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So the PWiD who wants to deal with all of this must jumpstart the communication process. Here are some of the things I have done, following theory in such books as Ambiguous Loss and Clinical Dimensions of Anticipatory Mourning.

First, is dementia the primary issue to talk about? Is it the biggest elephant in the living room? Suppose your loved one has a drinking problem and you feel that’s the primary issue, then you could educate about dementia but only as background information, rather than as something you want currently responded to.

I find it helpful to have a formal season for communicating. In Jewish tradition, the month before the High Holidays is a particular time for soul searching and reviewing heavy issues. Written communication is a good way to introduce complex and heavy material.

I sent one of my children Ambiguous Loss and an overview of what my life with Alzheimer’s is like. The book stresses that the first step in moving on from frozen grief is education rather than emoting.

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This workshop will be a place for PWiDs and TABs to build bridges of communication about what it’s like to be a PWiD who neither covers up nor gives up.

I’ll start by saying a little about what I’m up against, how I cope with it, and what the rest of my life is like.

Cary Henderson’s Partial View: An Alzheimer’s Journal shows, especially in its vivid photos of the victim, what I’m up against. On the surface I don’t act like Cary, but I identify with his inner slowness and sadness.

I’d feel that resources for coping vary a lot with the individual. One of mine is Viktor Frankl’s Man’s Search for Meaning, on how he survived Auschwitz.

It’s important to have a side of one’s life that has nothing to do with dementia. For example, I relearned to play the soprano recorder. Although my memory and attention were impaired, I was pleased to find my sense of intonation and texture were heightened. Musically, I lived more in the “now.”

And as for continuity and growth in my life, I used be a sociology professor teaching Interpersonal Relations, and here I still am.

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This concludes my introduction. During the rest of this workshop I’d like TABs to ask questions about what it’s like and for us PWiDs to answer them. Bear in mind that it’s somewhat different for each of us. We’ll be explaining to you what it's like, but even more important, mutually exploring the communication process between TABs and PWiDs who may feel like they are living in a science fiction fantasy or Twilight Zone.

Here’s an example of what I think is a good question: Someone once asked a PWiD if she felt foggy all the time. I would say that three years ago I often felt a sort of fog, but now it’s like I’ve become used to it and hardly notice it. It’s as if a person who developed tunnel vision would at first be disturbingly conscious of what he doesn’t see, but then takes his deficit for granted except in unusual situations.

Before proceeding, could the other PWiDs present today stand up and say a few words about themselves.

Now let’s go on to questions from the TABs here.

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