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They Said It Couldn’t Be Done, We Said, “Watch Us”
After a devastating diagnosis and a nearly tragic hospital stay, a family redefined its approach to caregiving.
By Janice Mosher via Well Beings Share Your Caregiving Story
My husband has injury-related dementia and Parkinson’s. During the early years, while he was in a manageable condition, I was able to care for him. My mother, who lived to be 105, was in an assisted living facility, and though I didn’t have to do direct care for her, she was emotionally dependent on me, so I made the 130 round trip drive weekly to be with her. Once she passed away, I knew I needed to concentrate more strongly on my husband, who was falling frequently, and because he also has a blood clotting disease, these falls often landed him in a hospital. My family did not live anywhere nearby. So, after living 59 years in our home in Michigan, we sold it and moved to Manitowoc, WI to where two of our children live.
After a particularly bad fall, my husband was hospitalized with a brain bleed. This was during the COVID pandemic, so they did not allow me to stay with him, which led to a behavioral situation in which he was given a drug that made him violently ill and unable to speak coherently. A few days later, he was sent to a nursing home without the prescription he regularly took for blood thinning. Within two days at the nursing home, his legs turned black and hard and cold, and on my absolute insistence, he was sent back to the hospital, where they told us he might have to have his legs amputated. However, they finally got a pulse, and he was spared. After a few days, they said he could go back to the nursing home, but we told them we would bring him home and care for him there. They said it couldn’t be done, and we said,” Watch us!” That was 5 years ago.
My husband cannot walk, although his legs are strong. He can stand for a few minutes holding on to a post and a grab bar. His balance is non-existent. He has a 20-minute memory but quite good long-term memory and excellent verbal skills. He is incontinent. An aide whom we pay comes every morning and washes him up and dresses him, and she and I sit him up and, with the help of a sit-to-stand transfer, him into his wheelchair. She leaves, and I fix his breakfast, and then one or the other of our daughters comes ( every day except Sunday) and works with him for 31/2 hours. They do exercises with him, take him outdoors ( even in the winter if it’s possible) in his wheelchair, do art, brain games, whatever will encourage brain and body action! They are phenomenal! His neurologist told me that nothing he could give him in the way of medication could do what our daughters do! After they leave, I do a few more activities, and while I fix supper, he watches TV, which is the only time during the whole day it’s on until evening. The aide returns in the evening and helps me get him ready for bed and into bed, but my daughters are always ready in case the aide is unable to come. My daughters are retired, but they are married and have other interests, so I don’t quite know how they do all that they do.
If I become ill or die( we are both 87 years old), he will be put into a nursing home, but I’m sure they will be there much of the time also.
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