June 2008
Alzheimer’s From the Inside Out
June 2008 - Issue #4
Hello!
I am Richard Taylor, and I have been living with the diagnosis of “dementia, probably of the the Alzheimer’s type, and certainly with Alzheimer’s syndrome’ for the past seven years. This is my latest monthly news letter.
I write because it helps me feel okay about myself. I write because I want to encourage and model for other people who share my diagnosis to think about their thinking; to live in today; to talk/write about how they feel, what they think, their needs and wants.
If we don’t tell others, how will others know? If we don’t express ourselves as we are today how will we know who we are? How we are?
Thank you for taking some time to live with me in this moment of my disease and my life.
Richard
“The single biggest problem with communication is the illusion that it has taken place.” –G. B. Shaw
More of Us = Less of Us
Hello!
I just read that Alzheimer’s disease has moved up the list of the causes 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 Grand daughter 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, 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.
Richard
Dear Richard - What’s the “Right Thing to Say?”
Hello!
Frequently folks ask or write me for advice. They want to know what is “the right thing I (they) should say?” I really don’t know what to say. I’m not them. I don’t live with or in them. I’m still a work in progress deciding what I should say! And, in addition to that excuse for not answering them directly with a “dear Abby” type of advice response - What I am finding is there is no one “right” thing to do or say. Some are better than others, especially better in certain circumstances, but life is easier if we just would trust, love, be open, and accept each other for who we are today. And if we don’t know sure for sure, we should ask, we should listen, and we should just be.
Maybe sometimes we just shouldn’t say anything if we are in the midst of an emotionally charged and defined moment. Maybe we should say, “time out.” “I’ll be back in five or ten minutes”
Being is difficult enough without dementia, being and sharing that process of being with one of the sets of symptoms of dementia is made even more difficult by other’s attempts to hang on to, shape, reinforce parts of our being which are either not accessible or aren’t there any more. We are being in the moment regardless of the best or worst behaviors of those around us. It’s just it would be easier for all concerned if we stopped this “long good bye” nonsense” and started to say “hello” to each other more often.
Medically accurate and socially acceptable labels for diseases are issues for physicians to lose sleep over. The fact for us is it really doesn’t need to make a difference to us what words others use to label our syndrome, our collection of atypical behaviors. It’s how we decided to react emotionally to the words we ourselves utter, think about, and tell each other.
We all need to keep constantly reminding our selves and each other of this. We need to enable everyone to be themselves, to understand themselves, to love and to feel loved. The medical community, society, culture, history are all trying to convince us who we are, and we aren’t - who they say that is. We are ourselves. That, to me is what getting “it” means. At the same time we are, we must be all of ourselves, we are also a person with dementia who loves, needs, lives with his/her caregivers. They too need a “right” answer.
Perhaps the right answer for me is the wrong way to frame it. I need, we need to find a right aanswer, the right thing to say for us. We need to stop looking for right and start talking to each other about what meets my needs, your needs, our needs.
Richard
What’s New with Yours Truly?
I’ll be speaking in Bad Axe, Michigan on July 10th.
I’ll be speaking in Midland, Michigan on July 14th.
I’ll be speaking in Houston, Texas on July 23rd.
I’m still looking for places (Communities, Nursing and Medical Schools, Assisted Living Residents/Communities, Caregivers) to speak.
I’m losing my “drive” and can’t seem to get myself out of my lower gears!
I’m actually watching my short term memory functions deteriorate!
I’m at long last actually working on updating and expanding my own web site (richardtaylorphd.com).
I’m still looking for people to listen to, and to chat with.
Write me at richardtaylorphd@gmail.com
The more we get together the happier we’ll be!
Hello!
And so some one(s) at Harvard has discovered making friends, spending time with other people, giving and receiving love is good for old people. It either causes or reinforces or at least coexists with happy and contented lives, and perhaps better cognitive functions. (Click here to be linked to the article)
Who thinks up these hypotheses? Who could actually believe there was even a chance the “null” hypothesis might be true? We need lots of psycho social research into how to improve the quality of life, relationships, self esteem, and purposefulness of older folks, and/or people exhibiting the symptoms we currently label as dementia. The fact that the media and lots of people who already know this to be true seem to be amazed by their findings is amazing to me.
Of course we need each other, young or old or in between. Of course we are happier when we give and receive love - ourselves to others.
How do we enable people with growing cognitive to continue to participate in this human process? Certainly not putting them aside in an institution (sorry they now call them facilities or communities).
