The Pressure of Caregiving Makes Self-care Difficult

Kristin Neva avatar

by Kristin Neva |

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Knowing that so much is riding on me creates a lot of pressure. I don’t get sick days, vacation, or weekends off. Taking time off to attend to my health issues requires finding and paying for caregivers for my husband, Todd, who is paralyzed due to ALS.

For example, I had put off scheduling a routine eye exam because it felt like I’d be adding one more thing to a list that’s already too long.

Before I got around to scheduling an appointment, my vision clinic closed, and I needed to find a new provider. I asked for recommendations from friends on social media, but that was as far as I got. Another year passed, and scheduling my appointment never made it to the top of my to-do list. Then we were in the midst of a pandemic, so I delayed it further.

Nearly four years had passed since my eyes started bothering me, so I finally booked an appointment. Because there are few eye doctors in our area, clinics were booking four months in advance.

Last week, the day before my appointment, and after two weeks of Todd being sick, his lungs were finally clear all day, so we thought it would be fine for me to leave him to run out for an hour the next afternoon. But on the morning of the appointment, his lungs started to fill up again.

This put us back into crisis mode as we worked the mucus out of his lungs. Thankfully, I was able to make last-minute arrangements for a caregiver who is good at performing the assist cough that Todd needs. I kept the eye appointment and picked out new glasses, sending selfies to Todd and my teenage daughter for input. Then I ordered new glasses, which felt like quite an accomplishment.

I’ve found that I’m not always good at taking care of myself. It’s like I use a triage system to decide what’s most urgent to treat, and many issues don’t make the cut.

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Years ago, my chiropractor encouraged me to get a lump on my neck removed or biopsied. “It’s probably nothing,” he said, “but get it taken care of just in case.”

I put it off, and the lump slowly grew. I almost didn’t want to know if it was something bad like cancer. I couldn’t handle another thing, and arranging caregiving is always challenging. What if people got sick and needed to cancel? Not only would I need caregivers for the procedure, but also for the recovery. And I feared going under for surgery. If I died, our kids might lose two parents before adulthood.

I finally decided to have the lump removed two years ago, the same year Todd had surgery to insert his feeding tube and we already had met our insurance deductible. I arranged for caregivers, and I wrote notes to the kids and Todd and left them in my jewelry box in case I didn’t make it.

Thankfully, the procedure went fine. The anesthesia made me feel happy, the lump ended up being a benign lipoma, and Todd’s caregiving schedule worked out.

I wish our healthcare system in the Unites States provided care hours for paralyzed people so there wouldn’t be so much pressure on spouse caregivers.

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

Comments

Christine Malloy avatar

Christine Malloy

Being a caregiver for over 10 years I have found that I can do is quit my job. Chant stand the conflicts and choices. I am 79 and do not know how much longer I can go on.

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Cate avatar

Cate

I’m so glad you were able to get the medical attention you need. We are lucky to have 2 adult children to help with my care, plus nearby friends and family. Of course, I’m not as far along as Todd. It’s sometimes hard to read your columns and see the road ahead, but I also appreciate you ‘keeping it real.’

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Shannon avatar

Shannon

My thoughts are with you. I had a total hip replacement when my husband was in decline from ALS. Caregivers need more support in this . When Chuck passed I donated money for caregivers to the University of Minnesota where he worked. His care was through the VA and they were just wonderful… but caregivers need care , too

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David Crellin avatar

David Crellin

Kirstin, I understand fully the issues you describe. As a teenager I had the same experience caring for my mother. I tried to fill my life with activity, but my teachers recognised the stress I was under. Unfortunately the examination board didn't. My mum died when I was 17, just about to sit my final school exams (a year early). I squeezed into law school. But the impact continued. I guess I never went through a grieving process, scared I would collapse. And now. .

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