This is my 19th year of caregiving and I can hardly believe it.
After a series of mini strokes my mother developed memory disease. I was her family caregiver for nine years. In 2007 my twin grandchildren’s parents died from the injuries they received in separate car crashes. The court appointed me, and my husband, John, as the twin’s guardians/caregivers. We did this for seven years.
In 2013 John’s aorta dissected. He had three emergency operations and suffered a spinal cord injury during the last one, which paralyzed his legs. John was hospitalized for eight months and finally released to my care. I’ve been his caregiver for three years. While my past caregiving experience has been helpful, caring for a disabled person is different, and comes with its own challenges.
For example, venturing out requires detailed planning. I have to check the weather, dress John appropriately, jockey the cars, move our wheelchair van into position, help John roll aboard, and secure his wheelchair. I feel like I’ve done a day’s work before we’ve left the house. Yet once we’re underway I feel good.
Recently John offered to help me with grocery shopping. “I know where many items are and could bring them to you,” he explained. His offer came from love, yet I wanted to groan. Much as I love his company and conversation, grocery shopping would take longer than usual, and my day was already crammed with tasks.
Still, John needs to get out and about. One time we went to a home improvement store together and John had a ball. “I haven’t been in this store in years. Everything’s changed,” he declared. John marveled at the displays, examined new products, and had so much fun you would think I’d taken him to a theme park. For John, home improvement stores are a theme park.
Another time I took him to the new Aldi’s grocery store in our neighborhood. For me, this was an ordinary shopping experience. For John, it was a revelation, and he loved seeing the array of goods. He examined the produce, peered into frozen food lockers, and lingered at the odd display of products in the center of the store, everything from shower curtains to pliers.
These experiences have taught me an important lesson: Our loved ones need the ordinary stuff of life. Grocery shopping. Folding clothes. Baking cookies. Things we think of as ordinary can be extraordinary for loved ones, especially those who are disabled. This realization made me wonder if family caregivers are missing benefits of ordinariness.
In her book, The Gift of an Ordinary Day, Katrina Kenison tells how she slowed down to the rhythm of life, the “days when nothing momentous happens, no great victories are won, no huge disappointments suffered, no milestones achieved.” According to Kenison, these are the only days we have, “days in which we simply attend to the humble business of life.”
It’s taken me too long, but I finally get it: John missed ordinary things. So I’ve changed my routine. When I have to run errands, I tell him what they are, and ask if he wants to come. If he comes along I don’t rush him. Why rush? Now that we’re in our eighties, ordinary days are numbered. We’ve vowed to enjoy every one, and the miracle of being alive.