With multiple sclerosis, the right caregiver is everything

How my wife and caregiver goes above and beyond the call of duty

Benjamin Hofmeister avatar

by Benjamin Hofmeister |

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There are a lot of things that I’m afraid of. That seems to come with the territory when you have a chronic disease like multiple sclerosis (MS), or when you’re a parent. At the same time, I don’t have any phobias that I’m aware of. To date, I just haven’t encountered anything that overwhelms me with fear to the point that I can’t function.

I’ve mentioned before that I don’t care for heights, but I can overcome that fear if need be. Having an MRI isn’t at the top of my list, either, but given that I’ve fallen asleep inside the machine twice, I doubt I qualify as claustrophobic. I don’t even mind spiders, I just don’t like being surprised by them.

Another common phobia is a fear of snakes, which, as I’m about to relate to you, I also don’t have. Fortunately, neither does my wife.

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My MS caregiver goes above and beyond

We lost a snake in our house a couple of months ago. When I say “we” lost it, what I mean is — actually, blaming someone isn’t that important, is it? The point is, my father-in-law brought a young, gray rat snake to show the kids, we kept him for a bit, and he escaped.

I was sure he’d escaped while his enclosure was outside, so I didn’t look real hard indoors. My wife was convinced otherwise and kept a wary eye out. The kids were the ones who finally found him.

They were unloading the dishwasher, putting the clean dishes away, and griping about child labor laws, or some such nonsense, when our youngest shouted that there was a snake in the cabinet. The cabinet in question was one of the high, above-the-countertop ones, and sure enough, nestled among the glass cookware was the missing snake. He had been known as Scaley, or simply “the snake,” before, but was redubbed Pyrex after being found there.

My wheelchair elevates, but not high enough, so my wife stood on a step stool and retrieved him. She had to use an oven mitt because Pyrex wasn’t at all happy or grateful for the help. If he had any fingers, I’m pretty sure he’d have given us the middle ones.

He stayed with us into the early fall and was returned to where he’d been found before the weather turned cold. He (I never really knew if “he” was a he, because I respect his (?) privacy) was a wild creature, and that’s the right thing to do. It was an experience we’ll all remember, and if there’s an award for caregivers who go above and beyond the call of duty, I’d like to nominate my wife. I’ll bet catching unhappy snakes in high kitchen cabinets qualifies.

A middle-aged man is holding up a small, gray rat snake. He's wearing a gray graphic T-shirt and glasses, and is seated in his wheelchair in what appears to be his living room.

Ben with Pyrex the snake. (Photo by Michala Hofmeister)

My wife is my MS caregiver, in case I’ve never mentioned it before, and does quite a bit more than recapture errant reptiles. After the snake incident, someone suggested that maybe she should keep the snake and release me in the wild, but she didn’t, so I know she cares.

I don’t like to face the reality and even dodge writing about it sometimes, but the fact is, I need care. Help is a stranger holding a door for you. Care is something more. It’s a relationship that’s hard to form with someone you already have a different kind of relationship with.

When a stranger offers help, I often catch myself accepting grudgingly, believing I could have done the task myself. Accepting care grudgingly isn’t an option. If you do, or if care is given that way, then it’s not care, it’s just help. Throw relationships into the mix and it just gets more complicated.

My wife is a nurse, so we’ve had to find the balance between family and stranger, and patient and spouse. It hasn’t been easy, and like the lost snake, if I can’t or won’t communicate my wants and needs, it’s easy to lash out at a helping hand.

Communication is key. Seems easy, but it’s not.

Lots of laughter helps, too. We’re getting pretty good at that.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Comments

JM avatar

JM

Thanks for this - as newly diagnosed (a little over a year ago.)- this is something my wife and I find ourselves trying to navigate, sometimes in a good way and sometimes not so much. add the fact that we are still trying to figure out how to swallow our new normal and the struggle gets all the more complicated! Thanks again - I needed this!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for the comment! I honestly think I get as much from writing it as anyone does from reading it.

If MS would just stay the same we could adapt to it so much better. Sometimes it feels like it's not even the same as it was an hour ago.
That's a lot of flexibility required from both sides. It's never an easy new normal when it's new everyday.

Not easy but doable and worth doing.

Ben

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Kim Ahmed avatar

Kim Ahmed

You’re such an amazing writer, always bring a smile to my face or some thoughtfulness.
Yes, the pride”I can do it myself “ thing is kind of a sticky thing to get over. Friend of mine once sat me down & said, “you know, when you’re proud & insist on doing it yourself, you deprive the person asking to help you of a blessing, and you for receiving one!”
Made me look at my situation in a whole new way. Not shy about asking for help anymore after 20 years with SPMS!

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Susan avatar

Susan

Thanks for your comment. I’ve had MS 40 years, the last 20 with SPMS. It’s hard to accept help when you just know you can do it…or should be able to do it. Your comment is a good reminder to reach out.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks Kim! I'm still trying to find that balance between my pride and practicality. Accepting help isn't beneath my dignity and is often the most practical thing to do, but my pride needs work.

https://18disabled.com/pride-practicality/

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lj avatar

lj

Beautifully written, you summed up the difference between help and care.
Yes, laughter helps a great deal, also the ability to talk and listen, I also needed this thank you.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You're very welcome Lesley! I needed it too.

Ben

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Gary Whittaker avatar

Gary Whittaker

Boy you are right. My wife was with Kaiser who didn't diagnose it until 15 years after the first hint of blindness that went away. After 15 years of treatments at Kaiser we finally got a Dr. in Vegas who knew her stuff. She had been medicated unnecessarily for 12 years. We were shown the scans. It was explained to us so clearly. Not all neurologist's are good for MS. Make sure you get someone who knows MS is all I can say.

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Benjamin Hofmeister avatar

Benjamin Hofmeister

You're so right Gary!

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Karen Strawder avatar

Karen Strawder

Thank you for sharing. I agree with you, that communication is key. Sometimes it is hard, because we that have the MS, sometimes can have a difficult time articulating what we are trying to say or do. Laughter is huge! I laugh at something I’ve done myself, at least 3 or 4 times a week. And please don’t let pride, get in the way of letting someone help you!

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thank you Karen! Communication is key. If only it was easy!

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Mike Purcell avatar

Mike Purcell

I enjoyed your article. I was diagnosed with PP MS in 2000. I won't bore you with the details but for me it's been a long learning effort. Although my wife is not a nurse she has helped me figure this out. I would be more than happy to share with others what I've learned over the past 20+ years. Thanks

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Thanks for reading it Mike and thanks for the offer to share. It really is a life long learning process, isn't it? For both you and everyone that chooses to be connected to you.
Bless the spouses, friends, etc that are willing to go on the journey with us. It isn't an easy one.

Ben

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Mike Purcell avatar

Mike Purcell

Ben, is there a community where we can all connect? Thank you

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Benjamin Hofmeister avatar

Benjamin Hofmeister

Hi again Mike! There are forums here on MS News Today.

https://multiplesclerosisnewstoday.com/forums/

It's not for everyone, but my favorite one is,

https://mskurmudgeonskorner.com/

Read the description and give it a try if you think it's your kind of place.
,
Ben

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