I’ve been hesitating to write this post because I wasn’t sure it would be helpful. You know that person who is more than willing to point out problems but has no suggestions on how to fix them? Well, that’s me today.
I’m going to tell you something you already know…that dementia can drive away your friends.
Women with dementia tell me this all the time. They are in the early stages of dementia. They are living at home. They are able and willing to go out to lunch. To go to movies. To meet for coffee. To enjoy a morning walk with companions. To go to one of those places where you drink wine while you paint. To do things they have enjoyed doing for many years. And their friends disappear.
Maybe men feel this way as well. In fact, I’m sure many of them do. However, no man has ever told me that dementia stole his friends. Yet, women tell me all the time. I’ll leave you to figure that one out.
Perhaps I should write a separate blog post for friends. I could tell them how to continue to be a friend to someone living with dementia. But this isn’t that blog post.
This post is for those of you who live with dementia and your care partners who sit around and ask “Where the hell did everyone go?”
I don’t have an answer. And I won’t make excuses for them.
Maybe they don’t know what to say. Perhaps they worry about their own vulnerability to dementia when they see you. There’s the possibility that they don’t understand those living with dementia are capable of social interaction. I won’t explain their reasons for disappearing. You’d have to ask them.
But this isn’t about them. I can’t change their behavior. This is about you. Some things are just out of our control, right? And maybe those friends who just seem to migrate to some foreign land when they hear the “d” word (and I don’t mean Dallas or divorce) aren’t ours to control.
What I want to tell you is this…you need new friends.
Seriously. I’m not going to say those people who were disappeared weren’t real friends. Maybe they were…but they can’t handle what you’re going through now…so appreciate what they’ve contributed to your life and move on. Not every friend is a forever friend.
Perhaps, if you’re lucky, some new people step up to the plate in your life. Often it’s people you didn’t expect to be there who suddenly become your “go-to” supports. Don’t fight it. Allow those new people to step in. Allow those old people to step out. Focus on the new people. Forget about the old people.
I know it’s not that easy. I have close friends who would break my heart if they ever disappeared. I’m not minimizing your pain here. You get to mourn when you lose friends. You are allowed to miss them. But don’t let their disappearing act distract you from the people who step in.
Maybe you make new connections in a support group. Perhaps you have an acquaintance who keeps showing up and showing up, until you realize they are a friend. It could be a former or current co-worker, someone you meet on a dementia message board, a friendly neighbor. Anyone who steps up and cares.
I know several people who stopped going to church because their friends at church (to quote one woman) “just didn’t know what to do with me.” This points to the importance of educating church leadership and congregations on dementia, which is another blog post entirely.
I know a woman who was no longer notified of “girls’ coffee” dates with her best friends after being diagnosed with Alzheimer’s. She was confused because she had been there last week drinking her overpriced cappuccino and all was well. She eventually accepted that, one week after diagnosis, they saw her as an entirely different person. She soon noticed that they would hustle down another aisle to avoid her at the grocery store.
“I haven’t seen those fat old ladies move that fast in decades,” she said. “Apparently I’ve got the damn Bubonic plague.”
I could forgive her snarkiness given the circumstances.
You cannot control others’ reactions to you. Sure, you can try to educate them. You can forward them resources. You can keep calling and texting. You can attempt to prove, as many of you do, that you are the same person you were before.
You can even chase them down at the grocery store when they run away—actually, if you do this, let me know what happens. I would love to hear about.
I know someone with dementia who says the real tragedy isn’t that she has dementia…it’s how people react to her having dementia.
All I can say is I’m sorry. I’d be sad if my friends ran away, too.