Four Keys to Succeed in MS Caregiving Relationships
Last updated: February 2023
OK. We get it.
For those of us living with Multiple Sclerosis, most are quick to say that the disease doesn’t define who we are.
But this motivational mantra is limited because none of us is facing this disease alone.
Think of your caregivers.
You know, the family members, the friends or the neighbors who offer the help you need to manage and improve the life you’re living in spite of MS.
Perhaps a more empowering phrase to use is, “We have MS. MS does not have us.”
Just look at us. We both have MS and are the primary caregiver for a spouse living with the disease.
Jennifer was diagnosed in 1997 and has secondary-progressive MS; Dan was diagnosed in 2000 and his is relapsing-remitting. We met at a National Multiple Sclerosis Society event in 2002, were married in 2005 and truly have been living happily ever after.
Living with MS for nearly two decades, we know the unpredictable challenges of the chronic illness. But being married to a spouse with MS for more than 12 years, we also understand the difficulties that come with caregiving.
But it hasn’t always been easy. There are a lot of obstacles that MS has tried to put in our way, but we’ve found a few ways to join forces and overcome them together. Here are four tips we’ve used that can help you and your caregiver tackle MS head-on and stay strong in this fight.
Stop, ask and listen
There’s a lot going on in life. We all are surrounded with distractions, everything from television to social media, family and work commitments. So it’s not enough for you both to just hear what the other person is saying.
We all need to stop. Clear our minds of clutter and preconceived notions, and then truly listen. Listen and then ask questions so you fully understand what your caregiver or loved one is saying. This ensures you both are on the same page and are moving forward together.
For example, Jennifer has recently had more difficulty with her right arm and can’t easily feed herself. This is very frustrating for her when she can’t get the food to her mouth and she spills it on the front of her sweater. It’s similarly frustrating for Dan to watch this happen, and he’s ready to swoop in and feed her.
Not so fast, Jennifer says.
If Dan starts doing this, Jennifer will get accustomed to his assistance and stop trying. But at the same time, he didn’t want her frustrated and have to continue cleaning up her spills. After a few tense meals and related discussions, we heard what the other one was saying.
We since have worked on strategies to strengthen Jennifer’s arms. And Dan knows not to instantly intervene, but Jennifer also knows it’s alright to ask for assistance.
A little MS humor: Doctors aren’t the only ones who need patients. Haha. See what we did there?
Patience is a necessity in a caregiving relationship, whether it’s between spouses, parents, children or friends.
In the example used above, we both needed patience. MS changes every day and never is the same exact disease twice. Empathy is a major factor that helps to increase patience. Putting yourself in the other person’s shoes takes patience to pause and see the situation from his or her perspective. This makes it easier to understand why they (not you) feel the way they do.
Caregiving guarantee: Mistakes will happen
Contrary to what we all would like to believe about ourselves, nobody is perfect.
Need proof? Combine an unpredictable illness with two people trying to what they think is the best way to deal with certain situations.
There is no guide that has all the answers. Remember that both parties in the caregiving relationship has overall best interests in mind. Cut each other some slack and hold on!
Like when we were on a recent trip for a speaking appearance in New Orleans. We drove to Detroit and stayed in a hotel there so we could catch an early morning flight to The Big Easy. We never expected Dan would get sick that evening and couldn’t help Jennifer make transfers in and out of her power wheelchair.
We were stuck and hoped Dan could sleep it off throughout the night. First thing in the morning, he was weak but was confident he could get Jennifer out of bed and into her wheelchair.
“You sure?” she asked.
“I can do it. I’m good,” he said.
A failed transfer, and Jennifer fell to the floor. It was a controlled collapse, but we still needed to call the paramedics to get her back into bed.
Jennifer wasn’t sure the transfer was in our best interest, but Dan knew we couldn’t move forward if we both were stuck in bed. But there was no blame for the mishap. Shared apologies, and shared acceptances. We understand that stuff happens.
And stuff will happen again.
Always remember you’re on the same team
When it comes to a caregiving relationship, you aren’t in competition with each other. Remember that you both are on the same team and you’re battling the disease together. Put up a united front. Trust your teammate and the strengths you each bring to the team.
It may sound cliché, but teamwork makes the dream work.
And after all, aren’t we all dreaming of happily ever after?
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