Lindsay Kelly shares her experience with her husband’s MS, from navigating his shift from relapsing-remitting to progressive disease to redefining her role as both spouse and caregiver. She reflects on mindset, resilience, and the power of laughter in the face of change.
Transcript
Hey, I’m Lindsay Kelly, and I married my husband who had MS. He was age 17 when he got diagnosed with relapsing-remitting MS. He and I have been married for 23 years, and a few years ago he was rediagnosed with progressive MS.
A few years ago, my husband, Rhead, when he was in the hospital, he was having cognition issues, but he was physically just totally fit. But mentally he was having these cognition issues that were completely out of character for him. And I didn’t know what was wrong. I even asked some neurologists, I was like, “Are these cognition issues stemmed from MS?”
The only point of reference I had when we got married was that my mom and dad had this really good friend who was diagnosed with MS, and he had been in a wheelchair my entire life. So when me and my husband met, I figured at some point he could be in a wheelchair just because I only knew MS to affect somebody physically.
So when my husband started having these cognition issues, I was like, “Where are these coming from?” I had no clue. And so asking doctors — they had no clue.
So I ended up checking him into a mental hospital, and the psychiatrists were able to get some neurologists on board, and then they were able to diagnose him with progressive MS.
Here are three suggestions that I would give to caregivers if they were in a similar situation to me.
The first thing is to practice self-care. I think that is the hardest thing for a caregiver to do because we are constantly like, “Oh my gosh, this person needs this help.” And if you’re a mom, trying to take care of kids, plus somebody you’re caregiving for, it is especially hard to find time to take care of yourself. But mentally and emotionally, that has been one of the biggest things that is still something that’s very hard to — like, step away from what I’m doing on the day to day, to go practice self-care.
But I make a point where I just force myself to just leave my house, get away from it all, and to actually go practice self-care.
The second tip would be to switch your mindset to being a caregiver. That was something that was so huge for me because in my mind, when my husband got diagnosed with progressive MS and he was declining mentally, so he was becoming more childlike in some ways.
And also I was battling his ego because here he was, an independent person who was able to work and do all these things, and he’s sitting there trying to do things that he used to be able to do, but me realizing you can’t do those things.
I think a lot of caregivers face that where you’re trying to battle this ego and the person that you’re caregiving for. But I often had to tell my husband, “It’s OK for you to just be sick. It’s OK for me to take on all of your responsibilities.” As hard as that was for me, I had to do that because it was easier when he backed down. And it allowed me to step in to being that caregiver.
When you’re in your mindset when you’re saying, “I’m their spouse,” you kind of develop this resentment and you’re like, “Why are they being this way?” And you want to kind of treat it like it’s a marriage. But when you switch into the caregiver mindset, you’re able to really switch into more of a loving, nurturing role rather than a partnership role.
The third thing that I would say is to learn to laugh. I know that that’s really, really hard. I went through a lot of bitter moments, and a lot of times where I couldn’t laugh. I remember moments where I would look at people and be like, “I don’t even see how they’re smiling. Where does that even come from?” Like how somebody would be happy.
I know it sounds funny, but I was almost trying to borrow their happiness for a second. But I think one of the things that I have learned is just to learn to laugh. Learn to laugh even in the background when it’s just you by yourself. Learn to put that bitterness aside and just learn to be who you were.
I hear my kids all the time and they just sit there and laugh naturally — like really hard. And I’m like, “That is amazing, that kids can just pull that out of them and just laugh.”
And I think as adults you get responsibility and you forget to laugh at the little things. You try to be all mature, but just to learn to laugh at the immature things and to just be happy. Just practice being happy because it is a practice.
