K, I’m so sorry to hear that you went through this kind of pain. The true blessing I’ve received since writing this post is the number of people who’ve reached out to me with their personal stories. We have a caring community here, and a place to connect. It’s healing. Please feel free to reach out.🙏❤️
Mary, it is so kind of you to inspire this kind of connection and community. I used to think if I write about pain, it would overwhelm me. But I now see how it builds strength and allows you to connect, and promotes healing,
Olya, this is a wonderful opportunity to share my story. It’s been a tremendous blessing and honor that people have come here to tell of their own journey. That sense of connection means everything to me. ❤️
I suppose that at some point in many of our lives we become fascinated with death, Last year I lost a lot of people in my life but most weren't immediate, that is someone I'd see daily or sometimes even weekly but the losses had me reflecting on how I'd face that sort of reality.
In the middle of that I read a biography on Ulysses S Grant. And they detail that he faced his death calmly. But part how he could do that was that he had a mission to write his autobiography. You see he had lost a lot of money to a scammer and he was trying to fund his family after he was gone and his story was almost sure to sell.
Forgive the anachronism but he didn't phone the book in. He worked very hard to write his story and do it right.
The part in your story about how your husband didn't want to make you empty the commode reminded me of that type of dignity. We care for each other in the ways that we can, and sometimes it's just trying to spare our loved ones more pain.
Thank you, Mike. I was so profoundly touched by the way he cared for me up to the very end. He knew I would do anything for him, but wanted to spare me this task.
I am sorry to hear that you’ve lost people who mattered to you. Even if they weren’t “immediate” it is still a loss. And thank you for sharing the story of Ulysses S. Grant. It is interesting that people do want to live to finish their work.
One of the saddest stories I have ever read. I took care of my husband at home for a long time and those same experiences were close to mine. The difference was while my husband was a DNR, and on Hospice, the night aid decided to call 911 and never called me. I woke up to a telephone call from the police and the ambulance attendants who were already in my home ready to bring my husband back from dying. He was 91 years old and I was an old social worker who thought I had everything under control. I did not. This is the first time I have written about it.
Beautiful text! I recognise many details in your story. My husband died of bladder cancer two years and three months ago. We had 42 years together. He finally adopted the hospital bed, but he always looked longingly over at the "real bed". One night he too fell while trying to go to the bathroom ripping off the catheter in the process. The nurse's aid finally came. I was hoping she could help me carry him back to the bed but she said she wasn't supposed to touch him, and instead called the French equivalent of 911 (which I could have done myself but I didn't want to). And they had orders to take him to the emergency ward, where he would lie on a stretcher for hours before anyone could get to him.
It was so hard to share some of these intimate details. But it meant so much that he didn’t want anything to do with the hospital bed or the commode. Thank you for sharing your experience.❤️
Yes, but they are at once intimate and shared by so many I think. I like that your husband was thinking of you. With many people it is a question of pride, and in some cases, denial. Personally I was glad my husband finally adopted the hospital bed; it was much easier for me to take care of him.
It’s true. There are some things that we can’t do, and your experience was so profoundly difficult. We are placed in heart-rending positions. Lying on a stretcher for hours. Awful. I don’t get this indifference to the dying, and their families. It’s simply cruel.
This was such a moving essay, Mary, and I can see from the other comments how it affected readers in very different ways- the sign of excellent writing - and your own capacity for empathy, I think. Very glad you were open about your rage, sleep deprivation and commodes too. Just a few people can be so helpful, and their kindness makes all the difference, but many others are not. (That social worker!)
Liz, thank you so much. I’m glad this resonated with you. My husband and I were married for 43 years. We loved and respected each other. I think that many people in a similar relationship have the same kind of bond, that isn’t evident to outsiders. I’m so glad it came through in this essay.❤️
Mary I don't have a frame of reference to compare to because I have never been in a similar situation. However, I wanted to say thank you for sharing your heart and your vulnerability with us. You are a beautiful writer and more importantly, a beautiful person. Thank you.
