My dad was diagnosed with vascular dementia in 2012 and was told it would be mild until it wasn't, and that is exactly how it went. My mom contacted me in 2019 and asked for help (and if my mom was asking, I knew she definitely needed it) So in 2019, newly divorced and with my two younger children (13 and 16), we moved across the US and moved in with my parents (both 80 at the time). I worked full-time (thankfully remote), and was also caretaker to my children and parents. My dad passed away in December 2022 and my mom passed away in June 2024. I can relate to your writing so much and I am so glad you share the good, the bad, and the ugly of your life. I didn't really have anyone at the time that I could talk to and it is so validating to see someone talk about the things and feelings I experienced. Feel free to reach out to me in DMs if you ever want to chat about anything.
I just started a Substack lol It's more of a stream of consciousness thing right now but I'm sure that parts of that timeframe will find their way into my posts.
This moved me in so many ways … and such deep layers to explore. I have so much I want to share, to tell you about, as a fading man who just sat with his terminally ill sister and how much this resonates with me. 🙏🏼☮️♥️
I found myself writing about my own fragility recently and for me it seemed that during any type of vulnerable time of passage there may be a world filled with painful opposites until I discovered what is true and even good in fragility.
Frailty cannot hide or lie,
which makes frailty an honest human quality.
And the quality of resilience may strongest for those who emerge through frailty’s many vulnerabilities.
But I believe its greatest gift is revealed in recognizing an embodiment of trust and faith in the universe, as humanity reinforces remembrances of what is whole. To trust in the universe is a huge gift.
I recognize and have a deeper understanding of my mothers frailty and promise to remember that she was, is, and will always be whole.
Thank you for “facing into” as Parker Palmer beautifully coined, the characteristics of frailty, with strength of spirit, kind eyes, and truths.
You represent the best of the meaning of promise and promises.
I have learned a thing about the qualities of family, true friendship, and life in relationship to frailty. As I continue to find
love for myself and to love those I care for, I see good truths in your heart’s response to frailty. Your example represents what is possible and universal, and it all makes me feel whole. And I remember as may have you, every little goodness.
Wow, thank you doesn't suffice. This is such a gorgeous meditation on what I was trying to express. Thank you for making it feel even more true and real.
Wow, this is such a moving and important piece of the puzzle. Makes me think about Jessica's Slice, and her book which makes the case that new parents have such a horrible time because we realize we have to be dependent on others. Disabled people, she argues, already know that + aren't upset by it.
Courtney, once again you accurately articulate the heartbreak and the outrage I feel as a woman and as a full time caregiver. I send you and your family a big hug filled with so much love. Thank you for being so brave and very open about this journey with your dad. You may not realize it, but you are providing so much support to many right now. Your insightful and wise words comfort and reassure me that everything I am feeling is ok. I am honored to know you, especially as I walk on a similar path with my parents. ❤️
I am sorry, so sorry, for your father's current hardship and glad he has you, your mother, and your brother, at his side helping him through it. I remember these times with my parents.
Your post made me think of something those of us who are not yet actively deteriorating can do for those who will likely be caring for us and who will survive us.
I think we should express our preferences in advance about what about our inevitable decline can be shared and with whom. This may take some weight off of our caretakers- expressing our preference rather than some sort of hard and fast instruction.
Many people don't want to be gawked at by those who would be watching only out of interest or horror or judgment, but they would be fine with sharing with a care team, someone whose understanding would actually help the declining person, or would help his caretaker, or would help others navigating the same situation.
As an example, I have an invisible disability that my family works around and others wouldn't even notice. I don't particularly keep it a secret, sharing it sometimes if it would benefit someone, but I do not want others to be chatting about it just for the heck of it. I certainly don't want to be defined by it.
I have been explicit about this with my family, just as I have that no one is entitled to any sort of detail about my daughter's or grandson's disabilities just because they are related to us. Uncle 'Bill,' who doesn't think about this person even once a year, is not somehow entitled to know unless the subject of the illness himself chooses to share it.
Wonderful thoughts, though this experience with my dad has really helped me understand how complex the "expressing our preferences" conversation really is. It's not just about worksheets. It's about things we couldn't possibly anticipate, which makes having the conversation (especially in the case of cognitive decline) so challenging. Now that I've been through my dad's dementia, I have a different idea of what my preferences would be, but then again, each dementia is different.
