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.
I get variations of this all the time. My father is 85 and getting more dependent on me as time passes, we have been raising my youngest niece, who has autism since she was 8, My sister is disabled and is often not able to drive and my older niece has mental illness including anxiety and depressive disorders. I am also disabled and we are barely making it financially and the caregiver for all 5 of us. So simple questions like did you go watch fireworks (Fourth of July) Well there are 3 of us with mobility issues and 2 can’t walk on uneven ground, 3 can’t do loud noises or crowds and 2 can’t handle bugs especially bees or mosquitoes. So no, no we don’t go to fireworks displays. Because of our financial issues limiting what we can do or go, the number of us with anxiety and depression and that our issues often class often my answer is ” If we come out with the same number of people we started with, it’s been good.” Most of the time they think I’m kidding. I’m not! So many holidays, even holy days are much like any other day. Days like Thanksgiving, Christmas and Easter are even harder because the holiday meals are up to me. They have become much more simple over the last years as my abilities have worsened. Spring, Summer, Winter, Fall one day, one month, one season all kind of blend in. We work on a irregular schedule but a tight routine. Things have to be done in a particular order. Doctor and therapy appointments have to be juggled within that routine. When you are a full time caregiver, especially for multiple people you find yourself more and more isolated. With our financial problems even going to do “free” things aren’t possible because you have to figure in the price of gas to get there. An extra trip or an increase in gas prices can blow a whole in a budget.
My summer was basically the same as my winter, only warmer.
The truth is always good. If it’s not what they want to hear, they should walk away. 🙂
I see the positive side as there could always be worse
I give them a blank stare. Especially if they ask where I went for vacation. And these are the doctors!
I say one season runs into another, the seasons change but my life don’t. I care for my husband and if he is here then the day, week, month and seasons are good. Its a blessing from God