Matthew, I’m humbled by your kindness. I’m glad this piece spoke to you. I was fortunate to be married to someone who inspired me to write passionately about the importance of human connection. I hope to continue this journey.
Jill, thank you so much. It’s true that even though it’s been a year, the grief is still with me. It took a a long time to write this piece, and about twenty revisions until it came together. I’m glad it spoke to you.
Jahrzeit. One year. What Joan Didion called the year of magical thinking. It's been thirteen years for me and you don't get over it or through it; you learn to live with it. I'm sorry for your loss.
Certain days it still feels immediate. Your piece reminded me a lot of Elaine Mansfield's memoir, Leaning Into Love, and also Paul Bennett book, Loving Grief. Love and loss is a package deal. Memories are forever.
Cherie, thank you. A hard piece to write. But I feel it’s important to honor his memory, and I think he’d be pleased to know that I want to keep his memory alive, and share his kindness and warmth.
Oh Mary, I’m not trying to start a support group or anything, but I went through such a similar process with my wife the past couple of years. Stage IV lung cancer and radiation along with chemo did wonders. But the immunology caused many more problems (shingles, pneumonia twice) than were worth it. During the last two and a half weeks a tumor in her esophagus grew and eventually spread to her wind pipe. Just seeing the word Atavan brought so much back, and that was just last October. I wish I had known about Holidol (sp?). Her hallucinations involved her believing she was being held against her will at 3 am in the hospital. She would text former coworkers to try to get them to bail her out. Even as I write this I’m still in some disbelief of having gone through it all. Thank goodness for a local hospice facility in which she spent her final 48 hours with me sleeping in the chair next to her. We were married twenty four years and she died at 57 years old. Side note ~ Halloween was our favorite holiday and she died on that day, though I’m 99% sure she was completely unaware of that. TYSM for sharing with all of us tonight!
Thank you, B W. I’m so sorry for your loss. How hard it must have been to see the psychological impact of your wife’s illness. I didn’t see paranoia with my guy, and I think a lot of his loopy behavior was caused by the morphine. When he got to the hospice, they prescribed Dilaudid, a far better option. Thank you so much for sharing your story.
Both of my elderly parents ended up in a so-called rehab at the same time. I got a call late one night asking me to please speak to my mother. She insisted that she and my father had been arrested and were in jail. Crazy times. They both ended up in hospice in my home, not at the same time. Most people have no idea what being a caregiver is like until they become one. I can’t even begin to imagine what it is like when the patient is your spouse
Catherine, I believe it’s difficult for everyone, and also that every situation is different. I don’t believe that minimizing one’s own suffering is necessary in order to understand another’s. And yet, we all do it! (Boy do I sound preachy. See what I mean?) To be awakened by such a phone call is terrible. What I went through was terrible as well. We are all partners in grief. Thank you for your kindness, and for sharing your story. Hugs to you.❤️🙏
Your story resonated with me in so many ways. My father started falling, a lot. I did not know this at first as their neighbors usually came to the rescue. Somehow I finally became aware of what was going on. I talked them into assisted living. This removed some of the stress from my mother, but it was still challenging. AS hard as those few years were, I would do them over in an instant, without question. And btw, the cat!!! My mother hated cats. She was afraid of them. I have two. She had to live with them when she came to live with me. One was more afraid of her than she of it, so no problem there. The other treated her like a beloved watch dog. He laid by her feet all day long, keeping her company. She came to like lime and even started petting him. Both respected her boundaries. Although I kept her bedroom open, they never went in there or tried to jump up on her bed. It was as though they knew not to.
Catharine, what a beautiful story. It’s so true, we would do it again, no question. It’s so fortunate that you and your parents got to spend good times, and not-so-good times, together. It’s a gift. Your neighbors helped your father when he fell. That’s wonderful, but the unfortunate side of their kindness was that it delayed your knowledge of his condition. But when you did find out, you were able to act. You were a blessing to both of your parents. I love the story about your cats! They are so attuned. My Mini is 21 years old, and we are each others’ caregivers. She’s 104 in human years, and I will miss her desperately, but right now we have each other. And we will always have my husband, just as you will always have your mom and dad.
