I recently had a very short, intense, caregiving experience. It was Thursday morning, July 27th, and my mother’s husband, whose health had been slowly declining for years, woke panicked and gasping for breath. She asked him if he wanted her to call 911. He nodded emphatically.
A whirl of sirens and red lights whisked him away and my 82-year-old mother drove to the hospital dazed and scared. The emergency room doctors noted his frail body, low blood pressure, and severe dehydration—it had been days since he’d eaten more than a spoonful or taken more than a sip of water. But this time, they did not rush to rehydrate him. They took no life-saving measures at all. Instead, they called Hospice.
Another whirl, as Hospice, swooped in. A hospital bed set up in the bedroom. Introductions to the on-call nurse and caregivers. Folders of information on what to expect. And meds—anti-anxiety and morphine. The Hospice phone number was on the refrigerator, and she was told she could call it anytime. Then they left.
I flew down to California the next morning to help her, and he died peacefully just two days later. It was an extremely difficult couple of days, mentally and physically, as we tried to care for him and keep him comfortable while his body rapidly failed. It doesn’t matter how many articles I’ve read about caregiving, none could have prepared me for that experience. I’ve described it as horrendous. And it was a gift too—to be able to be with my mother, and help her care for her loved one at his end.
My mother had been his caregiver for years. I saw how it wore on her and aged her. She is now experiencing both loss and relief, and all the mixed emotions and guilt that comes with it. But as deaths go, it was a good death.
The medical establishment is slowly starting to change. The prolong-a-life-at-all-costs mentality is shifting, and doctors are beginning to recognize us as mortal beings where quality, not quantity, is what really matters.
Discussion4 Comments
I’m sorry your hospice experience was so lacking. As a retired hospice RN I got to work with a good one – Providence Hospice of Snohomish County. There are volunteers that could sit with you, a harpist and massage therapist that are available for actively dying pt. And a few other services that might have supported you and your mother in this confusing and anxiety ridden time. Not all hospice services are delivered the same. So sad but true.
Thank you for your kind words, Kay. My mother lives in a small town, so I’m sure staffing was an issue. My stepfather declined very rapidly, and it was a weekend. I had convinced my mother that if he lived through the weekend, that we needed to put him in inpatient hospice as they did have beds available and it was just too much for us to care for, but he died on Sunday. I was certainly an eye-opening experience for me!
After years of working in hospice I too know it’s benefits BUT you say volunteers/harpist/massage therapist’s are available….. this was a two day event and it would be extremely UNLIKELY that hospice could have arranged those support people so quickly. Don’t get me wrong, I’m a strong advocate for bringing hospice on board but their services are limited and family DO need to step in for the very difficult job of 24 hour care.
New forms will be needed that let us prospectively choose a natural death at the end of life.