As Han Solo in Star Wars once said, “Sometimes I even amaze myself.” This is true of me as well, although I’m not a spaceship pilot who rescued a princess from an ominous Death Star.
For six years, I cared for my late husband Bill, who was totally blind and partially paralyzed. He was nineteen years older than me. When we met, I was in my forties, and he was in his sixties. When we married in September of 2005, he was walking, albeit with a cane. Three months later, he suffered the first of two strokes that confined him to a wheelchair for the rest of his life. I’m visually impaired, so how did I bathe, dress, and feed him and transfer him from bed, to wheelchair, to recliner, to commode?
I doubt it would have been possible without the help and support of Laura Andrews, the occupational therapist at Sheridan Manor, where Bill spent nine months after his first stroke and another couple of months after his second. She didn’t say, “I don’t know how you can do this if you can’t see.” Instead, her mantra was “Let’s see if we can figure it out.”
For two months before Bill came home in September of 2006, she worked with us every day on dressing and transferring him from the bed to the wheelchair. Because of my limited vision, figuring out how to do these things was a challenge, but she was patient. We tried one technique after another until we finally found ways that worked.
She suggested to a local carpenter ways he could modify our house for wheelchair accessibility. When that was done, she came home with us to work on transferring Bill from the wheelchair to the recliner and commode and vise versa as well as between the bed and wheelchair. She also gave advice on toileting and other personal care issues. When Bill suffered his second stroke in 2007, we did it all again, but this time, Bill was only in the nursing home for a couple of months. I must admit there were times when Bill landed on the floor, but fortunately, he was never seriously hurt, and no one questioned my ability.
My caregiving feat would also not have been possible without the services provided by the Sheridan Senior Center’s Help at Home program. An aide came to the house three days a week to give Bill showers because this would have been too difficult for me. Not only was I grateful for the extra hands, I also appreciated having another set of good eyes around to notice lesions, bruises, or other medical issues with Bill about which I might not have known due to my lack of vision.
Day Break, the senior center’s adult day care facility, was also helpful. While I attended water exercise classes and a weekly poetry class, I didn’t have to worry about him being home alone. However, two weeks after Bill started attending the program, he said to me one morning, “I don’t want to go there anymore. It’s a baby-sitting service.”
I was flabbergasted. Yes, Day Break is a place where caregivers can leave their loved ones in a safe, friendly environment. They can watch television, play cards, and do just about anything else they can do at home, or they can participate in group activities. Having been a social butterfly, at least before the strokes, Bill enjoyed visiting with others and playing cards, so I thought he would have a great time there.
However, he assured me he could manage at home alone for at least a couple of hours, although he couldn’t get to the bathroom by himself, not to mention get out of the house in case of fire. He wore a LifeLink necklace which allowed him to call for help in an emergency. Although I was nervous about leaving him home alone, he turned out to be right. When I came home, I often found him with wet pants, but that was the only casualty. I eventually got a cell phone so he could call me when I was away from home. This gave me even more peace of mind.
Big Goose Transit was also a big help. Their friendly drivers came to our house and drove Bill and me to Day Break, physical therapy, doctor’s appointments, and anywhere else we needed to go. Because of my limited vision, I had difficulty attaching pedals to Bill’s wheelchair so he, in it, could be loaded into their vehicles more easily. Drivers were only too happy to accomplish this task, since it only took someone with good eyes about a minute. We eventually bought a wheelchair accessible van so my father and others could drive us on weekends, evenings, and holidays when Big Goose Transit wasn’t operating. You can read more about how I amazed myself in my new memoir.
Being a caregiver can be a challenge, even with good eyes. If not for the support of others, Bill would probably have spent the last years of his life at Sheridan Manor. He might not have lived as long. Despite his paralysis and the difficulty I had caring for him, we spent six happy years together. That’s amazing.
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Note: a portion of the above article appears in the November 5th issue of The Sheridan Press, my hometown newspaper.
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We Shall Overcome
How to Build a Better Mousetrap: Recollections and Reflections of a Family Caregiver
That’s Life: New and Selected Poems
My Ideal Partner: How I Met, Married, and Cared for the Man I Loved Despite Debilitating Odds
Click to hear an audio trailer.
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