Elaine will ramble on about Alzheimer’s and dementia. She’ll probably make you do some group activities and partner things, so if you don’t like stuff like that, you’ll curse her under your breath. Oh, and she’ll tell some jokes. They won’t always be funny, but people are nice so they usually laugh anyway.
There’s a risk in associating humor and dementia that I cannot deny. I don’t want people to think dementia itself is funny. As a society, we do have a challenge in getting people to understand that dementia isn’t just about forgetting in old age. It’s so much more than that. The memory loss, as I often say, isn’t the worst part for many individuals and families. Alzheimer’s and related dementia diagnoses are serious and life-altering, but funny things do happen along the way. It’s okay to laugh when those funny things happen.
First of all, my apologies to subscribers who just received a blog post draft before it was ready to be posted. WordPress makes it easy to post when you don’t intend to. I’ve done it a handful of times since I started this blog, and I always beat myself up about it unnecessarily for days. […]
My point is that even in the best of circumstances going to the gynecologist is no picnic. And going to the gynecologist isn’t the best of circumstances if you have dementia. It’s anxiety-provoking for most women. It can hell for women with dementia.
People with dementia are often perceived as not trying when in fact they are working extremely hard. The dementia brain must work constantly to make sense of the world. It is struggling to interpret one’s environment in the way that the non-dementia brain might struggle to understand a calculus problem when one never took a calculus class.
You see, Drew lives with cystic fibrosis, a disease that now has a median survival rate of about 40. My chats with her have made me realize she has a similar challenge to some of my friends living with dementia. How do you enjoy today when you know tomorrow, or the day after, or the day after that, could mean a progression of your disease? How do you live, really live, when you know your “good days” might be limited?
You see, I’m not concerned about them. I’m concerned about you. They may never understand your diagnosis. And I don’t want their ignorance to negatively impact your quality of life. You’ve got enough challenges to navigate. It is not your job to explain your symptoms to them. You have nothing to prove to them. You and your care partner must make choices in your own best interest. If they don’t get it, then they don’t get it. If they call you a diva behind your back (or even to your face), let them. You have limited time and energy. Do not spend it explaining yourself to them.