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4 Top Strategies for Taking Care of Your MS Caregiver

By Dan Digmann

Last Friday was a big day for me, or so I thought.

After a nearly five-month process of connecting, communicating, and collaborating with my medical providers and insurance company, I was going to start my first new multiple sclerosis disease-modifying therapy in 21 years.

I had done all the necessary homework about this every-six-month infusion. Comparing its efficacy to the injectable medication I’ve taken since I was diagnosed? Looking into side effects? Getting feedback from others taking the same DMT?  

Check, check, and check.

Even though I knew I had everything in order, it turned out last Friday still was a big day filled with all the feels, ranging from anticipation to anxiety, excitement, uncertainty, fear and relief – for Jennifer, my wife and primary caregiver.

When you’re the person who has MS, it’s easy to put yourself front and center because you are the person who can’t escape the direct challenges this disease poses every second, minute, and hour of every single day. I mean, nobody else knows what it’s been like for me to deal with MS for the more than 7,700 days I’ve lived with it, right?

Uh, sure, but not entirely. 

Chances are we each have a caregiver who’s looking out for our well-being, whether it’s a spouse, significant other, parent, child, sibling, friend, or neighbor. And in a caregiving relationship, it’s important to remember you’re not dealing with your MS individually. You and your caregiver are dealing with it together.

Yes, I have relapsing-remitting MS, and Jennifer is my caregiver. But she has secondary-progressive MS, and I am her primary caregiver. Through our nearly 16 years of marriage, here are four of the top strategies we've found that help to take the focus off you and your MS and shift the spotlight toward taking care of your MS caregiver who also is dealing with your MS.

1. Remember the importance of your role in the relationship. 

Many times, those of us living with MS set the tone for how our caregivers cope with the disease. If I’m scared, Jennifer is scared. If I’m upset, she’s upset. And this is where it puts even more on her because she also is tasked with being the strong one to pull me out of my fears and onto higher ground. The disease is a lot to handle, and it’s important to always be honest about how you’re feeling. It’s just as important to remember how your caregiver is feeling. Depending on the situation, you may need to be the strong one who lifts them out of their fears. Stay strong. You’ve got this, together.

2. Show understanding and give your caregiver space.

We’re living with a progressive and complicated disease. Even the most advanced researchers are still investigating and trying to completely understand issues such as what causes MS, why it affects everyone so differently, and how to repair damaged myelin. So complex, yet I sometimes expect Jennifer, as my caregiver, has all the answers to my MS questions and issues. Such as when I was considering changing my DMT, it was like I was interrogating her on the pros and cons of the new medication with the same intensity of a detective grilling a suspect on a made-for-TV crime drama. Easy there, Detective Dan. She has a degree in sociology, not neuroscience. Breathe, Dan. Jennifer doesn’t have all the answers right now. And this is key for those of us living with MS. We need to give our caregivers space to process the realities of MS. Whether it’s to go shopping, watch a football game, go for a run or get a massage, we need to give them time to clear their head before working toward the solution as a caregiving couple.

3. Don’t begrudge and don’t hold a grudge.

Remember your caregiving relationship goes both ways and there are at least two sides to each situation and circumstance. When my MS flares up, I need Jennifer to do what she can to take care of me and keep things moving forward. I do the same for her with her MS rears its ugly head. But here’s where things could get ugly in any caregiving relationship: when grudges trump the MS realities. Because Jennifer needs a wheelchair for mobility, it would be easy for her to begrudge me and make me feel bad because I still can walk. Likewise, it would be easy for me to begrudge her make her feel guilty because she doesn’t know what it’s like to work full-time and still be a caregiver for a spouse with MS. This kind of toxicity has no place in any relationship, and especially not in an MS caregiving relationship. 

4. Be their biggest fan unconditionally.

Ask yourself: If the roles were reversed, could you do for your caregiver what your caregiver is doing for you? How would it be different? What would you expect from them if you were the caregiver in the relationship? I get it. None of this was expected, but then the doctor said, “You have multiple sclerosis,” and your world completely changed. So did your caregiver’s. Whether you were recently diagnosed or have lived with MS for years, it’s still a lot to take in personally and in a caregiving relationship. For as much as you don’t understand it, your caregiver understands it even less because they’re on the outside looking in at you and your MS. Likewise, you are on the outside looking in on their life as an MS caregiver. Be patient and know that they, like you, are doing the best they can. Take the time to take care of them as best as you can. They need you on their side because you need them on yours. You function best as a team because you’re in this life with MS together. Go team!