House Of Ghosts

Last week, my mother moved further away from us, both literally and in spirit.

Over the last month, my mom’s health has deteriorated as Alzheimer’s continues to consume more of who she is. Mom has been living in an assisted living facility since January but she was moving to a status where she needed more than just assistance, she needed more direct and continual care. The area hospice was helping as best they could but they and the assisted living staff were being outstripped by the requirements to maintain my mother’s health and well being.

The family once more faced an agonizing decision. About a year ago, it was becoming more and more apparent that my mom could no longer live on her own. Efforts to provide her with company and care within just the family could only extend so far. I was paying for an in home nurse to come in but that was just for a few hours a day. Her doctor was adamant: she needed someone with her 24 hours a day. And since her insurance wouldn’t cover 24 hour in home care and sadly neither I or anyone else in the family could afford it, we had no choice but put her in a home. 

It was a mostly family decision but as her son, the final say so fell on me. I knew in my head what decision I needed to make. I knew in my heart I did not want to make it.

And now I was being asked to make it again.

Patients and staff at the assisted living place had come to know my mother and they liked her and my mother came to know and like them. I didn’t want to uproot her from that. And also, I did not like where she was going.

I should clarify that the new place is in so many ways superior to her assisted living home. The building is bigger with nicer amenities and a larger staff to give more and frequent attention to their charges. No, the place in and of itself a nice and well run. But it was the nature of their business, the reason why my mother had to go there, that made me not want her to go.

I was asking my mother to live in a house of ghosts.

Nursing homes that cater to elderly patients suffering from Alzheimer’s and dementia can’t help but be places of despair, even under the kindest, most compassionate guidance. These are patients with a condition that is only going to get worse, never better. And it’s a condition that steals away what makes a person unique and special before it finally takes their life.

One of the earliest warnings I got a few years back that something was wrong with my mom were reports from my family that she was having trouble remembering names. My first reaction to that was, she’s ALWAYS had trouble remembering names. When I was a kid, she had trouble remembering my name.

We would be on a drive somewhere, my dad behind the wheel and my mom at his side while I hung out in the back seat. Back when I was a kid, cars were bigger so the back seat was like a playground, particularly since we didn’t bother with seat belts. On occasion, my mom would need for me to behave myself in this automotive playground.

“Settle down back there, Roy.”

My name is not Roy. I should also point out I was the only person in the back seat. But the confusion wouldn’t end there.

“Settle down back there, Roy… Sammy… Roger… Monroe… Mark… Bobo… ” (Bobo was our dog!) “Dusty…” (our cat!)

Eventually, she would get to my name. But then she forgot why she was talking to me in the first place.

That was when we were both much younger and we both had a larger share of marbles than we do now.

Now, I’m behind the wheel and I’m driving my mom through the countryside to the next destination of her journey. We’re talking about this and that and for a moment, I can almost forget that my mom is old now and losing her mind. But then she casts an eye towards the back seat. The seat is partially filled with some of her belongings.

“Do you think there’s enough room back there for David?” she asks.

I’m taken aback a bit. Who, I wonder, does she think is driving this car? Is it possible she doesn’t see me but sees someone else? My dad?

“I’m sure there will be enough room for… David.” I pause just before saying my name. I wait for her to look at me as if I’ve most MY mind and ask me what I’m talking about, I’m David. 

But no.

“Well, you know how David likes to hang out in the back seat. I just hope he has enough room.”

“I wouldn’t worry about it,” I answer quietly as I keep on driving, eyes on the road ahead.

But I allow myself a slight smile. Because joy can be so hard to find and you take hold of it where you can. And in this case, I can’t help but think:

Mom got her son’s name right on the first try.

And we continued our drive towards the house of ghosts.