What a Caregiver Wants You to Know About Relapsing-Remitting MS

Medically Reviewed by Brunilda Nazario, MD on October 28, 2021
5 min read

By Karen Foster, as told to Alexandria Benisek

My father has had multiple sclerosis (MS) since I was about 10 years old. About 5 years ago, he really began needing more of my help.

I was living in Chicago at the time, and my father had a relapse. What typically happened before was, he'd go to the hospital, maybe be there for a week, and then we'd get home like it never happened. But this time, he was there longer.

Fast-forward about a year and a half, and he had another relapse combined with pneumonia. With the pneumonia, he didn't fully regain his mobility. He wasn't able to do bed transfers, use the bathroom, or other things like that.

I had moved back temporarily. It was a transition time in my life where I could help my father get back to his baseline and reset for the next phase of my career. But I decided that I needed to stay to help.

I put myself in the position of his caregiver. I've been more of a direct caregiver for about 3 years now.

The biggest responsibilities are being adaptable, being flexible, and staying on top of any types of care that they may need. I've learned that you have to be able to adjust and pivot with each day.

It's important to understand that every day is different. You're going to have great days, and you're going to have some of the lowest days. You could've woken up in the best mood, but if their day is really bad, you can't help but take that on too. Sometimes the care they need is more emotional than it is physical.

At times, it can be an all-day thing. Your nights and your plans may not go as intended. Some days, you'll work out a routine that works -- and it could work for months -- and then sometimes, it doesn't. For certain people with MS, their needs change from day to day.

Caregiving started to impact my life in a way I wasn't prepared for. The weaker that he got, and the more I needed to be at home, the more I started to isolate myself from friends.

I wouldn't really get into get into details with friends. I would just say, "Oh, I can't make it today." I didn't have the words to explain at the time and I didn't want people to feel sorry. Now my social life is better. Because I do have great friends, I am talking about it more, and I am making time for myself.

My dating life has been impacted, though. Especially now because I'm not available for every little thing. I might be free at 5 today for dinner, but next week I might just have too much to do. If I was in a serious relationship, I would still have to come back at night to help my father get in bed. It's the idea in your head that someone is waiting for you at home.

Meeting new people, they may not understand your situation. When you're dating or getting to know someone, there's a lot of unsolicited advice. Everybody has their thoughts, and they'll project a lot on you. I think it's one of those things that, if you haven't lived the life of a caregiver, it's not as easy to understand.

My father and I are very close. I've lived with this for so long and I know, he always bounces back, he never complains. I think the hope for me has always been for him to be able to walk again. You want those things. But when someone's not getting better, and you're seeing them every single day, you're not prepared for the impact or how it can lead to depression.

I was also constantly listening to doctors say things that weren't always hopeful. That was hard; I didn't realize the impact of this all until later. I didn't even know that I was depressed at the time. Now, I go to therapy to make time for my mental health.

It's important to take inventory on what's in your cup. When I say that, I mean think about the things that you're doing as a caregiver and list out those things. Ask yourself, "Who asked me to do those things and do I really need to be doing them?" Sometimes what happens is, we want to do everything because we think it's easier that way. So, we take on all this stuff, and now we have this cup full of tasks. You get tired and exhaust yourself.

If you take inventory of what you're doing, decide if they're things that the person you're caring for could actually do.

I'd be cooking the meals, pouring cups of coffee, scheduling doctor's appointments, setting up our transportation rides, and getting his clothes ready. And then I realized, no one asked me to do all of that. Some of this stuff he can do. He can use the phone to make his own doctor's appointments, and he can call and set up transportation. These are little tasks, but they're all things that take up time.

I ask him in the morning, "How are you feeling today, how does your strength feel?" If he's extremely weak that day, then yes, I'll help a lot more. But if he's fine, I just make sure things are within reach for him and then I let him do his thing.

A lot of times, we take on too much. Once you get in the routine of caregiving, you think you have to do it all. You don't even realize you're not helping them. Because when you take things away from people who are already limited, you leave them with nothing to do. I realized there were things that my dad could do on his own. And once I released myself from that, it also freed up space for me to focus on the things that I really need to do. It gave him more independence and it gave me more freedom.

I like to think of it as more of a partnership. That way, we're working together so that I'm not overstepping. That made all the difference in the world for us.