This is a wonderfully insightful and empathic look at something I am ashamed to say I never thought of before. Thank you for opening my eyes and heart.
Thanks so much, Joyce. If you are very taken by the subject, there is a whole book full of hospice staff talking about their work and what draws them to it. getbook.at/Hospice I am so full of admiration for them, I love giving them an airing. I may offer excerpts from some more interviews in the future from that book and others I have written (Daisy is from a book I wrote about AIDS – about the death of a toddler told lovingly by her mother – and if you can read it without misting up, you're a better man than I am!)
My dad became very picky during hospice. It would frustrate me because he wasn’t like that before. But I would slowly learn he had trouble tasting subtleties of food, because he ruined his taste buds from a thirty year stretch of smoking. I shopped for him during the pandemic lockdown and originally bought most on his shopping list. That was until, a healthcare worker told me he was getting way too much sodium. So I cut that in half. He hated that. Later, I learned about his ruined taste buds. A good hospice chef, who may understand these issues is as good as gold. It’s all about improving their quality of life as Andrew says.
My friend is a doctor from Thailand and she worked with cancer patients. She said the way we handle food for people who are at the very end of their lives is different in the West. She told me when patients stop wanting to eat, it puts the body in a state where they feel far less pain allowing them to die with greater ease. She found our practice of continuing to nourish those who are on the cusp of death well-meaning but ultimately it leaves the patient in more pain.
Interesting. I am not a medical doctor, so I can't say whether I think your friend is right or wrong. But patients in hospice care tend to get very good pain control. I do think it is good for people to have those last conversations, if they can.
This was very insightful for myself as a caregiver.
Sometimes my dad resists food. Even when he eats he eats litte, and he is overwhelmed by a big plate of food as the chef says. He grazes so we have things available for him to pick up.
He will not eat at the table alone in front of a plate of food.
I may try the alcohol trick for the taste buds, though he's not on a ton of meds. Maybe there are other reasons.
I am very pleased that someone caring for a sick person at home found this useful. The research was done back in 2006, my book initially published in 2007 and re-published in 2017. Over that time, I have written an article on the same material for a journal directed to people working in institutional catering and another directed to people in your situation. In the interests of brevity, I did not put everything in this post, but another suggestion from Andrew is that sick people hate the smell of cooking, so you try to do the cooking as far away as possible. He had a partner who died from AIDS and he said he sometimes cooked at a neighbour's house to avoid the smell problem. I'm sure it must be very frustrating for you to cook what you hope will be something lovely only for it to be rejected. Good luck to you.
I was just discussing a completely different problem with my husband and we agreed that the words "It is not your fault" can be very soothing to hear. I hope you are passing all this on to your mother or that she is reading this. I'm sure your mother is doing PLENTY right, but needs to look after herself as well.
I have a friend in the same situation and she is a very good cook who goes to a lot of trouble to make good food and then her partner pours tomato sauce over everything!
Amazing story, thank you for sharing. Timing couldn't be more perfect as I contemplate my second chapter. Andrew is my inspiration on how I can pay my blessings forward.
I loved this, Ann. What a beautiful story of sharing and compassion. It’s a reminder to reframe our focus from our own ideas about what end of life care “should” look like towards serving the one who is dying. And how, in doing so, we serve the living as well.
Yes, I agree. I felt very privileged to learn a lot from all the people interviewed for this book. The 'funny' thing about the chef was that it was so unexpected, but he was utterly devoted to the work. He had had a partner who died from AIDS so had done a lot of thinking about people's needs at t hat time.
I like expanding minds! I will sleep well tonight. As I said to someone else, I am thinking of publishing some other interviews (or bits from them) from research I undertook over the course of my life. There are some very interesting stories I have had the privilege to hear. And people tell their own experiences so much better than any paraphrasing i could do.
Ann, you've expanded my mind with this touching and enlightening post. By assuming that hospice patients don't care about food, we diminish their humanity and close the door to connections that the living make while breaking bread together.
So, so true. There have been a few deaths in my life in the past month and this actually perfectly describes the extremes I saw. One ate and had those conversations, another just slept. It’s always heartbreaking but you’re left with a different sense. Sadness, grief but relief. Even animal deaths in this past month have followed the same paths! Way too much sadness recently. But I’m lucky enough to be a helper rather than directly related. Sending hugs to all.
