We never know just how it will be at the end of life. You can think you have it figured out, you may even be sure you know what you believe and what lies ahead, but until you face it for real you just never know.
And the longer you have to face your mortality the more it may morph, changing, adapting, adjusting and morphing again.
In March my mom had a stroke. It came hard and fast and left her partially paralyzed and without speech. I had seen my mother give end of life care to several others including my grandma Helen, her mother. Mom had shown me the way to take care of her at the end.
She was graceful, dignified. My sister and I got her set up with hospice, which included a hospital bed in her home and a schedule of caregivers to bathe her and care for her. We called all of the grandchildren and great grandchildren and said come see her to say goodbye.
Initially, we had made her smoothies. On one visit by the nurse she asked us if we were trying to prolong this. We said no. She said then stop giving her the smoothies. So as directed we withdrew everything but the “comfort” package. Comfort package is code for lorazepam and morphine.
Mom took to the comfort package like a champ. She came to relish the flavored sponges that would wet her mouth and gave a little flavor. The hospice folks were real pros. They were caring and took time to know us. They gave us literature that was very helpful as it explained everything that we could expect so that when it happened we were prepared.
And just as they said, after about a week she began to shut down. She slept most of the time. One night at just after one am she left, 1:11 am exactly. And just like that a life well lived was done, an angel transitioned to another plane at 84.
In September my father had a stroke. Dad is 93 and has been through quadruple bypass surgery and bladder cancer. Mom had told me that he thought he would die in his fifties. But here he was, 93 and just suffered a stroke. I flew to LA to see him in the hospital.
I thought I knew what the next steps would be. But dad’s stroke was different. They called it a transitory episode meaning the symptoms came and went. One moment his face would be drooped on one side and a little later not so much.
I spoke with the physician. No more surgeries or heroic efforts. He has a medical directive and not only do I know his wishes, but he can still articulate them. Insofar as his condition was diminished by the stroke the prognosis is of progressive decline so the doctor’s orders were for hospice.
We got him set up at home and met with the medical staff. We went over the comfort package details and inventoried his battery of medications. Since the directive is for comfort only, the other meds were discontinued. We met with the social worker and the chaplain. Dad’s full-time care giver, Butch, and I got on the same page for his day to day care. Then I flew back to Sacramento to get back to life, staying in close contact.
Before I left, we had a conversation about what the end would be like. He began to cry and I asked if he thought he wouldn’t see me again. So I told him I would be back the next week.
And back I came.
Three days before I was to return, dad called and asked me to jump on a plane and bring a gun. He wanted me to take him to the beach and leave him in the car and he would do the rest. I said, “you know they won’t let me on a plane with a gun, dad!” I had no intention of bringing him a gun, but this gave me some insight into his state of mind.
When I visited next we had a deep, philosophical conversation. He started with the fact that Butch thought he was afraid. I asked him if he was. He said that yes, he probably was. So I talked to him at length about fear and how it was an emotion based largely on the unknown. He agreed that was probably the case. I suggested that he could work around the fear by defining for himself what would happen.
I suggested he create an elaborate scenario regarding what he could expect. Once he had imagined all of the details he should lean into it and know that it would be just that way. This way he could remove the unknown and with it the fear. He mulled it over a bit and we moved on.
He said Butch was catholic and thought he should come to God before the end. I told him I wasn’t sure about all of the catholic rigmarole, what with the genuflection and guilt and such, but that I thought there were worse things he could do. I shared that I believed and had faced this question in earnest when I had gone through cancer. I had talked to him about faith before and he was resistant, but now it was more poignant.
A math teacher, dad was a numbers guy. I asked him if he had a system when he went to Vegas. He said sure. I suggested that if he accepted God and was right the result would be eternal salvation. And if he was wrong, he asked. I said it wouldn’t really matter. He could see it as a hedge if it made him feel better. Again he paused and reflected. He said he would give it some thought.
It was then that he told me that when the nurse had come he had told her that he was ready to go. I asked him what she said. He told me that she said that neither Butch nor I could do anything like administer drugs or give him a gun. If he was ready all he had to do was to stop eating.
I asked him if he wanted me to tell him what it was like for my mom. They had been divorced for over 30 years- longer than they had been married. But he always asked about her. He said yes. So I told him how it went for her, when she stopped eating it was just a matter of a few days. I explained that the hospice folks were very good and the comfort measures they have would make him, well, comfortable as his body began to shut down.
Again he was reflective. He said he was tired and wanted to rest. No surprise, I was tired. We had had a wide ranging, deep conversation about things that are difficult. Butch and I put him in bed. He fell asleep and Butch sat with him while I tried to get some work done.
After an hour he called for me. I went into his room and held his hand as he fell asleep. He grasped my hand while he slept for two hours. It was all I could do to sit peacefully with him. I was missing a lot of work and thinking how far behind I was; I was contemplating my father’s end of life just months after my mom had transitioned; I had just had deep conversations about the difficult topic of end of life; I had been triggered to contemplate my own mortality; and I was faced with the dilemma of wanting him to pass and find peace and then feeling bad for wanting him to die. I asked God what the lesson for me was here and prayed that I learn it quickly so that he could take him, and in fact asked God to take him.
This is a deeply moral juxtaposition that has no immediate, nor easy resolution. I found myself in a situation that was in stark contrast to my recent experience with my mother.
The hospice chaplain visited and we talked. I think she came for me more than for dad as she didn’t want to wake him. We talked about the conversations that had been going on. She said he could get hungry and want to eat. I said that decision was his, that I had no agenda or expectation. She had encouraged him to be curious about what lies ahead and to try to resolve any lingering issues or regrets and at that time he had said that he felt like he had.
I left to go back to where I was staying and get some work done and told Butch I would be back around noon the next day.
When I returned the next day dad was sitting at the table eating some lunch. It was clear that he was not going to stop eating. Butch told me that he had taken dad to church in the morning and after dad said he was hungry and wanted to go to Denny’s. I told him Denny’s was probably the thing that would do him in.
I told him that his comfort was the most important thing and that if he wanted to eat then he should eat. I told him that no one would withhold food from him, force medicine on him or put him in a home.
And so life goes on. He is not taking the dozens of pills he was on before the stroke for blood pressure, blood sugar, thyroid, etc, etc, etc., and yet his blood pressure is stable and there have been no ill effects from stopping the medicines. All we can do is make him comfortable while we wait for the inevitable. Life is mysterious and sometimes it is difficult, but there are opportunities for growth and expressions of humanity in every situation.
My father was there for me when I was toothless and in diapers and life has given me the opportunity to return the favor and in so doing I think I have finally grown up.