Powerful, tender story. As a ghost hunter myself, I taught my psychology students that we all by nature are dependent on others. We are born as utterly dependent. A human baby does not survive unless cared for. And it is this that remains our truest and most healing nature throughout life, though our longstanding mythologies teach us otherwise and lead the world astray. We see it on full display in our politics and culture today, thus suffering abounds. Thank you.
like all your work, Courtney, this is deeply compassionate, even towards Men behaving Monstrously/Chaos Agents. At heart, so much pain. This patriarchy thing, it damages all. I love your insight about dependence and how it makes certain people feel so much yuck they want to break things to prove they're not dependent at all... the Power Tantrum... when all they want is a cuddle and some soothing and reassurance. The solution does seem to be around building cultures and economies of care... the more care is available to all, the more whole and less damaged/damaging people might be. May you and your family keep on tapping into wells of patience and compassion as you tend to your dad. How blessed he is to be so well-loved.
Loved this piece! My dad had Alzheimer’s (confirmed by autopsy), so I know the long goodbye well.
I shared in a mostly unseen note recently my recommendation to watch the recent Kim Deal interview on PBS NewsHour. Clip is available on YouTube. She discusses her new solo album, including a song called, “Are You Mine?” Spoiler is that it came out of her moving in with her parents to help care for her mom, who had Alzheimer’s. I won’t give away the details of her story, but I found both it and the song haunting and comforting as I had a couple of similar moments with my dad, especially towards the end. The song, of course, is available in the usual places.
I think your vulnerability theory is spot on, too.
I have now read this piece three times - and am again in awe of your combination of insight, bravery and ability to convey the complexities of life in ways that quickly resonate. I also marvel at your "output" - taking care of your father and the rest of your family (an endless series of tasks and responsibilities) - all the while turning out essays at a rapid clip, leading and supporting within your writing community - and no doubt dozens of other things to which you give your attention. It is inspiring. I am going to channel a bit of your bravery and silence the voice which is telling me to not offer the following reflection. It comes from a place of deep respect for you/your writing: You label Trump a "monster" - which struck me - to use the language of my middle daughter - "off-brand" for the Courtney Martin writing I so admire. It's also at odds with your more compassionate observation that Donald Trump has some "wound" he is projecting onto the world - some deep pain that was inflicted upon him as a child. You, of course, deserve a big pass for allowing (what I assume is) a little (righteous) anger to seep out. St. Augustine is allegedly the author of "hate the sin, love the sinner". So easy to say, I know. Yet, showing compassion for Trump while excoriating his deeds (and not labeling him a monster) feels like the most powerful way to lead us forward through your writing. Thank you for such an intelligent and nuanced essay.
Thanks for the pushback. I hear you. I also think that wounds can deform us to the point of becoming monstrous, which is what has happened with Trump. To me, he has become a monster. Is he all monster? No, but right now his leadership is monstrous. Maybe that would have been a better way to put it.
Thank you. In some ways, it's such a "nit" for me to have picked. It came from a place not of "pushback" but of admiration for your work and wanting you to reach (as in touch and/or cause to reflect) as many people as you can. His conduct is without a doubt monstrous. (My related concern (not directed at you whatsoever) is that in our understandable anger at Trump we "other" the people who voted for him, something which only gets in the way of our healing and the necessity of our coming together as a people to lift one another up).
Oh yes. Your title alone sends shivers of recognition down my spine. And then the heart-breaking vulnerability of your witnessing. So grateful you are in the world, Courtney.
Thank you Courtney- thrilled you are in circle with Marcus a beloved in my life. At
nearly 70 I’ve been navigating the hungry ghosts of patriarchy all my life as a dancer, clergy, seminary professor and community arts leader. This week on my substack I tell about my ancestor Anne Hutchinson and ways her followers in the 1600s tackled white male English models of church and state. What happened, including Anne’s curse, is at the root of the phenomenon we have today. After I hit the publish button I felt such fatigue. Speaking up is hard and impacts us physically. This Sunday is the anniversary of Anne’s excommunication from the church after having been banished with her family and followers from Massachusetts several months earlier. She spoke out with measured grace, dignity, and truth about the need to create from compassion, cooperation, and creative care. I’m with her. If you have time check it out. It gives context to what we’re experiencing and the fact that empowering these kind of men is deadly.
My dad was diagnosed with vascular dementia in 2012 and was told it would be mild until it wasn't, and that is exactly how it went. My mom contacted me in 2019 and asked for help (and if my mom was asking, I knew she definitely needed it) So in 2019, newly divorced and with my two younger children (13 and 16), we moved across the US and moved in with my parents (both 80 at the time). I worked full-time (thankfully remote), and was also caretaker to my children and parents. My dad passed away in December 2022 and my mom passed away in June 2024. I can relate to your writing so much and I am so glad you share the good, the bad, and the ugly of your life. I didn't really have anyone at the time that I could talk to and it is so validating to see someone talk about the things and feelings I experienced. Feel free to reach out to me in DMs if you ever want to chat about anything.