I do believe minimizing one owns suffering is crucial to attending to others. How can you possibly help someone else? If all you see is yourself in the situation? I block myself.
Oh Mary. Another gem. So vividly written, and touched by your signature wry sense of irony. (Sounds like your husband had a similar wit.) The part about the six paramedics hit me right in the gut. You've read my story, so you know how parallel it is to yours. What is it about the cluelessness, not to mention the coldness, of the normie bureaucrats who are supposed to be helping? It can't just be compassion fatigue, especially in the case of the young social worker. I have to conclude that our American culture is just warped and infantile when it comes to mortality.
Mary, thank you. I’m so honored by your comments. I wrote this with your story in mind, and the parallels floored me as well. A year ago, when this was happening, I had too much going on to even begin to look at what may be considered a pattern within our culture of neglect and disrespect for those who require care at home. I’m glad I kept a journal, because I was so sleep-deprived I would not have remembered a thing. It hurts to go back and see some of the angry things I wrote. And so much of that anger was directed toward myself. I see now how much of that was based on helplessness, because I had no training whatsoever. Anyway: solidarity forever. We’re in this together.
Thank you so much for your kind words, Patricia. I’m glad this touched you.
K, I’m so sorry to hear that you went through this kind of pain. The true blessing I’ve received since writing this post is the number of people who’ve reached out to me with their personal stories. We have a caring community here, and a place to connect. It’s healing. Please feel free to reach out.🙏❤️
This is something I’m grateful for. A place to connect. Thank you, K.
Mary, it is so kind of you to inspire this kind of connection and community. I used to think if I write about pain, it would overwhelm me. But I now see how it builds strength and allows you to connect, and promotes healing,
Olya, this is a wonderful opportunity to share my story. It’s been a tremendous blessing and honor that people have come here to tell of their own journey. That sense of connection means everything to me. ❤️
Oh, Mary. You were the most loving, caring wife. xo
❤️💕🙏
I suppose that at some point in many of our lives we become fascinated with death, Last year I lost a lot of people in my life but most weren't immediate, that is someone I'd see daily or sometimes even weekly but the losses had me reflecting on how I'd face that sort of reality.
In the middle of that I read a biography on Ulysses S Grant. And they detail that he faced his death calmly. But part how he could do that was that he had a mission to write his autobiography. You see he had lost a lot of money to a scammer and he was trying to fund his family after he was gone and his story was almost sure to sell.
Forgive the anachronism but he didn't phone the book in. He worked very hard to write his story and do it right.
The part in your story about how your husband didn't want to make you empty the commode reminded me of that type of dignity. We care for each other in the ways that we can, and sometimes it's just trying to spare our loved ones more pain.
Thanks for sharing.
Thank you, Mike. I was so profoundly touched by the way he cared for me up to the very end. He knew I would do anything for him, but wanted to spare me this task.
I am sorry to hear that you’ve lost people who mattered to you. Even if they weren’t “immediate” it is still a loss. And thank you for sharing the story of Ulysses S. Grant. It is interesting that people do want to live to finish their work.
One of the saddest stories I have ever read. I took care of my husband at home for a long time and those same experiences were close to mine. The difference was while my husband was a DNR, and on Hospice, the night aid decided to call 911 and never called me. I woke up to a telephone call from the police and the ambulance attendants who were already in my home ready to bring my husband back from dying. He was 91 years old and I was an old social worker who thought I had everything under control. I did not. This is the first time I have written about it.
Oh, Gloria. I cannot imagine the pain. My heart aches for you. Thank you for sharing this story. Please feel free to DM me.💔🙏
Thank you for sharing this story, Mary.
Thank you, Pat, for reading.❤️
Mary, what a tender, gut-wrenching story. There aren't many who understand what it's like to be a caregiver to a dying loved one. Thank you.
