MS caregiving is an emotional roller coaster I didn’t anticipate
Sometimes the word 'overwhelmed' doesn't feel adequate
Written by |
I was outside with my youngest child, who was only a few months old, strapped to my back while doing yard work, housework, and everything else, while my husband, Rhead, lay on the couch inside. This had been going on for a couple of years by then. Slowly, without a clear explanation, the weight of running our home had shifted entirely onto me.
I was angry. Not just tired-angry, but the deep, festering kind of resentment that builds so slowly you almost don’t notice it until one day it’s just there, sitting inside you like a stone. I kept thinking: “Why won’t he just help?” He wasn’t in a wheelchair. He still went to the gym. From the outside, nothing looked wrong with him. But the man who used to mow the lawn and take care of things had disappeared, and I didn’t understand why.
What I didn’t know yet was that he was sick.
Before his diagnosis, we found ourselves at a support group for people dealing with bipolar disorder and depression. I sat in that room and looked around at people whose illnesses were completely invisible — no cast, no bandage, no outward sign of anything wrong. And something shifted in me. “They are sick,” I thought. “You just can’t see it.” That was the first time I considered that maybe my husband wasn’t choosing to check out of our life. Maybe something was happening inside him that neither of us fully understood.
A different type of grief
In 2019, we got the answer: progressive multiple sclerosis (MS). With the diagnosis came grief, relief, and the strange, heavy clarity of finally having a name for something. But having a name didn’t make the weight lighter.
About three months after the diagnosis, I put our six kids to bed — they ranged from a few months old to 14 years old at the time — and helped my husband settle in for the night. I had already worked two full-time jobs that day. The house was a disaster. I sat down on the couch. And I stared at the kitchen garbage can. Overflowing.
I thought: “If that garbage doesn’t get taken out, there is no one to blame but myself.”
I just sat there and cried. Not a composed cry — but the kind that comes when the word “overwhelmed” no longer feels adequate. I felt completely alone. I had also lost the person I used to turn to when life got too heavy. My husband was still there, but I was grieving him anyway. As a spouse caregiver, no one had warned me that this kind of grief was even possible.
That night I understood something I couldn’t have arrived at any other way: Caregiving means releasing the expectations you carried into your marriage. Every assumption about who handles what, who shows up when, who carries the weight — those have to go. And they don’t go quietly. You have to choose to let them go, over and over again, especially on the days the resentment finds its way back. Other MS caregivers know this feeling, that push and pull of love and exhaustion that doesn’t come with a manual.
What most people don’t realize is that MS can profoundly affect mood and emotional regulation. My husband can tell me he loves me in one breath and say I’m the worst wife he’s ever had in the next. He’ll bring up the same argument we had three years ago as if it just happened. It is an emotional roller coaster that I didn’t anticipate and still don’t always navigate gracefully.
Learning to separate the disease from the man is the ongoing, daily work of being his caregiver.
The garbage still overflows sometimes. I still take it out. And I’ve learned that doing it without resentment is not weakness — it’s love in its most unglamorous form.
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.
iris
The caregiver we have is on one hand attentive and caring, but many times she is frustrated with my depressed mood, mad at the world and worry about my condition which switches from mild pain to harder pain. mainly in my legs. i am on a wheelchair all the time, but also go to bed to do some excersize. however the caregiver is tense if i dont do what she asks me to do. like to change diapers when needed as i have also the problem of uncontrolled urine,,, in which i get off the bed to pee in a plastic container but if i miss it she gets mad... also she keeps saying she needs a rest at least once a day for about 2-3 hours outdoors... is it ok? also she complains about money while she gets a nice salary (which the social security approved of due to my condition). i am frustrated and helpless. sorry but i didnt complain about this before.