My sister doesn’t want to walk. I don’t mean she wants a rest. I mean she really does not want to walk anymore. She wants to live out her days in a wheelchair. Preferably a power chair, since she can’t maneuver the manual one she’s been using.
As I’ve mentioned before, my sister, Bonnie, is mentally handicapped and mentally ill. My only sibling, she’s older than me, and now that our parents are gone, I am her guardian and she is my ward. I also have power of attorney for her healthcare decisions, but lately I’ve been feeling pretty powerless.
For most of her life, Bonnie got around just fine. She either walked or took the city bus wherever she wanted to go. She worked for years, on her feet for hours at a time at the sheltered workshop. Her main diagnosis is bipolar disorder, but I’ve only seen her manic, never depressed. I learned to tell when she was manic by the way she looked. Mania was the No-Fail Weight-Loss Cure everybody’s looking for. Do everything at double speed, and you, too, can slim down fast.
When she’s manic, she gets into trouble. She’s been arrested for calling 911 too often. She was the prime suspect in the mysterious shearing of the resident cat’s whiskers at her last apartment complex. When they evicted her, she was committed to the psych ward and we hauled her stuff into storage. That was the end of her independent living. She landed in a nice eldercare home, where, to my relief, her days became much more routine, and she got her meds on time.
Unfortunately, it didn’t last. Despite the best attentions of her case manager and the aides at the home, she went crazy again. No one knows if it was the string of unexplained infections that began to plague her, or jealousy over the addition of someone new to the house, someone who was her friend. Peggy was cheerful and sweet, the way Bonnie can be, when she feels like it. But what she felt like now was mean and loud and belligerent.
In the meantime, she began to change physically. She gained weight, mainly because she stopped moving. It didn’t bother her. She became bent over, no matter how many times we urged her to “stand up straight!” She claimed to have arthritis in her hips. She saw a string of doctors, and all of them declared there was no reason she couldn’t walk. Still, she preferred to spend her days in a chair, in her room, watching TV. When she saw commercials for scooters (“Medicare will pay for it!”) she told me that was what she wanted for Christmas.
It became increasingly difficult to get her into and out of a car. When we came to visit, I liked to take her for a ride – down to the river, out past our old house, over to Whitey’s for a sundae. But it became so difficult, we restricted rides to once a year, when my husband and kids would visit to take her out for a birthday/Christmas lunch. (She was born on 12/24). Even with both my son and my husband helping her, it was hell getting her into the car, and if there was even one step between her and the entrance to the restaurant, there was hell to pay.
I don’t know. Maybe she was in pain. All I know for sure is that suddenly I was buying her size 3X clothing, and having to constantly change the subject when she demanded a new walker with a seat, or a fancier wheelchair. The CNAs who took care of her began threatening transfer to a nursing home, and she ended up in one after a knee infection that wasn’t healing in the hospital.
That, I guess, is where she decided that life in a wheelchair wouldn’t be so bad. No amount of reasoning – about never walking again, about getting bed sores – would persuade her otherwise. My husband had said he didn’t think she would age well, but I never expected this.
Finally, the group home’s administrator had her committed to the psych ward again. Once again, the hospital didn’t want her for long. Thank heaven for social workers, because one of them found a new place that took her in and seems, so far, to be a good place. The only problem is, it’s three hours away, in Keokuk. But if she’s happy (or at least not screaming bloody murder) and if they keep pushing her to walk, then that’s the best we can hope for.
I look at old photos of Bonnie, of us together – the normal-looking girl and the new baby – and I wonder, What happened? She was so slim, so pretty, so full of pep and personality, at least when she wasn’t embarrassing me with her rages. And now she wants a wheelchair. And a catheter. What she envies is what she saw at the nursing home, and nothing I say can change that. I keep trying, though. Stubbornness runs in our family.
In mid-July, I had major surgery. I’ve been back at work for several weeks, and finally resumed yoga classes. What a joy. What a wonder, to feel what my body is again capable of. I nearly fainted during Upward Salute, but next time will be better. For weeks, I was in a lot of pain, but I kept walking up and down the stairs, and got back on the treadmill as soon as my doctor said I could. A body that works is worth fighting for. If only I could get my sister to fight for hers.