The very word "caregiver" implies that someone is looking out for another person. We caregivers are doing just that. However, within this process we have many gray areas to face. What, exactly, is the best way to care for our loved ones at any given moment?
Even professional caregivers face these challenges, but they generally have a "best practices" guideline to follow, if not an actual law. For family caregivers, it's not quite so simple.
My dad was a prime example. He'd had brain surgery to correct the effects of a World War II injury. The surgery should have been successful, but for reasons we'll never know, he came out of the surgery with severe dementia. We, the family, were thrown into strange new territory in a heartbreaking instant.
Dad was extremely independent and he was determined to get well. The problem was, he had no idea how sick he was. He had picked up, through the surgery, a voice in his head we came to call Herman. Herman would tell Dad things and to Dad that was just as real as when one of the family or staff at the nursing home talked to him. At times, he'd even hush us so he could listen to Herman.
Dad had always been bookish and non-physical, but after the surgery he demanded we bring him light hand weights so he could exercise. He was trying to "get well." This was good for him and we were delighted to provide them.
He also, on days he was alert, would decide he could race his walker up and down the hall at the nursing home. The exercise was good for him, and if he was, indeed, having a good day, there wasn't a huge danger. But on days when the fog took over his brain, or worse, Herman ruled, his independence was not good.
While restraints are illegal in most nursing home situations, and the old ways of tying people down or drugging them into oblivion are thankfully over (in most cases), there are times when it's safest to try to keep someone sitting in a chair or keep them from climbing out of bed, unaided.
When Dad was foggy, he could not safely use his walker alone. He needed help. But he wouldn't wait for help. The home tried putting a tray in front of him for his food across the wheelchair which he needed on those foggy days. But dad would panic and scream for them to take it the tray away. He felt trapped. That small attempt to keep him sitting would have worked for many people - it was simply a tray some people liked to have, so they could play cards or put their food down in front of them. But not Dad.
The staff tried a bed rail to keep him from falling as he tried to get out of bed at night, but he'd try to climb over it. Again, he felt trapped. Falling from climbing over the rail was far worse than rolling out of bed, so that was taken down.
Then, they tried alarms. They pinned a little hook to his shirt, and when he tried to get up, the pin would pull and set off an alarm. The staff would hear the noise and they'd come running. However, he hated that, too, and I don't blame him. Whenever he'd move, the chain from his shirt to the alarm would pull the trigger and it would shriek. He couldn't seem to move at all without someone running to help. Again, psychologically, it was hell for him.
We had many meetings with the staff, and finally had to surrender. We knew Dad would get hurt when, in a fog or ordered to do so by Herman, he would grab for his walker and just grab one side, struggle out of his chair, and tip over. We knew he'd pull the cord in the bathroom to let the staff know he was done and wanted to get up off the toilet, but then he'd just grab his walker by one side and get up, without waiting for help. He'd even try that with the wheelchair sitting in front of the toilet. We were "bested" by this determined man. We had to give up.
We knew he'd get hurt without some type of restraint. He did. He broke a wrist in one fall and a hip in another. However, we also knew that horrible as this was, it wasn't nearly as bad for Dad as the alternative, which was to restrain him. The staff, and we agreed with them, refused to drug him so he was "manageable." None of us, including the staff, could stand seeing him in the psychological agony he went through with the gentle restraints they had tried. So, we made a difficult decision and had to live with it.
None of Dad's injuries killed him. His dementia finally took his life. The decade he lived with dementia was horrendous in many ways, but in my opinion it would have been worse had we insisted on his physical safety as opposed to his mental wellbeing. Everyone has to draw the line where they feel the most comfortable. As I said, the area is very gray and mushy. But we know our loved one's personalities. For Dad, I still feel we did the right thing. Some will disagree, but they didn't know Dad. I feel for all caregivers given these imperfect choices. It's very, very hard.
Published On: January 10, 2010