Showing Love for Our Caregivers

Dagmar Munn avatar

by Dagmar Munn |

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Since February is known as the month of love, I’d like to shower some love on all the ALS caregivers around the world. Add a special shoutout to family caregivers — the spouses, partners, family members, friends, and even neighbors who care for someone with ALS. It’s a challenging responsibility that often goes unnoticed by those outside the ALS community.

Family caregiving describes the situation in our home. For the 11 years I’ve been living with ALS, my husband has been my sole caregiver. Asked about hardships, he’s kind to describe me as “low maintenance.” Due to my slow symptoms progression, he hasn’t had to do much in terms of direct care, except when helping me in and out of the shower and keeping my mobility scooter fully charged and running smoothly. He did have to make major adjustments to his daily living routines.

My husband now does all the cooking, house cleaning, and laundry, and drives me to appointments. We jokingly agree that caregiving has even pushed him to expand his cooking skills beyond his former motto of: “If it doesn’t go in the microwave or between two slices of bread, it’s not on the menu.”

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Our common connection

While the effects of ALS vary widely from person to person, we all share one experience: our diagnosis day. On that day, family roles suddenly shift — one of us becomes a patient and the other a caregiver.

Being an ALS caregiver can include facing stressful events, changes in symptoms, and other unexpected challenges. The disease tests relationships and magnifies potential cracks. My husband and I make sure that communication, humor, resourcefulness, and self-care are priorities in our relationship.

Then there are the ongoing challenges to the concept of what being a caregiver means. For example, recently I caught the tail end of a TV commercial promoting a national brand nursing home. The wife had a medical condition and just moved into the facility. A family member exclaimed, “I’m so relieved we found [nursing home] for our mom. Now we can go back to being her daughter and husband instead of just her caregivers.”

I’m sorry, what?!

I’m sure the marketing rep convinced his nursing home client that the ad would generate an emotional connection with the viewers. But to me, using the phrase “just her caregivers” degraded the dignity and worthiness of what family caregivers do.

Caregiving is a partnership between the giver and the receiver of care.

Spouses, partners, family members, friends, and even neighbors are part of a circle of love from the heart. The caregivers among us deserve our appreciation every day, but this Friday is a special day: It’s National Caregivers Day.

If you know someone who is a caregiver, share a special thank-you with them on Friday. Heck, thank them on all the other days, too.

To all the caregivers around the world: We care receivers appreciate you!


Note: ALS 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 ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.

Comments

Deborah Baker avatar

Deborah Baker

Dagmar,
I just felt the need to thank you for your positive, upbeat, kind articles. I started having mild symptoms in June, 2019 but wasn’t diagnosed until July, 2021. I was 70 in September!
It was a marathon of doctors, tests, etc to the point of weariness to finally get this scary, awful diagnosis! I was walking with some difficulty but had a significant fall last June that jammed my back & neck. Within a week I was on a walker & my progression has been significantly exacerbated since then.
My husband is my main caregiver. His life is changed forever & there have definitely been ups & downs in learning to fit in our new roles! However, the Lord has been faithful to carry us, giving us strength to get through each day. I can’t imagine how hard this is for him….even though I did care for my mom for about 8 months. All my roles in our marriage have now become his and more. We celebrated 39 years of marriage yesterday…he has honored & blessed me everyday by his kindness, trying to learn how to care for me, loving me with each loss I have, and praying for me and with me daily.
We did have lots of great years before this happened; therefore, I can’t imagine how young couples get thru this. But I will attest to the fact that God gives us joy even in the midst of this! Now we are human, so we still get frustrated, sad, some tears… but my husbands sweet humor, loving attitude that we are going to get through this together… keeps us going’
I can tell your husband and you are a great team too! Honoring your life together at this difficult time!
Thank you again for your articles!

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