I especially enjoyed this. Nine years ago upon returning from a trip I was told my Dad had lung cancer and had two weeks to live. I didn’t think twice…just told my three younger brothers that I would move in and take care of Dad. So I did but as two weeks turned into two months and my life was on hold with my husband making the 40 minute drive to bring us groceries, etc. I was questioning my decision. Was it a feeling of obligation being the oldest or a sense of gratitude as I was always close to my Dad?
Since my mother’s death ten years previous, I had driven from work every Thursday and taken my Dad out for dinner. Dad called it our date night and he really looked forward to it. Dad and I did a lot of talking about ancestry, frustrations, etc and I got to know a part of my Dad I had never seen before.
But this time together was different. In what ended up being three months, I slowly watched my Dad deteriorate, physically saw a lump develop on his neck which traveled to his brain so many times Dad could not communicate what he wanted. He would be so frustrated when he couldn’t come up with the words he wanted. The man who had been my rock was slowly deteriorating in front of me and it was heartbreaking and tore at the strings of my soul. But would I do it again? In a heartbeat!
Thank you for sharing this, Victoria. I'm not sure gratitude and obligation are mutually exclusive. Maybe it was both. Maybe it was a host of other feelings and factors including the bonds strengthened over those weekly dinners, when you got to know your father as a person and not just your Dad, that made you want to move into his house and help him through his last days. I'm discovering that love, empathy, struggle, selfishness, fear, joy all can coexist in situations like these. In fact, caregiving reveals all these facets and more like few other experiences can. I'm not surprised you would do it again. Perhaps spending this time with him was his final gift to you, hard as it was.
loved this essay, Elizabeth...First of all, hope your hubby recovers quickly... So much food for thought about one's "purpose" and those "moments of grace that came out of nowhere.". When my mother's health was deteriorating towards the end of her 99 years on this earth, many of my siblings and I set up a schedule to visit her, to be a part of her care, as my older brother was her at-home primary caregiver and my mom's needs had intensified. We set up a schedule and each of us took a weekend, or week, or longer, every month, for the last two years of her life. I was surprised that I was able to handle her most frail, scary and messy moments, and learned so much, as we went along, to be honest. On one of my last visits with her, when I arrived at her apartment, she looked confused. I asked her if she knew who I was. "I'm not sure," she said. I responded, "It's okay, Mom," and just let a long pause sit in the space between us and she gently said, "Bernadette?"....After she died, I missed that feeling of purpose but also the deep connection I felt with her, while she seemed to be at peace with me and my siblings taking care of her. The "tiny beautiful things" (to quote Cheryl Strayed) were everything: her need and enjoyment of a piece of buttered toast and "soup soup soup", coffee in bed, arranging a bouquet of flowers (and her directing me which stem needs further cutting, or where to place a vase), our laughter when I would do short interviews with her on my phone by video...and on and on. My mother was a proud and private French woman and always stated she didn't wanted to be a burden to her children and said she didn't want any of us to take care of her. She seemed to have changed her mind, though. You're right, there is an intimacy in a loved one allowing others to care for them. And the other way around as well.
My mother has always said the same thing: she doesn't want to be a burden and she doesn't want us to take care of her. I draw hope from your mother's change of mind. The way you all did it together is beautiful and inspiring. I guess we can't have the joy, intimacy, and moments of surprise and grace without the heavier feelings and tasks that make the burden a little heavier. Still, from what I'm reading here in the comments and have experienced myself, these "burdens" are gifts in many ways.
What a thoughtful and considered piece today, Betsy. Maybe consider writing a series of essays on this topic, addressing all the issues you raise? Or maybe this is a long essay when it's finished, one that could be published in a number of places. What you posted today, finished or not, raised so many questions for me to consider. I have lots of thoughts, but not organized ones. A heavy and relevant topic! It raises so many opportunities for personal growth if we are open.
I think there are jumping-off points for several essays in this along with a few that are still rattling around in my brain without making it to the page. Sometimes I need to put it down in some fashion in order to see where I want to go next. Maybe the act of penning my thoughts will help to organize them.
