Shit

Last week, my dad checked my mom into a Memory Care Unit for her Alzheimer's disease.  He has been attending Alzheimer support groups for a few years, and they told him "You'll know when it is time to put your loved one in a home. You will know."

I had a hard time swallowing this advice. While I agree that different people have different thresholds, people need some guidelines to consider. Maybe for some people it is when their loved one doesn't sleep through the night, or they sleep all day. Maybe it is when they leave the house and wander off every time their caregiver takes a shower or goes to the bathroom. For my dad, the final point was when my mom lost control of her bowels. This is not intended to humiliate my mom, but rather to show how this disease demeans and dehumanizes those afflicted, and how difficult it is for the caregivers. We are not talking about a bed bound person who can use a bedpan. We are talking about someone who has become functionally a toddler.

At this point, my dad determined the level of care she need was beyond his ability to provide.  Not that he wouldn't have cared for her, but he couldn't maintain proper level of cleanliness or hygiene for her to be healthy.  She wouldn't shower or brush her teeth. Her mouth started to stink, so he gave her some mouthwash, which she then drank. She had gotten a urinary tract infection, which was probably hard to him to figure out she had in the first place, so it probably was worse than the typical UTI all women get once in a while. She wouldn't eat what he prepared for her. When they'd go to restaurants, she'd forget what she ordered and want something different when the food arrived.

"I was happy to take care of her," my dad said, "but she wouldn't let me. And I didn't know how."

My dad hired a woman to come in a few times a week to help her bathe.  My mom was agreeable with the home healthcare worker and would take a bath. This woman would bring tacos for my mom, and my mom would eat them.  All of this was good, but the bowels did my father in. The healthcare worker wasn't there 24/7. My mom wouldn't let my dad help her, and she needed help.

"It was for own good," he said with remorse, relief, guilt, and optimism. "She is happier now." And clean. And busy and social.  The place she is staying has activities like baking cookies three times a day. The food is good and she is eating. She is now getting a level of service and attention that he was previously unable to provide because, ironically, he was too busy taking care of her.

My dad said my mother had also been depressed. I talked to him during the Winter Break before he put her in a home. When I asked how it was going, he said "Fair to poor."  My father is an eternal optimist.  "Fair to poor" means the seventh circle of hell for a normal person. It wasn't until after my dad put her in a home that he told me she lost control of her bowels.  No wonder she was depressed. I'd be depressed, too.

The hard part about Alzheimer's is the middle, the slow and tedious transition between the beginning and the end.  In the beginning, the person is just forgetful, but is still themselves.  In the end, they don't recognize anyone and need total care. Getting between the beginning and the end must have been torture for my dad. And he tried.

My dad is getting his life back.  He is finding dozens of things that had been neglected, like the furnace, one of his cars, and his teeth, among other things. He feels relieved and he misses her.  While things are finding a little bit of equilibrium, the fact my parents have to go through this at all is horrible, an exercise in suffering for all parties.