Author Archive

For whom to I speak?

Why do I speak up?

Why do I speak to these issues?

What I want/need beyond room, board, good people who care about me, a safe environment, lots of Heinz Ketchup and an extra long bed

Say hello instead of good bye

A sense of wholeness (half full or empty is the wrong view)

The probability for personal growth and development while declining

Activities vs. purpose

A purpose – activities to fulfill it

Personal responsibility for myself

Enabling/disabling and re-abling

Living in today…a dignified, private and proud sense of myself

Visiting yesterday(s) (Reminiscing is over rated and over used)

Truth telling – reality/validation/change the subject/lies/fibs/half truths

The medical model is neither medical nor a model when applied to PWD

Restarting in the middle of the process is gonna cost everyone a fine

Managers who don’t

True stress reduction for caregivers

Living an ambiguous today and an unknown tomorrow

A few words about your cost, my cost, and regulations

Spend a few more cents on advocacy and a few less on marketing

Stand up! Speak Up! Do not become a victim of your own silence.

Speak for yourself and those who will follow. Ask Carers and Friends
to do the same.
Today will never be here again.

Time is of the Essence!! Use it wisely!!

Tell as many people as possible your
perceptions of your interactions with
professionals, with carers, with friends, with strangers, with your government.

They won’t change unless they know, and
they can’t know unless and until you
SPEAK UP!

Seek to create a Palpable Sense of Change and of Urgency!

Join a Crusade, Now!
Be a Crusader, Now!
Lead a Crusade, Now!

“Aim above morality.
Be not simply good,
Be good for something.”
~Henry David Thoreau

In the eyes of many others, sometimes even the eyes of caregivers, I am seen as less than a complete someone. Just because my memory is failing me, just because a region of my brain is failing, just because I don’t always think like you do, nor do I remember as much or how you do, please, please know that in my own eyes, and I hope your eyes,  I am still a whole and complete someone.  I am still me.  I am still grandpa, and dad, a friend, and whole and a complete human being.  I am in my mind still and have always been a complete person.  I am not becoming any less a person simply because I cannot remember like you, talk you do, or think like you do.   I know many of you want me to be who I was yesterday, or last year, or the last time they saw me, but I cannot be, nor do I any longer want to be.  I have ceased looking back over my shoulder at who I was, and now spend most of my time working on who I am , one day at a time.”

Richard

Patients take action on early Alzheimer’s
USA Today chronicles the life of Richard Taylor, July 24th, 2007

Reaching Out `From the Inside Out’
Claudia Feldman writes about Richard Taylor in the Houston Chronicle, May 15, 2008, 5:30PM

If you suspect, smell, think and/or worry about if you might have the early signs of dementia, mild cognitive decline, Alzheimer’s - and you want a doctor to confirm or deny your suspicions because you hope some doctor or researcher might be able to delay, and/or cure you suspicion -  please consider first applying for long term care insurance before you go to the doctor. Begin this process at least a couple of months before you go to the doctor, so you can apply for three or four long term insurance polices and complete the application process before you go to the doctor. You will probably be rejected by some of them and they won’t tell you why so apply for a bunch of them and then you decide which one(s) you want to accept.

Insurance is a bet. You bet you might get something and need a certain type of insurance. They bet you won’t get it and will just get to keep your premium. Most long term care applications ask if you have ever been told by a physician you have dementia? If you have ever taken any medication for Alzheimer’s or dementia? Just the word “dementia” can be a reason for you to be rejected for this insurance. Just a musing on your chart by your doctor “check to see if he/she may or or may not have some form of dementia” is a reason to scare most all long term care insurers away from you.

In reality they are in business to insure against things that won’t happen, or if they do,  they won’t qualify under your policy. This is not a savings plan for you, this is a profit plan for them. They have figured out ways to insure themselves against the very risks they claim they are protecting you from. They sometimes require that you not be covered for something for which you bought the insurance in the first place.

This is not legal advice. Don’t seek to defraud your prospective insurance agent. However, realize realize they made up the rules. Follow the rules, but wait until you are good and most important ready.

~Richard

A friend of mine is having increasing difficulty getting her loved one to take a shower (I think he is in the mid stages of dementia). Without getting into a deep (and useless) psychological investigation of his early years, I have been asking friends of mine who are living with dementia for ideas on how to enable people with dementia to take their own showers, assisted as needed by a caregivers.

Here are some of our best ideas. Remember these all came from people who are living with the symptoms of dementia:

Arrange for him take a shower while seated on a familiar and chair?  So what if over time the chair gets ruined? Does it really matter?

Encourage him to wear his underwear? If you are helping him you wear yours too.

Ask if he wants to wear his shoes?

Start off with a quick rinse, and work up to a full shower.

Take a cane or walker into the shower, even if he really doesn’t use it all the time?

Put up railings in the shower if it will make you feel safer taking a shower with him.

Ask him to wash you! Tell him you need help showering, too!

Sing in the shower, either to him or with him?

Play favorite songs or music before you get into the shower.

Initiate some form(s) of intimate contact in the shower (that was the most polite way I could come up with for an idea many, many people suggested and probably hoped for in their own showers).

Make up a game about how fast he can shower and time him?

Prepare and eat a snack he likes or drinking something he enjoys while in the shower?

Watching TV or listening to a favorite piece of music while in the shower?

Video tape the two of you taking a shower and show it to him?

I am not the shower expert, these are just some ideas to distract him from whatever it is he fears. My general impression is carers are too focused on us showering-sometimes every day! If it is a medical necessity - we need to wash off fluids and substances we have involuntarily passed - and you cannot do it with a sponge bath in bed, then I guess immediate showers are a necessity. Otherwise - let’s all try to make them more fun and less functional.

~Richard

If only I were a nude mouse I wouldn’t expect anyone to listen to what I had to say about my various symptoms. If only I were a nude mouse I wouldn’t have to engage the symptoms of dementia, except when it came time for me to remember not to get shocked, or which lever to push to eat!

However,  I’m not a nude mouse! I’m a whole person!

With the recent demise of the second in what was hyped to be a pipeline full of new approaches to delay the as yet to be chronicled progress of dementia I’m even more pumped-up about the disproportional attention being paid by the Alzheimer’s Study group to psycho social research (Newt Gingrich and Sandra Day O’Connor, et. al). There seems little interest in including a BIG chunk of ear marked money for psycho social research in the new “National Strategy.”

Would you please offer your .02 cents worth of what the National Strategy for Congress should be/include/fund? And send it to contact@alzstudygrop.org.

~Richard

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 answer, 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

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

Well, last night I had the strangest dream. I dreamed the leaders of the Alzheimer’s Associations, Researchers, Congressional Leaders, and a host of other professionals all sat down and agreed to sit around the table until they came to some consensus on how to lead this Nation through the greatest public health crisis of the first half of the 21st century.

I knew it was a dream because also seated around the table were many, many people living with one or more of the various forms of dementia. Jointly they agreed to the following:

The first priority for investing limited public funds in the battle against dementia is: people with the disease, caregivers, families, research into their psycho social problems, funding caregiver support services,

Then research into finding a cure for the disease, research into finding ways to delay the progression of the disease -

Let’s ALL talk about this before we rush off in this direction or another! Please, please, please!

Richard