Maybe it’s a Midwestern custom, but friends keep asking me if I had a good summer. Every time I’m asked this question I want to groan. I’m my disabled husband’s primary caregiver and, for us, summer is like any other season of the year. There are no changes from our normal routine.
My husband is wheelchair-bound and just developed asthma. Although a paid caregiver comes for two hours each morning to get him up, I’m in charge of daily plans, medication management, making medical/dental appointments, driving him to these appointments, home/garden maintenance, our household budget, and paying bills.
Did I have a good summer? Well, we didn’t go swimming or fishing, didn’t fly to Europe (I’m lucky to get to the grocery store), or take a long road trip because my husband can’t do these things. However, we did enjoy the warm weather, summer rain storms, watching birds come to the backyard feeders, dinners with family members, and reading stacks of books.
By these standards, our summer was stellar.
From the outside, caregiving looks pretty straightforward. We provide the basics for our loved one—a safe home, comfortable bed, decent bathroom, delicious, nourishing food, and interesting activities. But as Gail Sheehy notes in Passages in Caregiving, “The world of caregiving is initially as foreign to most people as life on another planet.”
We’re not just on another planet, we’re in deep, craggy trenches. To Do lists keep getting longer, we don’t get enough sleep, lose touch with friends and feel isolated, work our way through the insurance maze, juggle funds constantly, and worry about spiking health care costs. Stress is part of life. If you’re caring for a disabled loved one, as I am, or caring for a chronically ill loved one, you understand this stress.
Caregiving doesn’t guarantee happiness. Your loved one may complain about the food you prepare, for example. I fix tasty, colorful meals for my husband, but he can’t taste them. The medications he takes have dulled his sense of taste. Coming up with activities for him is also a challenge. Today, I’m driving him around town in our used wheelchair van to see new construction sites. We live in Rochester, Minnesota and the city is booming. He is looking forward to the tour and it will get him out of the house.
How do I answer the question, “Did you have a good summer?” Instead of giving a lengthy explanation, or going into health care specifics, it’s easier to smile and say “Yes.” I’m spending my days with the husband I love so much.