I got up last night to crack the window for some fresh air and saw stars I have never seen in Chicago! Not only Orion’s Belt, but all of him. And a host of pinpricks of light magnificent and calming. The only way to see the stars over the trees was to kneel in front of the window. That seemed like a fitting posture to be in: kneeling before the stars and creation.
When the maintenance man came on duty yesterday morning at 6:30 am, he found my mother on the floor outside her door. He helped her in and found my dad on the floor by their bed. It seems my dad had tried to get up in the night to use the bedside commode and slipped off the edge of the bed onto the floor. He called for my mother and she made her way to the door. But once outside, the door closed and locked behind her and with her short-term memory loss she did not know why she was outside or what to do.
Later, my father said he thought he had been on the floor for 4 hours. My mother, thank goodness, appeared not to remember the incident. But later that afternoon, coming in from having her hair done and walking down the hall, she said quietly, “I was in the hall.” I can’t imagine what it was like to be outside the door: confused, unable to get help, help herself or even understand what was going on.
“I was in the hall.”
Each day seems to bring a new hurdle. Or maybe it’s that the trail we are on that winds through this dark night of the end-of-life, just descends a little more sharply each day. I cannot keep my footing. And neither can my parents.
But the worst of it, I will say, selfishly, is that my sister and I disagree on what these signs mean and how to respond to them. I am the daughter that has swooped in from afar and said, “Wouldn’t they be more comfortable, more safe, more part of a community they fit into, in a good nursing home?” My sister who had done all the heavy-lifting is fiercely protective of them and what she believes is their right to die in their (new) home.
My sister said to me yesterday, “I am the person that makes things work. I will make this work.” And she will, at whatever cost to herself.
I don’t know who I am anymore. I believe I am the person who has learned in the last 15 months that I cannot, in fact, force the universe to fit my expectations, or desires or demands–no matter how just those are. To my sister, I am sure this looks like I give up too easily. As if I am willing to sacrifice my parents’ deepest needs to my comfort. She may be right.
From my perspective of having been seriously ill, I want my parents to be comfortable, cared for and to avoid the frightening accidents that can happen when you are alone and helpless. She would say they are not alone. But in fact they will be, for hours each day, maybe not long hours. But hours. And if neither of them moves out of their chair, maybe things will be okay.
Neither of us knows what will happen. I would choose safety and comfort–even if it is medical and institutional in nature. (Because I have had very good experiences with that kind of care.) She would choose to preserve what she believes to be their deepest wishes: to be independent with dignity. And she is their power of attorney and she has done an admirable job so far. It will be according to her will.
Yesterday I got off the campus of the retirement home for the first time in 5 very long days. I can tell you, I was getting a little squirrely. We only went into town to take Mom to get her hair done, and for my sister to get a massage (a late birthday gift from me). I had 30 minutes alone. I mean, I had 30 minutes when I was not trying to comfort my mom in her confusion or watch my dad breathing and sleeping. Thirty minutes while Mom got her hair done.
I spent it walking up and down a couple blocks of Maine street (I think that is really how they spell it) in the rain. I went into 2 different chocolate stores. (What can I say? I need comfort, too.) And, unfortunately, only at the last minute did I discover this awesome, independent bookstore called “Gulf of Maine.” OMG, as the young people say, OMG.
I never got past the first table, just inside the door. It was filled, books layered on books, standing on edges, laying down, perched on piles. Books about nature, sustainability, the environment, about wildlife, illness, thoughtful, respectful, award-winning books (ALL of them, award-winning!) It was like finding a bunch of field guides to living on the earth in a thoughtful, funny, reflective, intelligent way. It was like finding the end of the rainbow.
I only bought one book. But I am desperate to go back and write down the titles of the others so I can find them in the library or buy them. What a find. What a gift. Most of all, it awakened my interest in being one of those writers who can look at tiny pieces of her universe and see a larger world reflected in them. I wanted so much to read it all and learn from them.
Let me tell you, it is quite a gift to be my age and feel like you have found a piece of your passion or a new way to give to the world–to leave something behind. Especially, if you believe, as I do, now, that it may turn out that I am not, after all, immortal. That I may be approaching a time when I will only be able to see the stars from a narrow window of life.
If I am approaching a time when I will be on my knees more than I am standing, I want to learn how to kneel–so as to see the stars!