Extreme Caregiving 10: The Beginner’s Mind

I caught the littlest little’s cold last week and spent a cold rainy Saturday in my pajamas on the sofa by the fire. Finally I could indulge in a rare sick day, and I thoroughly enjoyed it, however miserable I felt. I arrived in Seattle this week for my Gigi-nanny gig to find the bigger little sick and unable to go to school. Emma stayed home most of Monday, but Tuesday I was on my own. It was a gift. To watch Elliot’s compassion toward Adrian and Adrian’s delight in his big brother was beautiful. They were both sweet, calm, and fun. I let go of how Adrian’s and my days usually go and played. These days don’t come back.

img_6119Adrian is careening out of infancy at light speed. He started crawling over Christmas, and in the past week, between my visits, has mastered it. Monday he pulled himself up for the first time. By Tuesday he had that baby task mastered too; well, almost. And he waved his first wave—that adorable backward fist squeeze babies start with, what they see is what you get. He got a lot of attention for that, so he did it again. Attention made him practice, practice made him better, getting better made him practice more.

img_6135Mama has been practicing too. She can now walk the hall loop at her new home by herself. I praise her accomplishment even though she expresses no pride in it. She has learned to negotiate the poorly designed location of the bathroom door in her room (the hall door collides with it if it’s left open). Yes, she can open it when she needs to go in, and close it when she goes out into the hall. Her daughters had low expectations. She probably has many other little accomplishments I don’t know about because she doesn’t tell me. She is not pleased to be able to do what any adult should be able to do. (Also, I think she’s playing us. I have heard reports…)

In the first yoga practice of the new year, we were reminded to keep a beginner’s mind. Of course we have all done hundreds of downward-facing dogs, but we haven’t done this one. What can be learned with each well-practiced pose done as if for the first time?

img_6149What Mama tells me is everything she can’t do and everything others do that disappoints her. She’s been practicing disappointment for a long time. She’s gotten really good at complaining. I encourage it through my relentless attempts to get her to stop. We never allow time to talk about anything else; it’s the surefire way to engage me.

Her hospice nurse acknowledged this week the endless complaints are challenging even her. She urged me not to be hard on myself, that we are caring for our mother as well as she will let us, but she has made up her mind to be unhappy. How many times have I written here my understanding that I can’t change her? I’ve been reading my memoir manuscript of my first year with her and being reminded of how much has not changed. I have not stopped trying to be the change agent and Mama has not become a happy person.

What is she yearning for? What am I yearning for? Connection. Both of us. As her dementia increases and her future becomes thinner, I have a sense of being almost out of time to change myself, to change—or accept—our relationship.

What does she want in her complaining? I don’t think she has expectations that I will make things better; she just wants to be acknowledged. I can do that with a simple, “that must have been frustrating, or disappointing, or frightening.” I don’t have to do one thing more. I don’t have to fix it. I can’t fix it. I can’t fix the world in which she is determined to be unhappy. I can’t make her look at the bright side. “What went well today?” doesn’t work. She doesn’t want to examine that, and for me it’s just more of the same conversation. I need to redirect, just as those caring for two year olds redirect undesirable behavior.

The beginner’s mind. I’ll keep you posted.

img_6118Elliot made me pizza yesterday.

“What do you want on your pizza, Gigi?”
“Sauce, mushrooms, onions, and cheese, please.”
“And pepperoni! You have to have pepperoni!”
“No, I don’t have to have pepperoni. I don’t want pepperoni.”
“You have to, Gigi.”

I got pepperoni. It was about what he wanted for me, not what I wanted. He is more comfortable with me wanting pepperoni.

img_6169I want Mama to be happy. I want her to focus on what she has rather than what she doesn’t have. I want her to say “I can” instead of “I can’t.” But that is who I want her to be. Who she is has been working just fine for her for a full century. It’s about my comfort, and I would be more comfortable if she would just be more like me.

On my sick day, I read “Where the Light Gets In,” a memoir by Kimberly Williams-Paisley (wife of Brad and the bride in “Father of the Bride”) about her mother who suffered from primary progressive aphasia (PPA), a rare form of dementia, diagnosed when her mother was 62. It’s a powerful story of love and loss and rebirth, but Kim’s learning in the end enlightened me.

“My mother is not only presenting me with the opportunity to love unconditionally, she’s also allowing me to practice being comfortable with what is uncomfortable. To grieve and also embrace what is broken. To know that some days I can receive who my mother is now and some days struggle with it. To allow that two opposing thoughts may exist in my head at the same time….I regret I didn’t feel more acceptance from my mother at times in my life, and I’m grateful for the lesson she is giving me now in accepting myself.”

Mama needs acceptance just as I do. I may not get it from her, but once more, I will to try to give it to her. Once more I will develop the beginner’s mind. And maybe then I will accept myself: both my love for her and my limitations, side by side.

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11 thoughts on “Extreme Caregiving 10: The Beginner’s Mind

  1. I read this and slide back a decade and more, to when I knew Mom would soon leave, and I wanted things to be more positive than what they were. “Just be with her, right where she is,” my therapist told me. I let all my stuff go.
    A beautiful post,,Gretchen, that has deeply moved me. Thank you and bless you.

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  2. I thoroughly enjoy the children as you include the images so succinctly! You give them acceptance and acknowledgment…you give where you can. What a hard, nice lesson!

    Liked by 1 person

  3. Thank you dear G. Disappointment is a wicked kind of suffering to experience on an ongoing basis. So sorry for your Mom’s struggle. Sending you beams of breath and light as you ‘pendulate’ back in forth with her, touching in – offering your kindness, and swinging back out. It’s the way to go in these day, right?!

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    • It is a wicked kind of suffering. It’s where she has lived for ever so long. It makes me sad for her. And grateful to have learned my father’s way to be in the world instead of hers. I am liking the swinging in and out!

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  4. The things you write, what you discover, how you are trying to cope optimally, and every thought that comes to your mind can be generalized to other relationships and situations. I enjoy every morsel of “food” for thought and application.

    Thanks so much.

    Like

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