Dying is easy until given an alternative

“Heaven is a wonderful place, filled with glory and grace,

I want to see my savior’s face, heaven is a wonderful place.

I want to go there”

It was fun to lead the singing of that song, with soprano, tenor and bass parts, at Twinlow Camp. That was in the 1970’s, before professional ministry, before seminary.

I hadn’t given thought to the theology of heaven being a better place than this life. It must have felt appropriate to encourage preteens to live a good life because heaven would be the reward at the end. That sort of thinking remains (sadly) within much church teaching. The natural conclusion is that if it’s such a great place, we should not be afraid of dying, ready to go at any time.

Maybe this is why faith-filled Christians willingly assent to advance medical directives which preclude extreme measures to sustain life. When Larry first got ill, we updated our wills, we signed the directive, we made copies, we took them to our doctor’s office, we brought them with us to the hospital, we assumed they remained on file. The question was asked at every admission...

But something shifted on May 18, 2017. At the beginning his annual day-long reevaluation for a potential kidney transplant, Larry was told that IF he were to be given a kidney it was important to rescind his “Do Not Resuscitate” order, because the goal of a transplant was to be given every chance to live.

At the end of that same day, it was clear to me that the list of risks of survival was growing. This is what I heard:

1. He lacked strength and stamina. He had several falls since December, and being hospitalized for a week would weaken him further. He might end up in  nursing home.
2. The arteries they would use to attach the kidney were calcified, and may not provide adequate blood flow.
3. His constant low blood pressure may not support the flow needed to supply the new kidney.
4. His residual abdominal fat would make the incision harder to heal.
5. He may become diabetic and insulin dependent
6. He would have to comply with all medication--for ever.

I heard all the cautions, all the doubts, and all the obstacles. It validated the concerns about complications I had harbored since the beginning.

All Larry heard was he needed to rescind his DNR if he was given a kidney.

He was asked if he still wanted to pursue a transplant. He said yes. 

On the way home he admitted he was shocked, saddened, and scared.

A week later, the call came, not with the news Larry had waited for. He was suspended from the transplant list and needed to increase his strength, not have any more falls, and be able to walk a mile every day. He would be re-evaluated in six months.

The magical thinking of a transplant vanished. It was the outcome I had expected all along. This news, based on the evidence anyone could see, was devastating.

I tried to rebalance our lives by listening to the concerns of family for my own energy and well-being. 

In the final month of his life, I encouraged Larry to begin using a wheelchair when we went out. He refused, saying he only knew “Pops” (his grandfather) in a wheelchair. Once he got in one, he didn’t believe he would ever get out.

Based on my exhaustion and the stress of caregiving, along with the danger of a blood infection, his doctor decided he needed to return to hemodialysis. He was resigned but not looking forward to the four hours in the clinic, three days a week, with the side effects of severe headaches, lowered body temperature, the need to change his diet (again), and having less freedom, even less hope. 

The physical therapists, working with him in the hospital, talked about his need to spend some time in a rehabilitation center or nursing home--raising another great fear of never coming home.

And yet, when the hospital called Sunday morning, June 25th, to tell me Larry was on a ventilator after suffering cardiac arrest, I was surprised he had been resuscitated. I grabbed another copy of his DNR directive, feeling neither anger or sadness, only determination to let him go, as I believe he believed, to that “wonderful place.” 

Hospitals are very cautious about such decisions. Their job is to do everything to sustain life, unless told otherwise.They received my paperwork. The doctor needed to talk to me, to be sure. I shared with Larry’s nurse, and the family gathered, ready to say good-bye. Then, Larry was successfully weaned off life-support. While I was out of the room, he was asked about his DNR order. “No, it couldn’t be in place IF he wanted a kidney,” he said.

Those were gentle, hard moments when I spoke to him again about his determination to stay alive for that far-off, unlikely potential. 

He had no awareness of being already dead, without a heart beat for fifteen minutes. There was no light drawing him forward, no warmth surrounding him. He was afraid. He did not want to leave me. Yet, he knew. We agreed it might be time. The order was in place.

Perhaps his vision of the “girl in the yellow dress” standing at the edge of his bed during the last day of his life was enough to help him let go of this precious life. Perhaps he has discovered glory and grace. I know of no one more deserving of resting in peace.

I woke this morning at  five a.m. One year from the hour of his second death. I needed to remember, to sort through, to write. I needed to wonder again.