My husband is disabled and I am his caregiver. After months of searching we finally bought a used wheelchair van. While we were thinking of buying a wheelchair van we were also thinking of the places we would go. I took my husband out for his first venture into the community, an exciting event after being hospitalized for eight months. We went to the barber shop, a discount store, and out to dinner.
Much as I hate to admit this, on the way home from the discount store I started to cry. “I’m getting tired,” I said to my husband. My arms ached from reaching for the tie-down strap next to the driver’s seat. My back ached from bending over and securing the tie-downs to my husband’s wheelchair. I wiped tears from my eyes and added, “I’m sorry I’m not a perfect caregiver.” Why had I said this?
In the past, we relied on a wheelchair taxi service for transportation. Now I was the taxi service, another job to add to my growing list of tasks. After I returned home, and put my feet up, and rested a bit, I felt better. Nobody is a perfect caregiver and striving for perfection is a waste of time. I wondered why I was so hard on myself. One reason is that my husband has been through so much – three emergency operations, a spinal stroke during surgery, resulting in paralyzed legs – and I wanted to make his life better.
my husband has been through so much and I wanted to make his life better.
Age may be another reason. Judith Viorst writes about aging in her book, Necessary Losses. She says we aren’t merely aging, we are adjusting to society’s view of aging. Elderly people are, “for the most part—perceived as sexless, useless, powerless, out of the game,” she explains. The isolation of caregiving is a problem for me and my husband. I rarely see my friends and he rarely sees his colleagues. Thankfully, we are still fascinated by each other and more in love than ever.
You probably have discouraging days, times when you fall short of your goals, and think you’re not a good caregiver. What can we do?
We can increase self-care.
Sleep and diet affect thinking. Every morning I get up at 3 a.m. to help my husband. Sometimes I go back to sleep and sometimes I don’t, so I am trying to take more naps. Like me, you may take naps to catch up on sleep. Instead of eating on the run, you may eat balanced meals and healthy snacks. Self-care also includes spiritual care, which may include meditation, prayer, and attending religious services.
We can focus on the big picture.
Nancy L. Mace and Peter V. Rabins, MD, in their book, The 36-Hour Day, write about helpless feelings. According to the authors, it isn’t uncommon for family members to feel helpless, weak and demoralized when dealing with a chronic illness. “Things often seem worse when you look at everything at once,” they explain. Instead of obsessing about small things, we can focus on the big picture, and change the things we can change.
We can do things that make us happy.
Well-meaning friends told me I would have to give up my writing career to be a caregiver. Just the opposite is true. To be a caregiver I need to continue the career that brings me so much joy. I am blessed to be able to work from home and have my articles and books published. You don’t have to give up on yourself to care for your loved one. Chances are your loved one wouldn’t want you to do this.
Mace and Rabins describe isolation as a miserable feeling and I agree with them. Isolation is a fence around our lives. I am opening a gate in the fence by attending more social events and giving workshops. Church friends have offered to come and stay with my husband so I can have a break. Relatives, friends, and members of your church may be willing to stay with your loved one for a while.
Though caregiving can seem like a single journey, it is one you share with your loved one, and millions of caregivers across the nation. Connect with other caregivers by visiting the forums on this website. Join a caregivers’ support group. Have coffee with a friend. Read books about caregiving. Nourish your body and spirit on this journey of self-discovery and love.