Hospice means the end of the line. It’s when someone raises the white flag of surrender, tosses in the towel to declare it’s over, takes the final walk into the sunset.
Which is not true about hospice care!
Except, for me, it is true.
This will be my last weekly Hospice Matters post.
Back in 1989, I had my first hospice encounter with a farm family in Wisconsin. A husband—also a father and grandfather—was dying. I spent time visiting him and his family while they were supported by a local hospice agency. About a month before Christmas, a member of the church I then served asked me to meet with his dying neighbor. My church member and the dying man were dairy farmers, quiet men who had known each other since they were knee high to a grasshopper. I was glad for the opportunity to add to the family’s support. In the years that followed, a few of my sermon stories came from those yuletide trips to their farm. I have also written about the experience.
In the late 1990s, I worked as a hospice chaplain and wrote weekly essays about my my new hospice insights, my ah-ha discoveries, and my patients (always protecting confidentiality). The only place those reflections were “published” was inside a clear plastic holder on the top shelf of my office cubicle. I positioned the holder so my hospice colleagues could see my brilliant thoughts as they hurried toward their cubicles. A few actually read ‘em and made positive comments to me.
Not long after starting my part-time work for the big bucks in 2012 as a Bereavement Support Specialist—focused on grief support for our hospice families—I also began this website. Since October 2012, I have posted an essay every week. Based on eight years of filling a computer screen with words multiplied by fifty-two weeks a year . . . that’s over 400 weekly essays.
I think I’ve written enough.
Back in July 2018, I officially retired as an active clergy in the United Methodist Church, but still wanted to keep the hospice gig going. Two years after that retirement, I submitted my resignation to the over-worked human resources folks at my agency. At the end of August 2020, I made my last bereavement phone call, completed my last chart note (darn, how I miss charting), and chose not to do an exit interview.
The gig was up!
Part of my decision was influenced by the pandemic. Mostly though, it seemed the right time for that walk into the sunset.
After eight years, I don’t think there’s much more—as a non-medical fella—that I can effectively add to hospice concerns, questions, or trivia. However, I think much of what has been posted on this site will continue to be relevant. I may not feel that way in a year. But for now, I plan to keep Hospice Matters available on the web. The book I published in 2019, A Companion for the Hospice Journey, probably already has several out-of-date statements. Though, as with this website, there are some hospice-related matters—like fears toward certain medications, wrongly thinking hospice is “surrendering,” the importance of considering hospice earlier rather than later—that will forever be relevant for anyone considering end-of-life care.
- If someone posts a comment on Hospice Matters, I will respond.
- If someone asks a question of me, I will try to answer.
In concluding these weekly wonderings, I like to think I’ve helped a few folks. Nothing I wrote here went viral across the web. I never became an overnight hospice sensation, a go-to guru for grief! But I made an effort to acknowledge every comment that appeared on a post. I never had anyone vehemently disagree with my information or opinions. (Hey, no lawsuits!) I’ve had readers add a meaningful “thank you” to what I tried to explain.
Running Hospice Matters helped me continue to learn about hospice as I got responses from dying patients and grieving families. In closing, I think of two “lessons.” One is specific; one general.
Far and away, the specific essay that garnered the most reader reaction involved “lingering death.” Since its modern beginnings, hospice’s comfort care has been for those with six months or less to live. But some live well past that half-year mark. They seem to linger. Caregivers burn out. Caregivers begin to feel they are trapped in a Twilight Zone episode or are having a Groundhog Day event where the hours and days not only keep repeating, they never seem to end. I may try to write more in the future about this anguished part of caregiving. If you want to read the 30-40 comments, go here. Warning: they are not easy reading.
Secondly, I’m glad I gave folks a safe spot to vent. Again, read the comments about loved ones who linger. I had no answers for those exhausted caregivers, but the act of sharing their difficult tales, and complaining about how unfair things were, may have helped them a smidgen. Throughout all of the comments over the eight years, including many upbeat ones, there were stories shared about loved ones and about the compassion of the hospice staff. I’m glad I gave an opportunity with Hospice Matters for readers to express frustration and offer gratitude.
So, these musings end.
Thanks for reading.
(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)by