Naming abuse, intentional or not, in caregiver-patient relationships
We can love someone with a brain disease while protecting our own hearts
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Not long ago, I listened to a therapist who works closely with caregiver spouses say something that stopped me cold. Whether the person who is diagnosed means to or not, she explained, the spouse caring for them can sometimes end up in a relationship that has become emotionally abusive. She wasn’t describing one marriage or pointing a finger at anyone. She was naming a pattern she sees again and again in the people she counsels, and I think it’s a pattern that deserves to be talked about honestly.
I want to be careful here, because this is tender ground. My husband, Rhead, was diagnosed with progressive multiple sclerosis (MS) in 2019, and his symptoms are primarily cognitive and emotional rather than physical. He is not a cruel man, and nothing I write is meant to suggest otherwise. What I’m describing isn’t about character or intent. It’s about what a brain disease can do, and what it can quietly cost the person standing closest to it.
MS is not only a disease of the body. Because it can damage the brain and nervous system, it can affect a person’s mood, patience, and personality. Multiple Sclerosis News Today explains how MS affects mental health, and former columnist Debi Wilson has written candidly about the personality and emotional swings the disease can bring. This isn’t unique to MS, either. Organizations like AARP openly discuss how illness can lead to verbal and emotional outbursts directed at caregivers, and how real the toll of that can be, even when the person is not in control of it.
Here is the part that’s hard to say. It is so often the person the patient loves most, the one who usually becomes the caregiver, who ends up on the receiving end of the hardest days. When you’re frightened and grieving the life you used to have, the safest place to put that fear is on the person who isn’t going anywhere. So the caregiver absorbs it, again and again, extending grace because they can see the illness behind the words. And that grace is good and loving. But somewhere in all that absorbing, the caregiver can lose track of the fact that they’re being hurt.
That, I believe, is why you see so many caregivers leaving, or sitting up at night, wondering what on earth they’re supposed to do. It isn’t that they’ve stopped loving the person. It’s that they’ve been quietly worn down in a dynamic no one ever warned them about, one that doesn’t look like the abuse we think we’d recognize, because it comes wrapped in genuine illness and genuine love.
Naming something is not the same as condemning anyone. Understanding that the illness is driving the behavior matters deeply, and it’s part of why I’ve chosen the path I have, including why moving Rhead into assisted living became an act of love for both of us. But understanding the cause doesn’t erase the impact on the caregiver, and pretending otherwise is how so many of us end up in burnout we can’t name.
If any of this sounds like your life, please hear me gently: Your pain is real, even when it’s caused by something no one chose. You are allowed to acknowledge that the hard days are hurting you, and you are allowed to get help carrying it. Talk to a therapist who understands chronic illness. Lean on support and resources and people who have walked this road. Loving someone through a brain disease and protecting your own heart are not opposites. They can, and must, exist at the same time.
Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to multiple sclerosis.
lesley jackson
Perhaps you could also look at it another way that the person with MS is the one who is being abused which in most cases they are, please read Prof Gavin Giovannoni on abuse of MS sufferers be it emotional, physical, economical or sexual it happens not a pretty read and its very real and happens.
Then there's always the threats of bundling the person off to a care home of the career's choice, always done with love of course.
I think it's very difficult for those who do not have MS to understand what it's like having it and how venerable it makes those people feel.
Arlene Diehl
I very much appreciate this candid conversation. My father had MS, but never had the cognitive and emotional challenges that my husband, who also has MS has had. Thankfully, we’ve landed on the use of sertraline that really helped significantly. But I can say that there were years where I didn’t know who I was married to. Trying to convince my children that this was MS and not their dad was especially difficult. Most descriptions of this disease progression and symptoms does not include this kind of challenging behavior. I feel like it’s very important to make this known.