Dad transitioned to home hospice last month (September 2023). This has been pretty devastating.

Steve transformed dramatically in March 2022. He was always tired and no longer talkative. He was confused sometimes, forgetting words, and had a short temper. He was also so physically weak, it became unthinkable that he was doing sit-ups and jumping jacks just weeks earlier. His primary care doctor prescribed antibiotics suspecting a urinary tract infection or something similar. Eileen was troubled by his increasingly strange behavior and eventually we brought him to the ER. That was the start of so much uncertainty and multiple hospital stays. He was diagnosed with stage 4 metastatic melanoma and a stroke in May 2022. He endured all kinds of treatments and their horrible side-effects. It was terrible.

Today, he is home. He is not experiencing any pain. He is eating well and moving around the house with a walker. His biggest discomfort is persistently itchy skin, which the hospice team is helping to manage. His normal interest in books and music fluctuates. He still talks very little and spends most days feeling very tired. When he has the energy, he keeps up his daily rituals of drinking coffee and reading the paper. He still keeps a stack of books at his side and listens to the news and his music.

Thank you to everyone who has been visiting and sending well-wishes. If you would like to be in touch, we have created a care community called Supporting the Jenkinses, which you are invited to join: my.lotsahelpinghands.com/community/jenkins

Love,

Elizabeth and Sarah

Sarah’s family is preparing for a beach visit. Preparing is often the greater part of time spent on an upcoming event. Eileen made pancakes this morning. Although yesterday was not painful it seems to have drained me physically.

I was imagining a cumbersome piece of rubber that would go round my torso but of course it was all cyber in creation. It took about an hour.

Mark called yesterday. He was just holding back from “bothering us.” I promised to call him more often.

It has really helped having Sarah around. She drove yesterday.

The group has left and it’s strangely quiet. I was not looking forward to their leaving but now I feel deflated.

I had a run in with Alice this morning. She was screaming in the kitchen and had been screaming all morning. I yelled at her a bit irrationally and she screamed even more. I talked to Sarah about it later and she said that it was hard to be rational when a little kid is screaming. I did not feel better about it. Later when they were leaving, Alice turned to me in her silky toddler voice and said “I’ll miss you granpa.”

Sheesh