I have learned that people with anything that falls under the dementia umbrella travel in pairs. It is always the caregiver and the caree, so when I refer to being in a group of people, half of them are caregivers and half of them are carees.
Whenever we are in a group of people with dementia, or even with another couple, the talk always turns to how much has been shared with other people. It’s a pretty even split between the people who tell everyone they know and the people who don’t share the information. We have always fallen into the group that do not necessarily share the information. That might sound odd coming from a couple that will be on a panel discussion for the second time, who will soon be interviewed by a local TV station (we’re still convinced we’ll end up on the cutting room floor), and who speak at Alzheimer’s Association workshops. When we share our story in these situations, we don’t know the audience personally. They are there because they are medical professionals or are family or professional caregivers for a person with dementia who want to learn from our story.
In the beginning Steve wanted our story told on a “need to know” basis only. We did differ about the meaning of “need to know” but I was very, very careful about who I told. Lately I have told more people. It’s true that we don’t have anything to hide either and we shouldn’t be ashamed by something over which we’ve had no control. Michael J. Fox has said there is a stigma with Parkinson’s, and Lance Armstrong has said there is a stigma with cancer. We’re not the only people who feel there is a stigma about their disease. It really isn’t our job to change the world’s perception of Alzheimer’s.
Those who tell their story to everyone they have ever met always want to know why we haven’t told people. Interestingly, the people who keep quiet about their situation never ask the others who they tell everyone. I guess it’s because the tellers always say, “I have nothing to hide.” Well, I don’t either, but I’d rather be selective with our information. Not everyone treats the information kindly.
In July I participated in our city’s 5K walk. While our son ran the 5K, I walked with one of our neighbors, Mrs. S. Since she doesn’t walk fast, it took over an hour. For over an hour we did what women do and we talked and talked. During our conversation I told Mrs. S about Steve. She was nice and said I could knock on her door at any time, even the middle of the night. I didn’t think any more about having told our story and I didn’t tell Steve that the neighbor now knew.
The following week, I was at a neighborhood meeting at the elementary school. At the end of the meeting, Mrs. B said she’d walk home with me. We no sooner dropped one neighbor at his house when Mrs. B said, “What’s going on with Steve?” I believe my eloquent reply was, “Uh, um, his health?” “Well of course! What else would I be asking about?” Well how the heck should I know? I didn’t think there was any reason she’d be asking about Steve’s health!
Having been asked about Steve, I gave honest information and answers. When I said he was stable and doing well right now, her reply was, “Oh, well, he’s fine, then.” “Uh, no, there is still definitely something wrong with him.” About now I was thinking that THIS is why I don’t tell people. Then came the icing on the cake, “You had to KNOW that Mrs. S would tell me when you told her.” Uh, no, why in the world would I KNOW or even suspect that? “She came right over and told me.” Lovely.
My thoughts about this have included:
- Who else knows?
- How factual is the information being spread?
- Who has Mrs. B now told?
I really don’t care who knows, but I feel like this was our information to tell, not theirs.
On the positive side, if I ever want information spread, I know who to tell!