I think sometimes that improvisors and comedians don’t quite get how important comedy is. We refer to improv dismissively as doing the “make-em-ups” as if we are just playing on the stage, spending our time doing something frivolous. Surely a life spent performing somehow just isn’t as substantial and valuable as others pursuits. Right?
My mother suffered from a form of dementia that took away her ability to speak and communicate. For the last couple of years of her life, we could not ask her questions and it seemed that she did not understand complicated sentences. In the last stages, she did not seem to comprehend language at all.
Still, she was engaged with us on other levels. We could understand how she was feeling. She seemed to recognize us and her mood often improved a little when she interacted with one of us kids or with one of the many wonderful aids who helped take care of her. If you had gotten a cut or a bruise since your last visit, she might touch that part of your body. She was a nurse after all, she needed to care for people.
I’ve had a variation of this conversation a few times. I meet someone and the topic of why I’m in Peoria comes up. I talk about the choices that my sisters and I have made to take care of my mother, to which the well meaning person I’m talking to says something like, “There will be a special reward for you in heaven.”
As an atheist, I’m really not sure how I should respond. Usually, I’m polite and nod and say nothing. Like I said, they mean well. It’s difficult to know what to say in that situation. I believe they are trying to say that I’m making a good choice by being here. They certainly don’t mean to say something awkward. Instead they wish to comfort me. They have no idea that I don’t share their belief in the afterlife or god.
I could respond by saying, “Well, I don’t believe there is a heaven. And even if there is one, I don’t believe in your god and therefore I won’t be in heaven to get my present. I’m choosing to do this because it’s the right thing to do.” However, I don’t say this because it would be a monumentally jerky thing to say given the circumstances. I think I’m already responding to it in the best way I can respond, by simply letting it slide. Still there is something about them saying it, and the underlying assumptions, that bothers me.
I don’t have a dark suit. At least I didn’t until a couple of days ago. My great uncle passed away this week, and it got me thinking about it. I’m not going to the funeral. My sister is going while I look after mom. But there was an alternative plan where I would go instead.
One problem is that I don’t have a dark suit. I don’t really have any suits, but I thought I could buy one and have it tailored in time for the funeral. But then, we switched plans, and it wasn’t necessary.
However, I am taking care of my mother, as I’ve detailed in some previous blog posts. She is still strong and could be with us for quite some time, however, things are progressing. That’s that expression they use, they being professional caregivers–progressing, not deteriorating, not winding down, not coming apart, certainly not dieing. No, the disease is progressing, another one of those perverse Orwellian twists of words that seem to cloud around dementia.
Sooner or later, I’m going to need that dark suit. I figured that I’d rather have one in the closet than have to scramble to get one when the time came. So, I headed to the local Men’s Warehouse.
I think I’m going to try to take a picture of mom every day that I’m with her from this point forward. I doubt I’ll put them all up here, but I want to take them. These are the pictures for the last couple of days:
The monkey is from one of our last day trips out. Last July 4th, I took mom to the zoo. When we were in the gift shop, she seemed to like the orange monkey, so I got it for her. Recently the monkey has made a bit of a come back and has been sharing her chair in the TV room.
When we got the monkey, the home care aide who was with us said that mom should name the monkey. I jokingly said, “Name it anything but Kevin.”
The aide asked mom what she wanted to name it, she said, “Kevin.” Then she giggled. Thanks, mom.
He comes by for a visit every week or two. He usually brings photographs, or books or other things that my Mom might find stimulating. He used to work in China and has visited it many times since he retired. So often he brings pictures of people he met or places he visited.
In the back, you can see a walker. We never did use that walker much. About a year ago, my mother’s gait began to disintegrate. In the beginning, her walk would sometimes become a stuttering step where she would end up kind of marching in place. It was as if her brain had forgotten some key step in the complicated process which is walking.
I am not a private person. I like to talk about myself too much, not because my life is so fascinating, but because I have a compulsion to talk about whatever is currently on mind, no matter how mundane. If you give me the chance, I’ll bore you with details of my latest weight loss ideas, the electronic gadget I’m thinking about buying, what I just cooked for lunch or even what size underwear I bought at Wal-Mart.
Last summer I made a series of videos about such mundane aspects of my life as going to a movie or riding my bike. And it’s not like I’m able to spin it into some amazing anecdote. I’m sure if a random person comes across those videos, they will most likely watch it, shrug and say, “What was that?”
Sometimes I think I just never outgrew that stage in life when you come home from school and say, “Mommy, mommy, look at this picture I made at school!” as I hand over this pathetic still life made from shapes of colored paper, crayons and glue.
What’s most difficult about this now is that many of the details of my life revolve around illness and family. The details are mostly private and should be. Many of the things I do feel like sharing, should really be saved for personal conversations, not public postings on the web. But still I do want to share a few things. I can’t help myself.
Watching my mother slowly come apart has been a strange experience. First it was her speech. In the early stages, she was hesitant, sometimes using the wrong word to express something. She might answer a question with a yes or no, only to correct herself moments later with the right answer. Over time, her phrases became simpler and more direct and much less frequent. She still speaks, but the expectation is that she will eventually be mute.
Her emotional expressions have also been dulled by dementia. For instance, she doesn’t seem to express pain very often and you have to pay close attention to notice when she is upset or angry or happy. Eventually that too will go.
One thing that remains is her sense of humor. She loves to laugh, both at the things we do and at herself.
Last summer, I started a video journal at youtube.com which was about my experience living in Scottsdale, Arizona. I haven’t updated it in some time. I want to tell you why.
I’d left New York the previous fall to stay with my father in Arizona. He had recently been ill and wanted to spend the winter in Scottsdale. At first I just wanted to help him move and find an apartment. But as the time approached, I realized that I could use a break from NYC. I decided I would spend the winter with him. It wasn’t because I was being a good son. I did want to help my dad and it was a terrific opportunity to spend the kind of time with him that I’d never been able to do before. But I had other reasons too. My father is a poker player and intended to spend the winter at Casino Arizona playing hold’em. I had already been making a little money playing poker. It seemed like an ideal opportunity to see if I was good enough to be a pro.
It was a fantastic winter. Arizona is probably the best place to spend a winter in the states. The desert is beautiful. Nearly everyday is sunny and a day with a high in the 50s is rare. We played poker almost every day, my father’s health improved and we began talking about this winter when Dad would again return to Arizona. I decided to stay through the summer, continue to play poker and find a nice 2 bedroom apartment where my dad could join me when the weather in Illinois began to get cold again.