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 guess for me, thinking that somehow I’m going to be rewarded for this in the afterlife cheapens the experience. Do we really do good in this life because we want to get presents in heaven? I don’t think we do, whether we believe in a god or not.

I guess I can only speak for myself, but when I have a decision to make and one choice clearly feels more good, more moral, or more ethical, I feel compelled to make that choice. I don’t make it because I want a reward in heaven. It just feels bad to do the wrong thing. There is a certain emotional chaos and angst that I experience when I don’t do the right thing. When faced with the choice two years ago of whether I should help my sisters take care of my mom, the right thing seemed obvious. Had I walked away and not helped, I would have been haunted by that decision the rest of my days. It simply would not have been worth it.

Recently, I read Black Swan Green. It’s the novel about a thirteen year old boy. Late in the story, the boy finds the wallet of another kid, a kid who has been horrible to him through most of the book. The wallet contains a lot of money, more than $1000 in US currency, a fortune for this boy. It seems like a no brainer, the boy should keep the money, but there is a wrinkle. He finds out that the money belongs to the mean kid’s father. This guy is a real son of a bitch who beat his wife over much less than $1000. The boy knows if he keeps the money, the evil kid is going to get beaten bad, maybe even killed.

For most of a chapter, this boy tries to convince himself that he should keep the money and throw the wallet away. He anguishes over the decision but seems quite certain he will keep it. But in the end he gives it back, the money isn’t worth the strain of knowing that it’s not the right thing to do. Immediately he feels much better.

So what does this have to do with my mom? Well two years ago, when we started down this path, the right choice seemed clear: keep mom in her home and rotate between the three of us 24/7. For the most part, that’s what we have done. But things have changed. Her condition is worse, her care is mostly now in the hands of CNAs and nurses that we have hired. We still participate quite actively in her care, but much of the hands on dressing, bathing, feeding and bathroom help is now done by people we have hired. Two years ago, we think it would have been quite distressing for my mom to move to a nursing home. Two years ago, it made a great deal of difference that one of her kids was nearby in the house. I’m sure it made her feel safer to know one of us was nearby. Now I’m not so sure.

It’s very hard to tell what is going on with mom today. She has not spoken in many months. It’s hard to remember, it may be over a year since she has said a full sentence or an understandable phrase. You can read some emotions in her face for sure. If she is in pain or distress, you know it. She has a way of opening her mouth and biting down which means she is hungry. It’s even possible to still make her laugh, although that has become much harder. Beyond that, it’s hard to know if she understands what is happening around her. The bottom line is that I’m not sure she would feel much difference between being taken care of at home and being taken care of in a nursing home, provided that caregivers were kind to her and that we visited her often to spend time with her.

There are other parts to this story as well. All three of us have made sacrifices to do this, sacrifices that I don’t think my mom would have wanted. I think she would want us to make sure she got excellent care, and would want us to be a part of that care, but she would not want us to have put our lives on hold like we have.

Also, I’ve begun to feel the cost to our mental and physical health. This summer was a particularly bad one for me. My mom’s situation was not the catalyst, but my ability to deal with the issues I was faced with was badly compromised. Emotionally I was a wreck and it’s taken me a few months to climb out of it. And I’m afraid my compromised mental state will only get worse over time.

Someday soon, my sisters and I may come to a different conclusion, that perhaps the best thing for all of us will be for my mom to be in a nursing home and for us to start rebuilding our lives. If we make that choice, will there no longer be a reward for us in heaven? Will we have forfeited it? I don’t think so, but then I don’t think there ever was such a reward. I would hate to think that there was a god that allowed all the suffering in the world and tried to make up for it by giving us presents in the afterlife. That’s a truly repugnant idea to me.

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.

The other night I was sitting in a bar having a drink with a couple of people I had met through meetup.com. The subject turned to my situation with my mother. I was talking about my future plans, how I’d like to return to making theatre and teaching, but would have to wait. One of the women asked me, “So, you are going to do that after your mother dies?”

It was honestly a relief that she spoke of it like that. Her grandmother had died of Alzheimer’s so perhaps she just knew it was alright to talk about it bluntly. It’s much harder to talk when you are trying to be subtle.

I’ve recently had questions from people like, “When are you coming to LA?” or “When will you be back in New York to teach?” The answer is something that just doesn’t feel polite to say.

“When my mother dies.”

But of course, I search for other ways to say that. “When I’m not needed here anymore.” Or, “In a year or two.” Unfortunately that leads to other questions and draws the person in deeper, so that as some point I need to say what I wish I said up front, “I’m here till my mother dies.” And at that point it seems more like a rebuke than simple information.

There is such a terrible mix of feelings around taking care of someone who is dying of dementia. You love them. You want them to be comfortable and happy as much as possible. You want them to be better. You want them to be able to talk to you again. You want them to stop going through your pockets. You want them to stop pulling your hair. You wish you could roll back the clock a couple of years. You cherish simple moments when you get to hug them and you know that your presence is making their life better. And you wish you could jump forward a couple of years when this will all be over and you can start up your life again.

So if you ask me something about my future and I say, “After my mother dies.” I’m not trying to shock you or upset you. I’m certainly not trolling for sympathy. I’m trying to get that part of the conversation over, to let you know as succinctly as possible what my situation is here and why I’m not teaching in New York, playing poker in Arizona or hanging out in LA. I still want to talk about it, if you let me. I just don’t want to be coy about it.

However, I also want to talk about low carb diets, behavioral economics, evolution based learning systems, poker, and of course, improv. Oh and I may also tell you about the grill I bought last night to cook brats, or the strange rattle in my car, or how I got myself hooked on black coffee and now have to quit cold turkey.

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.

In between the TV room and the bathroom is the thermostat. Most times when we pass it, her hand will dart up and push the heat up to 85 degrees. I will move the little lever back down and she will giggle as if to say, “No use trying to get me to stop doing that, I’m being mischievous and I like it.”

The same used to be true for the dish washer, every time we put a single dish inside, every time we even passed it, she would press the start button and turn it on. Before we were with her 24/7, she must have run the dishwasher 5 or 6 times a day. For her a load of laundry could be a single towel or washcloth.

We learned quickly that it was impossible to reason with her impulsive behavior. The best you could do was come up with strategies to work around her impulses. Otherwise it would lead to frustration for everyone. For instance, when we passed the dishwasher, instead of telling mom, “Don’t press the start button”, I would simply cover it up. She would try to press the button anyway. She would reach for the button, see my hand covering it, then look up at me knowing it wasn’t time to press it, smile and giggle. It was as if she understood how irrational these impulses were, but couldn’t stop them and found them terribly funny.

The occupational therapist recommended that we keep her as active as possible. We should have her do as much housework as she is willing to do. So just now I pulled some towels out of the dryer and brought them in to her to fold. I left them with her and with B, our morning helper. I left the room for a few minutes. When I came back to see Mom’s progress, several of the larger towels were haphazardly piled in a stack. B pointed out the pile and I looked at Mom. Instead of being frustrated with her inability to fold towels, she just giggled and kept folding, or rather flipping around, the one she was working on.