Thursday was my father’s seventy-third birthday and I spent part of the afternoon, with my mother, checking out the hospice suite where he is going to die. To say it was a surreal moment doesn’t even touch it.
In August my dad went to the hospital for a cardiac catherization because he had a stress test at his cardiologist’s office that didn’t go very well. Dad walked into that hospital under his own steam hand in hand with my mom. He’s been there ever since. The test found blockages that led to bypass surgery where there were complications that caused the six hour surgery to last nearly twelve hours. A few hours later the surgeon had to go back in because there was bleeding. All the blood thinners Dad has been taking for years had done their job so well he wasn’t clotting properly. Then there was the pericarditis that no one knew about before the surgery that kept filling Dad’s chest with fluid. That required another heart surgery. By this time he was so bloated and his kidneys were so fatigued they shut down. The doctors started dialysis to fix that issue and give his kidneys a rest. His breathing was labored and his oxygen levels were low which resulted in a ventilator. Somehow he ended up with a tracheotomy so the ventilator goes right into his neck. This means he can’t speak, eat or drink. To compensate he has a gastric feeding tube. He is now in bed almost all the time except for an hour or two that he spends sitting up in a chair and machines are performing all his bodily functions. It’s astounding how his condition has snowballed. He walked into that hospital under his own steam and now he has to deal with all this and a dozen other indignities I prefer not to share with the internet.
Dad is a big man. Always has been. As a young, healthy adult he was six foot one and two hundred thirty pounds; his fighting weight. He liked to drink, loved a good meal and smoked like a chimney. He stopped drinking forty years ago. Stopped smoking thirty-five years ago. He and good food, however, have a life-long love affair. Not surprisingly he packed on the pounds and was eventually diagnosed with type2 diabetes. He’s been battling that since the late 80s.
When I was a little kid he was kind of scary. He was a US Marine once upon a time and studied to be an Irish Christian Brother for a while. He’s big and loud and honestly he’s complete crap with little kids. He never got the knack of dealing with them which sucks if you were one of his kids. By the time we each reached an age where he knew how to interact with us we were all done trying to deal with him. He did have his moments though.
I have a lot of fond memories mixed in with some misery. When I was in kindergarten he taught me how to play cards. By third grade we were playing chess together. He helped me study for the Richmond County Spelling Bee and thought it was funny that I was a Catholic School student and got eliminated for misspelling ‘religious’. I forgot the second ‘i’. In high school I would stay up late discussing philosophy with him. He loves Thomas Aquinas. He introduced me to the work of Thomas Merton. He loves baroque music and specifically Bach and gave me an appreciation of it. The night after his original surgery I was in my parent’s home keeping Mom company. I went down into his office to get her some batteries. His space is the same sort of organized chaos that I have in my art studio here in my home. I realized that he and I have a lot more in common than I would have wanted to admit when I was younger. The house is filled with books. There is a stack next to his chair just like the stack next to my bed. There is usually a New York Times crossword puzzle on top of his book pile and he usually finishes it. I prefer other puzzles. We both love a good mystery and get a sense of satisfaction when exercising “our little grey cells.” He’s an introvert and so am I. We both experience and observe things at the same time. If you aren’t an introvert it’s hard to explain that. If you are an introvert you know exactly what I mean. To think of his agile mind trapped in his deteriorating body is almost too horrible to contemplate. I think it would drive me insane to be in his position right now.
The Hospice Unit is in the same hospital on a different floor. You wouldn’t believe it if you were there. The energy is completely different. It even smells different. The nurses were great in how they talked to my mom. The compassion was palpable. The head of the unit was explaining the philosophy of hospice care and how they take care of the whole patient and that his comfort is the priority. While she was talking I was wondering why that wasn’t part of the regular hospital care. Why does each system of Dad’s body have its own doctor? The heart surgeon is really pleased with the progress his heart has made. The rest of Dad has fallen apart but the heart surgery was a success. His kidneys failed so he needed to be treated by a kidney specialist. His breathing was inadequate so he needed a respiratory specialist. He has wounds now that aren’t healing properly so an infection control/wound care guy is now part of the team. But they don’t seem to really be a team. They are each acting separately on different parts of Dad as if those parts were not connected to each other and to the man who’s been using them all for seventy-three years. The hospice director went on about palliative care and I wondered if that is even paid lip service in the rest of the hospital. If that had been the philosophy of care from the beginning how would Dad be faring now?
I am amazed at what modern medicine can do but I’m not convinced it should be done in all cases. Looking back over the last three months we are all pretty much in agreement that the original surgery was a bad idea. The doctors aren’t saying that. Only one of them will even hint at it. At the time, not having the surgery wasn’t even really discussed as an option. Apparently the phrase “I’m sorry, there is nothing we can do for you.” is gone from the practice of modern medicine. I’ve met most of his doctors and they seem like decent people. No one set out to cause pain and suffering but that is the end result. It would have been better for Dad if his pulmonary artery ruptured in the comfort of his own home than in the operating room that first day. It would have sucked for a minute or two instead of slow torture over months. It would have broken Mom’s heart all at once instead of chipping away at it while she helplessly watched her husband die by degrees.
On Wednesday he told my mother that he was tired of it all, his body is wearing out and he wants to go home to God. To watch them together now is to see what marriage is all about. They celebrated their forty-eighth wedding anniversary in September in his hospital room. Over the years I have watched them snap at each other, kiss each other, yell, curse and walk away from each other. I’ve also seen them be there for each other like she is there for him now. They really are devoted to each other. The hospice director asked Mom when she thought they’d be ready to move Dad into the unit. Mom burst into tears. She knows this is the right thing for him. It’s what he wants and so she wants it for him. She doesn’t want him to suffer anymore. She said “We’ve been together for fifty years. It’s like you’re asking me when do I want to be cut in half.”
While Mom and I were upstairs the nurses put my dad back in his bed. I came back to his room to find my husband telling him all about what our kids have been up to. Dennis tells a very good story and Dad was smiling. We all have to wash our hands and wear rubber gloves in Dad’s hospital room but I could still feel how cold and swollen his hands were when I held them. It’s comforting and unnerving at the same time to see how at peace he is with his decision to stop treatment. He has lost so much weight he’s back down to his ‘fighting weight’. His muscle tone is all but gone. He looks old and frail and nothing like the scary guy I remember from childhood. I kissed him good-bye and brushed back his hair. He told me he loved me. I have no idea how I held it together but I did. I smiled at him and he smiled at me. I left that room knowing full well that I may never see him again. I was fine until we were driving home. Dennis had the radio scan for a station and it landed on classical music. I heard Bach’s “Jesu, Joy of Man’s Desiring” and I started bawling. In spite of everything and as long as I live, he will be my daddy and I’ll be his little girl. It’s just not right that my cat had a nicer death than my dad.
This is my dad and me in 1966. He’s about twenty-six years old and I’m a chubby seven or eight months old. I nearly lost this photo when our water heater blew. I’m so glad the important parts are still there.