Let’s think deeper (especially you experts at Harvard!) let’s be more creative, let’s stop wasting time confirming the obvious and start looking for what we don’t intuitively know.
Richard
In This Issue
More of Us = Less of Us
Dear Richard - What’s the “Right Thing to Say?”
Beware of the claims of “Know It Alls”
Beware of the claims of “Know It Alls”
“Alzheimer’s Association
Everything you need to know about Alzheimer’s and dementia.”
(This is a Google ad I came across on the Internet)
Hello!
I know this ad is eye catching. I know it gives hope to those who in the moment feel hopeless, and helpless. But it starts the journey on dealing with dementia on the wrong foot. It’s the first brick in a wall of myths, speculations, hopes, and magical thinking. I believe it encourages us to turn away from facing what we need to know and do about ourselves, our purpose, our relationships, and how we will live our lives to the fullest while coping with the symptoms. While the people who write these types of ads and make these types of claims have nothing by the best of intentions, the many unintended consequences of their well meaning efforts to calm and support us do not serve our immediate and longer term needs.
The answers to the fears, the uncertainty, our comfort with ourselves which suddenly turns into a black hole of cosmic proportions when we are told “you have dementia probably of this or that type” are not simply acquiring more information, nor finding someone who “knows everything we need to know”. Facts, drugs, reading books, filling out forms, and taking the knobs off of your stove is not all you need to know nor what you need to know, at least that is what my trial and mostly error past has revealed to me. First, last, and always you need to focus on how you are going to live with the disease, how you are going to be enabled by others who care for you and care about you.
My advice for folks who are newly diagnosed is - go have dinner with someone who has a similar diagnosis as you (and if possible is at a similar stage of the disease as you are). Make sure your caregivers come along. Ask you diagnosing doctor for names. If he/she mumbles something about invading privacy, ask her/him to call first on your behalf. We need to connect, early on with each other.
Everyone wants certainty in their lives, and when it comes to a life shortening medical condition we are especially in need of certainty. There is none, certainty that is, when it comes to most any question about dementia, other than it is. The certainty of the disease comes from within you having to learn to live with its symptoms. The certainty for you and your family is you will (are) changing in ways which no one can fully understand.
No professional, no physician, no Association knows how or why or when or where or how much or how little you will change. Everyone however does know change is and will continue to happen.
Figuring out, working out, how to deal with these changes is a unique experience for you and your caregivers. Lots of people have advice, mostly lots of people who don’t and have never had to deal with these changes. Lots of people aren’t you, or your caregivers. It’s time to talk, to love, to open wider to each other. This process creates the vessel into which you can place all the information everyone is so eager to dump on you. Then you must sort through it and make it your own.
There is no web site, no organization, no individual, and no group who “knows everything you need to know.” No one knows it all because we can’t even agree on what “it” is. No one knows all of what you need to know because no one knows all of you. You and your caregivers need to rework the ways you communicate. You and your caregivers need to become more open to each other. You and your caregivers need to create what you need to know (of course you can consult others, learn from others) and then make it work for you.
It’s not as simple a process as others would lead you to believe. It’s not as easy as you and others want it to be. It is what it is, and it is different for each of us. It requires the support of others, it can benefit from their information, but it in the end all we need to know can only be defined by each of us. Much of what we need we can’t know, in the sense that reading something, listening to someone will give us the knowledge we need to know to solve a problems of ours.
Keep your salt shaker handy when any one, any ones, and especially any organization tells you they know everything you need to know about Alzheimer’s and dementia. This is an individual journey for you. You must form and seek out your own questions and answers. I’m not suggesting you stay away from organizations and professionals who pass themselves off as experts and repositories of information concerning our disease. I am saying look first within, look second to caregivers, look third to others with your symptoms and their caregivers, and look also to “outsiders” who advertise their expertise and answers as being “everything you need to know about your condition, your symptoms, your life and your relationships.
Richard
Links
A new collection of writings from people who have Alzheimer’s and live in Australia:
Listening to the talk of us: People with Dementia Speak out
A new collection of writings from people who have Alzheimer’s and live in Canada:
People with Dementia speak out about their issues
Alzheimer’s Research Forum Summary:
What we know, What we don’t know
Another good source for information and networking:
Fisher Center for Alzheimer’s Research
Memory bridge is learning how to connect at depths never before thought possible with people who have dementia:
Memory Bridge
The best daily updater on Alzheimer’s on the net:
Alzheimer’s Daily News
Richard Taylor, Ph.D.
Alzheimers from the Inside Out, LLC
