Some Thoughts From A Person With Dementia

One of my goals for this blog is to help dementia patients, caregivers and concerned laypersons participate in and contribute to dementia research and treatment. DASN International (Dementia Support and Advocacy Network) is an organization working towards that goal. One of their members, Richard Taylor, gave a talk at the Alzheimer’s Disease International conference held in Berlin last week.

Richard Taylor, Ph.D.

A retired psychologist, Richard was diagnosed three years ago with dementia. As part of his advocacy work, he’s written a book called Alzheimer's from the Inside Out. With his permission, I’ve posted portions of the talk he gave at last week’s conference here:

Guten Tag

My name is Richard Taylor. Four years ago my daughter leaned over the back seat of our car and whispered to my wife, “there is something wrong with Dad.” One year later we all found out what that something was: I have dementia, probably of the Alzheimer’s type.

Since then I have become an advocate for the rights and responsibilities of people with dementia. Being a former psychologist I think about thinking a lot. Probably too much. I have developed my own views of Alzheimer’s from the Inside Out.

I don’t drive any more. I don’t handle the family finances any more. I go out only when someone will take me with them. I feel as if I am turning invisible quicker than my mind is turning away from me.

I would like to briefly speak to you today on what has happened and is happening with my communication with my family. How it has changed. How I think it changes in most of us who are living with Dr. Alzheimer’s and his stick footed supporters living between our respective ears. And finally what I would do different if I could, what you might consider doing different instead of simply trying harder.

******************
How does it happen? What did I miss? Why can’t we talk? Why can’t we resolve our differences, solve our problems: like we did before Dr. Alzheimer invited himself into my brain?

Couples invest themselves in each other. They trust each other with their feelings, their vulnerabilities, their fears, their secrets, their dreams….

Enter Dr. Alzheimer. “You are going to die. You are going to die sooner than either of you expected. You are going to become unpredictable, different, some one who will be different from the person you are now. You might even become violent. You will probably not recognize those you presently know and love.” announces the Doctor as the diagnosis is pronounced.

“Oh, oh. What have I gotten myself and you into?” ponder both of us. “Can I take care of you? Who will take care of me? Can we afford you? Can we afford me? Who will be my best friend? Will I ever have a best friend again? Who will listen to me when I am upset, angry, and afraid? Who will listen to me drone on and on about God knows what? Who will hold me as only you do? Who will ever want to make love to me again?” The questions pop up to our level of awareness only to quickly sink back down into a cave (somewhere between our respective ears) full of the fears for each other and ourselves.

Deep into the night, these fears morph into nightmares. In the bright light of day, these fears transform even simple conversations into arguments that in the end have little to do with where the conversation started or ended.

“I can’t trust you any more; you are leaving me emotionally naked, emotionally stranded. I can’t trust you any more, you are leaving me,” we say to each other, but never using these brutally accurate words.

“You have already changed. You have already changed.” we whisper to ourselves about the other one.

“I can never trust you; the disease has caused you to break your promise to me to take care of me forever. I can never trust you, and the disease and/or I have caused me to become untrustworthy. I know that and cannot seem to do anything about it in your eyes. You are still the person I love, and I so strongly (desperately) want that to be so forever or at least for as long as humanly possible.”

Who helps couples deal with these issues? Who spends the time with couples exploring their emotional entanglements? The sticky clumps of fear for ourselves, each other, and the future take up just as much room in our brains as do clumps of sticky dead cells. The only difference being one can be seen with a million dollar scanner and the other can only be felt through a human heart.

How can we and others improve our communication, given this fine mess, we and Dr. Alzheimer have created for each of us and both of us?

Surprise, surprise. I have no easy or simple answers. I am a participant and not an observer in the interpersonal quagmire created by the disease. I and my spouse are not alone. There are at least one million couples in the United States in the same stage and in the same boat as my spouse and I. There are millions and millions more around the world, many I am sure from each of your countries. We pretty much hid our fears from each other at the start. We pretty much convinced our selves there were no fears to hide at the start.

I am frankly suspicious of others who say the diagnosis has no current impact on them. Who can hear the words “you have dementia, probably of the Alzheimer’s type,” then turn around, and resume their lives as before. In my view, they are standing in their own self-constructed invisible closet, and will stay there until the odor of their disorder cannot be ignored.

We were wrong, and so are most of the other couples and even families I have spoken with who are confronted with the disease. We became silent partners, a silent family. “We can talk about it when we need to” we said to ourselves and each other.”

Professionals, especially physicians do not seem to want consider our presenting problem, we hurt emotionally. Our fears are consuming us. There is no pill of it. Counselors pass us off to each other because they claim they are “unfamiliar with the disease.”

Can’t we have a conference about us, with us, for us? About the real problems we all face from the day we hear the diagnosis. It’s great to talk about proteins, and nude mice, and pills and profits, but what about us: those of us living with the disease. Must you always squeeze us together in a program with no time to explore our issues. We have real problems, real to us. Problems which others could help us solve if they would take the time to understand each of us.

