Dear Eric: My 30-year-old son is severely physically disabled due to a debilitating muscle disease. He requires 100 percent assistance with all life functions. He does not have any cognitive disabilities, is very intelligent and earned a bachelor’s degree. My husband retired a couple of years ago and is his main caregiver.
People who are likely well-intentioned, ask how he is doing and when we respond that he is doing well despite the progression of his disease and that he handles his very challenging situation with grace and little complaint, they then follow up with questions about what he is doing, does he have plans to work and then oftentimes even start suggesting jobs that he could consider.
These people have no idea the challenges that he faces every day, and my husband and I feel that, as long as he is happy and satisfied, that is all that matters. We try to explain that having a job would create a lot of stress for him and would require my husband to be with him to assist at all times. Additionally, one item that we do not feel the need to share is that if he earned basically any more than minimum wage, he would lose his benefits.
We don’t think that we owe anyone an explanation and despite trying to briefly and kindly respond to their questions, they inevitably continue to press on about the topic.
We appreciate people asking about him but would also appreciate it if they would accept our response and move on to other topics of conversation. How can we reply to these insensitive interrogations without coming across as defensive or angry?
– Done Explaining
Dear Explaining: One option is to offer less in the way of an update. A simple “he’s doing well, thank you,” gives the well-intentioned inquisitor fewer avenues for offering suggestions. Another option is to kindly but firmly remind people that they don’t know what they’re talking about. “Oh, we’ve thought through all of that and more. Trust me, this is exactly where we need to be. We’ve had 30 years of practice navigating this, so we’ve become experts. It would take 30 years to catch you up, and I don’t want to bore you.”
You’re correct that you don’t owe anyone an explanation. So, whichever path you choose, also know that it’s perfectly fine – and not at all defensive – to interrupt a suggestion you never asked for and change the subject.
Dear Eric: My mother and her caretaker came to visit for two days. My mother has
some form of dementia, even though we all feel that at times she plays it up.
My mother never missed an opportunity to hit or slap me as a child and once even broke a wooden fanny wacker over my head, which really enraged her. I think you get the picture.
Anyway, we went to dinner, and she looked at me and said, “Oh look, a stray hair,” and pulled it out of my head! She did not try to move it or let me move it over. It was especially upsetting for me because I have been trying to grow my hair out after I lost it all to chemotherapy.
I have made it clear to her caregiver that I will not be coming to visit her anymore. I feel that she has overstepped my physical integrity, and I get the willies whenever she tries to touch me.
During my last visit with her, there were times that she did not know who I was, and I did not feel safe with her.
Am I wrong after this incident to not want to see her again. Despite everything, I have always been a dutiful daughter, but I just feel that she crossed a line this time that I can’t deal with anymore.
– Hurt Daughter
Dear Daughter: Your mother’s abuse in the past is inexcusable. You don’t have to subject yourself to it in the present. You can and should prioritize keeping yourself emotionally and physically safe. Figure out what boundary feels right. That might mean no more physical contact, only phone calls and video visits. This is not cruel abandonment – she has a caretaker and, from your telling, her past behavior and her present capacity may make in-person meetings dangerous for both of you. Talk to her caretaker about the boundary you’re setting and get the caretaker’s help to continue to support your mother in whatever way feels safe without compromising your own well-being.
I know that this phase of life takes a lot of time and mental energy, but when you do find space, please talk to a therapist, counselor or trusted friend about what you experienced. What happened to you wasn’t right and you didn’t deserve it. You deserve the space and time to process it.
(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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