I have done caregiving of my frail elderly in laws the last year of their lives and my brother in law for the last 5 years of his and it was very difficult. i did not realize how much time and effort and putting myself “on hold” I was doing until they were gone.
I am doing the same thing for an elderly friend who has no relatives. at times it is a joy and times it is a burden. I find I need to be appreciated and thanked for doing what I do. The burden part disappears emotionally when I know that I’m appreciated not just an annoyance to those that need my support, i’m not sure why I need the gratitude…I would be grateful (I hope) if the shoe was on the other foot but also probably pissed as h__l that I needed the help.
Trish, you've hit on one of the most challenging aspects of caring for another and being cared for. Maybe it isn't that you need gratitude so much as you want your efforts to be seen and acknowledged and that strikes me as a pretty human desire. You are wise, though, when you wonder how you would respond if the shoe was on the other foot. A person's fear and anger can trump expressions of gratitude.
You've given a lot of yourself. You've said you realized that you've put your life on hold more than you expected. That seems important to pay attention to. Maybe it is easier to need gratitude/acknowledgement less if you have more time and energy for yourself. Is that possible in this new situation?
I have experienced several arenas of caregiving for my parents, my husband which is ongoing due to heart, and his help when I needed it for myself.
I admired your thoughts and honesty. Those of us who have these unexpected turns share so much in common, but each is our own story, a form of endurance, and its teaching. Thank you for this piece.
There is indeed a common thread running throughout the experiences of all folks who give and receive help yet there is so much truth in the idea that each experience is its own story. Thank you for pointing that out. And thank you for reading and adding your thoughts!
Oh wow, I was right there with you and would love to read this again once you’ve gotten the words and cadence to tell it.
I guess caretaking is in the blood. My maternal side are women who love by cooking your favorites, keeping house, listening or sitting silently with you as you lean against them, and with one of my elders, wipe your feet before you got into bed. And that is how I love— through work. My love is reorganizing my husband’s clothes to fit in the drawers, painting my children’s room with abstract and geometrical designs to reflect their personalities, it’s making one sunny side up egg for my daughter on a Saturday, it’s reading to my son when he can’t sleep…
More and more, though, I want to be taken care of. The seeds of a new poem or even whole newsletter started germinating a few days ago with this idea. Hope I can give the story weight when it’s ready to be written.
"And that is how I love-- through work." I get that. I pick up so much joy when you describe the things you do for your family members. I think that is one of the things I'm finding is true about myself. I love the physical work, the caretaking that is tangible and tailored to a person's needs. I struggle though when I get it wrong or somehow the intended recipient of this love reads it differently than intended. I, of course, am guilty of that sort of misreading too.
I'm interested in your desire to write about this evolving wish to be taken care of. It suggests that you are able to receive which, it seems to me, requires a giving up of ego and control, not always an easy thing to do but can lead to so much good stuff.
Thanks for the mention and for the vulnerable piece, Betsy. Caregiving is a complex topic and it hits everyone a bit differently depending on a whole host of reasons. I didn't choose to be a caregiver for Em, but I choose to make the most of it and let it help me grow as a human being in ways I never could have otherwise
Thanks, Charlotte. Those things hurt. And thanks for the edit suggestion ( I welcome those!) but when I checked it, the whole sentence was there and it looked okay. Maybe it got cut off on your phone. I'll look into how the story appears when it goes out. Maybe something is happening with the formatting.
Thank you for writing this. I am a caregiver for my adult autistic son. I’m still figuring out what this role means for me and for my relationships with him & my husband (and I’ve been in this space 24 years!). I certainly can feel the relief in that sense of clarity you mention - I’m in caregiver mode, this is what I need to do, everything else can fall away. But you can lose yourself in the process, too. And I’ve realized a new challenging dynamic over the past few years when my husband or I needed care, due to injuries, surgeries, illnesses, and of course our son’s needs don’t stop. That’s when I feel myself getting Ratched-y - it is heavy to care for 2 people or to continue caregiving when you need it, too. This is something I need to get better prepared for, because at some point all of us will need care. I appreciate you exploring your experience on both sides of the carer/cared-for relationship, it’s given me more (writhing snakes?) to think about!
