You don’t really understand human nature unless you know why a child on a merry-go-round will wave at his parents every time around — and why his parents will always wave back. – William D. Tammeus
When you are on the knife’s edge – when nobody knows exactly what is going to happen next, only that it will be worse – you take in today. – Anne LaMott
Ever since I can remember, my father has called me ‘Sam’. I have absolutely no idea where this nickname came from, but it has been my moniker since I was a very little girl. Perhaps it was because I was a bit of a tomboy when I was young. My mother was a Physical Education teacher, a four-star college athlete, and a total jock. She cut my hair in a charming, ‘easy to manage’ bowl cut until I was probably 9 or 10. In our early years, there was not much distinction between my brother and me, who were 14 months apart in age. We both learned to play golf at the age of four or five, with clubs cut down to size for us; we learned to swim before we could read or write, dragged to the city pool each summer where my mother taught a Life Saving Certification course. We used to jump into the deep end of the pool to be “saved” by her students. I played kickball in the street and built forts in the undeveloped wild area beyond our neighborhood. It was the wonderful sixties, when kids could ride their bikes and stay out all day in the summer, only coming home when dusk started to arrive.
My athletic career failed at about the age of 12, when I think both my mother and I recognized my physical limitations and my larger love of books and boys. I went on to be a strong academic, but my brother became the state champion, all-around athlete who made my mother proud.
I was named after my father’s older brother, Jerry, and his sister Jane, whose middle name was Lee. To most of my family and relatives, I was ‘Jeri Lee”. But my father continued to call me Sam. He addressed his letters to me, “Dear Sam.” When I called home, he answered the phone, “Hi Sam.”
As many of you know from my recent blog posts, my father, who is 84, suffers from advanced Parkinson’s disease. After another major fall two weeks ago, he broke both is left arm and left hip. We declined surgery for a number of reasons, and brought him back to his assisted living facility to try to heal as best he can. He is a hospice patient at this time, given his general prognosis and the need to focus primarily on pain management.
I went to visit him for the Thanksgiving holiday. From the time that I arrived on Wednesday evening, through Thursday, I am pretty convinced he did not know me. He sleeps most of the time, and his limited speaking capacity appears to be mostly gone. We have to speak loudly to him to get him to briefly open his eyes and look at us. We communicate with him in yes/no questions, where he can give a ‘thumbs up’ for YES, or a ‘thumbs down’ for NO. My brother is trying to carefully manage his pain medicine, so that he has some limited moments of coherence. We stopped the morphine for the time being, as my Dad does not handle that drug well and it completely puts him out. But he requires OxyContin for the pain of the broken humerus bone, and Ativan at times for the anxiety that makes him pull frantically at his bed sheets and dressings with his good hand.
His grandsons, granddaughters and great-grandson came to visit him over the holiday, but I’m not sure he was aware of their presence either. I spent most of my time with him trying to get him to sip water or tea, or maybe swallow a few spoonfuls of a smoothie. Most of the time I just sat beside his bed, sometimes holding his hand.
My brother seems to handle this whole experience much better than I do. He has a lot more practice at it, but I think it pains him just as much inside. As I sat there relatively helpless, I could feel my teeth grinding, my muscles in my neck clenching from stress and sadness. I tried to read some while he slept, but mostly just laid my head back in the chair, listened to my Dad moan occasionally, and thought about how much this all just truly sucked.
I really can’t describe how sad it made me to think my Dad might no longer know me. It was crushing. Clearly, this whole painful, miserable saga is NOT about me, but ouch, this really hurt.
What is left, if a parent does not know their own, first-born child?
I had driven down to Jacksonville on Wednesday with my two sons. It was a great pleasure to spend some uninterrupted time with them, just the three of us. They are both in college, and times are rare that I get to be with them for an extended period these days. They are busy with their lives, and spending five long hours in a car with their mom is NOT on the top of their list. For twenty-five years, they have been my world. They still are. I sat in the back seat half-way through the drive, and recall looking at their beautiful heads in the seats in front of me, thinking, “How did my two wonderful babies turn into such strapping MEN almost overnight?”
