When Carolita Johnson became a live-in caretaker for her 87-year-old mother, reimagining this new life as a multi-year writing residency helped her make peace with a difficult living arrangement.
Wow! This is inspirational for me. I am 67 living with my 89 year old mother as her caretaker for 3 1/2 years now. Thanks to a recent divorce I was able to move to a new state, buy my own place and move her in with me. She is not as bad as Carolita''s mother, but we have never had a good relationship. My sister had been caring for her for years and, like Carolita, it was my turn. I have been struggling with creating the time and energy to write, and particularly to write about this new living arrangement. (See my substack: Aging in Place). But I think Carolita can inspire me to keep up the struggle and maybe move forward. I fear how much longer my mother might live, but I will keep writing. So glad to hear of someone else making this work. Stay strong Carolita!
It really does help to know others doing it. Thank you for raising your voice. Stay strong, and even when you're not feeling strong, well, just stay and think of the rest of us! :)
Beautifully written. You are an amazing human being to be doing this.
Your story made me feel lucky. I have spent wonderful times a lot of different artists' colonies), and living with my 97yo father doesn't seem like a residency. But he is a great guy and I'm not his caretaker but his helper and friend. He drives, prepares his own meals, goes to the doctor by himself, reads newspapers daily and four or five books a week, goes shopping, etc. Most of all he is a little grouchy but mostly pleasant and interesting to talk to and will listen to the problems of me and my siblings and keeps giving us twenty-dollar bills. He is a role model in case I get to be super-old. (I am already old.)
I could not live with a parent like your mother (if she were my mother, she'd be in a nursing home so fast her head would spin) and I admire you enormously.
Wow. I’m a family therapist and the daughter of a narcissistic mother. So I can say with personal and professional experience that you are a beacon of strength and resilience. Bravo for finding teachers and mentors in various forms. I am in awe of how you used your hard won wisdom and creativity to turn a potentially hazardous situation into an opportunity. Your writing is moving, funny, and very much crafted - no formal training needed. Thank you for sharing, Carolita.
“I probably wouldn’t have had to do that at Yaddo.” Wonderful. I can’t even imagine the inner strength it takes to do this. If I had been in her position, I am sure that my next residency would have been in the penitentiary, serving a murder sentence. Great writing!
As a caregiver of a different sort, I absolutely relate to the mind-bending it takes to do this work. Sometimes it sure feels like a job I would never have applied for (nor even been seen as a suitable candidate) but here it is. Reframing this life as a residency seems like a perfect way to go.
And I know of monster-mothers like yours, and I hope you continue to stay safe.
I have such mixed feelings about this essay and the writer's experiences. First, gratitude that people agree to take care of their often difficult parents and then write about it so beautifully. Second, as always, annoyance that writers cannot make a decent living doing what they do. And third, constantly, my concern that women put off ensuring their own financial security by taking care of others. Women live longer than men, in general, and often take on the unpaid labor associated with families. They then end up at 58, worrying about how to buy groceries.
Yuppppp! And the IRS doesn't even consider my activities as a form of "employment" since I'm not being paid, so it looks like I'm somehow willfully "underemployed," meaning I get no credit whatsoever for these last few years. If my mom was on medicaid, I could technically get "paid" for caregiving to a limited extent. But my mom really needs to be alone in that house. Plus, it's not sure selling her house would pay for the remainder of her life elsewhere. And I know people whose parents got into "good" nursing homes were still horrified by what they saw inside. People just don't know how to care for the elderly, or for those who take care of them. (Like paying them enough, giving them enough rest and occupational therapy.) As always in our world, the "worst" jobs are the worst paid, least supported and least respected, which makes no sense at all. Like, how much would we have to pay a CEO to clean all the toilets in his office himself? Eh? Maybe if nursing home staff made 200K a year and had enough support and respect I would feel better about entrusting a parent to them. Their jobs are not easy. I know that first and secondhand.
