Several years ago, I was sitting with a group of individuals who had recently been diagnosed with Alzheimer’s. I don’t spend a lot of time with people in the early stages of the disease. Many of the people with Alzheimer’s that I talk to are past the point where they are able to tell me what it’s like to have Alzheimer’s. Although I had been to many caregiver support groups, this was the first time I had been at a support group for individuals who had been diagnosed.
The group was talking about fears. Although Alzheimer’s is a terminal disease, no one mentioned death or dying. No one talked about the anxiety and depression that often accompany Alzheimer’s. Surprisingly, several participants said that their biggest fears were actually related to having limited financial resources for care.
One man, who was still able to drive, was terrified of losing his driver’s license. If he lost his license, he’d have to depend on other people for transportation and he knew it would be difficult for him to ask for rides. A woman in her late 40’s was scared of how her children would negotiate the loss of their mother as the disease progressed. She worried they would feel burdened taking care of her when they should be establishing their careers and starting families.
Then there was a quiet woman, who had not yet spoken much, who told us about her biggest fear. Her biggest fear was forgetting her manners. She feared being in a nursing home and having someone care for her–but not being able to thank them for their help. She worried the basics of etiquette might escape her. Maybe she’d start interrupting people or chewing with her mouth open. If she needed help, she worried she’d ask for it in a rude or demanding way. She was frightened she’d be unable to be polite as the disease progressed.
Maybe this is an obvious point, but it hadn’t hit me until that day. And it goes beyond Alzheimer’s. What we fear losing the most is dependent on how we define ourselves.
The man who was afraid of losing his driver’s license? He had always defined himself as independent. He clung to that. The woman who worried about burdening her children? Being a mom was an important part of her identity. And a good mom launches her kids out in the world to develop successful careers and happy, healthy families. And the lady who worried about losing her manners? She had always aimed to be a poised, polite, kind, and gracious person. Since she was a child, people had complimented her on her manners. That was just who she was.
We all have traits and roles by which we define ourselves. Ask yourself “Who am I?” Then think about the possibility of losing the things that make you who you are. This is why retirement is a struggle for some individuals. Sometimes we lose a part of our identity that we’ve really valued. Who are we if we are not a plumber, a nurse, or a college professor? It may take a while to figure that out.
A few years ago, I had a knee injury. Obviously, the type of loss created by such an injury cannot be compared to dementia, but it did threaten a part of my identity. I am a dedicated and motivated (although not fast) distance runner. I have done two marathons and over 20 half-marathons.
It’s not about winning races. (To be honest, I have won a few 5ks in my age group, but that only happens when I am the only woman 30-39 who shows up without a jog stroller to push. This has actually been the case in a couple very small local races.) It’s about being a runner. Who am I? Among other things, I am a runner. I don’t need to post every run I do to Facebook. I realize that the world doesn’t care if I ran 5.63 or 5.69 miles today or if my pace was over or under a ten-minute mile. But I get out and get my run done. I didn’t realize this was such an integral part of my self-definition until I was faced with letting it go. Fortunately, I had surgery and am back out on the roads. (Sorry to all the female runners pushing jog strollers–I’m back!)
Who am I? In no particular order, I’m a wife, daughter, friend, college professor, Alzheimer’s awareness advocate, runner, public speaker, and fitness instructor. What if I were faced with losing these parts of my identity? What if I couldn’t do the things that I think make me…well…me? I’d like to think I could redefine myself, but it’s not that easy–especially when you’re not doing it by choice.
There are plenty of people who live well with dementia, particularly in the early stages. They may do many of the things that they used to do. They fulfill many of the roles they’ve always fulfilled. But what we miss from the outside is that they must let go of parts of themselves from the time they begin showing symptoms. A golfer can no longer golf. A cook can no longer cook. A writer can no longer write.
These may seem like small things in the big picture, but they are not. Golf, cooking, writing…these are things that make us who we are. If you’re a golfer who can no longer golf, people tell you to find a new hobby…a new way to spend your time. But you’re a golfer. And you get to grieve the loss of that part of your identity. And you get to tell people to be quiet when they keep telling you that you can find other hobbies and that not being able to golf is no big deal. It’s not just a hobby. It’s part of who you are.
The woman who was worried about forgetting her manners? The support group facilitator told her it was okay if she forgot her manners. He said that if she didn’t thank people who took care of her, it was understandable. He told her that it didn’t really matter if she interrupted people or if she chewed with her mouth full.
“It may be okay with other people if I lose my manners,” she responded. “But it is not okay with me.”
We don’t get to tell people with dementia that these potential losses don’t matter. They do matter.