This is a space shared by others who read this newsletter and others I know. It is a heavy weight when you are caring for two or to continue caregiving when you need it too. I don't know how someone prepares for this or strategizes to get through it but I would like to know how you find your way as you move forward. I wish you strength and health and space to breathe.
Thanks for sharing, Betsy, such a thoughtful piece. I know I’m late to the party on this discussion (New to substack and am enjoying discovering some amazing authors).
Caregiving, like anything else that is important, contains multitudes. One aspect that couples are often not prepared for is the promise of a wonderful retirement filled with travel and grandkids shattered by the sudden debility of a partner. With it may come a sense of burden, anger and regret. I see it often in the families of my patients and also personally in what it did to my mother and father in law. I look forward to more from you on this topic.
Thank you, Jay. There are some wonderful writers here and I'm hoping you'll soon be one of them. Your insight into the human condition and the way you use story to express it is very special.
Oh Betsy you are really going through it! I hope your husband has a quick and easy recovery - you're lucky to have each other as these challenges arise. It seems as we age, these caregiving scenarios increase. I'm watching the dynamic change with both parents and am walking the tightrope between providing enough care and allowing for their desired independence. And, always, adult kids are sometimes needy in ways that require a delicate approach. Nothing serious is happening at the moment, but I'm in the sandwich and, as you say, it's not a matter of 'if' but 'when.' Thanks for writing this.
A few years ago I reviewed a book called "Caregiver Defined" by Michael Fortuna. As a boy, the author cared for his brother, who had polio. He wrote this book many years later. It contains short entries intended to help and support the caregiver. These entries are filled with knowing and concern, with love and compassion. Some entries are as simple as don't forget to savor a piece of chocolate. I am not sure whether he still sells this book on Amazon (or elsewhere online) but the contents struck me. Fortuna wanted to care for his brother for as long as necessary, but he also wanted to give something to caregivers because he clearly never forgot the challenges and the rewards. Also: For those who listen to podcasts, Roxanne Coady produces wonderful podcasts about books. Her most recent podcast has to do with caregiving. She interviews Dasha Kiper about her new book, "Travels to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain." Thank you, Betsy, for providing us with this community of readers and writers, and for giving us so much to think about.
“When I am useful to someone else, I feel more sure of my place in this world. Even if I never finish this novel, I tell myself, at least I am essential to someone else, something larger than my own desires.” Feel this and wrestle with it. I love your willingness to throw this onto the page and let it raise some questions. I like how you separated a quote out on Substack. I’m going to play around with that and see if I can figure it out.
Well, what an honor. I am up late -- quite weary in mind and body, and as I read I nodded, felt comforted, made peaceful and grateful for you -- in your complex writing, in the back and forth caregiving -- and then, surprise (!) -- your kind acknowledgment. Thank you.
Obviously this post hit a nerve, no pun intended. Like so many, I have been there. My mom had a stroke in 2011, was diagnosed with vascular dementia in 2015 and died in late 2019. There were so many levels of stress that came from taking care of her but so much joy as well. I have absolutely no regrets.
A note for those whose "patient" is, as my mom was, on SS and without any significant savings or other financial resources (they can own their home). Get them on Medicare and Medicaid (Medi-Cal here in California). And once you have that set up, get them into a PACE program. PACE was a lifesaver and sanity saver for us.
I especially enjoyed this. Nine years ago upon returning from a trip I was told my Dad had lung cancer and had two weeks to live. I didn’t think twice…just told my three younger brothers that I would move in and take care of Dad. So I did but as two weeks turned into two months and my life was on hold with my husband making the 40 minute drive to bring us groceries, etc. I was questioning my decision. Was it a feeling of obligation being the oldest or a sense of gratitude as I was always close to my Dad?
