An MS caregiver’s dilemma: Do I stay or do I go?
A columnist shares the part of caregiving she wishes more people understood
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Even with my husband, Rhead, living in an assisted-living facility, there are so many hard days when I become somewhat of a punching bag. One visit, he is light and funny, the version of him I fell in love with, and the next, he can turn sharp and far away, as though someone else has quietly moved in behind his eyes. The whiplash between those two people is the part no one warns you about, and it doesn’t end just because he no longer lives under our roof full time.
Multiple sclerosis (MS) is not only a disease of the body. Because MS damages the brain and the nervous system, it can affect a person’s mood, patience, and even personality, not just their legs or their vision. Multiple Sclerosis News Today offers a thorough overview of how MS affects mental health, and former columnist Debi Wilson wrote honestly about the personality and emotional swings that can come with the disease.
Knowing the science doesn’t make the hard days disappear, but it does help me remember that the change I’m watching is the illness moving through the brain, not the heart, of the man I married, the one whose diagnosis changed everything and nothing about how I love him.
Caregiving takes a toll
Here is the piece I wish more people understood: The person a patient loves most often catches the hardest edges. When you are frightened, exhausted, and grieving the body you used to have, the safest place to set that weight down is on the one who isn’t going anywhere. So the spouse, the steady one, the caregiver, can quietly become the place where all of that lands. It can start to feel less like marriage and more like absorbing someone else’s storm, day after day.
That takes a toll. I have written before about how MS caregiving became an emotional roller coaster I didn’t anticipate, and about the way caregiver burnout broke me before I knew its name. What I’m learning now is that loving someone through a brain disease means keeping one careful eye on my own mental health while I tend to his. If I let myself disappear entirely, there will be no caregiver left to give.
And so the question arrives, usually late at night, in the quiet after a hard day: Do I stay or do I go?
I won’t pretend the thought of leaving never crosses my mind. It does for many caregivers, but this doesn’t make us weak or unloving. It makes us human. When the person you’d take a bullet for keeps aiming at you, even unintentionally, something in you starts to calculate how much more you can carry. I think it’s important to say that out loud, because so many caregivers sit alone with that question, convinced they’re the only ones who have ever thought it.
For me, the answer right now is to stay — honestly, without erasing myself. I’m learning to separate the disease from the man, to name the behavior without taking it as the final truth of who he is, and to protect my own heart at the same time. Staying doesn’t mean accepting harm without a word. It means leaning on support and resources, letting other people help carry the weight, and refusing to set myself on fire to keep him warm.
The question of staying or going is rarely answered once and for all. It’s answered again and again, on good days and bad ones. Today I’m choosing to stay, with my eyes open, my love intact, and my own well-being finally on the list of things worth protecting.
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.
E. Anne Doggart
I find this so helpful, I just have to let you know! I may be a retired nurse (now age 69) and my background may have helped equip me to 'stick around' when my love and care and £££ were never enough. I never wanted to use phrases like "After all I've done for you" or any other guilt-trippy behaviour. My family member with progressive MS and a bipolar disorder, who lives alone a mile away, with a care-package... how can he ever be really happy? Or even content with his life? What does it take? I am only just handing over the seemingly thankless role of appointed employer of his PAs. Afraid that I'll still be doing it years from now, if I don't! A very good friend of his will carry the baton for as long as it feels right, unpaid but hopefully not unappreciated as I have been. That's life and we all do what we safely, honestly, healthily can... wary of toxic relationships forming. Your article helps me feel (I know) I am doing the right thing. Thank you 🌻🥰💚
Michelle Jones
But presumably you'll continue to monetize his MS via your social media?
Peter Mylius-Clark
Thank you for telling your important story. I empathise with your experience. My Partner, the love of my life, has also had physical and psychiatric problems from the damage that MS ravaged on her nervous system.
iris
ןi understand how a wife feels when her husband is into the MS disease. I am a mother to a MS patient son, who is divorced and I thought i can take care of him but in time I realized he needs a caregiver who is not a family member but a young woman who gets paid for this work. at first it was ok, but when time goes by she gets very pressed with all the involved situations, mentally and physically, and me? i am worried all the time about her giving up... and i will have to look for another caregiver which isnt easy at all. what can we do?! its so very hard and sad.... why cant they find a cure for this disease???