Hindsight is my worst enemy. As I learn and grow I look back at past choices. I have regrets and they haunt me. Driving home from a hospice visit with Mrs. C. I try to remember- or try to not remember- my last weeks with my own mother. I wonder if those weeks could have been turned into months or even years had we made different decisions or continued treatment.
The questions haunt me: was she able to eat if I had simply tried more textures? Maybe the nurse was wrong. Was she able to take the life-extending medicine had I tried different applications? In hindsight, I see how I might have given her more attention in both quality and quantity. As I see the situation in my mind’s eye- a mind that is over a decade older and richer in both wisdom and experience- I see how I would tend to her both physically and emotionally if I had it to do now. I have learned more about the needs of the dying and the experiences of the dying and their caregivers. In hindsight, I see how I failed my mother.
In this moment I am glad to be for her the daughter who does not visit her.
I stand at the bedside of Mrs. C and she opens her eyes and smiles in surprise. Alzheimer’s disease prevents her from recognizing me for who I am, but the presence of whomever she believes me to be makes her happy. She grabs my hand and holds it to her chest. I wipe away her tears and she whispers two of the only three words she has ever said to me: “thank you.” I ask her if she is thirsty and get no response, yet she swallows the juice through the straw from the glass I hold for nearly a minute. She nods when I ask her if she likes the music I am playing. I remind her that she has beautiful blue eyes and silky gray hair as I comb through it. The creases in her forehead become deeper when the percussion comes on strong behind Sinatra’s voice; I change the music to something softer. I linger… again she takes my hand in hers and ‘recognizes’ me again, this time kissing it. I tell her I love her. Though I truly do love her, I tell her not to express my own feelings because she needs to hear the words. In this moment I am glad to be for her the daughter who does not visit her. In hopes to make up for the time I did not spend stroking my mother’s hair, I now graciously arrange the delicate strands of gray around the face of Mrs. C.
During grad school, the topic of “dying with dignity” came up multiple times. Some of my fellow students had the notion that certain medical treatments could deny them their dignity. They expressed that they would rather be dead than to “lose their dignity” and linger on in ‘this state’ or ‘that…’. They believe that the quality or value of life is measured in ability, not simply in being alive. In every conversation in any context, I took exception to this opinion. Human life is sacred not because of the function of the mind or body, or the value that others place on a person’s actions, but “because from its beginning it involves the creative action of God and it remains forever in a special relationship with the Creator, who is its sole end.” (Catechism of the Catholic Church [CCC], 1997, para 2258) Hastening death for fear of a lack of dignity is not only contrary to natural law, but contradicts the nature of inherent dignity.
Having dignity does not mean you are valued by others, it means you are worthy of being valued.
Wikipedia (2022) defines dignity as the state of being worthy of honor and respect; it says nothing about being honored or respected. Having dignity does not mean you are valued by others, it means you are worthy of being valued. That worth does not come from other people, but from God. It can be recognized or ignored, but it cannot be taken away from the person. This means that even with the use of any means of medical care, the person maintains dignity. What may lack is the ability of others to recognize it. While the Catechism of the Catholic Church (1997) allows for the “discontinuing of medical procedures that are burdensome, dangerous, extraordinary, or disproportionate to the expected outcome,” ordinary care must be maintained even when death is imminent (paras 2278-2279). So one may choose to not proceed with, or continue medical intervention that could be considered burdensome or extraordinary, particularly if this burden is greater than the benefit one would gain from the procedure or treatment. What many fail to understand is that the perceived lack of dignity – or the fear of a lack of dignity – is not a reason to withhold medical treatment. On the contrary, it is because of the person’s inherent dignity that any treatment that is not burdensome or extraordinary must be given and maintained. Further, the burden of recognizing dignity is the responsibility of everyone except the dying person; her dignity is within her, recognized or not.
I watched my mother lose her ability to perform the most basic bodily functions such as swallowing before she died quietly in the middle of the night while I slept. Nine months pregnant with my sixth child, I trusted the hospice doctor and nurses to make decisions and tell me what I should do from week to week. With my inexperienced eyes, I saw a blurred line between palliative care and wanting her to move on so that she would not be suffering; the one thing I was sure of is that I wanted her to not be in pain anymore. She was unable to communicate in her final days. Or, I should say, I was unable to understand her. I had no hospice experience, and only after she died did I realize how emotionally immature I was. I projected my weaknesses and inability to care for her onto her, believing that she was losing her dignity when in reality I had simply failed to recognize it.
The absence of Mrs. C’s daughter tells me that she does not recognize the dignity in her frail bed-bound mother. Although I am tempted to call her and tell her how much I enjoyed my visit with her beautiful mother, and how we listened to music together and it made me laugh and cry, I will simply keep the moments to myself and be who her mother needs someone to be- one who recognizes her dignity all the way to her natural end.
References:
Catechism of the Catholic Church (2nd edition). (1997). Lebreria Editrice Vaticana.
Dignity. (2022, Dec.16) in Wikipedia. https://en.wikipedia.org/wiki/Dignity
Blessings! and welcome to Bizcatalyst Linda! The article you write is heartfelt in many ways and somewhat personal for me. I lost my mom at age 13, and often wonder what things I could have had with her if I had been able to have her longer in life. Funny, I thought of you the other day as Drury sent me an email from one of your stays. Blessings and I hope all has worked out well for you.