of AD are quite functional, have been left alone more than we like, and would love to have something worthwhile to do. This is the reason I write this blog. Volunteering is an important and fulfilling undertaking for anyone. Normals do it, get a lot out of it, our avenue is somewhat more limited for reasons stated earlier in the series, volunteering at the local Alzheimer’s Association Office is tailor made for us.

Just how difficult would it be for one competent functionary at the Alz.Org office to put out a request for people willing to be and do the following:

A First Stop Oasis for Learning How to Cope with Alzheimer’s Disease. All that would be required is their regular attendance at a meeting at the specified time and place, to visit and inform people new to the game.

Those with the disease have so much to offer. They have the time and can acquire so much fulfillment out of sharing their stories and experience. They were forced to learn how to swim. Being in attendance proves one thing. They are still swimming! Heck, is there more than that needed?

This has the potential of a seed able to germinate in the soil of such an endeavor into so many different kinds of fruit helpful in navigating this new world.

Relationships head the list. Those of us with AD, still functional, capable and craving to have Quality of Life in spite of having AD included as part need each other so much. The others tend to slip away and sometimes it seems dealing with those in the same circumstances of us is so much easier. We don’t have to keep up any longer when in their company.

The other things that can result produce an endless list.

Perhaps that list starts with a support group, a coffee clutch, poker club, children’s toy makers, bridge, poker or mahjong clubs.

Engagement on all parts of our lives is so important for us, for our well being, for our progress, for prolonging our stay in a functional enjoyable Early Stage life. The need of it cannot be more emphasized. The absence of it is a shame that cries not only to heaven but to every organization and political group from the neighborhood all the way to Washington D.C.