Wow, Andie, you really did the damn thing. Sending so much admiration your way. You probably have some amazing stories to tell.
I just started a Substack lol It's more of a stream of consciousness thing right now but I'm sure that parts of that timeframe will find their way into my posts.
Broligarchy is
terrified by tenderness,
interdependence.
This moved me in so many ways … and such deep layers to explore. I have so much I want to share, to tell you about, as a fading man who just sat with his terminally ill sister and how much this resonates with me. 🙏🏼☮️♥️
I want to hear it all Puz! My mom just finished reading your book and now it is on my stack. Can't wait.
Oh we would have such a great conversation. I thank you and your mom for reading. I can't tell you how much it means to me.
I found myself writing about my own fragility recently and for me it seemed that during any type of vulnerable time of passage there may be a world filled with painful opposites until I discovered what is true and even good in fragility.
Frailty cannot hide or lie,
which makes frailty an honest human quality.
And the quality of resilience may strongest for those who emerge through frailty’s many vulnerabilities.
But I believe its greatest gift is revealed in recognizing an embodiment of trust and faith in the universe, as humanity reinforces remembrances of what is whole. To trust in the universe is a huge gift.
I recognize and have a deeper understanding of my mothers frailty and promise to remember that she was, is, and will always be whole.
Thank you for “facing into” as Parker Palmer beautifully coined, the characteristics of frailty, with strength of spirit, kind eyes, and truths.
You represent the best of the meaning of promise and promises.
I have learned a thing about the qualities of family, true friendship, and life in relationship to frailty. As I continue to find
love for myself and to love those I care for, I see good truths in your heart’s response to frailty. Your example represents what is possible and universal, and it all makes me feel whole. And I remember as may have you, every little goodness.
Thank you Courtney.
Wow, thank you doesn't suffice. This is such a gorgeous meditation on what I was trying to express. Thank you for making it feel even more true and real.
Wow, this is such a moving and important piece of the puzzle. Makes me think about Jessica's Slice, and her book which makes the case that new parents have such a horrible time because we realize we have to be dependent on others. Disabled people, she argues, already know that + aren't upset by it.
My Slate producer was just talking about Jessica's book!
Courtney, once again you accurately articulate the heartbreak and the outrage I feel as a woman and as a full time caregiver. I send you and your family a big hug filled with so much love. Thank you for being so brave and very open about this journey with your dad. You may not realize it, but you are providing so much support to many right now. Your insightful and wise words comfort and reassure me that everything I am feeling is ok. I am honored to know you, especially as I walk on a similar path with my parents. ❤️
I am sorry, so sorry, for your father's current hardship and glad he has you, your mother, and your brother, at his side helping him through it. I remember these times with my parents.
Your post made me think of something those of us who are not yet actively deteriorating can do for those who will likely be caring for us and who will survive us.
I think we should express our preferences in advance about what about our inevitable decline can be shared and with whom. This may take some weight off of our caretakers- expressing our preference rather than some sort of hard and fast instruction.
Many people don't want to be gawked at by those who would be watching only out of interest or horror or judgment, but they would be fine with sharing with a care team, someone whose understanding would actually help the declining person, or would help his caretaker, or would help others navigating the same situation.
As an example, I have an invisible disability that my family works around and others wouldn't even notice. I don't particularly keep it a secret, sharing it sometimes if it would benefit someone, but I do not want others to be chatting about it just for the heck of it. I certainly don't want to be defined by it.
I have been explicit about this with my family, just as I have that no one is entitled to any sort of detail about my daughter's or grandson's disabilities just because they are related to us. Uncle 'Bill,' who doesn't think about this person even once a year, is not somehow entitled to know unless the subject of the illness himself chooses to share it.
Wonderful thoughts, though this experience with my dad has really helped me understand how complex the "expressing our preferences" conversation really is. It's not just about worksheets. It's about things we couldn't possibly anticipate, which makes having the conversation (especially in the case of cognitive decline) so challenging. Now that I've been through my dad's dementia, I have a different idea of what my preferences would be, but then again, each dementia is different.
