February 5, 2017

Mom is seeing people who aren’t there. She’s been shouting all morning. There is no “guy” in her room, but she is now shouting for the cops, for Rob, for me. I tried holding up a sign earlier on which I had typed, “PLEASE BE QUIET. ROB IS SLEEPING” to little avail. Eventually, Rob awoke.

Rob says, There is no guy!

Mom says, Well, who is he?

Me, There is no one here!

Mom persists, Please Rob help me. How did he ever get into this house. Could you tell him to go.

We have done our best. But it’s not working. I am tired. My temper is short. This is really why we need outside help. Caregivers need perspective. We need to be drawn back. We need to be calmed down. We need to be reassured. We need time to heal.

Mom needs assurance, too. And I am not in the position to give it to her when I am exhausted and frustrated.

If the only recourse is the nursing home for respite care, it’s a mighty poor recourse. The last place we went to was dark, dank, and not very clean. Mom’s roommate was a morbidly obese woman who stank to high heaven. She was only 50 years old and had been in nursing care since she was 39. When I searched for mom’s shoes last time I was preparing to take her home, I found them under her bed on a floor that had not been cleaned in ages, if ever. The bathroom in their so-called suite was filthy. The toilet seat was caked with feces. And two of mom’s nightgowns were missing. I assume her cries to go to the toilet were unheeded and her clothes became too badly soiled.

So there is no recourse at this end of the short stick. Even the most expensive nursing home has its limits. The best are good only until you actually need care. For those who can afford one of the so-called “top-drawer” homes, you are provided transportation to concerts and other events, Zumba and yoga classes, financial advisors, hairdressers, barbers—you name it. But when medical care or personal care is required, all bets are off. They are all woefully understaffed. Here in my home, there are two of us who care for mom, plus a variety of assorted CNAs, LPNs, and RNs who pop in from time to time. And still, this is difficult. So I cannot fault the institutions that purport to offer care.

Where dementia is concerned: Abandon hope all ye who enter here!