Since my mother’s death ten years previous, I had driven from work every Thursday and taken my Dad out for dinner. Dad called it our date night and he really looked forward to it. Dad and I did a lot of talking about ancestry, frustrations, etc and I got to know a part of my Dad I had never seen before.
But this time together was different. In what ended up being three months, I slowly watched my Dad deteriorate, physically saw a lump develop on his neck which traveled to his brain so many times Dad could not communicate what he wanted. He would be so frustrated when he couldn’t come up with the words he wanted. The man who had been my rock was slowly deteriorating in front of me and it was heartbreaking and tore at the strings of my soul. But would I do it again? In a heartbeat!
Thank you for sharing this, Victoria. I'm not sure gratitude and obligation are mutually exclusive. Maybe it was both. Maybe it was a host of other feelings and factors including the bonds strengthened over those weekly dinners, when you got to know your father as a person and not just your Dad, that made you want to move into his house and help him through his last days. I'm discovering that love, empathy, struggle, selfishness, fear, joy all can coexist in situations like these. In fact, caregiving reveals all these facets and more like few other experiences can. I'm not surprised you would do it again. Perhaps spending this time with him was his final gift to you, hard as it was.
loved this essay, Elizabeth...First of all, hope your hubby recovers quickly... So much food for thought about one's "purpose" and those "moments of grace that came out of nowhere.". When my mother's health was deteriorating towards the end of her 99 years on this earth, many of my siblings and I set up a schedule to visit her, to be a part of her care, as my older brother was her at-home primary caregiver and my mom's needs had intensified. We set up a schedule and each of us took a weekend, or week, or longer, every month, for the last two years of her life. I was surprised that I was able to handle her most frail, scary and messy moments, and learned so much, as we went along, to be honest. On one of my last visits with her, when I arrived at her apartment, she looked confused. I asked her if she knew who I was. "I'm not sure," she said. I responded, "It's okay, Mom," and just let a long pause sit in the space between us and she gently said, "Bernadette?"....After she died, I missed that feeling of purpose but also the deep connection I felt with her, while she seemed to be at peace with me and my siblings taking care of her. The "tiny beautiful things" (to quote Cheryl Strayed) were everything: her need and enjoyment of a piece of buttered toast and "soup soup soup", coffee in bed, arranging a bouquet of flowers (and her directing me which stem needs further cutting, or where to place a vase), our laughter when I would do short interviews with her on my phone by video...and on and on. My mother was a proud and private French woman and always stated she didn't wanted to be a burden to her children and said she didn't want any of us to take care of her. She seemed to have changed her mind, though. You're right, there is an intimacy in a loved one allowing others to care for them. And the other way around as well.
My mother has always said the same thing: she doesn't want to be a burden and she doesn't want us to take care of her. I draw hope from your mother's change of mind. The way you all did it together is beautiful and inspiring. I guess we can't have the joy, intimacy, and moments of surprise and grace without the heavier feelings and tasks that make the burden a little heavier. Still, from what I'm reading here in the comments and have experienced myself, these "burdens" are gifts in many ways.
What a thoughtful and considered piece today, Betsy. Maybe consider writing a series of essays on this topic, addressing all the issues you raise? Or maybe this is a long essay when it's finished, one that could be published in a number of places. What you posted today, finished or not, raised so many questions for me to consider. I have lots of thoughts, but not organized ones. A heavy and relevant topic! It raises so many opportunities for personal growth if we are open.
I think there are jumping-off points for several essays in this along with a few that are still rattling around in my brain without making it to the page. Sometimes I need to put it down in some fashion in order to see where I want to go next. Maybe the act of penning my thoughts will help to organize them.
I have done caregiving of my frail elderly in laws the last year of their lives and my brother in law for the last 5 years of his and it was very difficult. i did not realize how much time and effort and putting myself “on hold” I was doing until they were gone.