Thank you. I spent my working life as a social researcher (this project, however, was after I had retired, undertaken as my own idea) and I ended up talking to people in all sorts of difficult situations. I always considered it an enormous privilege to hear their experiences and views. I am thinking of sharing some more of these in future posts.
Thank you, Ann. Very interesting description of life at the end. The chef sounds very caring. I visited a dear friend quite a lot at her senior living place and we enjoyed some special occasion meals in a very posh dining area. I wasn’t privy to her final days though. I hope she was cared for as well as the people in hospice you write about.
I listen to BBC Radio 4 to wake up in the morning and I hear it whether I want to or not. Thought for the Fortnight was kind-of a joke, as Thought for the Day is famous and prestigious and I am none of those things. I think it has been going for donkey's years (another English expression).
We listened to the radio as children in England (we left for good in 1958). But I’m not sure I ever heard of that. Of course back then there was only one BBC. I seem to recall “Top of the Form” being a favorite. I’ll have to check with older sister. She’s in California and I’m in Connecticut so we have nice long telephone conversations occasionally. I’ll make a note to discuss!
As happened to my father, and I am sure many others at the end of their days, he was unable to swallow safely and had a gastro tube. Oh how he hated this! Especially when he was put in groups with those who could eat by mouth. I thought I was going to be called to the home for an unruly patient who smashed a banana in someone's face :( When he entered hospice, I remember we tried to give him something that would bring him a little joy - a teaspoon of his beloved ice cream. It was too late for him to enjoy. We don't realize how much dignity there is around being able to consume a meal. I see it in my 13 mos old granddaughter insisting on using the spoon herself. Why not allow patients control and dignity in their final meals?
This is a wonderfully insightful and empathic look at something I am ashamed to say I never thought of before. Thank you for opening my eyes and heart.
Thanks so much, Joyce. If you are very taken by the subject, there is a whole book full of hospice staff talking about their work and what draws them to it. getbook.at/Hospice I am so full of admiration for them, I love giving them an airing. I may offer excerpts from some more interviews in the future from that book and others I have written (Daisy is from a book I wrote about AIDS – about the death of a toddler told lovingly by her mother – and if you can read it without misting up, you're a better man than I am!)
Thanks for recommending the book. I am going to click the link now.
My dad became very picky during hospice. It would frustrate me because he wasn’t like that before. But I would slowly learn he had trouble tasting subtleties of food, because he ruined his taste buds from a thirty year stretch of smoking. I shopped for him during the pandemic lockdown and originally bought most on his shopping list. That was until, a healthcare worker told me he was getting way too much sodium. So I cut that in half. He hated that. Later, I learned about his ruined taste buds. A good hospice chef, who may understand these issues is as good as gold. It’s all about improving their quality of life as Andrew says.
My friend is a doctor from Thailand and she worked with cancer patients. She said the way we handle food for people who are at the very end of their lives is different in the West. She told me when patients stop wanting to eat, it puts the body in a state where they feel far less pain allowing them to die with greater ease. She found our practice of continuing to nourish those who are on the cusp of death well-meaning but ultimately it leaves the patient in more pain.
Interesting. I am not a medical doctor, so I can't say whether I think your friend is right or wrong. But patients in hospice care tend to get very good pain control. I do think it is good for people to have those last conversations, if they can.
This was very insightful for myself as a caregiver.
Sometimes my dad resists food. Even when he eats he eats litte, and he is overwhelmed by a big plate of food as the chef says. He grazes so we have things available for him to pick up.
He will not eat at the table alone in front of a plate of food.
I may try the alcohol trick for the taste buds, though he's not on a ton of meds. Maybe there are other reasons.
Thanks for sharing this piece:-)
I am very pleased that someone caring for a sick person at home found this useful. The research was done back in 2006, my book initially published in 2007 and re-published in 2017. Over that time, I have written an article on the same material for a journal directed to people working in institutional catering and another directed to people in your situation. In the interests of brevity, I did not put everything in this post, but another suggestion from Andrew is that sick people hate the smell of cooking, so you try to do the cooking as far away as possible. He had a partner who died from AIDS and he said he sometimes cooked at a neighbour's house to avoid the smell problem. I'm sure it must be very frustrating for you to cook what you hope will be something lovely only for it to be rejected. Good luck to you.
