For those of you wondering about my dying mother, she is still alive and unfortunately she is not improving. I do my best to visit her once a week. I try to visit on Saturdays around lunchtime. This usually works best for my schedule. I arrive about forty-five minutes before lunch. By this time, her long morning nap is over and she is often reasonably coherent. This gives me a chance to talk to her for a bit before lunch. Lunch is served promptly at noon in the dining room, so I make a point to have her there on time. She can no longer feed herself, so I feed her. I can tell she resents my help but she also accepts that this is the way things are. As miserable as she feels she is not yet ready to check out of this life.
I have to check myself when I feed her. I find myself unconsciously opening my mouth, as I did with my daughter as an infant when I fed her. It would be insulting to say, “Open up the barn door and let the horsies in.” Yet the words want to form on my lips. Forkfuls of food go lackadaisically into her mouth. She chews but swallowing is increasingly difficult. It can lead to coughing fits. This is just one of the effects of her disease, Progressive Supranuclear Palsy. There is this, along with her difficulty in moving her eyes from straight ahead. Focusing is also difficult for her. At this point, her muscles are atrophied. A couple months ago, she could usually sit up on the side of the bed by herself. Now this is beyond her. Her one remaining act of self-care was to brush her teeth. Now this is becoming impossible for her too. I gave her an electric toothbrush and had to turn it on for her; she does not have the agility to press its on button. She can no longer seem to reach beyond her front teeth. Therefore, I do most of the work. She may be dying, but I will not let my mother suffer the indignity of dirty teeth and bad breath. She would not want this either.
Now she must be carried to and from her bed, dragging a catheter bag with her. She can still move her arms and legs a bit. Nevertheless, you can tell she is still overwhelmingly frustrated. The only good part of her dying process is that she spends much of her life asleep or dozing. I woke her up last Saturday about 11:15 a.m. I put her to bed for her nap at 1:15 p.m. She was more than ready for sleep.
I do not know how typical her dying process is. I get the feeling that hers is a lot more benign than most. She can still think clearly. Her speech is often soft or garbled but she can tell us how she feels. She is not like the sixty something woman with Alzheimer’s endlessly walking up and down the halls calling out, “Mother? Where are you mother?” Nor is she like the woman who sits next to her in the dining room, who had a stroke, who grunts instead of talks, and can only use the left side of her body. Nor as best I can tell, is she in any pain, other than perhaps mental anguish. My father visits her twice a day but this is not enough for her. She hates it when he leaves. She feels abandoned and unloved. She does not understand why she cannot go and live in their apartment. She believes we could take care of her there. If she cannot have full use of her limbs, she at least wants the dignity of dying in her own bed in her own home. Why can we not give her at least this?
Maybe at the very end of life that will be possible. If we were certain she had a week or two left perhaps nurses or loved ones could be there with her around the clock. Not yet. Perhaps in time she could go to a hospice. At least in a hospice she could get more of the focused attention that she wants. For she can no longer play card games. She cannot focus on the television. She cannot read a book. There is just the frustration of an active mind trapped in a body that mostly refuses to respond.
When I can pull myself away from her situation, I can observe the dying process as it actually is rather than in the abstract. It is not quite what I expected. Although she has only been in the nursing home about four months, it seems inordinately long to me. I do not know how much longer she has. Typically, it takes one to two years before this disease kills. Her kind of dying seems to be like death from a thousand small cuts. Each time I see her she is slightly for the worse. It is hard to know which one will cause the final collapse of her fragile system. Nevertheless, with certainty one of them will cause her death.
Last week I brought pictures of my wedding to share with her. It did help cheer her up a bit. She liked looking at pictures of herself when she was still so young and vigorous. She was 65 when I was married but looked closer to 45. With each picture was a story and a memory. One picture was of my wife’s grandmother. She passed away about five years after our wedding. “Everyone dies in time,” my mother said sadly, yet in a matter of fact way.
To the dying and to those who love the dying, death is not fair. Dying is a slow motion horror movie that is not make believe. Its certainty and finality are both inescapable and crushing. It is also, at some point, simply accepted. I think that is where my mother is now. That is also to some degree where I am too. There are few things in life that are absolutely certain. Death is one of them. Death will consume us all in time. Whether we devolve into nothingness or, like chrysalides, are transformed into another form of being, no one can say with certainty. Nevertheless, death is final. No matter what divides us from each other, dying is our one common experience.
Through much of my twenties, thirties, and even into my forties my mortality stalked me. I had no answer for it other than to try to ignore it. That was futile. It was like trying to ignore an axe murderer you know is outside your door. However, through observing my mother’s dying process I now find an odd sort of catharsis. Seeing the reality of what will happen to me in time (although my exact experience will likely be different), I am no longer quite so afraid of age, dying and death as I used to be. Now, for some reason, I feel an odd sort of peace with my mortality.
In a way, though I still in midlife, I feel almost reborn. It took neither a savior nor a holy book to make me feel this way. I just had to grapple first hand with my fear. Now dying is not so mysterious. I do not like to see my mother this way, of course. I feel sad and frustrated for her too. I feel more than a bit helpless that I cannot do more for her. Now dying is not an unknown. It is tangible. It feels like silly putty. I can shape somewhat to my own ends, though it always remains the same stuff.
Death is hard to look at but is no longer quite the horror movie of my worst imagination. It was not Freddy Kruger outside my door. It is more like an old, miserable, hungry and abandoned dog wailing out its misery. It turns out, for me, that the way toward acceptance is to open the door and pet the dog. While I cannot make the dog happy, I can give it some comfort. I can hold it to my bosom and I can experience its pain. Moreover, maybe if I shed a tear then my sympathy will turn into empathy. Then maybe I have brought some form of solace to the dying during this distressing time, and some comfort for myself too.
Now I feel what I heard in so many words but could not emotionally grasp. Life is finite. So squeeze. Squeeze every drop of vitality out of this limited mystery we call life. Live life fully so you can leave it with as few regrets as possible. As Gandalf (the wizard from The Lord of the Rings books and movies) put it, “All we have to do is decide what to do with the time that is given us.”
Seize the day.