The hospice nurses who helped me in the last month of my late wife’s life were astonishing in their gentle care and stoic confidence. Thank you for reminding me of how much that meant to me then. When we first heard the word hospice we resisted it, it was too hard to accept what it meant. But in practice it was just as you both so beautifully describe — it was real kindness in the form of competence.
Thank you for all of this, Susie. I've been reading Denice Napoli Long's Substack for a while--I really appreciate it.
Earlier this summer, I visited my aunt, who had been on hospice care for quite some time. She died the beginning of July, and I'm really glad that I was able to visit with her and her daughter and husband, who took care of her. She had a moveable table with her hospital bed; on it was chocolate, cigarettes, and a tiny Jesus. One day, I'll write this country song.
How did you discover her? I think her book in progress wit Ill be a smash. Chocolate, cigarettes and baby Jesus for the win. Such a hospice meal. I love the way the moral judgements are just laughingly swept away.
Please write this song! Or I’ll help! (I have a secret Patsy just screaming to get out).
Btw, everyone, I made an “audio typo” in my podcast at top. A couple times I referred to “Denise Napoli” as “Donna”! And that is because I have an affectionate memory of Donna Jo Napoli, linguistics and children’s book author. No, they’re not related; I asked. My apologies.
Everyday Hospice…so close I can almost taste it! Seriously, every word of both these narratives is true, honest and real. Unlike so much else in our current lives that feels like either an attack or an abandonment, we can be here for each other.
My mother was not in hospice and "white knuckled" her dying experience over the course of 24 hours. Obviously it was clear that something was not right; however none of her doctors ever mentioned the signs of active dying though I was her primary caregiver, nor was that information available through the Alzheimer's Association. It wasn't until I spoke with a nice lady at the coroner's office who asked me to describe my mother's last 72 hours that I was introduced to the concept of "active dying." This information should be more readily available to people who are caregivers and don't have a medical background, IMHO. I encourage all caregivers to look it up, the information is out there and will probably be useful at some point, at the same time realizing that each person's experience will be different.
Thank you for your compassion, Susie. In this case there was nothing that could have been done. I kinda knew she might be dying because her behavior was so unusual, and I knew that calling in medics wouldn't be helpful. In the end it was a good death while on vacation, a place in the desert that I now visit each year for her anniversary.
With regard to hospice care, I can empathize. I was my father's hospice home caregiver for six weeks until he passed on June 16, 2006. It was the second-hardest activity I have ever done. My brother would relieve me on the weekends, when I would stay with my now-wife. It was a struggle, waking myself every two hours to turn him so bedsores wouldn't form, but one formed anyway and when the nurses came by for bathing him and medication checks, they discovered the wound and I cried for an hour, believing I had failed.
I hope someone comforted you and told you otherwise! It’s so awful when you worry you’ve made a consequential mistake. And of course… mistakes will be made, and most of the time, no one could have known better.
I always say to families: bed sores at the end of life are NOT due to neglect or bad caregiving. They are part of the process. The skin is an organ like the kidneys and heart, and it breaks down, too. In fact there’s a type of bed sore called a Kennedy Ulcer that is considered a harbinger of death…it’s unavoidable, and natural. Sounds like you did an amazing job. You need have no regrets.
There seems to be an inner ring there missing a label. I propose “The dog or cat” for that one.
Omg, you’re right! Except the pets always seem to intuitively know how to behave! Lucky ripped everyone’s face off except Honey Lee’s, LOL.
Good kitty!
The hospice nurses who helped me in the last month of my late wife’s life were astonishing in their gentle care and stoic confidence. Thank you for reminding me of how much that meant to me then. When we first heard the word hospice we resisted it, it was too hard to accept what it meant. But in practice it was just as you both so beautifully describe — it was real kindness in the form of competence.
Oh Paul, I didn’t know we had this in common. Xoxo.
“Kindness in the form of competence” — Exactly! My favorite kind at this point.
Yeah, it’s a shit fellowship to share, but it does shortcut some complicated understandings. <3
Thank you for all of this, Susie. I've been reading Denice Napoli Long's Substack for a while--I really appreciate it.
Earlier this summer, I visited my aunt, who had been on hospice care for quite some time. She died the beginning of July, and I'm really glad that I was able to visit with her and her daughter and husband, who took care of her. She had a moveable table with her hospital bed; on it was chocolate, cigarettes, and a tiny Jesus. One day, I'll write this country song.
How did you discover her? I think her book in progress wit Ill be a smash. Chocolate, cigarettes and baby Jesus for the win. Such a hospice meal. I love the way the moral judgements are just laughingly swept away.
Please write this song! Or I’ll help! (I have a secret Patsy just screaming to get out).
I think someone else on here posted something that she had written. I agree--her book will be wonderful!
And let's totally write this song. I continue to plug away at the guitar and can play chords.
3 chords and the truth, baby!
Btw, everyone, I made an “audio typo” in my podcast at top. A couple times I referred to “Denise Napoli” as “Donna”! And that is because I have an affectionate memory of Donna Jo Napoli, linguistics and children’s book author. No, they’re not related; I asked. My apologies.
Everyone calls me Donna or Danielle or sometimes Nicole, weirdly.
Susie, I’m saving this one. Love.
Means a lot, from you!
I couldn’t have gone through my parents deaths without hospice. The kindest and most supportive people my husband and I ever met. Thank you 🙏
Thanks so much Shawn. You get it.
Everyday Hospice…so close I can almost taste it! Seriously, every word of both these narratives is true, honest and real. Unlike so much else in our current lives that feels like either an attack or an abandonment, we can be here for each other.
My mother was not in hospice and "white knuckled" her dying experience over the course of 24 hours. Obviously it was clear that something was not right; however none of her doctors ever mentioned the signs of active dying though I was her primary caregiver, nor was that information available through the Alzheimer's Association. It wasn't until I spoke with a nice lady at the coroner's office who asked me to describe my mother's last 72 hours that I was introduced to the concept of "active dying." This information should be more readily available to people who are caregivers and don't have a medical background, IMHO. I encourage all caregivers to look it up, the information is out there and will probably be useful at some point, at the same time realizing that each person's experience will be different.
Oh god, Jane, I’m so sorry. It burns me up. It’s so unfair we allow this suffering, as if there’s nothing to be done.
Thank you for your compassion, Susie. In this case there was nothing that could have been done. I kinda knew she might be dying because her behavior was so unusual, and I knew that calling in medics wouldn't be helpful. In the end it was a good death while on vacation, a place in the desert that I now visit each year for her anniversary.
With regard to hospice care, I can empathize. I was my father's hospice home caregiver for six weeks until he passed on June 16, 2006. It was the second-hardest activity I have ever done. My brother would relieve me on the weekends, when I would stay with my now-wife. It was a struggle, waking myself every two hours to turn him so bedsores wouldn't form, but one formed anyway and when the nurses came by for bathing him and medication checks, they discovered the wound and I cried for an hour, believing I had failed.
I hope someone comforted you and told you otherwise! It’s so awful when you worry you’ve made a consequential mistake. And of course… mistakes will be made, and most of the time, no one could have known better.
I always say to families: bed sores at the end of life are NOT due to neglect or bad caregiving. They are part of the process. The skin is an organ like the kidneys and heart, and it breaks down, too. In fact there’s a type of bed sore called a Kennedy Ulcer that is considered a harbinger of death…it’s unavoidable, and natural. Sounds like you did an amazing job. You need have no regrets.
The nurses said a few words of reassurance, albeit I needed more than that yet didn't expect them to hug me, of course. I dealt with it alone.