Wilson’s Choice - part 2

Wilson’s kidneys were failing. As his daughter-in-law Sally Whitten described in Part 1, Wilson was having difficulty choosing treatment. Dialysis which might extend his life, but he’d have to live in a nursing home near the dialysis center. Medical management would focus on keeping him comfortable at home, but he might die sooner. To read Part 1 click here.

As Wilson’s kidney function declined and his body retained fluid, he’d become short of breath and scared. Sometimes he’d call an ambulance. My husband and I might run a short errand and come home to an ambulance in the driveway. The hospital would provide Wilson oxygen and medications to clear the fluid, and then send him home.

But it wasn’t all mini crises and confusion. Wilson shared stories about the family farm and ancestors we’d never met. We celebrated holidays and had lots of visits from family and friends. He was clearly interested and entertained by all that activity. He also loved to ride the back roads around town, help stack firewood, and help in the garden when possible. He tired easily, so we kept a plastic lawn chair nearby so he could take breaks. A favorite car ride was to the local ice cream shop for a sugar-free cone and a tour around town while he slowly ate his treat. He took joy in simple things in life, a sunny day, being outside, watching birds at the feeders, the occasional deer in the yard, and being with family. 

Wilson had been with us about eight months when the nephrologist called to say it was time to make a decision.

Wilson’s lab values were severely abnormal, the physician told us. If Wilson wanted dialysis, it had to be now. With that, Wilson agreed.

I started packing Wilson’s bag for the visit to the hospital where he’d get the catheter placed. And then Wilson changed his mind for the final time. He refused to go. We spoke at length about what this meant. I suggested we speak with his physician about hospice. I cried, and Wilson held my hand and told me it would all be OK.

“Someday I’m going to go to bed and not get up.” I told him it rarely works that way . . .

Soon after, Wilson visited his nephrologist. He was told he had two months to live.

Within days, hospice nurses arrived and began monitoring vital signs and health status. The emphasis now was on Wilson’s comfort and quality of life, not its longevity. A hospice volunteer came regularly and Wilson loved the companionship and opportunity to share stories. The local priest often visited and provided comfort. Wilson used an oxygen when he became short of breath. He was still able to care for himself, dressing, bathing, and walking up stairs. We offered him a bedroom on the first floor and he announced “I’ve been going up stairs since I was two years old. I’m going to continue doing so.” 

Another thing about those days: Wilson had a serious sweet tooth. Back when he was more able, he’d sneak off to the local doughnut shop for a jelly-filled doughnut whenever he could. Those donuts spiked his blood sugar levels, and he ‘d give himself extra insulin. But he’d often administer too much and drop his blood sugar levels dangerously low. We’d find him slumped in a chair, barely coherent.

We’d argue about food restrictions and I know this was not always well received. Wilson was an intelligent, proud, and independent man, and I have no doubt my food instructions frustrated him. However, once Wilson chose medical management and hospice, he was actually free to enjoy all those forbidden items without guilt. I began cooking all his favorite meals and pastries and he took a very serious interest in my meal planning. I was happy to see Wilson enjoying these special foods, but it was also challenging for me to go from a protector role to feeling like a co-conspirator encouraging these forbidden foods.

One day I asked Wilson about his funeral. He responded, “I won’t care, I’ll be dead.” I knew he wanted to be buried, so I shot back, “OK then, cremation it is.”  Well, that woke him up and we had a very open conversation about his last wishes. I promised we would honor everything he shared and we did.

About two months into hospice, I came home from work to find Wilson watching TV, but clearly short of breath. He admitted feeling “not so good.” I hooked up his oxygen and called the hospice nurse. Once the nurse evaluated him, she felt he should be moved to the hospice facility for symptom management.  We agreed.

At the hospice facility he was relaxed, comfortable, and full of stories about how nice all the employees were. We visited for a few hours, then headed home. The next day was a similar, but he was a bit sleepier. On day three, Wilson was even sleepier. During brief wakeful periods, he was his usual self, asking about local activities and my job, and telling us he was fine and that we could go home.

We left the facility later that evening, telling Wilson we’d return the next day. We barely made it home when Wilson’s nurse called to tell us he had died. Even knowing all the major facts of his illness, his decline, his being on hospice, and that he was clearly deteriorating, we were somehow shocked by this phone call.

For years, Wilson would tell me, “Someday I’m going to go to bed and not get up.” I used to tease him and say it doesn’t work that way, but he insisted he had a plan. Wilson loved to bring up this plan occasionally, knowing I’d respond with a laugh, but he held firmly to the belief that he’d just go to bed and never get up again.  

I learned that after we left that day, despite his being so sleepy, Wilson called the nurses so he could get out of bed. They helped him into his chair and remade his bed. They all chatted as they changed his sheets and Wilson showed no signs of distress. The nurses got him back into bed, and when they checked to make sure he was comfortable, they realized he’d stopped breathing.

It still makes me smile, laugh actually, to think his last act was to go to bed and not get up.  

That was a very challenging year for me, caring for both my husband and father-in-law with serious health issues. Yet, I know that year gave Wilson comfort and I’m glad we had that time with him. He had a particular way of phrasing things and often said, “I thank you good people.” We always laughed when he said it. 

Rest in peace Wilson. Know you were loved and are still very much missed.

Sally Whitten is a retired respiratory therapist who spent most of her career at Maine Medical Center in Portland. Her work included adult critical care and 10 years as the Director of Respiratory Care. She was involved in multiple end of life discussions with medical teams, family members, and whenever possible, patients themselves. “Those hospital discussions, combined with end of life discussions with my own family, taught me the importance of this topic,” she says.