Dear Eric: My husband and I have been married for 40 years and have maintained a good relationship with his brothers and sisters, as well as all his nieces and nephews.
Within the last year, my husband has been diagnosed with dementia. I have my twin sister and my dad, who live close by. One of my husband’s brothers moved to our area with his girlfriend after he retired. The rest of my husband’s family lives several states away.
Since my husband’s diagnosis, we have not been as active as we used to be. He has trouble visiting with others. He feels it just takes too much out of him.
A couple of his family members have come to town to visit. It took a lot out of him to have them stay with us.
Now I’m getting text messages from several of his family members who want to come visit. They say we see my family but turn them away. I cannot make them understand that my husband is not the same person they remember.
We used to host Christmas Eve for around 25-30 family members. Now, two people over at the same time seems to be more than he can tolerate. Any advice you can give me is greatly appreciated.
—Caught in the Middle
Dear Middle: You’re experiencing something that a lot of caregivers encounter. Not only are you managing life at home and the shifting sands of a new medical reality, but you’re also stuck being the sole communication point for extended family. It’s a lot.
Your husband’s family is having trouble seeing past their own expectations. Even if he wasn’t experiencing the effects of dementia, it’s not reasonable to expect that family members will always be able to host visitors whenever they come to town. It’s different with your sister, of course, because they live nearby.
Hopefully, all of that understanding will come. But right now, work from a place of figuring out what can work instead of what can’t. Share some dementia-related resources with your husband’s family, whether from your healthcare provider, an online source, or a support group (if you’re not in one, I recommend it. You find some options at dementiasociety.org and agingcare.com). This takes some of the burden of education and gatekeeping off of you.
When you share this information, you may always want to make suggestions for ways of engaging that would be more helpful. “As you’ll see in the information we received, my husband’s capacity for some interactions is changing. But we’re finding that [x] kind of visit or interaction has been really meaningful.” Don’t be afraid to clearly redirect with a “yes, but” approach. “Yes, it would be wonderful to see you while you’re in town, but because of the nature of care, we’re not able to host you the way we’d like. How about you stay with another relative and we can do [x]?”
There’s going to be some trial and error here because everyone is on a learning curve. But setting clear expectations and encouraging people to educate themselves, will allow you to focus on the parts of care—for your husband and for yourself—that are most important.
(Send questions to R. Eric Thomas at eric@askingeric.com or P.O. Box 22474, Philadelphia, PA 19110. Follow him on Instagram and sign up for his weekly newsletter at rericthomas.com.)
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