Oh wow! My mom does the cooking and it’s extremely frustrating to her when anyone doesn’t eat her food, but especially so when it’s my dad.
She feels like she can’t do anything right.
I was just discussing a completely different problem with my husband and we agreed that the words "It is not your fault" can be very soothing to hear. I hope you are passing all this on to your mother or that she is reading this. I'm sure your mother is doing PLENTY right, but needs to look after herself as well.
I have a friend in the same situation and she is a very good cook who goes to a lot of trouble to make good food and then her partner pours tomato sauce over everything!
Amazing story, thank you for sharing. Timing couldn't be more perfect as I contemplate my second chapter. Andrew is my inspiration on how I can pay my blessings forward.
I'm not sure what a 'second chapter' is - retirement? Yes, indeed, do what you can to make the world a better place. Good luck.
I loved this, Ann. What a beautiful story of sharing and compassion. It’s a reminder to reframe our focus from our own ideas about what end of life care “should” look like towards serving the one who is dying. And how, in doing so, we serve the living as well.
Yes, I agree. I felt very privileged to learn a lot from all the people interviewed for this book. The 'funny' thing about the chef was that it was so unexpected, but he was utterly devoted to the work. He had had a partner who died from AIDS so had done a lot of thinking about people's needs at t hat time.
This is such a great post Ann..... I just love his passion and thoughtfulness about his role. Food as love ❤
I just googled and found this: https://en.wikipedia.org/wiki/Thought_for_the_Day. My Thought for the Fortnight is a youngster!
I like expanding minds! I will sleep well tonight. As I said to someone else, I am thinking of publishing some other interviews (or bits from them) from research I undertook over the course of my life. There are some very interesting stories I have had the privilege to hear. And people tell their own experiences so much better than any paraphrasing i could do.
Ann, you've expanded my mind with this touching and enlightening post. By assuming that hospice patients don't care about food, we diminish their humanity and close the door to connections that the living make while breaking bread together.
So, so true. There have been a few deaths in my life in the past month and this actually perfectly describes the extremes I saw. One ate and had those conversations, another just slept. It’s always heartbreaking but you’re left with a different sense. Sadness, grief but relief. Even animal deaths in this past month have followed the same paths! Way too much sadness recently. But I’m lucky enough to be a helper rather than directly related. Sending hugs to all.
Well, I send hugs to you!
Thank you. I spent my working life as a social researcher (this project, however, was after I had retired, undertaken as my own idea) and I ended up talking to people in all sorts of difficult situations. I always considered it an enormous privilege to hear their experiences and views. I am thinking of sharing some more of these in future posts.
What a meaningful thing to do! Thanks for sharing this.
Thank you, Ann. Very interesting description of life at the end. The chef sounds very caring. I visited a dear friend quite a lot at her senior living place and we enjoyed some special occasion meals in a very posh dining area. I wasn’t privy to her final days though. I hope she was cared for as well as the people in hospice you write about.
Thanks. I would wish an Andrew on everyone! Thank goodness, I caved in and did the interview!
And Ann I’m thrilled to see you use “fortnight” because the word doesn’t seem to have crossed the pond. I look forward to your next posting.
It will be in exactly two weeks! Did you ever listen to Thought for the Day?
I don’t think so. Is it something you did?
I listen to BBC Radio 4 to wake up in the morning and I hear it whether I want to or not. Thought for the Fortnight was kind-of a joke, as Thought for the Day is famous and prestigious and I am none of those things. I think it has been going for donkey's years (another English expression).
We listened to the radio as children in England (we left for good in 1958). But I’m not sure I ever heard of that. Of course back then there was only one BBC. I seem to recall “Top of the Form” being a favorite. I’ll have to check with older sister. She’s in California and I’m in Connecticut so we have nice long telephone conversations occasionally. I’ll make a note to discuss!
As happened to my father, and I am sure many others at the end of their days, he was unable to swallow safely and had a gastro tube. Oh how he hated this! Especially when he was put in groups with those who could eat by mouth. I thought I was going to be called to the home for an unruly patient who smashed a banana in someone's face :( When he entered hospice, I remember we tried to give him something that would bring him a little joy - a teaspoon of his beloved ice cream. It was too late for him to enjoy. We don't realize how much dignity there is around being able to consume a meal. I see it in my 13 mos old granddaughter insisting on using the spoon herself. Why not allow patients control and dignity in their final meals?