Appreciating the Family Caregivers Who Share Our Joys and Challenges

Dagmar Munn avatar

by Dagmar Munn |

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When I learned I had amyotrophic lateral sclerosis (ALS), my whole world changed. My husband’s world changed, too, as he suddenly found himself in the role of being my caregiver.

For some ALS patients and caregivers, the new responsibilities that follow a diagnosis begin almost immediately. Ours followed a slower transition. Over the next year, my ALS symptoms caused me to give up cooking, doing laundry, driving, and running errands by myself. My husband stepped up and willingly took on these duties, although we both admit he faced a learning curve with cooking and doing the laundry. And we both learned to fine-tune our communication skills.

Many spouses and family members become caregivers, an act that’s often undertaken out of love and devotion. These loved ones are thrown into the role and must learn on the fly. As a result, they’ll often neglect to properly care for their own physical and emotional health. Fortunately, when this happens, help is usually nearby.

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We Are Family: The Case For Reciprocating Care

Our town

My husband and I live in a community with an older population. Like us, everyone moved here to enjoy the good weather and the retirement lifestyle. What we didn’t expect was to face the many health challenges that come with growing older. So, it’s not uncommon around here to know someone who is a spousal caregiver. And while professional caregiving agencies are located nearby, family caregivers often try to go it alone.

I recall being at a meeting for one of my local craft clubs when a new member entered the room and sat down next to me. During a break, a few of us chatted with her and asked if she liked our little town. Halfway through her answer, she dissolved into tears. Her husband was in the early stages of Alzheimer’s, she said, and she hadn’t left her house before this in days. She was so happy to be with us.

But there was a catch: “He’s home alone, so I can’t stay long,” she said.

Our new friend managed to slip out before the meeting ended. But the next time she showed up, several people pulled their chairs close to hers during a break and began an earnest and compassionate discussion. Names and phone numbers were exchanged.

Later, I learned that they had connected her with a local Alzheimer’s group, and even arranged for respite care so that she could do errands and attend our meetings. The next time I saw her, she said she was crying tears of joy.

November is a special month

Because November is National Family Caregivers Month, I encourage you to reach out to any solo caregiver you may know. Maybe all they need is a friendly conversation that allows them to step outside their situation and share a laugh.

Or, maybe they need something more, such as changing a hard to reach lightbulb or picking up groceries.

Other ways to help include:

  • If going to social events is challenging for them, offer to bring popcorn and drinks and watch a movie together at their home.
  • If their car needs an oil change, offer to take care of it for them.
  • Be observant and think outside the box.

Being a caregiver means facing stressful events, changes in symptoms, and other unexpected challenges. One of the best ways I’ve found to handle those moments is to have a good sense of humor. To learn more about that strategy, I recommend you read a previous column I wrote titled “Finding the Funny Moments in Caregiving.”

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

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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 Services, and are intended to spark discussion about issues pertaining to ALS.

Comments

james gans avatar

james gans

Hello Dagmar I always appreciate your posting and advice even if I don't often respond. I try to meditate twice a day to calm my fear of my symptoms which is overall weakness and fatigue even though when I meditate my thoughts come back and forth during my 20 to 60 minute mediations. My wife is my current caregiver but she mostly needs to work late at her office. I do have a number of friends in my area but they mostly come to just visit me.
Take Care, Jamie

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Peter Tam avatar

Peter Tam

Hi Dagmar,
I really appreciate your outlook on life with ALS. I'm truly saddened because my 21 year old daughter was recently diagnosed with ALS. I'm trying to stay strong and looking out for hope through science. Just last week on Nov. 11,2021 I came across an article that explained how researchers in Northwestern University had come up with a way to reverse paralysis in mice. As I read the article it appears the gel produced "dancing molecules" that could regenerate axons in the CNS. I'm not a scientist but I'm hoping and praying that they can use this technique to "CURE" ALS. Please let me know if you or your network of contacts have any information. We in the ALS community need all the help we can get immediately. Thanks.

Reply
Dagmar Munn avatar

Dagmar Munn

Peter, I am sorry that your daughter has been diagnosed with ALS. During the past 11 years that I have been living with the condition, I've learned that each patient follows a different path with ALS. Symptoms, longevity, mindset, and more, all are different. So, it pays to be hopeful and think positive about her future.

As to potential treatments/cures - - I invite you to join the ALS News Today Forums. I am one of the moderators there and we have nearly 1,000 members. We have thoughtful and helpful discussions on potential treatments and share tips on coping and adapting to changes in symptoms.

I'll also suggest you both check out my ALS and Wellness Blog - - where I share motivation and my own tips for living with ALS.

Best wishes to you both, Dagmar

Peter Tam avatar

Peter Tam

Thanks Dagmar. I'm trying to stay positive and hopeful. My daughter is strong willed and smart. I on the other hand have moments everyday where I'm extremely sad. I have to will myself to stay strong for my daughter and family. Thanks again for your community posts. It really helps.

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