Doing What Is “Right”
Even with help and support, when you are guardian for someone like my mother who has dementia with Lewy Bodies, you never feel you have done enough or even the right thing. You feel that you should always be there, always be in control. It means I travel very rarely and usually within a few hours of home. I do not want to put this burden on my daughters who have young children. Still they occasionally get the calls. Life doesn’t work on my schedule.
Just this past week there was an “episode.” I was 15 minutes from my mother’s assisted living facility and had planned to visit after my swim at the Y. With 10 laps still to go my husband hovers over the lap lane with phone in hand. My daughter has texted, and he has called the EMTs who are ready to transport my mother to the hospital. The aides are concerned that my mother might have had a stroke, but she is combative and doesn’t want to go to the hospital. Since only one person can be guardian, I am the one who must make the decision. They describe her symptoms, and I make the call not to transport her.
My mother decided long ago she did not want to be bed-ridden and on a feeding tube like her own mother. So I dutifully filled out a MOST form (which indicates wishes for scope of treatment). I also know from two previous experiences there is little the hospital can do. They will run four or five hours of tests and may possibly strap my mother to the bed. Making these decisions never gets any easier.
Thirty minutes after the phone call, I am at the facility, and she is napping in a chair. When I wake her, she is angry and not rational. She points at the bouquet of flowers in my hands and yells, “no…out of here.” My mother now has language difficulties and primarily indicates displeasure, not pleasure. She complains frequently about the food, the staff not responding, etc. Today she is simply not happy at all. I spend time thanking the aides and the techs who are doing their job the best they can. They are strangers, yet most of them remain patient and kind even under difficult circumstances.
I do not know what the aides, the med techs, or the facility director thinks of my choices for my mother. Some days I think I have failed. Making decisions for someone else’s life is hard.
The Opinion That Counts Is Yours.
Making decisions about art is also difficult. You not only must choose what to paint, what colors you should use, or what tools, but also you must select what shows to enter, what pieces will grab a judge’s or a collector’s attention. Others may suggest that you should enter a particular show or art fair, but right or wrong, you are the one who must decide.
Like a lot of artists I get rejections. Enough that I could wall paper a large bathroom if the rejections did not arrive by email (Yes, I can remember when they arrived by mail.). I could tell you it doesn’t hurt, but it does. It can ruin a morning. I want to be in every show I enter. Realistically, I know other people’s opinions are only that—opinions. They matter for the moment because they are judging a show or deciding whether to buy a painting. What’s left is only the disappointment. There is a whole world of judges and buyers out there.
In the end, my art must please me. It must occupy my mind, delight and heal my soul, and communicate my feelings to the world. Truthfully, I make art for myself, and if I get to share it with others it is an additional blessing.
Patricia Steele Raible 