Tending to Endings (twenty-two)
It was an expedition to get down to the pool. Mom hadn’t left the condo for a couple weeks, but that morning she wanted to go outside.
We moved slowly. My mom was forgetting how to walk, so I had to help keep the momentum going by gently pulling the walker. We inched along. I didn’t care how long it took, except that if she changed her mind, it would be the same production to get her back and she might not be happy about it.
But we made it to the lounge chairs and then there was the process of helping her to sit. She no longer understood the mechanics of sitting, and she found the process of letting herself down onto the chair unsettling. If I held her around her waist in a hug and bent my knees she would sometimes follow my lead. We tried this and after a long awkward dance she was in the chair and I was able to raise her feet and turn her towards the pool and to the blue ocean water and the sky. She squinted in the sun.
And then I looked up and saw that the small groups of others in the pool area were watching us. Kindly. One woman put her hand on her chest as she made eye contact with me. Her eyes were teary. And I realized, my mother and I were a story. I was the daughter taking care of my elderly mother with tenderness. I was that special kind of person. They weren’t sure they could do it.
Or that is how I might’ve seen the story in the past, before I went to live with my parents for six months. There are certain kinds of people who have an extra something and are able to show patience and compassion for caregiving. These special people are good at such things, saints really.
One of my biggest insights about being a caregiver is that it meant feeling like a failure (not a saint) most of the time. I certainly couldn’t cure cancer or Alzheimer’s and very few decisions seemed clear cut. Even things I had thought I was clear on like honesty and autonomy were thrust into a gray zone. It was very difficult to get my bearings.
What worked one day, changed the next, and much of the time I didn’t know what to do to help my mom on a day to day basis. More pain medication or less? Do we bring in extra nursing help she doesn’t want? Do we tell her she has cancer every time she forgets? Is it time for hospice yet? Do we bring her to another doctor appointment where she will experience pain on the off chance he’ll be able to help? Do we talk her into going on walks? Eating less ice cream? Does it matter? Are we giving up if we say it doesn’t matter?
Sometimes I felt like my main accomplishment was being there so my father didn’t have to bear all these confusing decisions alone. I didn’t have clear answers for him, but at least we could be confused together which meant less loneliness, and I think maybe less guilt. I could reassure him that no matter what decision we made it was going to feel wrong.
My time as a full-time caregiver was short compared to the time put in by many others including my father. I had his support and also, often, my sisters and my aunt. Even with a crew it was one of the hardest things I’ve ever done. Probably the hardest. I didn’t always do it gracefully or well.
Yes, it made a difference to my parents that I was there. But more than that, I think it helped me. It helped me process and accept and let go and love in a way that I believe would’ve been more complicated otherwise.
If I hadn’t drawn close, I would only have known the trauma of Alzheimer’s and cancer, which are horrible even from a distance. But I would have missed seeing my mom wake up each day and drink her coffee and talk with my dad. I would have missed her laughing when she spotted egrets. I would’ve missed our Scrabble games.
And those rare moments she sounded just like herself again through the fog of Alzheimer’s. Like the day I had to explain to her once again that she had cancer because she forgot and didn’t understand why she was in such intense pain. She must’ve heard a sadness in my voice because she looked me straight in the eye and said, “Oh, Laura. I’ve had such a good life. Things aren’t doled out fairly you know, and I have gotten far more than my share. I’m not going to let a little pain in my bottom make me forget that.”
I would not have known that being a caregiver isn’t a role but a relationship. Which means I also receive. Which means I also irritate, and laugh with, and know this other person. A knowing in this case that was full of loss, but also full of intimacy. It was a time we experienced together.
I would not have known that after weeks of not wanting to leave the condo, my mom would suddenly one day look to me and say, “Why don’t we go outside and sit by the pool?” Or that when did our long dance to the chair, I wouldn’t think of it as anything other than spending time with my mother.
Thank you for reading Tending to Endings. If you would like to subscribe, please leave your name and email below. If you have questions or feedback, you can reach me at laura@laurastavoe.com. Tending to Endings is ad-free and cost free, and I will not share you email. My hope is to help build community and conversation around end-of-life matters.
I see caregivers everyday where I work and your right it isn’t easy. You identified the game board changing everyday in caregiving is key and so beautifully explicit. Thank you again for exploring your journey with us.