What it means to be a caregiver to an MS patient

note: as MS varies, so the patients and needs vary – this is my own personal take as an MS patient.

 

As I consider topics for MS Awareness Month, I’ve been bouncing around a bit. I was planning to keep my “teacher” hat on, sharing more general info about multiple sclerosis and what an autoimmune disease really is. But taking a step forward, I realized that I need to share more about a personal part of my MS journey.

I’m accustomed to hearing the term “caregiver” in reference to an individual taking care of the daily needs of somebody who is a bit older than I am… a grandparent, for example. But I am only 43 years old – do I really need a “caregiver”? Really? I was married at age 22, and T.R. and I took those very special vows, the ones about loving and cherishing. And that one line is certainly not one we eagerly anticipated… “in sickness and in health.”

We had three healthy years, then MS snuck in. Didn’t knock or ask permission, it just meandered on in and embraced an optic nerve. It then left that spot, but over the years that followed, MS made its way into my life in ways that were insidious at first, becoming more obvious as time marches on. This brings me to the actual focus here: our loving caregivers.

This is certainly not all-inclusive, but a list follows below.
My Caregiver does many things:

  1. Help me keep on top of things. I sometimes joke about those scars in my brain, but there really are times a draw a blank. Show patience, but move along together.
  2. Work with uncomfortable or embarrassing things. We may sometimes need to do an unplanned load of laundry. And sometimes you help cut food… without making an issue of it.
  3. Accept “slow” as a regular speed, and be willing to accept it without complaint. This is especially frustrating when weather is too cold or hot or rainy… I’m frustrated also. Really.
  4. Remind me (gently) that scheduled plans would have worked a decade ago, but not today. If tears come, let me cry. It’s nothing you did, it’s just life. (and sometimes a version of the said plans CAN work.)
  5. Fill in those gaps I would have filled if MS hadn’t intruded. This means you get to run carpool, chauffer… and many other bits large and small. I like when I can be there too, but that doesn’t always work.
  6. Take care of yourself! We’d love you to be healthy, but this also refers to other parts of who you are. Spend time with friends, doing things you like to do.
  7. Love me anyhow – and I’ll keep loving you!

And I know that’s what we’ll keep doing, “Until death do us part.” I love you, T.R., my “Knight in faded denim.”

…to see T.R.’s perspective as a caregiver, see his freelancer blog

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1 Comment

  1. Ellen Stouffer said,

    March 13, 2015 at 5:33 pm

    Beautiful Angie.


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