I am doing the same thing for an elderly friend who has no relatives. at times it is a joy and times it is a burden. I find I need to be appreciated and thanked for doing what I do. The burden part disappears emotionally when I know that I’m appreciated not just an annoyance to those that need my support, i’m not sure why I need the gratitude…I would be grateful (I hope) if the shoe was on the other foot but also probably pissed as h__l that I needed the help.
Trish, you've hit on one of the most challenging aspects of caring for another and being cared for. Maybe it isn't that you need gratitude so much as you want your efforts to be seen and acknowledged and that strikes me as a pretty human desire. You are wise, though, when you wonder how you would respond if the shoe was on the other foot. A person's fear and anger can trump expressions of gratitude.
You've given a lot of yourself. You've said you realized that you've put your life on hold more than you expected. That seems important to pay attention to. Maybe it is easier to need gratitude/acknowledgement less if you have more time and energy for yourself. Is that possible in this new situation?
I have experienced several arenas of caregiving for my parents, my husband which is ongoing due to heart, and his help when I needed it for myself.
I admired your thoughts and honesty. Those of us who have these unexpected turns share so much in common, but each is our own story, a form of endurance, and its teaching. Thank you for this piece.
There is indeed a common thread running throughout the experiences of all folks who give and receive help yet there is so much truth in the idea that each experience is its own story. Thank you for pointing that out. And thank you for reading and adding your thoughts!
Oh wow, I was right there with you and would love to read this again once you’ve gotten the words and cadence to tell it.
I guess caretaking is in the blood. My maternal side are women who love by cooking your favorites, keeping house, listening or sitting silently with you as you lean against them, and with one of my elders, wipe your feet before you got into bed. And that is how I love— through work. My love is reorganizing my husband’s clothes to fit in the drawers, painting my children’s room with abstract and geometrical designs to reflect their personalities, it’s making one sunny side up egg for my daughter on a Saturday, it’s reading to my son when he can’t sleep…
More and more, though, I want to be taken care of. The seeds of a new poem or even whole newsletter started germinating a few days ago with this idea. Hope I can give the story weight when it’s ready to be written.
"And that is how I love-- through work." I get that. I pick up so much joy when you describe the things you do for your family members. I think that is one of the things I'm finding is true about myself. I love the physical work, the caretaking that is tangible and tailored to a person's needs. I struggle though when I get it wrong or somehow the intended recipient of this love reads it differently than intended. I, of course, am guilty of that sort of misreading too.
I'm interested in your desire to write about this evolving wish to be taken care of. It suggests that you are able to receive which, it seems to me, requires a giving up of ego and control, not always an easy thing to do but can lead to so much good stuff.
Thanks for the mention and for the vulnerable piece, Betsy. Caregiving is a complex topic and it hits everyone a bit differently depending on a whole host of reasons. I didn't choose to be a caregiver for Em, but I choose to make the most of it and let it help me grow as a human being in ways I never could have otherwise
That element of choice is always there, even when you did not "sign up." Thank you for pointing that out. And thank you for your wonderful writing.
Relatable as I’ve herniated discs before. Also, typo here: “On New Year’s day in 2007, I went for a boogie board ride and wound up in the ER strapped”
Thanks, Charlotte. Those things hurt. And thanks for the edit suggestion ( I welcome those!) but when I checked it, the whole sentence was there and it looked okay. Maybe it got cut off on your phone. I'll look into how the story appears when it goes out. Maybe something is happening with the formatting.
Weird! It must be a glitch in the matrix.
Thank you for writing this. I am a caregiver for my adult autistic son. I’m still figuring out what this role means for me and for my relationships with him & my husband (and I’ve been in this space 24 years!). I certainly can feel the relief in that sense of clarity you mention - I’m in caregiver mode, this is what I need to do, everything else can fall away. But you can lose yourself in the process, too. And I’ve realized a new challenging dynamic over the past few years when my husband or I needed care, due to injuries, surgeries, illnesses, and of course our son’s needs don’t stop. That’s when I feel myself getting Ratched-y - it is heavy to care for 2 people or to continue caregiving when you need it, too. This is something I need to get better prepared for, because at some point all of us will need care. I appreciate you exploring your experience on both sides of the carer/cared-for relationship, it’s given me more (writhing snakes?) to think about!