Funny, sad, tragic, horrifying and real - I love reading writing that is so brutally honest. Mental health is mostly ignored in our culture and the increasing realities of caring for elders with mental health issues is all but swept under the rug. Dementia seems acceptable to address and concern for care providers is discussed. But caring for an elder who is emotionally and mentally damaged/troubled offers an entirely different set of necessary parameters for self-care. Carolita's solution to treat it as a residency is brilliant.
Awe-inspiring feats of fortitude and caregiving as identity, reconciliation, and rebellious creativity. Your writing is a tornado (love that part) of inspiration.
Oh, this is wonderful reading! I am sitting in bed at my parents' house, both are elderly frail and with varying levels of dementia. My father came out of their bedroom on Sunday afternoon and said, "What am I supposed to do?" searching for something to do even though he forgets what he is doing a few seconds later. He tries very hard to remember. My mother is a difficult unpleasant woman who does not try very hard and long ago gave up any thoughts of agency. As missionaries, they "out-sourced" their parenting when I was six to a boarding school so they could focus on "saving" souls. I am also using the time here, when they take their afternoon nap, when they are reading their devotional literature after breakfast, as a sort of writing residency. On Sunday afternoon I was doing research about schistosomiasis (bilharzia) and trying to find out if it was in Lake Babogaya also known as Lake Bishoftu Guda or Lake Pawlo (or Paulo) now as we swam in the lake when I was a child. There's time for a walk after dinner in the evenings. It's not forever and I took this on to manage my feelings about my upbringing and some of the other cruel things they've done since then (their religion seems to have resulted in their being judgemental and cruel). The alternative would be residential care for them which I wouldn't want for anyone.
As the daughter of another monstrous mother, I salute you! I think the title of my recent Substack piece “It’s easier to love my mother now she’s dead” perhaps gives a clue… I am awed at your mental and emotional resilience and cunning reframing of this “retreat” and can’t wait to read that novel! Pirates! Parrots! And monsters… xx
I struggle with the demand that we “love” a monster, even now, almost 27 years after they die. The threats and insults echo a long long time, I guess. I’m working hard on gratitude at least. Nobody I know is 100% awful to everyone…
“Not to mention all the little invisible things I did and continue to do daily, which somehow take all day – ‘invisible’ because they would only become evident if I didn’t do them.”
Thank you for writing this. I’ve dealt with a similar experience, and this essay makes me feel seen.
I was a caretaker for my 93-yr-old mother with Dementia and extreme physical frailty…this, after she had been literally destroyed by my crazy brother who had lived with her for over 30 years. I had to drag him into court to get him evicted, after dealing with non-caring government intervention for years, and once doing that, I had to bring her into my TINY, one-bedroom cottage because her house was uninhabitable, thanks to crazy brother who was also a filthy hoarder. All of this during the stupidity of the Covid madness, too.
I have to say, the most humbling experience ever was bathing my sweet little Mom. I cried every time I did it, as all I could think about was Jesus washing the feet of his disciples as the perfect example of service and love to others. And the look of gratitude mixed with embarrassment on my Mom’s face, as she clinged to me in that bathtub as I tried to help her maintain a modicum of self-respect, is something that I will never forget.
I was her youngest child of five, and I had been quite close to her growing up, until my crazy brother moved in with her and they developed a bizarre co-dependence that resulted in her lying to me about everything in an attempt to protect him. She eventually relied on him for everything, which was reduced to nothing as he slipped further and further into his madness.
My closeness to her had evaporated over the years, but I was the only child who cared for her in the end, as all my other siblings just couldn’t be bothered. She died last January.
It was the hardest thing ever, but I would do it all over again in a heartbeat. I miss my sweet little Mom. 💔
thank you, Sari, and everybody.
🙌🏼 Thank YOU, Carolita. <3
Wow! This is inspirational for me. I am 67 living with my 89 year old mother as her caretaker for 3 1/2 years now. Thanks to a recent divorce I was able to move to a new state, buy my own place and move her in with me. She is not as bad as Carolita''s mother, but we have never had a good relationship. My sister had been caring for her for years and, like Carolita, it was my turn. I have been struggling with creating the time and energy to write, and particularly to write about this new living arrangement. (See my substack: Aging in Place). But I think Carolita can inspire me to keep up the struggle and maybe move forward. I fear how much longer my mother might live, but I will keep writing. So glad to hear of someone else making this work. Stay strong Carolita!
