Why I Don’t Tell
Sep 4 2012 in G-J's Blog by G-J
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!
Bette said on September 5, 2012
Hi G-J,
It’s interesting what people feel as though they need to talk about.
Sorry for all that was talked about – ahead of you. So nice of you to walk with this lady though – and for your understanding and looking for the positive… She’s a lucky neighbor (:
Kathy said on September 5, 2012
Ahh G-J,
I love how you look for the positive , giggle
It’s always so hard to know what to share. At the beginning of our journey I didn’t tell anyone other than very immediate family. I let everyone decide for themselves if Hubby had a problem then gave honest but short answers ONLY if they asked. Some people had picked up enough in his behaviors and actions that I was asked if he had a stroke. I think it was shortly after that I started talking more and educating.
There’s still a long way to go yet, even with some family , sigh.
Denise said on September 5, 2012
Ooohhhh…. How frustrating! I don’t like my story to be passed around, so understand why you don’t tell.
I suppose we should find another silver lining, that Mrs. S shared the news with an intent to help. (How the gossip helps I don’t know, but I’m doing my best to give her the benefit of the doubt.)
Did you talk to Steve about what happened?
ejourneys said on September 5, 2012
G-J, I can relate!
Cognitive dysfunction can be a mystery to doctors — so much more so, then, to laypeople. And there is so much fear surrounding the loss of mental capacity, both in general and especially as one undergoes that loss. I think that’s why my partner holds so tightly onto her “brain surgery” theory, so that she can point to black-and-white causality for her loss of functionality.
Another misunderstanding is that people confuse cognition with intelligence. One can be very intelligent and still have cognitive difficulties. That misunderstanding only adds to the stigma. Not to mention “showtime,” when our carees look “okay.”
There’s just so much that seems counter-intuitive, that needs explaining — plus carees who want to function well, sometimes beyond their means to do so. It becomes frustrating and confusing.
I have a selfish desire that you and Steve don’t end up on the cutting room floor.
I am thrilled that he is willing to speak on camera and educate others. My silver lining to Mrs. S’s gossip is that maybe it can become a teachable moment.
More work for you, of course. My partner calls that sort of thing, “My mom can drive!”
Within every disability lie extraordinary strengths that I think often go unrecognized. It’s a tricky balance to present both, and I think stigma arises when people see only the disability. One is allowed to be strong, too! I think that’s why individual stories are so important — and at the same time I understand very well why they can be so hard to tell, between the caree’s perspective and the perspectives of people who are not “in the life.”