Thank you, Tiffany.❤️
Beautiful text! I recognise many details in your story. My husband died of bladder cancer two years and three months ago. We had 42 years together. He finally adopted the hospital bed, but he always looked longingly over at the "real bed". One night he too fell while trying to go to the bathroom ripping off the catheter in the process. The nurse's aid finally came. I was hoping she could help me carry him back to the bed but she said she wasn't supposed to touch him, and instead called the French equivalent of 911 (which I could have done myself but I didn't want to). And they had orders to take him to the emergency ward, where he would lie on a stretcher for hours before anyone could get to him.
It was so hard to share some of these intimate details. But it meant so much that he didn’t want anything to do with the hospital bed or the commode. Thank you for sharing your experience.❤️
Yes, but they are at once intimate and shared by so many I think. I like that your husband was thinking of you. With many people it is a question of pride, and in some cases, denial. Personally I was glad my husband finally adopted the hospital bed; it was much easier for me to take care of him.
It’s true. There are some things that we can’t do, and your experience was so profoundly difficult. We are placed in heart-rending positions. Lying on a stretcher for hours. Awful. I don’t get this indifference to the dying, and their families. It’s simply cruel.
Oh Mary. How I wish we had been right next door during this time. I hope writing this has helped to process the trauma.
Oh, Jeannie. That would have been wonderful. But you came when we needed you, and we love you.❤️
This was such a moving essay, Mary, and I can see from the other comments how it affected readers in very different ways- the sign of excellent writing - and your own capacity for empathy, I think. Very glad you were open about your rage, sleep deprivation and commodes too. Just a few people can be so helpful, and their kindness makes all the difference, but many others are not. (That social worker!)
This was heart-wrenching to read. My heart goes out to you. It's clear how much you and your husband loved each mother.
Liz, thank you so much. I’m glad this resonated with you. My husband and I were married for 43 years. We loved and respected each other. I think that many people in a similar relationship have the same kind of bond, that isn’t evident to outsiders. I’m so glad it came through in this essay.❤️
You're welcome, Mary. That love came through very clearly in the essay.
Mary I don't have a frame of reference to compare to because I have never been in a similar situation. However, I wanted to say thank you for sharing your heart and your vulnerability with us. You are a beautiful writer and more importantly, a beautiful person. Thank you.
Matthew, I’m humbled by your kindness. I’m glad this piece spoke to you. I was fortunate to be married to someone who inspired me to write passionately about the importance of human connection. I hope to continue this journey.
So well written...I couldn't stop once I started and the tears welled up. The grief is raw and real.
Jill, thank you so much. It’s true that even though it’s been a year, the grief is still with me. It took a a long time to write this piece, and about twenty revisions until it came together. I’m glad it spoke to you.
Jahrzeit. One year. What Joan Didion called the year of magical thinking. It's been thirteen years for me and you don't get over it or through it; you learn to live with it. I'm sorry for your loss.
Thirteen years. So sorry for your loss, as well.❤️
Certain days it still feels immediate. Your piece reminded me a lot of Elaine Mansfield's memoir, Leaning Into Love, and also Paul Bennett book, Loving Grief. Love and loss is a package deal. Memories are forever.
"Love and loss is a package deal." Beautiful, Jill.
Mary, thank you for your raw honesty. I won't forget this story. I hope it helps you to write about it. I know it helps me to hear it.
Cherie, thank you. A hard piece to write. But I feel it’s important to honor his memory, and I think he’d be pleased to know that I want to keep his memory alive, and share his kindness and warmth.
Oh Mary, I’m not trying to start a support group or anything, but I went through such a similar process with my wife the past couple of years. Stage IV lung cancer and radiation along with chemo did wonders. But the immunology caused many more problems (shingles, pneumonia twice) than were worth it. During the last two and a half weeks a tumor in her esophagus grew and eventually spread to her wind pipe. Just seeing the word Atavan brought so much back, and that was just last October. I wish I had known about Holidol (sp?). Her hallucinations involved her believing she was being held against her will at 3 am in the hospital. She would text former coworkers to try to get them to bail her out. Even as I write this I’m still in some disbelief of having gone through it all. Thank goodness for a local hospice facility in which she spent her final 48 hours with me sleeping in the chair next to her. We were married twenty four years and she died at 57 years old. Side note ~ Halloween was our favorite holiday and she died on that day, though I’m 99% sure she was completely unaware of that. TYSM for sharing with all of us tonight!
