MikeD's Posts

THIS CALAMITY WILL NOT GO AWAY. IT WILL GROW AND GROW!

As a local and national community we have concentrated great effort to fund research to find a cure. This is as it ought to be. Finding a cure is possible. Once found it would relieve a coming catastrophic epidemic that will occur as the boomers come of senior age and the increase incidence of Alzheimer's Disease (AD) multiplies exponentially.

If we think the bank has been broken or nearly broken by the current financial crisis just wait for the crisis that will be occasioned by the surge of people needing care for AD!

Are we positioned to respond to this impending calamity? The answer is NO! If all we have in place is what now exists for care of those of us afflicted with AD we are in real trouble

WE NEED TO CONCENTRATE MORE EFFORT, TIME, AND GET RESULTS

We need to concentrate on this in the arena of economy of care or the cost of care will eat us alive!

This issue must be front and center!

We have possibilities of solutions such as:

a. Enabling legislation,

b. Innovative structural change within the health service industry and

c. Advocacy by those of us with the disease positioned to talk about it and faced with the eventual physical and mental dissolution that occurs from it.

We need to get about finding solutions!

1. We should initiate discussion on this issue. There is a public interest in doing so. We do not need another financial catastrophe following the one we are currently in.

2. We who have or are affected as care givers or loved ones are in a unique position to get down and personal on the issue and start educating each other and everyone else about what it is really like with this disease.

3. A first tier issue comes from the benefit of early diagnosis followed by treatment of us while we are in the earliest stages of the disease.

In the early stage we are still quite functional in society and have so many of our cognitive abilities intact. We can talk about the disease, our experience of it, what can be done about it.

The primary message at this level of discussion is to let it be known, the more we work positively to stay at this level the longer we have a likelihood of doing it. At this early stage level we cause the least cost of care. With more of us staying longer in this early stage the economy relieved the cost of paying for care. This is true whether or not it is out of our own pockets of out of the public pocket.

HOW DO WE DO STAY IN EARLY STAGE LONGER?

The first line of defense is eat right, exercise, and stay in active contact with both your mind and with people. Studies show that this prolongs the early stage state. It also provides a quality of life far superior to that of simply letting your self go into the various stages of debilitation this disease maps out for us.

We need to dispel the all too common fallacy that when we have it we are no longer functional. This may be true if diagnosis is not made until we reach later stage. If we are diagnosed in early stage we are still quite functional and able to help ourselves in staying right there!

As functional people afflicted by AD we can communicate intelligently. Just because we have the disease doesn't mean we should be relegated to secondary status. The time will of course come; our personal clock is ticking as our time runs out. Until it does it is our choice to ward it off just as long as possible. It is equally in our interests to use whatever time we have to advocate on the issues of Economy of Care. We still have worth to us. We can use our experience to help all prepare for the increased need for care.

I URGE AND ALSO GIVE THIS CAUTIONARY INSTRUCTION:

4. We need to pull out of ourselves and recognize our worth, our value, produced by having this disease or a member close to us having it. Although it is a tragedy to get it, it can be a gift to use it in a purposeful way.

One person recently suggested on the Alz.Org bulletin board: “Maybe we (people with Alzheimer’s and their caregivers) should spend a little less time being depressed and accepting and a little more time being irate!” I agree with this in every respect excepting anger. I would replace “anger” with these words: “compassionate of others.”

I believe we who have the disease can get a little too self absorbed at the expense of everyone and everything around us.

Probably our first level of oversight in our self-absorption is the greater plight of those close to us who suffer the affects of our disease without having it. It is truly a family disease. The Caregivers are the unsung heroes on the front line too often overlooked.

The second level of self absorption I see is the lack of interest in becoming involved! In the normal world we have gotten used to leaving it to the other guy. It is safer to stay in our quiet little corner and not make waves. Unfortunately, this style of behavior becomes more pronounced after diagnosis and before real incapacity sets in. We have no excuse for this malaise. If we are not going to be IRATE and do something about it, how can we expect anyone else to do so?

COST OF CARE IS OUT OF SIGHT!

5. The cost of care of this disease is both appalling and personal. Until you exhaust both your estate and the estate of your spouse, YOU PAY THE BILL YOURSELF! This includes nursing home, home care and anything in between. These costs are significant. An economical nursing home will cost 70 - 100,000 a year. The government will step in and help out only after you have drained your retirement, savings and most of your assets.

The cost of care is prohibitive. Like all other Health Services today it has become confiscatory. Every service is regulated, formalized and organized under gargantuan health service organizations whose service is uniform and provided at premium cost. This is not only true of most nursing home services it is also true of so many of the assisted living and in home care services. It seems so long as there is a third party to pay, (insurance, government, charitable organizations) little concern is exercised in containing the cost of care.

Only recently are service organizations looking at remaking their wheels to provide a more practical economical service package. This needs to be encouraged, furthered and implemented.

In home care is probably the most efficient form for economy and quality of care. Group homes where common services are pooled for the recipients offers much of the same. Whether this be the Ma & Pa home on the lake or people pooling their need for services out of a common location such as an apartment complex or multiple living facility, these offer economy and efficiency that needs to be further implemented.

I would hope a more direct service program without the huge and expensive regulated uniformity will be possible.

Tax breaks, creative government programs providing funding and/or creative schemes to reduce the cost of service and provision of it is more directly needed.

The current formula for qualification for public assistance needs to re-addressed. Our current scheme is designed to prevent the abuse too often occurring in the family turning the farm over to kids to avoid Old Age Assistance Liens. This is something for which remedy is still needed, but the uniformity of it creates an unreasonable burden for those of us afflicted with AD.

A study was reported nationally recently stating the cost of caring for the AD patient was twice that of equivalent senior illness and disability. As we have learned from the banks threatening to fail in the current economic crisis the cost of Alzheimer’s will create a separate similar calamity. We can and should take the steps to avoid that now!

WHAT CAN WE DO?

6. Our first line of defense is with those of us in early stage. The object is to keep us in that stage as long as possible. It affords as a superior quality of life. It saves our community the cost of caring for us.

Early diagnosis is one of the best means to identifying and dealing with the disease in its early stage. There is a huge bias against entertaining the diagnosis of AD as a possible cause of a set of symptoms suggestive of it. The Health Care Provider is too quick in delaying diagnosis to see if another reason presents itself other than AD. Often as not this simply allows the disease to develop to a more debilitating stage where treatment is not as likely to be successful.

CONCLUSION

I have the disease. It is not near as bad having it as worrying you might get it. I could let myself get upset and down about my prospects because there is nothing nice about them. Instead it is my choice to find value in having this disease.

My value is this: With my personal experience of it which I can share, with the cognitive acuity I yet have, I want to do something worthwhile with this disease I have. Advocating the foregoing is one of the good things I can do.

Writing like this is another. I hope in what I say another might read it and say: “That makes a lot of sense. We are uniquely positioned to make a contribution. I will join in this effort both to advocate and to get others involved.”

I hope this is not construed as so much babble but seen as something having sense and purpose.

Mike Donohue

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