It really does help to know others doing it. Thank you for raising your voice. Stay strong, and even when you're not feeling strong, well, just stay and think of the rest of us! :)
Yes. Thank you.
Damn! Mad respect to this author for entering the dragon of caregiver of a toxic parent...and writing so well about it.
Beautifully written. You are an amazing human being to be doing this.
Your story made me feel lucky. I have spent wonderful times a lot of different artists' colonies), and living with my 97yo father doesn't seem like a residency. But he is a great guy and I'm not his caretaker but his helper and friend. He drives, prepares his own meals, goes to the doctor by himself, reads newspapers daily and four or five books a week, goes shopping, etc. Most of all he is a little grouchy but mostly pleasant and interesting to talk to and will listen to the problems of me and my siblings and keeps giving us twenty-dollar bills. He is a role model in case I get to be super-old. (I am already old.)
I could not live with a parent like your mother (if she were my mother, she'd be in a nursing home so fast her head would spin) and I admire you enormously.
Your father sounds incredible.
My FIL (who lived with us the last 4.5 years of his life) was like this. Quite the role model.
Wow. I’m a family therapist and the daughter of a narcissistic mother. So I can say with personal and professional experience that you are a beacon of strength and resilience. Bravo for finding teachers and mentors in various forms. I am in awe of how you used your hard won wisdom and creativity to turn a potentially hazardous situation into an opportunity. Your writing is moving, funny, and very much crafted - no formal training needed. Thank you for sharing, Carolita.
I'm always glad to know I reached someone dealing with similar issues. Thank you for reaching out. The feeling is mutual.
“I probably wouldn’t have had to do that at Yaddo.” Wonderful. I can’t even imagine the inner strength it takes to do this. If I had been in her position, I am sure that my next residency would have been in the penitentiary, serving a murder sentence. Great writing!
Brilliant, searing, devastating, hilarious
As a caregiver of a different sort, I absolutely relate to the mind-bending it takes to do this work. Sometimes it sure feels like a job I would never have applied for (nor even been seen as a suitable candidate) but here it is. Reframing this life as a residency seems like a perfect way to go.
And I know of monster-mothers like yours, and I hope you continue to stay safe.
Thank you, and sending back caregiver respect!
I have such mixed feelings about this essay and the writer's experiences. First, gratitude that people agree to take care of their often difficult parents and then write about it so beautifully. Second, as always, annoyance that writers cannot make a decent living doing what they do. And third, constantly, my concern that women put off ensuring their own financial security by taking care of others. Women live longer than men, in general, and often take on the unpaid labor associated with families. They then end up at 58, worrying about how to buy groceries.
Yes to all of this.
Yuppppp! And the IRS doesn't even consider my activities as a form of "employment" since I'm not being paid, so it looks like I'm somehow willfully "underemployed," meaning I get no credit whatsoever for these last few years. If my mom was on medicaid, I could technically get "paid" for caregiving to a limited extent. But my mom really needs to be alone in that house. Plus, it's not sure selling her house would pay for the remainder of her life elsewhere. And I know people whose parents got into "good" nursing homes were still horrified by what they saw inside. People just don't know how to care for the elderly, or for those who take care of them. (Like paying them enough, giving them enough rest and occupational therapy.) As always in our world, the "worst" jobs are the worst paid, least supported and least respected, which makes no sense at all. Like, how much would we have to pay a CEO to clean all the toilets in his office himself? Eh? Maybe if nursing home staff made 200K a year and had enough support and respect I would feel better about entrusting a parent to them. Their jobs are not easy. I know that first and secondhand.
Funny, sad, tragic, horrifying and real - I love reading writing that is so brutally honest. Mental health is mostly ignored in our culture and the increasing realities of caring for elders with mental health issues is all but swept under the rug. Dementia seems acceptable to address and concern for care providers is discussed. But caring for an elder who is emotionally and mentally damaged/troubled offers an entirely different set of necessary parameters for self-care. Carolita's solution to treat it as a residency is brilliant.
