I'd like to revisit my post titled "Coping With the Alternate Realities of Dementia Patients," because I received an intense comment from Richard Taylor, author of the exceptional book "Alzheimer's From the Inside Out." Richard Taylor is an educated, intelligent man who is suffering from Alzheimer's Disease. In his book, which I reviewed for OurAlzheimer's, he chronicled his disease in matter-of-fact, yet moving, prose.
Taylor's chapter titles tell his story:
"I Can Read!" "I Can't,"
"My Shirt Is Broken,"
"Am I My Brain? Or Is My Brain Me?"
"Whose Fault Is It That I Don't Understand You?"
"Am I To Be My Spouse's Son?"
Who am I to argue with such a man? I am in awe of him and the way he's chosen to ground himself and help others understand what it's like going through the degenerative process that is Alzheimer's disease.
Because not all readers see the comments made on the SharePosts, I've put Taylor's comments below. I don't want to misrepresent what he is saying by paraphrasing:
"Please don't be so quick to join forces with my disease
Friday, September 7, 2007 at 12:14 AM
As a person in the early stage of dementia I am frightened by advice that encourages caregivers to "validate" the hallucinations of people with dementia. Surely there is some obligation to help me stay in the here and now for those who are anchored in the here and now. Especially on the part of staff and professionals. Family members do me no favors when they completely abandon their knowledge of today in favor of "playing" with me.
I too live in the here and now, a here and now I don't quite understand or appreciate in the way others do, but one which serves me in many ways. Please at least offer me reality before you jump into my disease with me. You don't have to argue with me about who is and is not right. We can agree to disagree, but shouldn't you at least try to help be all I am able to be for as long as I am able to be it. Don't you risk hastening the moment I lose complete touch with reality when you validate the parts of me which aren't real, but are real to me? What about my moments of lucidity? What happens to them? How do I figure them out when you are promoting another world. Don't be so quick with your validation. Please."
What Taylor's response does for me is remind me how each of us is an individual and we hope our families will know us well enough to give us the kind of care we need. Taylor has made it plain to his family (and us) that he doesn't want his caregiver to join him in the new world forming in his brain. He wants them to ground him in the here and now.
In "Alzheimer's From the Inside Out," Taylor eloquently let's caregiver's know that they aren't him and don't know what he wants. He also takes a stab at understanding that caregivers are doing their best to "guess" what he wants. He knows that there will never truly be understanding between the two.
My dad didn't have Alzheimer's Disease. His dementia was surgically induced and instant. We, as a family, were thrown into deep water without any gradual "learning to swim." As we gradually absorbed the fact that we'd never have Dad back the way he was, we frantically searched for techniques that would help him.
At first, when Dad insisted on having wads of money to tip everyone in the nursing home (and talking to him rationally simply made him angry), my mother tried giving him play money. I didn't think that would work, and it didn't, but she was doing her best. Dad knew what it was and felt humiliated. I cried. I finally came up with the idea of making him business cards, and, with work, convinced him that if he gave people his card with his name on it, they would add the tips to his tab. He was usually okay with that.
Dad, like Richard Taylor, was intelligent and educated (though not to the point of a Ph.D., as is Taylor). He wasn't easy to "fool," but he also could not be rational. He was in horrible mental, physical and emotional pain. All we wanted to do was put him at ease. "Grounding him in reality" didn't work. So, we had to punt.
One thing about most dementias is that there are unpredictable moments of clarity. The person can suddenly seem to be "themselves." Dad and I had a few of those moments, which are some of my most closely held treasures.
He looked at me, one day, and said, "My universe has gotten so small."
Once he said, "I think I just dream up problems to have something to do." I cried and held him and hugged him, as he slipped back into his demented state. I didn't want to let him go, but he slid away, anyway.
Another time, he looked at me, as he would have years before, and thanked me for "going to so much trouble to give him something to live for."
Yet, if I'd asked Dad before the dementia, he's have told me not to "play games" with him. I'm very sure of that. He would have said to ground him. To bring him back to reality. He had no way of knowing that one day, "grounding him in reality" would no longer be possible.
It would be so nice if there were a game plan for dementia patients and their caregivers:
For the first stage, which lasts exactly this long, you handle it this way.
For the second stage, which lasts exactly this long, you handle it this way.
And for the third stage, which lasts exactly this long, you handle it this way.
And so on...
Unfortunately, to my knowledge, there is no such game plan. We're human beings trying to help human beings cope with an inhumane disease. We will have our triumphs and our failures. Rest assured that even in our failures, we mean our best. We care for you with love.
Published On: September 13, 2007