Having a Caregiver While Being a Caregiver

Posted by Reeve Staff in Life After Paralysis on November 11, 2021 # Caregiving

Couple reading togetherI often wonder if people really understand what "in sickness and in health" means in your marriage vows. There's a reason sickness comes first. Marriage is a partnership, it is hardly ever equal, and when things are stressful, it can breed comparison, which leads to dissension.

It's better to agree that caregiving is a two-way street. When half of the couple is disabled, people outside of or less familiar with the relationship tend to view the nondisabled person as the caregiver or rather the person who does more they are complemented at the hardware and grocery store for their heroism at marrying the disabled person. Then the disabled person, as a result, is given the title of the recipient of care.

I'd argue that each person brings their strengths to the relationship and don the mantle of a caregiver based on their skillset. I am the disabled person in my marriage. For the better part of our life together, I have pushed myself past the limit, often to my detriment, to hold up my end of chores, responsibility, and caregiving. For example, when my husband and kids got sick, I took care of them, but there was no one to care for me when I subsequently became ill. My husband went back to work because he had recovered.

My husband does hold up his end of the chores. He indeed does more than the stereotypical husband and father, but for quite some time, the gap between what the two of us could deliver chore-wise and what he could provide to me caregiving-wise was filled in by a Personal Care Assistant.

We had a very delicate balance between care, cleaning and kids. But as I began to need more care, my Personal Care Attendant was less available, and with the pandemic, we were uncomfortable with the idea of bringing a new person into our home. This has been a very stressful time period for my husband. His role expanded to a Personal Care Attendant and more childcare duties like driving, helping with the laundry, cleaning and outside chores.

I was still handling the mental load of running the household. The hard part was that if my body was not cooperating, I needed him to help me with personal care things that he never had to help with before. He was now helping me with getting dressed and transferring off the toilet or into the shower. Lacking the additional helpful adult, and with my help being inconsistent, it became harder and harder to keep the house clean, and the laundry is done.

The downtime was nonexistent for both of us, which led to tempers becoming shorter and words growing harsher faster. One of the ways we held it together during an argument was to remind each other that we were doing this together. We also had to talk about our expectations which weren't meeting reality. We were both in very frustrating positions. He was frustrated having to carry more of the load than he ever had and not knowing when or if the end was in sight. I was frustrated by the reduced level of care I was receiving and the fact I couldn't do it myself at the time. One of the questions he kept asking me was, "When are you going to get better?" I pointed out that I needed time outside of the house for Physical Therapy to get in better shape to be able to perform my activities for daily living and support those of the family.

Time has been our saving grace, time alone to be individuals, time as a family to have fun with our kids, and we're working out times to have couple time. It seems like time and consideration are helpful when faced with the frustration of having and being a caregiver.

This blog was submitted anonymously by a community member.

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