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Patient Perspective: I Never Thought This Would Happen To Us

The day that changed my world was the day my husband was diagnosed with MS. We had been noticing signs and symptoms for a while, but when the doctors finally told us what was going on, neither of us could believe it.

At first we were able to manage ok, but over the years, I’ve watched this disease rob my husband of his freedom, bit by bit. The strong, independent man I love is now no longer able to walk, needs assistance with eating meals, moving around the house, and even going to the bathroom.

The incontinence was just another symptom of his failing body, but for me, it was the final straw that almost pushed me to my breaking point. I love caring for my husband, but dealing with incontinence is not only exhausting, it is heartbreaking to watch someone who used to be so larger than life reduced to this level.

I’ve been learning ways to make it better. We have discovered a great absorbent product that works well for him and eliminates all the leaks he was having before. And I’ve grown smarter about how to make the bed to make it as easy as possible to clean up if there is an accident.

Still, the emotional side of it is hard to watch. I know it pains him to not be able to do the basic things he has always done, and he is embarrassed to need all the extra care and support, even though I am happy to do it for him. I know he would do it for me.

My best advice to anyone going through this is to find some people you can lean on, whether it’s close friends and family, or an online community. I have a strong relationship with my sisters who have been great at listening to my struggles, but I’ve also found a great resource in the NAFC message boards. Reading other people’s stories, asking questions and just knowing that I’m not alone and that other caregivers out there are going through the same thing is such a comfort.

My husband and I have been married for 48 years. We’ve had an amazing relationship, have raised 4 beautiful children, and have 6 grandchildren that we adore. We’ve traveled, have amazing friendships, and had an overall great life before MS arrived. I never thought this would happen to us, but the one positive thing that it has taught me is to not sweat the small stuff, and to live your life to the fullest each and every day. Life is way too short to take anything for granted and you just never know when the time will come when everything changes.

Marilyn J., Kansas City, MO


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