This is a space shared by others who read this newsletter and others I know. It is a heavy weight when you are caring for two or to continue caregiving when you need it too. I don't know how someone prepares for this or strategizes to get through it but I would like to know how you find your way as you move forward. I wish you strength and health and space to breathe.
Thanks for sharing, Betsy, such a thoughtful piece. I know I’m late to the party on this discussion (New to substack and am enjoying discovering some amazing authors).
Caregiving, like anything else that is important, contains multitudes. One aspect that couples are often not prepared for is the promise of a wonderful retirement filled with travel and grandkids shattered by the sudden debility of a partner. With it may come a sense of burden, anger and regret. I see it often in the families of my patients and also personally in what it did to my mother and father in law. I look forward to more from you on this topic.
Thank you, Jay. There are some wonderful writers here and I'm hoping you'll soon be one of them. Your insight into the human condition and the way you use story to express it is very special.
Oh Betsy you are really going through it! I hope your husband has a quick and easy recovery - you're lucky to have each other as these challenges arise. It seems as we age, these caregiving scenarios increase. I'm watching the dynamic change with both parents and am walking the tightrope between providing enough care and allowing for their desired independence. And, always, adult kids are sometimes needy in ways that require a delicate approach. Nothing serious is happening at the moment, but I'm in the sandwich and, as you say, it's not a matter of 'if' but 'when.' Thanks for writing this.
My best to Ed. Get well soon my friend, Ron
A few years ago I reviewed a book called "Caregiver Defined" by Michael Fortuna. As a boy, the author cared for his brother, who had polio. He wrote this book many years later. It contains short entries intended to help and support the caregiver. These entries are filled with knowing and concern, with love and compassion. Some entries are as simple as don't forget to savor a piece of chocolate. I am not sure whether he still sells this book on Amazon (or elsewhere online) but the contents struck me. Fortuna wanted to care for his brother for as long as necessary, but he also wanted to give something to caregivers because he clearly never forgot the challenges and the rewards. Also: For those who listen to podcasts, Roxanne Coady produces wonderful podcasts about books. Her most recent podcast has to do with caregiving. She interviews Dasha Kiper about her new book, "Travels to Unimaginable Lands: Stories of Dementia, the Caregiver, and the Human Brain." Thank you, Betsy, for providing us with this community of readers and writers, and for giving us so much to think about.
Thank you, Rae, for the book rec and the info about Roxanne Coady's podcast.
“When I am useful to someone else, I feel more sure of my place in this world. Even if I never finish this novel, I tell myself, at least I am essential to someone else, something larger than my own desires.” Feel this and wrestle with it. I love your willingness to throw this onto the page and let it raise some questions. I like how you separated a quote out on Substack. I’m going to play around with that and see if I can figure it out.
I'd love to read what comes of your playing around with this, Mary!
Well, what an honor. I am up late -- quite weary in mind and body, and as I read I nodded, felt comforted, made peaceful and grateful for you -- in your complex writing, in the back and forth caregiving -- and then, surprise (!) -- your kind acknowledgment. Thank you.
I should acknowledge your writing more often, Elizabeth. It always moves me and makes me think.
Obviously this post hit a nerve, no pun intended. Like so many, I have been there. My mom had a stroke in 2011, was diagnosed with vascular dementia in 2015 and died in late 2019. There were so many levels of stress that came from taking care of her but so much joy as well. I have absolutely no regrets.
A note for those whose "patient" is, as my mom was, on SS and without any significant savings or other financial resources (they can own their home). Get them on Medicare and Medicaid (Medi-Cal here in California). And once you have that set up, get them into a PACE program. PACE was a lifesaver and sanity saver for us.
You and your mom were lucky to have each other. Thanks for the practical info at the end of you comment too. You never know who it might help!