I cannot imagine a time or a world in which I do not know my sons. Frankly, if it comes to this for me, I do not think I want to live any more. Boys, and husband, mark this down: If I regularly and repeatedly do not know my boys, the fruit of my loins, the lights of my life, just shut it down and pack me in.
Here’s another lesson in the landscape of elderly care: There is much gray area in between the lines of a DNR. While a DNR may say that you do not want extraordinary life-extending care, there is a wasteland of time and indecision for caregivers between the start of the end, and the true end. How much medicine do you provide, what is the right balance of coherence and pain management, what healing might be possible for the future, what is the quality of life that you are providing? When do you just say, STOP this ride, it’s time to get off?
Although I normally love the holidays, this Thanksgiving, I waffled between moderate joy and downright melancholy. I went to bed early each night, too exhausted to spend long evenings with the boys. Grief, along with the inability to DO anything constructive, can really just wear you out.
My reading material for the weekend consisted of Being Mortal, by Atul Gawande, and Small Victories: Spotting Improbable Moments of Grace, by Anne LaMott. Being Mortal is an excellent treatise on everything that is wrong with elderly care in America today. I highly recommend it to anyone who is either managing the care of an elderly loved one, or who is beginning to personally think about what really matters in the end stage of life. Anne LaMott is my go-to author for comfort when I am feeling down and incapacitated, when my teensy little issues with control and the need to fix and manage things are about to overwhelm me. Her sage advice on learning to find grace and a workable path through to the other side, in the midst of a real mess – in a room full of the proverbial SHIT, if you will – is always spot on.
LaMott is strongly religious, but says that she lives both full of hope and full of fear most of the time. She believes in a God with a divine plan, but regularly wants to correct Him or Her on the daily execution of that plan. “It doesn’t help that the planet is not nearly as hospitable as one might have hoped.” Sometimes, when nothing makes any sense, the only prayer you can say is “Help”, or “Wow”, or my favorite – “Oh Well”.
What I love about Anne LaMott is that she continually reminds me that sometimes, as much as we may want, we cannot fix things. Sometimes life truly is shit, and our only option is to find the grace, the beauty, the love in it, and let it change us. We must allow the hurt and the grief to just run rampant across our personal geography. Our only choice is to just “take in today” in those knife-edge moments. Not try to fix it, or change its path, but lean into it and accept it. If we are able to do that, in the end, we will find that it might just “soften” and “illuminate” us for the better.
LaMott talks about the grief she felt when the “big eraser came down” and took the life of her best friend Pammy, who died of breast cancer.
I’m pretty sure that only by experiencing an ocean of sadness in a naked and immediate way do we come to be healed – which is to say, we come to experience life with a real sense of presence and spaciousness and peace.
On Friday morning, I arrived at my Dad’s room around 8am. This was a big day – after my brother shaved him and brushed his teeth, he was going to be put in his reclining chair to receive some visitors. Morphine was stopped earlier in the week, and the other pain meds had been carefully managed over the last 48 hours to drive coherence. He was going to get out of bed, after more than two weeks straight. He had been asking for this repeatedly during his brief moments of lucidity. He wanted to get up out of bed and into his chair.
The move from the bed to the chair for a completely incapacitated person is quite a production. The nurses use a mechanical sling to literally winch him up from his bed, (like a “big tuna” as my brother calls it), swing him over to his chair, and then lower him down.
I walked into his room, as three nurses and my brother were preparing for the move, and sang out, ‘Hello Dad’!
He opened one bleary blue eye, swiveled his head to try to find me amongst all the bedside people, and said “Hi Sam.”
Oh My God. He knew me! He knew my voice, he knew that I was there. HE KNEW ME. – his first born, his Sam.
After that moment, after the trauma of the move from bed to chair, I’m not sure he was really aware that he achieved his goal of being in his chair few hours. He slept for most of the time and did not speak.
But for that one brief moment he knew me, only by my voice. He used the special name he had given me when I was young.
The ancient shamans and magic workers knew the tremendous power of naming. To name a thing or person is to know it, to connect in a very timeless and intimate way with it. The act of naming is one of the true central mysteries of human cognition.
What a moment of improbable and unexpected grace. I think I will remember it for the rest of my life.
“For magic consists in this, the true naming of a thing.” – Ursula Le Guin