Dead Wrong: Let’s End Late-Life Suffering

My father was a farmer. He was rugged, hard-working, not afraid to get his hands dirty. On most days, he was up and in his work truck before the rest of us opened our eyes, while the skies were still dark. And after a long, hard day, he came home and fixed the house and coached my softball team and attended church every Sunday without fail. To him, going to a doctor was something you did if you had a bone sticking out or needed stitches. Otherwise, you took care of your own problems — either with a shot of something from the liquor cabinet or a hit of something loaded with spices to clear the sinuses — and then off you went to do whatever was next on the agenda.

He and Mom went on adventures, living in farming communities all over California, Hawaii, and finally, upon retiring, as expatriates in Panama. In his “retirement,” of course he had to have a “small” garden, which eventually expanded beyond their property to the empty lots around them. In his 70s, he was still up first thing in the morning and out to the fields of artichokes, kale, and potatoes.

We joked that I got my stubborn nature from him. Occasionally that stubbornness had us butting heads — like the last time he came to visit. I brought up his and Mom’s healthcare, asking how long it had been since they’d had a physical. He responded in the quintessential Dad way: with a rude noise and a dismissive wave of his hand. Doctors were for sick people, and Dad was fit and trim and in better shape than I was.

All his life Dad cherished his freedom and independence, but what do you do when you lose your independence and that most basic freedom — the freedom to choose?

In November 2016, I got the call from Mom. Something was wrong with Dad. They were heading to Panama City for tests after the initial visit — to a dentist of all things — had come up with worrisome results.

Those tests revealed stage IV stomach cancer.

Among women, a “sexy schoolgirl” mode became fashionable: knee socks, short kilts, too-small sweaters, backpacks.

We were fortunate to have one of the nation’s best oncology hospitals in Pittsburgh, where I lived, so we decided they should come stay with me so I could look after Mom while he underwent cancer treatment.

Only 10 days had passed from the first sign of a problem to the day Dad got off the plane in Pittsburgh. He was shockingly thin and jaundiced, bent over and in obvious pain. He was exhausted. I pretended nothing was wrong as I hugged him and Mom. It’s how we handle these things.

We got Dad into the hospital right away. I could tell even without the hesitancy from his team that his outlook was not good. Further tests discovered the cancer was attacking his blood cells, thickening his blood and causing multiple and continuing strokes that were literally killing his brain. The disease was taking Dad away before he even had the chance to fight it.

It progressed, and he deteriorated, with shocking speed. Every day he was less able to speak, until he was unable to do so at all. And every day he made it clear he just wanted to be home with us. One night, he even fell while attempting to get out of bed on his own in his usual stubborn-Dad way. When I asked him why, all he had to say was “Go home.”

As his ability to communicate failed, Dad issued four last instructions for me:

1. Take care of Mom.

2. Take me out back and just shoot me.

3. I really want to have a sip of beer one last time.

4. Home. I want to die at home.

Eventually, the doctors agreed: There was nothing they could do. They would send him home with us and he would be made comfortable. I thought my years of experience as a caregiver would serve me well. I had taken care of the elderly for a number of years for very little compensation, but I liked it and felt I was doing a good thing.

We had a hospital bed brought in. Shortly after, Dad was brought in by an ambulance service. We used small sponge sticks to moisten his mouth and lips, as he was no longer able to drink anything. His eyes were open and he was looking at me, and I took care of instruction No. 3 by dipping the sponge in a beer from the fridge and placing it on his tongue. I like to think he was aware enough to enjoy the taste of it.

We arranged care with a hospice provider, but the most they could schedule was one visit a day from a nurse and once a day from a caregiver. My mind boggled, but I told myself I could do it — I had experience, after all. So I tried to remember how to change diapers and wet bedding with a person still in the bed, and how to calm someone writhing in pain and distress — someone who was unable to do anything for himself.

But this time it was Dad. And that made it all different. Mom was there, of course, but she was helpless and traumatized and unable to physically help in any case. Hiring other caregivers would have been too costly, and insurance wouldn’t pay more. Besides, I could do this last thing for my dad. As I said, I got my stubbornness from him.

As it became worse by the hour, I wrangled phone calls with doctors and the hospice agency. I called when the catheter fell out, and when he was in obvious pain and the meds were not enough. Sometimes the response was timely; other times it was not.

The nurses themselves were lovely — gentle with him and careful and soft spoken, sensitive to our grief and imminent loss. But they were frazzled and ridiculously overworked. One nurse told me she was the only nurse for all the cases in a service area that spanned two counties. She had a two-hour commute to see us from her last case. When I called the office to try to get more help, often I was made to feel I was being a pain by pestering them.

I was given the bottles of medicine to administer. It was hard keeping track of the different cycles for all the different meds in between changing diapers and bedclothes. If I was late with the morphine, he would be up moaning and crying out and thrashing in pain. The nurse told me, “It’s close now. Apply the medication as needed.”

This was never how I imagined it when I allowed my mind to wander the path of what would happen when a loved one was terminal — which, let’s admit, is something most of us shy away from in our musings. After reading about others who had gone through this, I always imagined a serene, peaceful process. I anticipated sitting by a bed and holding hands, meaningful final communication, and a chance to say goodbye amid conscientious nurses there for my loved one’s slightest twinge or need.

I know that was unrealistic, but after all I had heard about hospice care, I truly did expect there to be no pain. I expected my father to be spared embarrassment and shame. I did not expect to be so caught up in the minutiae of managing this process largely on my own, and that the caregivers I was able to access would be so overworked and frazzled, unable to invest themselves here in the moment with us. I never thought we would be just one stop on a long list for the day.

I anticipated sitting by a bed and holding hands, meaningful final communication, and a chance to say goodbye.

Perhaps, like almost everything else in our “healthcare” system, it all comes down to money. If I had more or better insurance, perhaps many of my expectations would have been met. But that is so wrong.

It was over in four days. Exhausted, I crashed hard. While I was sleeping, Mom had gone to administer Dad’s morphine and found he was not breathing. I walked into the bedroom and right away I could sense the difference. My dad had finally slipped away and was peaceful.

It’s a year later now. These are the lessons I learned from my experience — and everyone should heed them: keep having yearly physicals; make certain your final wishes are legally filed along with your will; please talk with your loved ones about what you want for your funeral and try to see it is paid for. Make sure your insurance is intact and is the best you can possibly afford. Your passing should be as easy as you can make it for your loved ones.

Though I’m glad Dad is at peace, I’m also left with a lot of anger. I am angry that Dad was never given the option to arrange his own end in a way he would have preferred. For a fiercely independent and iron-willed man, there was no option to take a pill and go to sleep to end the suffering. I am angry that his final days were so agonizing and ugly after he had led such an amazing, beautiful life. And I am filled with grief that so many in this country are left to watch loved ones suffer and die like this — usually for much longer than four days — with inadequate care from an industry staffed by some of the most compassionate, undercompensated, underappreciated, and overworked folks I know.

As Americans, we pride ourselves on our freedoms. It seems to me that we should also have the basic freedom to decide to pass as peacefully as possible when confronted by the fact that there is no hope for recovery. It’s how we “humanely” free our beloved pets from their pain. How can we deny that freedom from our human loved ones — and from ourselves?

What’s happening now is just wrong. All of it.

Dawniel Kupsch is a wife and mother of two boys; she has served as caregiver for the elderly and provided therapy support for autistic children.

This article is featured in the May/June 2018 issue of The Saturday Evening Post. Subscribe to the magazine for more art, inspiring stories, fiction, humor, and features from our archives.