MS Maze

It’s a fine line, when a spouse is also a caregiver. In 2004, when I received a diagnosis of MS, I had NO choice in the matter. The man in my life DID. Imagine the task of having to weigh that issue and actually choose. No, he never hinted at his thought process and, no, he never showed the slightest sign of indecision, but I have to assume there was some wrestling going on there. We were married the following year.

I have Relapsing/Remitting MS, so much of the time the role of supportive spouse is sufficient and I take care to maintain my independence. I want him to think of me as his wife, not his patient.

Sometimes we’re in that middle ground, and I’ll ask him to carry something, or I’ll leave a chore or two undone. We’ve worked out a silent system of sorts. If I leave the laundry basket full of clean clothes at the bottom of the stairs, he’ll pick it up on his way by and so forth. We hum along like a well-oiled machine in this mode.

When we reach that full blown relapse, however, Jim becomes the caregiver. Without much fanfare, he takes over my chores, the driving, the shopping, shuttling me to the doctor. He’ll call my office and let me sleep in. When I shower, I’m aware that he’s got one precautionary ear tuned in for signs of trouble. He’ll load and administer my daily injections when necessary. Several times a day, I’ll hear his voice coming from our home office, “Hey, Babe…how’re you doing out there?”

MS is clearly OUR issue, not mine. While I carry the load of the physical manifestations of MS, Jim carries the load of the on again, off again caregiver and spouse. Together we share the burden of medical and health insurance woes and working our lives around the relapses. It is a challenge we accept and share as a couple. He does what is needed without hesitation or complaint. In return, I show my appreciation whenever and however I can.

Whether it’s your spouse, your parent, your sibling, your child or a friend, be aware of the silent burden of your helper or caregiver. I sometimes keep symptoms and frustrations to myself because I don’t want to complain too much. My guess is that my husband does the same. Show your appreciation. Pay attention to the little things as well as the obvious things that are done on your behalf. Imagine how you would feel should roles be reversed. It’s not so easy to watch someone you love struggle.

Have you hugged your caregiver today?