I have multiple sclerosis. My husband, Jake, is a caregiver. We’re a bit uncomfortable with that term because we’re not sure that it truly applies. Someone recently suggested “care partner,” and that seems more suited to our particular situation.
My relapsing/remitting MS still gives us enough of a break that the caregiving is minimal. We hope that trend continues because being a caregiver, or being a person who needs one, are both difficult roles to play. When the caregiver is also the spouse, things can get really complicated.
In order to thrive, a marriage must be a partnership. It won’t always be an equal division, but the scales should balance fairly easily. My health is a problem. It interferes with that balance, sometimes causing a chain reaction of events. Things that, on the surface, seem to have nothing to do with MS, are severely affected.
I wouldn't wish living with a chronic health problem on anyone. On the other hand, I remember times in my life when people I loved were sick or hurting, and I've had my fair share of those awful times. It is a desperate feeling. I hated watching someone I love suffer and I would have done anything to switch places.
Jake must endure this scenario over and over again. He watches me struggle and fall. He stands by my side through doctor visits and medical testing. Every morning, before he wakes me, he opens the refrigerator door and pulls out a syringe. It’s a matter of routine, but its significance doesn't escape him.
How many changes has he made to accommodate my need for assistance? Do I know even a small fraction of the silent sacrifices he has made on my behalf?
One of the regrettable side effects of MS is that it can distract you from so many other things. You can become so completely absorbed by your symptoms and personal disappointments that you fail to notice the the trials and tribulations of the people who are closest to you.
Some days it just hits you that your caregiver needs care, too. Caregivers need to vent their frustrations about MS, caregiving, and anything else under the sun. We should give them the opportunity. We should listen, without being defensive. We should hug them and thank them. We should ask how they’re doing, and then sit back and listen.
He knows I love him. But, sometimes, I’ve got to give a little care to the caregiver.
Published On: July 18, 2008