We are worth your time and effort to understand how the disease affects our emotions, our feelings. We need your help to develop better communication models that change as the disease changes our family dynamics and us. Do not give up on my mental health simply because eventually I will end up mute and bent over in a wheel chair, waiting to die.

Psychosocial research does not have the glitz or profit of pure research, but it sure is need. It will be needed more next year than this year, and so on and so on.

I better understand what has happened as a result of writing this presentation. Thus far, I am no better at changing it.

Help, Please. Help 500,000 souls in the U.S.A. and millions and millions of us around the world.

[Note: the 500,000 people Richard talks about are Americans with early onset dementia. There are an estimated 4.5 million Americans with Alzheimer's disease, and an estimated 24 million worldwide. Mona]

Comments

[Mike]

Hearing from a psychologist who has Alzheimer's promises to be interesting. I wish he had talked more about the day to day experience rather than the questions and issues of advocacy. I guess I need to buy his book.

[Gail Rae Hudson]

Whoa...well, I'm grateful to this man. The only other writing I know about by someone diagnosed with Alzheimer's is "Living in the Labyrinth". Provocative post. Thank you, too, Mona.

[Mona Johnson]

There are several books written by people with dementia. Two that I have on my list to check out (besides Richard's book) are Dancing with Dementia: My Story of Living Positively With Dementia (by Christine Bryden) and Just Love Me: My Life Turned Upside-Down By Alzheimer's (by Jeanne Lee). Both are available on Amazon.com.

[Gail Rae Hudson]

Just wanted you to know that I checked back in and was pleased that you'd responded. Thanks for the information, Mona. I've just bookmarked this post as a note to myself.

[Paula]

Mona - This is so powerful, it really blew me away. Thank you for posting it.

[Richard Taylor]

One thing we know for sure, and that is we don't know anything for sure, research wise that is. Another thing we know for sure is, this disease creates turmoil in 99.9% of the families who are dealing with it.While "bench" researchers run around chasing their molecular tails, people who are living with the disease as carers and carriers battle with themselves and each other.

When will more attention be paid to this real problem and less to the conditions of nude mice? I realize both areas need research, lots of research. In the mean time millions of people are struggling with the psycho-social consequences of the disease.

The vision of a world without Alzheimer's is compelling. Shouldn't the cries for help from people confronting it be just as compelling? There needs to be a more equitable split in research dollars between tomorrow's and today's issues.

Richard Taylor, Phd
Living with the disease for five years!

[Peter Berger, Alzheimer's Weekly]

Dear Mr. Taylor,

I was very moved by your most recent "Hello" letter that appeared on a number of web sites. I would like to run it with your permission on our site under the title, "Advice 101: Say Hello to Each Day". It would be a meaningful addition to our "Fight the Fight" section.

Please let me know if this would be OK. Thanks and keep up the writing! It is a big lift to many many people.

Yours,

Peter Berger
Editor
AlzheimersWeekly.com

[diana]

Richard, Your writings are so valuable to me. My husband who I love dearly was diagnosed 2 years ago at age 56. My adult son said the same thing as your child. I didnt see it. He was a prof.of Mech Eng. Taught a very difficult couse. Thermodynamics. The way Mr. A. is affecting his brain has left him unable to express his feelings much. He doesnt understand what has happened . He thinks he is fine and knows something is wrong at the same time. You have helped me understand his feeling in ways he cant express.Because of this I can love and understand him better. Thank you. Diana

[Bettina Hackel]

Hello from Switzerland!
Why did I miss this while still in Florida - South and Central - for ten years with my husband and Mr. Alzheimer as our unwanted guest.

I kept my husband Alex at home with me and our pets until he needed hospital care, that was only for the last about two months of his life. Hospital and Hospice care were excellent.

Alex seemed to be quite fine with the situation as long as I was around. He felt loved, pampered and safe, I think. He always knew who I was, and he trusted me.

BUT: had I knew and read at the time about Richard Taylor and his book - I think it is worth the whole shelf of books I've collected over the years.

Alex has peacefully passed away in Mai 2008. I still need to be comforted and understood and supported for what we went through. Finally, back in Switzerland for 2 years, I "found" Richard Taylor and his intelligent, wise, heartbraking, funny and kind words and writings. Although too late for Alex - he's at least my hero now.

Please, check out his book, his website, his newsletters - even if you still think, Dr. Alzheimer is none of your business!

Tina, Berne (Switzerland)

[Kim Benoit]

Dear Mr. Taylor,
I am sorry this is happening to you. Your writings on this site are very valuable to me, in that it helps me understand what my mom (now 80) is feeling, and what she has been going through for the passed maybe five or more years now. I am aware of the confusion and the struggle that must be going on inside of a person with Mr. A. and now I can truly appreciate what mom is feeling.
You are very brave for taking this on, the writings, and I intend to buy your book. If this has happened to you, a very educated man, who has continued to use your brain extensively throughout your line of work, I am left to feel that this disease has no mercy and will attack anyone, anytime. Thank you for your writings, your blog and may God bless you for your work. Your insight is invaluable to me.
Kim in Ontario, Canada