As my caregiver duties increase, I need to let other things go
It's important to recognize my own needs and limitations
In the field next to our home, a stand of more than 100 Fraser firs provide boughs for my wreath-making operation. It’s a good seasonal gig for me because it’s flexible. Since I take care of my husband, Todd, who is paralyzed due to ALS, I can’t work outside of our home unless I hire caregivers, and that doesn’t make financial sense for us.
Fraser firs used for wreaths. (Photo by Kristin Neva)
I collected and crafted accent material during the warmer months. I found beautiful spruce cones at a nearby park. They were sappy, but I did a little internet research and found out that I could bake them at 250 F for about 15 minutes to harden the sap and create an amber sheen. I stripped white bark from fallen birch trees, cut them into strips, and formed them into rigs. I purchased wired ribbon material and tied bows. Two weeks before Thanksgiving, I started clipping boughs and making the actual wreaths.
I needed to squeeze in those activities here and there because caregiving for Todd takes a lot of time.
My routine of washing Todd up, getting him out of bed, giving him coffee and feeding him breakfast, and setting him on the toilet takes most of the morning. I get him set up on his computer and place his noninvasive ventilator mask over his nose. I then tackle household chores like dishes, laundry, and, lately, snow blowing.
One of my wreaths. (Photo by Kristin Neva)
Todd calls or texts me when he needs me to scratch itches, adjust his glasses and arms, wipe his eyes, help him use the bathroom again, or help him cough. And then it’s time to make lunch and feed him again. After lunch I might have a couple hours to work on wreaths, depending on Todd’s needs, and then I need to pick up our son from school and make dinner.
I’ve been feeling overwhelmed the last couple of months, in part because I’ve been dealing with my own health problems, but the biggest issue has been that Todd’s care has been more demanding as his ALS progresses and we’ve had less help.
The agency that used to send a semiweekly shower aide is short-staffed and hasn’t been able to provide Todd with a weekly shower at all. And we’ve struggled to fill a schedule of nighttime caregivers.
More of Todd’s care has been on me.
I told my daughter that I feel like I’m missing out on income because I didn’t promote my wreaths as much as in the past and sold fewer wreaths this year.
“Does it feel nicer?” she asked.
The question made me pause and reflect.
I like doing creative work because caregiving gets mundane, and I like earning money for my work. But it also feels nice to do what I can to care for myself and recognize my own needs and limitations.
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