One of the rudest awakenings that people with mild cognitive impairment get is when they discover how unsympathetic society is to their condition.
I’ve talked about this quite a bit. It’s kind of shocking how thoughtless and unsupportive people can be when they find out you have MCI.
What hurts most is when that lack of support comes from your own family.
But what hurts most is when that lack of support comes from your own family. And that’s what my special guest wants to talk about today.
Hi, I’m Tony Dearing, of GoCogno.com, the website for people with mild cognitive impairment.
I belong to a private Facebook group for people with MCI, and here’s what someone posted the other day . They asked: “Has anyone here had no support from family members, and if so how have you handled it? I am finding it really hard, and feel that it is affecting our relationship.”
It touched off quite a conversation, because it’s something so many people with MCI experience.
It just so happens, shortly before that, I did a Facebook Live with Cheryl Freed, who is a Family Coach at Kemper Cognitive Wellness, and she addressed this very issue. I thought she offered helpful insights, and I want to share those with you today. Here’s transcript from that conversation with Cheryl:
Tony Dearing: I often hear from people with MCI who say my family just really doesn’t understand what I’m dealing with here. There’s not very supportive. They’re dismissive. Or just not understanding and I need help and support from them that I’m not getting. I know you see that in families so what are some of the ways you help families where the person with the memory problem is experiencing that?
Nobody wants to see their spouse change. Nobody wants to think about how that’s going to impact their life.
Cheryl Freed: Yeah, I think just talking about it and just allowing people to have feelings. I’m a family coach at Kemper Cognitive Wellness and most of the people I’m working with are spouses, because just think, by this time you’ve probably been married for 40, 50 years and you guys have this wonderful relationship and you know what things mean and you like everything to be the same. And how hard is it for the person — they don’t want to admit there’s a problem because that’s going to change their life, too?
Nobody wants to see their spouse change. Nobody wants to think about how that’s going to impact their life. But for better or worse, here we are. We have to figure out a new way to communicate but allow each other to have those feelings.
And the spouses also have to allow the person with MCI to have those feelings too. Again, no one is more frustrated that they can’t remember or that they’ve lost chunks of time. So just having honest conversations with each other instead of pretending it’s not happening. I think lot of times we get ourselves in trouble, and we get more frustrated, because we don’t want to say that it’s actually happening. So we either get angry about it or we just ignore it.
Because I just think honesty is the best thing and to have a conversation about it and keep working on it and telling each other when you feel bad about it and you’re hurt by it, and figure out what you’re going to do next time. My aunt and uncle call it a do-over. If you get into a tough situation, they’ll just say, “OK, do-over.” And everyone has to forget what just happened. And let’s just move on and what are we going to do differently? I like that whole concept.
Tony: In terms of how the family may be responding, could it be rather than a lack of sympathy or sensitivity, maybe some denial? Like women with MCI, like the family still wants them to do the Thanksgiving dinner. But Mom, you always do the Thanksgiving dinner. Do the Thanksgiving dinner. What kind of a role does denial have to do with this?
There is hope. There are things we can do. So we don’t always have to make that a bad thing.
Cheryl: I’m so glad you brought that up. It has everything to do with it. You really are going through the whole grieving stages. Anger. Denial. I don’t even want to think about it. And then hopefully you get to acceptances and you get to that sooner than later for both parties.
There is hope. There are things we can do. So we don’t always have to make that a bad thing. I do believe we can live well with MCI. I do believe there are things we can do to feel better. And I love that you brought up the Thanksgiving dinner, because that’s a classic example of, I may not be able to do the whole Thanksgiving dinner, but I surely can help with something.
I mean, it is a lot to put together a Thanksgiving dinner, from the shopping to the cooking to the decorating to, you know. who’s coming, guest lists, RSVPs, and does everything have to be that complicated anymore? And you can do a lot of different things. Maybe we all still get together but we order food. Maybe some of the kids start having it.
For the first time in my adult life, my youngest daughter is having Easter. It’s an evolution that’s probably meant to be. She needs to learn how to do it. It’s just part of transitioning through the generations and I can do my parts and I can still be helpful, and what a relief and less stress it is on me. I notice every year it was getting harder and harder for me to do it. I wanted to do it, but we figured out how to do it and we all just changed it up a little bit so we can all be happier doing it.
Tony: Thanks to Cheryl for sharing those insights, and thank you for joining me today. I’ll see you again next week. Until then, be kind to your mind.