And greetings from Houston, Texas. I remember my Mom wearing an I like Ike button near election time in 1950 sometime or another. Not many folks around my house share the same feelings as Mom about Ike. Ike the hurricane, while relatively weak as hurricanes go, has left a lasting impression on this area of the Gulf Coast. Over a million folks are still without electricity. The city of Galveston, Texas has four feet of sand in its sewer lines and doesn’t know how to get it out. Their entire water supply is polluted. There was a lion wandering around the wreckage, a refuge from a local zoo.

And there are hundreds of folks with dementia living in unfamiliar surroundings moved 50, 100, 200 miles from their rooms in memory units to corporate facilities in North Texas. And some of them have no home to which they can return.

Just when you have figured out life is not fair – to becomes unfairer. Folks who are the most ill equipped cognitively are the ones who are the deepest and the most upset having to move on short notice to unfamiliar surrounds. They are the ones living on fixed incomes. They are the ones who even on a good day many people stop by to say good bye instead of hello.

I didn’t like Ike (I was madly for Adlly (Stevenson) as a presidential candidate, and I don’t like what Ike has done to the lives of those who are either the best or worst equipped to deal with change. It’s not fair. It’s not right. It just is.

I just read that Alzheimer’s disease has moved up the list of the cause of death of Americans.

It should not be news, nor a surprise that more and more and more people are dying because of this or that consequence of some form of dementia. More and more people are reaching the ages during which the probability of acquiring one or more of the diseases of dementia rapidly increases. What should be news is how little is being done to research how to add value to their lives prior to their deaths and after their diagnosis. What should be a surprise is how little research and research dollars are earmarked for psycho social research into the impact of the disease on individuals and their families.

We need another pipeline of support, not more pills, not more “maybe” promises, not more of more, we need different. We need to understand how to communicate with individuals in the later stages of the disease. We need to understand how to adjust and support someone in cognitive decline in ways which enable them to still feel they are living an accomplished and accomplishing life. They still need to find/have a clear sense of purpose and means to achieve it. They need to maintain their dignity, self worth, sense of today, and privacy.

We need to understand people are still home….even though others seldom knock on our doors because we either don’t answer, or answer in ways others don’t understand. When we forget your name does that mean we have forgotten you? We no longer have a need to give and receive love? When we become confused, when we wander, when we become agitated - these are all your labels, not ours. What can you do to support us and make us feel good about ourselves? You already seem to know what you can do to us to make yourselves feel good about us - drugs, secure facilities, restraints, and did I mention drugs!

We need more research, more research dollars to fill a psycho social pipeline of information, strategies, insights, support, enabling behaviors. It’s not dying that is the issue for me; it’s the living until then! The solution to the dementia problem is not prevention or a cure, the solution is learning how to successfully, to fully live with the process and consequences of relatively declining cognitive skills. We know, we have studied these issues even less than we know about the physiological processes - and we know so little about those processes, even after 100 years of researching the brain.

It’s not that more and more people are dying of the disease, it’s that more and more people are living with the disease. Words like cure, eliminate, halt, reverse, delay serve the ends of fund raisers, self interested parties, and well intended supports, but not people with dementia.

Why do so many of us have to die before how we live becomes important to politicians, researchers, professionals? Even if the baby boom didn’t exist, even if more people weren’t dying this year than last of the diseases of dementia, doesn’t living with it, living in it touch most of us? Isn’t figuring out how to live with it more important than dreaming of a world without Alzheimer’s? A world without hunger? A world without war? All are wonderful dreams, in the mean time how can the lives of the people and families living with Alzheimer’s/dementia, the hungry/starving people, the collateral losses of human life in war - how can these people’s problems be researched, supported, lessened? Why must we wait for the dream to be a reality? Most of us now alive will be dead. Those who are then alive when the cures come around, if they come around will still live with the wounds of dementia, hunger, and war. What’s the plan for researching and improving their lives?

Our needs today take a back seat in the minds, dollars, budgets and research of our champions, organizations who use our disease on their letter heads. Research for a cure, a delay, a slow down doesn’t just take precedence over research for a more fulfilled life - bench research/drug company research (as my Granddaughter would say) “RULES”! The suffering, the destroyed families, the damaged caregivers, the folks who die because of the disease - these real and now living human beings apparently must die in larger and larger numbers to catch the attention of everyone so they can try harder, and spend more. Not to meet the needs of living people, but to meet the yet to be experienced needs of people, many of whom are yet to be born. What has happened to our priorities? Our humanity? Our love and respect for life, not our fear of death.