An MS caregiver’s dilemma: Do I stay or do I go?

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.

Recommended Reading

July 6, 2016 News by Patricia Silva, PhD

MS Takes a Toll on Caregivers, Too, Especially on Their Mental Health

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.