My mother passed away ten years ago this November. Her decline and death and the vivid memories it brought back (many of which are cataloged here in my archives) were on my mind yesterday as our car, facing stiff headwinds scurried west on I-70. For we were on our way to say goodbye to another loved one. As we exited onto I-68 toward Cumberland, Maryland the wind tried to push us off the road while we also gained altitude. By the time we exited on U.S. 40 toward Uniontown, Pennsylvania there was snow on the ground in spite of the bright sunshine, while the temperature kept steadily dropping. When we pulled off the road toward Aunt Pat and Uncle Paul’s house on the Youghiogheny Reservoir the winds were still brisk and the early afternoon temperature registered a frigid 10 degrees Fahrenheit. With my warmest coat and hat on, it still felt cold outside in the sun. The dry snow crunched below our feet as we ascended stairs to knock on their door.
Cousin Beverly had phoned us a few days earlier to let us know that her mother had a stroke late last year. It paralyzed the left half of her body and left her largely unable to move or say anything clearly. Since then it had been all downhill, which meant of course a hospitalization, a nursing home, and now hospice care in the lower level of their home. We steeled ourselves. She may be on a deathwatch, but the house was warm and Aunt Pat had plenty of company. There was Chris, a good-hearted friend of Bev who had moved up for the duration. There was a nurse’s aid and later a LPN. There was Uncle Paul, Pat’s husband, who is in the early stages of Alzheimer’s disease, but was reasonably alert and chatty, and who greeted us warmly. There was a small friendly dog, as well as another friend of the family who seemed to be there for the duration, driven up from North Carolina by Chris. Those Adventists know how to stick together.
Except for all the attention to Aunt Pat at first our visit seemed sort of normal. She was in a reclining wheelchair, placed into it by Chris, her mouth now perpetually wide open, with just slits to show her eyes. Her body was a mess of bedsores and infections. A catheter drained her bladder. A tube going through her abdomen into her stomach provided nutrition of a sort. The LPN applied dressing to her wounds. When Pat chose to talk it came out as a moan but her meaning was clear: she was in pain. Her vision had been declining for years due to macular degeneration. She could no longer make out faces, but only see light and colors. She could hear what was around her, at least when she was awake, but had virtually no other ways to be understood. The stroke had largely taken away her speech. The guttural sounds that occasionally came out were hard to interpret.
She was ready to die, that much we knew through our phone conversation with Beverly. From seeing her up close and hearing her moans, death seemed to be something to hasten, not postpone. Her face was pallid. The stroke had stolen with it any sign of animation. Pat had always been a forceful woman, kindly but stubborn, and a woman of deep faith and conviction. Part of her faith required her family to do all they could to keep her alive. It was clear to me that these extraordinary efforts while well intentioned had the effect of being cruel. My own mother eventually died from a bladder infection due to having a catheter in her 24/7, but like Pat she also had congestive heart failure. Pat’s heart was having a hard time meeting her body’s needs. She was retaining water (not a good sign) and her oxygen levels were dropping too. And she was often moaning. This brought calls to a registered nurse and the injection of a rescue drug to alleviate her pain. It also brought a major decision. She was gently lifted from the wheelchair and into her bed. There she will stay until she passes.
In the living room with Uncle Paul, he seemed inured to his wife’s suffering. It might have been the Alzheimer’s, it might have been that her condition was very old news, so he was eloquent with us instead, anxious to hear how we were doing although it had been more than seven years since we last visited. A little dog bounded from lap to lap happily. Paul shared pictures of their life together while other adults fussed over Pat’s condition. Like his wife, Paul is a passionate Adventist. He can’t drive anymore, which means he can’t drive an hour each way to Cumberland on the Sabbath to attend church. There is, he happily reported, an Adventist channel on the satellite TV. Ministers come by regularly to provide pastoral care to both Pat and Paul. While the moans from his wife waffled from her bedroom, he informed us that in all the universe Satan lived only here on Earth, and we must resist Satan and follow Christ. (I didn’t ask why God put us here and if that made God a sadist, but I wanted to.) He had tried to convert us the last time we were here. We nodded dutifully but did not agree with his thesis. This was no time to disagree about theology, but Paul is too kindly a man to disagree with in any event.
Meanwhile Pat drifted in and out of consciousness. It was not clear much of the time if she was conscious, but when she moaned we at least knew that she was hurting. We weren’t sure what if anything she could say to us, but when she seemed reasonably alert and we listened closely, it sounds like “hurt”. No doubt. I touched her gently not wishing to start yet another bedsore. Her skin was paper thin and easily injured. “Aunt Pat,” I said, “they gave you a medicine for the pain. It should stop soon.”
My wife talked to her and tried to listen but it was mostly a one sided conversation. She told her how grateful she was to her. It was Pat that had took her in when she had to leave college. There were opportunities in Washington D.C. that did not exist in Flint, Michigan. Pat had hosted her and Pat had also pushed her out. She had the courage her mother seemed to lack to tell her it was time to stand on her own two feet. After leaving their house, my wife lived in a fleabag apartment, then in a high rise with a roommate and not much after that she ran into me. It was Aunt Pat that indirectly brought her into my life. As I held Pat gently I told her how sad I was to see her suffer, but how profoundly grateful I was that by choosing kindness for my wife, I found the woman I love.
I watched while the nurse’s aide frequently hydrated her lips and mouth. Tubes were periodically sent down her sinuses to remove mucus. All sorts of things were being done to keep her alive, but her systems were failing. The nurse told Paul that much. Her body was shutting down. Medicines would not work much longer.
My wife promised Pat that she would come back but I don’t see how it is possible. I can’t imagine that Pat will live much longer and we are three hours away by car. I never had the emotional attachment to Pat that I had to my mother, but I certainly grew to respect both her and Paul. When my time comes I simply don’t want these sorts of extraordinary procedures to keep me alive. She was suffering pointlessly and needlessly. It would be more humane to simply do the best to manage her pain but otherwise let her die a gentle death. For now she was living the script that her faith taught her: to keep her body alive as long as possible, even though there seemed literally nothing to live for except more discomfort and pain.
My wife was crying of course when we left and began another three-hour journey home. I felt it best to drive while she sat in her seat mostly quietly, a sad and vacant look in her eyes. I don’t expect Aunt Pat to last more than a few more days. I am certainly grateful to have known her. I wish her (if it is possible to state this without sounding callous) a swift but gentle death. May it come soon.