Compassionate Care at Home: A Couple’s Journey Through Palliative Care and Hospice Support
Regis and Carolyn were looking forward to a cozy retirement, snuggled in with their cats, Jake and Elwood, who were named after characters from “The Blues Brothers.” Regis loved all things musical.
But on Christmas Eve 2020, Regis was diagnosed with ALS. He died on Christmas Eve 2023.
The couple was able to get home health support services, gradually increasing as Regis’ mobility decreased and health issues increased. Regis was always very clear on wanting to remain at home, to never receive a tracheostomy to be placed on a permanent ventilator, and to have death with dignity when the time came.
Starting in May 2023, Regis began a series of hospitalizations. It was during a stay at Central Maine Medical Center in Lewiston that the couple first encountered Andwell’s Palliative Care team.
“We both really enjoyed speaking with them,” said Carolyn. “Regis, in particular, enjoyed speaking with Dr. Cynthia DeSoi.”
They continued to meet with the Palliative Care team during Regis’ subsequent hospitalizations at St. Mary’s Medical Center, and via Zoom and house calls in between.
“We were able to get information about what hospice is, what it entails, and how and when to make that decision,” Carolyn said.
“The day Regis went into the hospital in mid-December with what turned out to be COVID-19, we were supposed to Zoom with Dr. Jon Taylor, his ALS doctor at Mid Coast Hospital, about going on hospice.”
By the time Regis came home the hospice arrangements with Andwell had been made.
“Regis was only home four days before he passed away,” said Carolyn. “We came home on Thursday. He seemed to be better on Friday but on Saturday, he started to go downhill. A wonderful nurse came over to meet with Regis and take his vitals. He and I then had a conversation at the kitchen table where he explained that Regis was doing what they call transitioning. He said, ‘If there are people that you want to come see him, now is the time.’ It was a great comfort to me to have someone so caring provide support and direction. Friends and family were able to come and say goodbye and that’s huge for all of us.”
The nurse also explained that a nurse would be available to pronounce time of death and call the funeral home when the time came.
At quarter of 11 p.m. on Christmas Eve, neither Carolyn nor the home health aide holding Regis’ other hand could find a pulse.
“The nurse who arrived later provided me with much-needed support and closure,” she said. “Having the support those last four days, knowing that there was an agency whose mission it was to support someone like Regis who wanted to die at home and who was ready to go – I’d never been through that – a lot of us haven’t and we need guidance and help.”
Support from Andwell is ongoing. Last fall, Carolyn attended her first bereavement support group. She’s now on her third. “The second one was about making it through the holidays, and that was really helpful,” Carolyn said. “I didn’t consider myself a group person but am finding them very helpful. The one I’m in now is for people who have lost their partners. There’s a community of support there, and shared experience. I would definitely be open to other groups, but I would also say that I am feeling stronger and more resilient, and I’m sure participation in the groups has helped.”
Regis and Carolyn’s experience is a powerful reminder of what compassionate care can mean at life’s most vulnerable moments. From the earliest conversations with the Palliative Care team to the deep comfort provided through hospice and the ongoing support of bereavement services, Andwell walked beside them every step of the way.
If you or someone you love is facing serious illness, exploring end-of-life care options, or grieving the loss of a partner, we invite you to learn more about the support Andwell provides:
These programs are available because of the generosity of those who believe in compassionate, community-centered care. If Regis and Carolyn’s story moved you, please consider making a gift to support others on their journey.
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