Powerful, tender story. As a ghost hunter myself, I taught my psychology students that we all by nature are dependent on others. We are born as utterly dependent. A human baby does not survive unless cared for. And it is this that remains our truest and most healing nature throughout life, though our longstanding mythologies teach us otherwise and lead the world astray. We see it on full display in our politics and culture today, thus suffering abounds. Thank you.
like all your work, Courtney, this is deeply compassionate, even towards Men behaving Monstrously/Chaos Agents. At heart, so much pain. This patriarchy thing, it damages all. I love your insight about dependence and how it makes certain people feel so much yuck they want to break things to prove they're not dependent at all... the Power Tantrum... when all they want is a cuddle and some soothing and reassurance. The solution does seem to be around building cultures and economies of care... the more care is available to all, the more whole and less damaged/damaging people might be. May you and your family keep on tapping into wells of patience and compassion as you tend to your dad. How blessed he is to be so well-loved.
The power tantrum! Amazing phrase.
Loved this piece! My dad had Alzheimer’s (confirmed by autopsy), so I know the long goodbye well.
I shared in a mostly unseen note recently my recommendation to watch the recent Kim Deal interview on PBS NewsHour. Clip is available on YouTube. She discusses her new solo album, including a song called, “Are You Mine?” Spoiler is that it came out of her moving in with her parents to help care for her mom, who had Alzheimer’s. I won’t give away the details of her story, but I found both it and the song haunting and comforting as I had a couple of similar moments with my dad, especially towards the end. The song, of course, is available in the usual places.
I think your vulnerability theory is spot on, too.
Thank you so much for the recommendation!
Powerful connections here. Beautiful piece.
Wow. So fierce and beautiful by turns.
So true so true so true. All of it, so true. In my family and so many families I know. Why are we not doing more as a society to create more support?
I have now read this piece three times - and am again in awe of your combination of insight, bravery and ability to convey the complexities of life in ways that quickly resonate. I also marvel at your "output" - taking care of your father and the rest of your family (an endless series of tasks and responsibilities) - all the while turning out essays at a rapid clip, leading and supporting within your writing community - and no doubt dozens of other things to which you give your attention. It is inspiring. I am going to channel a bit of your bravery and silence the voice which is telling me to not offer the following reflection. It comes from a place of deep respect for you/your writing: You label Trump a "monster" - which struck me - to use the language of my middle daughter - "off-brand" for the Courtney Martin writing I so admire. It's also at odds with your more compassionate observation that Donald Trump has some "wound" he is projecting onto the world - some deep pain that was inflicted upon him as a child. You, of course, deserve a big pass for allowing (what I assume is) a little (righteous) anger to seep out. St. Augustine is allegedly the author of "hate the sin, love the sinner". So easy to say, I know. Yet, showing compassion for Trump while excoriating his deeds (and not labeling him a monster) feels like the most powerful way to lead us forward through your writing. Thank you for such an intelligent and nuanced essay.
Thanks for the pushback. I hear you. I also think that wounds can deform us to the point of becoming monstrous, which is what has happened with Trump. To me, he has become a monster. Is he all monster? No, but right now his leadership is monstrous. Maybe that would have been a better way to put it.
Thank you. In some ways, it's such a "nit" for me to have picked. It came from a place not of "pushback" but of admiration for your work and wanting you to reach (as in touch and/or cause to reflect) as many people as you can. His conduct is without a doubt monstrous. (My related concern (not directed at you whatsoever) is that in our understandable anger at Trump we "other" the people who voted for him, something which only gets in the way of our healing and the necessity of our coming together as a people to lift one another up).
Agreed wholeheartedly. I always want feedback and I don't see it as a nit. It's a portal into a bigger, very important conversation.
Oh yes. Your title alone sends shivers of recognition down my spine. And then the heart-breaking vulnerability of your witnessing. So grateful you are in the world, Courtney.
Thank you Courtney- thrilled you are in circle with Marcus a beloved in my life. At
nearly 70 I’ve been navigating the hungry ghosts of patriarchy all my life as a dancer, clergy, seminary professor and community arts leader. This week on my substack I tell about my ancestor Anne Hutchinson and ways her followers in the 1600s tackled white male English models of church and state. What happened, including Anne’s curse, is at the root of the phenomenon we have today. After I hit the publish button I felt such fatigue. Speaking up is hard and impacts us physically. This Sunday is the anniversary of Anne’s excommunication from the church after having been banished with her family and followers from Massachusetts several months earlier. She spoke out with measured grace, dignity, and truth about the need to create from compassion, cooperation, and creative care. I’m with her. If you have time check it out. It gives context to what we’re experiencing and the fact that empowering these kind of men is deadly.