When a writer feels like a confiding friend...you've entirely won me over. Can't wait to find your cartoons.
https://www.newyorker.com/contributors/carolita-johnson
Thanks for the link to Carolita’s cartoons—they’re great!
Thanks Sari. Fun dancing at the cafe for Jen Saturday. I love this piece.
That was such fun! Good to see you.
Awe-inspiring feats of fortitude and caregiving as identity, reconciliation, and rebellious creativity. Your writing is a tornado (love that part) of inspiration.
Oh, this is wonderful reading! I am sitting in bed at my parents' house, both are elderly frail and with varying levels of dementia. My father came out of their bedroom on Sunday afternoon and said, "What am I supposed to do?" searching for something to do even though he forgets what he is doing a few seconds later. He tries very hard to remember. My mother is a difficult unpleasant woman who does not try very hard and long ago gave up any thoughts of agency. As missionaries, they "out-sourced" their parenting when I was six to a boarding school so they could focus on "saving" souls. I am also using the time here, when they take their afternoon nap, when they are reading their devotional literature after breakfast, as a sort of writing residency. On Sunday afternoon I was doing research about schistosomiasis (bilharzia) and trying to find out if it was in Lake Babogaya also known as Lake Bishoftu Guda or Lake Pawlo (or Paulo) now as we swam in the lake when I was a child. There's time for a walk after dinner in the evenings. It's not forever and I took this on to manage my feelings about my upbringing and some of the other cruel things they've done since then (their religion seems to have resulted in their being judgemental and cruel). The alternative would be residential care for them which I wouldn't want for anyone.
Yes, that's the thing: "which I wouldn't want for anyone. That's why I'm here, with her. Thank you for your comment, and solidarity.
As the daughter of another monstrous mother, I salute you! I think the title of my recent Substack piece “It’s easier to love my mother now she’s dead” perhaps gives a clue… I am awed at your mental and emotional resilience and cunning reframing of this “retreat” and can’t wait to read that novel! Pirates! Parrots! And monsters… xx
Exactly
I struggle with the demand that we “love” a monster, even now, almost 27 years after they die. The threats and insults echo a long long time, I guess. I’m working hard on gratitude at least. Nobody I know is 100% awful to everyone…
“Not to mention all the little invisible things I did and continue to do daily, which somehow take all day – ‘invisible’ because they would only become evident if I didn’t do them.”
Thank you for writing this. I’ve dealt with a similar experience, and this essay makes me feel seen.
I see you now.
Beautiful photo!
I was a caretaker for my 93-yr-old mother with Dementia and extreme physical frailty…this, after she had been literally destroyed by my crazy brother who had lived with her for over 30 years. I had to drag him into court to get him evicted, after dealing with non-caring government intervention for years, and once doing that, I had to bring her into my TINY, one-bedroom cottage because her house was uninhabitable, thanks to crazy brother who was also a filthy hoarder. All of this during the stupidity of the Covid madness, too.
I have to say, the most humbling experience ever was bathing my sweet little Mom. I cried every time I did it, as all I could think about was Jesus washing the feet of his disciples as the perfect example of service and love to others. And the look of gratitude mixed with embarrassment on my Mom’s face, as she clinged to me in that bathtub as I tried to help her maintain a modicum of self-respect, is something that I will never forget.
I was her youngest child of five, and I had been quite close to her growing up, until my crazy brother moved in with her and they developed a bizarre co-dependence that resulted in her lying to me about everything in an attempt to protect him. She eventually relied on him for everything, which was reduced to nothing as he slipped further and further into his madness.
My closeness to her had evaporated over the years, but I was the only child who cared for her in the end, as all my other siblings just couldn’t be bothered. She died last January.
It was the hardest thing ever, but I would do it all over again in a heartbeat. I miss my sweet little Mom. 💔
I'm so sorry for your loss and hardship, Nina.
I'm so sorry for your loss, and all you went through. Thanks for sharing this.