A hospice nurse travels into many abodes. So often these homes speak of dreams and accomplishments, or regrets and failures, but they always seem to frame a part of the owner’s story. Like Cathy’s final work of art, her dream home, or Phyllis’s waterside home that she had lived in her entire life, a little dilapidated, (like her), but oozing warmth and love from its walls with remembered stories.
When I heard there was a man in a chair, in a 5th wheel, who was admitted to hospice, I knew there’d be a “rest of the story”. He and his wife had been married less than a decade, a second time for them both, having lost other spouses years before, with adult children from these prior relationships.
Gary and Belinda had sold their house last year and bought this travel trailer. Their long held plan to go across country and see the sites abruptly ended after the trek was interrupted in just the next state when Gary developed some searing pain. Things happened quickly after that, Belinda told me. Numerous doctor appointments, a lethal diagnosis, and debilitating symptoms after only a few months kept Gary mostly in his recliner.
This is where I met him, in his chair, with his legs hugely swollen and nearly unable to carry him where he wanted to go. There was no space for a hospital bed, though I could see one would be needed in a short time. His one expressed desire: “To die at home”. There was the usual lengthy discussing and paper signing, and when he hugged me as I was leaving, he told me he was so glad I had come (not the customary response by all my patients!) and said he had been afraid- of dying- but felt reassured things would go as they should.
God, I thought, you must make it so.
Families are messy. They are full of discord, disagreement, and sometimes disloyal, other times intact only because of loyalty. But nonetheless, families manage to gather as a person is dying, often setting aside their differences and realizing that love is what matters in the end.
In a very brief time, the plans for a family reunion during the upcoming holiday shifted into planning the day’s care giving needs. Overnight, Gary declined from agonizingly getting out of his chair to the inability to do so, and his wife decided he must remain there; it was the only place he was comfortable. I can only say this was a challenge, to keep him clean and comfortable, and some back-breaking effort on all our parts. But Gary did indeed stay in his chair, and his fractured family gathered around, the thin walls bulging with bodies, pets, and stuff, and the family standing outside and taking turns inside brought him tangible comfort as he slipped into unconsciousness and death. They were a motley crew, but the palpable love and sadness caused my eyes to tear and my heart to swell. They stayed, making noise and more mess, and Belinda told me during some raucous laughter that Gary peacefully breathed his last.
Homes come in all kinds, but I am reminded of the saying, “Home is where the heart is”.
I just finished Atul Gawande’s book Being Mortal. It is excellent. This article perfectly describes the point of his book which is: the importance of quality of life at the end of life can not be overstated. How blessed this family was to have you as their hospice nurse. Thank you for sharing your experiences.
once again, thanks, amy.
It is a frequent desire to die at home and very challenging. Kudos to those who accomplish it.
Wonderful! Thanks for sharing. Reminds me of 2 patients I had who lived in their recliners and now a friend who is living in hers. Keep up the good work!