In my family of origin, there was no uncle and there wasn’t a backroom. However, as my grandfather aged and moved from being able bodied to disabled, he became that uncle and the backroom became a very real and horrible place. Being a caretaker to a family member who is aging or disabled can be a difficult task in the healthiest of families, but it can be done well. When the disabled person lives in a family plagued by untreated mental illness and abuse, it can be horrific.
My grandfather was first diagnosed with diabetes the year before I was born — soon after his father, for whom he had been a caretaker, died. I don’t know the details of my great-grandfather’s illness or his relationship with my grandfather. My grandfather never knew his mother, as she’d died before he’d reached the age of three. There is a family story that she’d died soon after her two brothers — her only immediate family — had been lynched for trying to register African-Americans to vote during the 1920s. The story was that she died from the grief of that loss. My grandfather always had an air of sadness about him.
For most of my life, he was very active. He had worked primarily as what we would today call a nursing assistant. Wanting to remain active upon retirement, he worked as a gardener for wealthy white people. During school breaks, he’d take me to work with him. I remember watching him clip hedges, till the soil, and engage in hard, back-breaking work. He knew he’d worked a good hard day when his clothes were drenched in sweat. He took pride in that. He also tilled the small plot of land behind his home and recruited me to plant a garden at my mother’s new home. We planted corn, collards, and other vegetables. I helped him plant flowering peach trees in the front and back yards.
A devout Christian, he was very active in the church. He joined the church soon after he moved to my hometown, in his twenties, and was a member until he died. He worked on the deacon’s board and alternated with a friend, every few years, as the Sunday school superintendent, for decades. Sundays were an all-day affair and always ended with him visiting the sick and shut-in. He and his fellow deacons also offered communion and a Bible lesson to those unable to attend services.
His diabetes never seemed to have much impact on his day-to-day life. During the 1970s and 1980s, he checked his urine every morning, as he was directed. Now we know that, by the time the “sugar” shows in the urine, the insulin levels are already too high. But he’d take his insulin and go about his day. He always a kept a little something extra to eat in case there was a problem.
It wasn’t until I was in my mid-twenties that the disease began to have a visible impact on him. By then, I wasn’t living in the same city, but would still come to visit periodically. I noticed he was moving more slowly. Then, I got a call one day that he was in the hospital. His blood sugar had spiked to the point that he should have been in a coma. At the time, he was asymptomatic. The only indication of his high blood sugar was a blood test and slight fatigue. Because he was in the “danger zone,” an ambulance was called. The doctors said his sugar could be regulated with changes in diet and adjustments to his insulin. The hospital was able to get him regulated, but his life drastically changed after that moment.
My grandmother used worry to control people. If anyone did anything to “make her worry,” her response was to demean and shame with unfettered rage. She could be physically violent. This behavior extended to everyone, including her husband. Even though my grandfather had never fainted or fallen, my grandmother insisted that he was at risk. She tended to get fixated on certain things, and there was no deterring her. All of the family had long ago learned it was better to submit.
Over the course of ten years, my grandfather was progressively isolated, neglected, and abused. It started with one of those chairs that lifts up to help someone stand. Even though he didn’t need it, my grandmother insisted he use it in case he might fall. Then, a walker he didn’t need was brought in. Even though he had long since retired from gardening as a job, he still liked to work the small plot of land around the corner from his house, along with the one at my mother’s house. Since there was no one to “babysit” him — my grandmother’s words — he wasn’t allowed to do even this.
He wasn’t allowed to drive, even though the doctor had said he still could. He desperately missed church. My grandmother, who didn’t drive, still went every Sunday. She said it was too much to get him dressed. Because of the forced lack of mobility, he became frail. The doctor suggested getting a wheelchair for him. I found that his veteran’s benefits would cover a small, secure wrap that could go over the two steps to the backyard so he could go outside. His veteran’s and Social Security benefits would also have covered a nursing assistant to come in and help with certain tasks. But my grandmother didn’t trust anyone to do the work, even under her supervision.
I was told by my mother and others not to interfere.
When I came to visit for a holiday, I saw that my grandfather was at the dinner table wearing a bib. My grandmother had made several bibs, especially for him, and taunted him by calling him “big baby.” According to her, he needed the bib because he was spilling food on himself. He was essentially bedridden, but I’d never noticed him drop a single morsel. His physicians recommended physical therapy for him, but my grandmother insisted that the exercises were too strenuous.
It got worse. Since he was a “baby,” she insisted that he wear a diaper. According to her, it was better for him to use the diaper rather than risk falling during the six-foot trek from his bed to the bathroom. At this point, he actually did need a walker to get around. One day, my grandmother left me to “babysit,” while my mother took her to run errands. As soon as she left, my grandfather looked at me and said, “I need to go the bathroom.” I knew what he meant. He wanted to actually go to the bathroom. I brought his walker to him and, with much effort, helped him stand up.
As he pushed the walker ahead of him and walked on shaky legs, I stood behind him. He was sweaty, but each step was determined and deliberate. He was on a mission. We were five minutes into the walk and three feet away from the bathroom when my grandmother appeared. She screamed, “What are you doing?” and swung at me.
“He wanted to go the bathroom,” I said.
Of course, she ran to get my mother, who came in, slapped and shoved me, and did her favorite thing — pinch the flesh of my upper arm between her sharp nails with a swift twist. They then pulled my grandfather back to the bed as he struggled against them, still trying to move forward. I was told to get out.
Shaken, I stepped out and heard my grandmother say, “You go in your diaper, baby.” My mother and grandmother cleaned him up, and they left.
I only remember my grandfather being on the brink of tears twice in my life. The first time, I was in my early twenties and hospitalized for Post Traumatic Stress Disorder. During a family meeting — which included him, my mother, my grandmother, my two aunts, and my grossly incompetent therapist — he said, “I let her [my grandmother] hold on to them too tight. No husbands. No friends. Children are supposed to have their own families. I should have done more to protect them.”
The second time was that day as he sat in a clean diaper. He moaned and said to me, “I’m tired. So tired,” as he shook his head back and forth. I took his hand, something I hadn’t done since I was small child.
Something made me ask him, “Are you afraid to die?”
At this point, his body and face relaxed, and he said, “No. My children are grown. I wish their lives could have been different, but they are grown. I believe in the blood of Jesus. And I’m not afraid. I know I’ll go to heaven.”
He took a deep, long breath in and said, “But they won’t let me. They won’t let me go.” That’s when the tears almost came. He lived for another five years, if you call that living.
I have many regrets. If someone had suggested, at the time, that my mother and grandmother were abusive, I would have out and out denied it, even though I knew that their treatment of him was terribly wrong. Their behavior was, unfortunately, so normal in my family that it took me a long time to see it for what it was and to know it could actually be stopped. I wish I had had some recovery so that I could have stepped up and gotten help for my grandfather. I wish I had been in a place to stand up to my mother and grandmother. I wish I’d been in a place to take care of him the way he should have been taken care of.
Lastly, I wish he’d been able to find comfort somewhere. Yes, diabetes is one of those illness that ravages the body like a slow burn. I have no doubt that it would have eventually taken its toll on him. But being treated without dignity is what afflicted him most.
We must be willing to adjust and make accommodations. Real or misplaced fears are no excuse to be inhumane or to hinder someone else’s ability to do the things they enjoy. Everyone can live with dignity, even when they are dying. We must remember that.
[Headline image: The photograph shows three elderly men seated in profile in front of a green background. Two light-skinned men in glasses are looking toward a dark-skinned man seated between them. The dark skinned man is smiling.]