Thank you, B W. I’m so sorry for your loss. How hard it must have been to see the psychological impact of your wife’s illness. I didn’t see paranoia with my guy, and I think a lot of his loopy behavior was caused by the morphine. When he got to the hospice, they prescribed Dilaudid, a far better option. Thank you so much for sharing your story.
Both of my elderly parents ended up in a so-called rehab at the same time. I got a call late one night asking me to please speak to my mother. She insisted that she and my father had been arrested and were in jail. Crazy times. They both ended up in hospice in my home, not at the same time. Most people have no idea what being a caregiver is like until they become one. I can’t even begin to imagine what it is like when the patient is your spouse
Catherine, I believe it’s difficult for everyone, and also that every situation is different. I don’t believe that minimizing one’s own suffering is necessary in order to understand another’s. And yet, we all do it! (Boy do I sound preachy. See what I mean?) To be awakened by such a phone call is terrible. What I went through was terrible as well. We are all partners in grief. Thank you for your kindness, and for sharing your story. Hugs to you.❤️🙏
Your story resonated with me in so many ways. My father started falling, a lot. I did not know this at first as their neighbors usually came to the rescue. Somehow I finally became aware of what was going on. I talked them into assisted living. This removed some of the stress from my mother, but it was still challenging. AS hard as those few years were, I would do them over in an instant, without question. And btw, the cat!!! My mother hated cats. She was afraid of them. I have two. She had to live with them when she came to live with me. One was more afraid of her than she of it, so no problem there. The other treated her like a beloved watch dog. He laid by her feet all day long, keeping her company. She came to like lime and even started petting him. Both respected her boundaries. Although I kept her bedroom open, they never went in there or tried to jump up on her bed. It was as though they knew not to.
Catharine, what a beautiful story. It’s so true, we would do it again, no question. It’s so fortunate that you and your parents got to spend good times, and not-so-good times, together. It’s a gift. Your neighbors helped your father when he fell. That’s wonderful, but the unfortunate side of their kindness was that it delayed your knowledge of his condition. But when you did find out, you were able to act. You were a blessing to both of your parents. I love the story about your cats! They are so attuned. My Mini is 21 years old, and we are each others’ caregivers. She’s 104 in human years, and I will miss her desperately, but right now we have each other. And we will always have my husband, just as you will always have your mom and dad.
I do believe minimizing one owns suffering is crucial to attending to others. How can you possibly help someone else? If all you see is yourself in the situation? I block myself.
Such beautiful writing! Weren’t you both so lucky to have each other.
Thank you, MJ. I feel very fortunate, and blessed.❤️
Oh Mary. Another gem. So vividly written, and touched by your signature wry sense of irony. (Sounds like your husband had a similar wit.) The part about the six paramedics hit me right in the gut. You've read my story, so you know how parallel it is to yours. What is it about the cluelessness, not to mention the coldness, of the normie bureaucrats who are supposed to be helping? It can't just be compassion fatigue, especially in the case of the young social worker. I have to conclude that our American culture is just warped and infantile when it comes to mortality.
Mary, thank you. I’m so honored by your comments. I wrote this with your story in mind, and the parallels floored me as well. A year ago, when this was happening, I had too much going on to even begin to look at what may be considered a pattern within our culture of neglect and disrespect for those who require care at home. I’m glad I kept a journal, because I was so sleep-deprived I would not have remembered a thing. It hurts to go back and see some of the angry things I wrote. And so much of that anger was directed toward myself. I see now how much of that was based on helplessness, because I had no training whatsoever. Anyway: solidarity forever. We’re in this together.