Oh, Courtney. [SIGH] Your deep love for your dad is so palpable. What a gift to feel it and your sharing of it. Thank you.
Maybe it's because when my marriage ended it felt like I fell off the edge of the known universe, and the dozen years since have felt like a repetitive releasing of so much that I thought I knew about myself and the world and many of the people around me. Maybe it's being on the far side of my son's transition and my younger kid's coming out as non-binary, both of which just kind of blew my mind. Not because I had any opposition, but just because I never suspected prior and had always prided myself on how well I knew my kids. (Pride goeth, as they say.) And now I'm (recently) 52, my mom is 83, my oldest brother is 62 and we're finally easing into a new phase of relationship to each other, which involves letting go of many of our presumptions about who each other are and how this life is going to go. Maybe it's all of those things, but I'm beginning to feel like the fluidity of self, the sheer mystery of who we all are, or become, over the course of an entire life, is kind of a miraculous gift. Anything is possible (Gah!), but also anything is possible (Wow!).
Otherwise, how would we ever experience forgiveness or revelation or surprise? To get those things we have to leave the door open to unknowing, risk, confusion, and uncertainty, which the teenager in me resists heartily, thinking it's sort of a crap-ass bargain. But current me realizes what a gift it has been to learn to love with open hands, so okay. I'll take it, all of it.
My sigh was at the poignancy in your writing, which brought big feelings. I wasn't sighing AT you, and it just occurred to me it could read that way. I'm sorry if that didn't convey.
This extraordinary insight into dementia and Buddhism makes it imperative that Courtney consider writing a book on it. We've mentioned before the Buddhist writings of Thich Nhat Hanh and the Dalai Lama, who offer deep analyses of the "self" but don't relate it to Alzheimer's specifically. Courtney is fortunate to have the theoretical background, remarkable skill as a writer, and the most intimate lifelong relationship with one suffering from this dreaded disease.
Buddhist philosophy and practice definitely enhances this compelling story.
Finally, Courtney is fortunate to have her father able to speak coherently , (unlike my brother and also a close friend, who became unintelligible)so it's important to use this time wisely. From my perspective of 86 years, I see this as an opportunity to give us all both solace and assistance. We need to read many more personal narratives by brilliant authors like Courtney, to help us cope in this monumental struggle. DD
Thank you dear mentors. I'm tickled to find you in this space side by side. If only it were in person. Love you both. Thank you for all of your encouragement.
Your story and the food for thought you provide have deeply touched me. My father died at 99 and did not have dementia. He was physically challenged and in a wheelchair, not able to take care of himself. His world, too, was largely what was in front of him. Accompanying our elderly parents on their journey is hard, but I think you are doing an amazing job. What I learned from my dad in these last years has profoundly shaped who I am. It will shape you too. Thanks for sharing.
Thank you for sharing your journey and your self-reflections so honestly.
A relative has dementia. I recently told him he has achieved what so many of us struggle to do - live in the moment. We - including he - all had a hearty laugh about that. Thankfully, although he has lost so much else, he has not lost his sense of humor. He finds great joy in watching the birds and trees and animals outside and spending time with his grand-dogs. This is not to say that there has not also been a grief - within himself initially, within those of us who love them - as he has transitioned into a new version of himself. It is also a lot for his wife to manage on her own, as she is also aging. This is where a lifetime of being "self-sufficient" becomes a detriment, as others in the family are ready and willing to help, but there is not yet enough space for them to let us in.
The December 2023 issue of The Sun magazine in has a wonderful article, "Speak, Memory" featuring an interview with Lynn Casteel Harper "on new ways of understanding dementia." (https://www.thesunmagazine.org/issues/576/speak-memory) Harper keys in on the idea that we "experience multiple selves" throughout our lives, and people experiencing dementia are revealing another iteration of self. She also reminds us that people with dementia "are not empty shells...they wish for the sames things I wish for, which are to be love and be loved, to be treated as a whole person with a history." Harper says "Those of us who don't have dementia too often fail to recognize how we can learn from people who do."
This is all to say that your father is so very lucky to have you as his daughter, with your care, compassion, shared history, and openness to the future. And we, your readers, are lucky to get a peak into your journey.
This resonates deeply! "This is where a lifetime of being 'self-sufficient' becomes a detriment, as others in the family are ready and willing to help, but there is not yet enough space for them to let us in." Dementia not only transforms the person who has it, but those who surround the person and have to wake up to all of our frailty and overwhelm. And I LOVE The Sun Magazine. I need to re-up my subscription. Great reminder.
Hey Courtney, my dad has dementia, too. He's 93. I totally relate to the anxiety issue. At first, he was so much more worried about what he was forgetting. Would freak out about missing an appointment and end up showing up 12 hours early (9pm instead of 9am). These days, he's not trying to keep his schedule; others are. We're paying his bills and taxes, taking him places (no more driving), and coordinating with his girlfriend re dinner dates. He's living entirely in the moment now. I can see now how hard it is for the rest of us to be in the moment when we're worrying about what happened before and what's happening next. Thanks for writing about this. Means a lot to know others are dealing with this. Maybe you can come up with ways to have a conversation with our dads that's entirely in the moment and where we ask no questions about the past or future!! It's so hard!
It is so hard Stephanie! I feel like I'm learning a new language. When we walk, what I mostly do is reacquaint myself with the beauty of silence (it doesn't seem to bother my dad when we are quiet) and also notice the world around us. As long as I stay mostly in that zone, we seem to understand one another fine these days. It's when I get itchy to talk more broadly that things grow disjointed. And that's okay, too, I just return to the present moment. Weirdly exactly like meditation.
Courtney, Thank you for sharing this journey you are on with your dad. It's heartbreaking and heart-filling all at once, which you write about with such grace. You remind us to see and embrace the real life that flows beneath our everyday rhythms. So grateful for you.
Oooh this reminded me of the buddhist story about the farmer whose horse runs away the village says "That's too bad," and the farmer says, "Maybe so, maybe not. We'll see..." and all the rest. Your dad meditated for all those years trying to get back to beginner's mind. Now he's got a permanent beginner's mind and doesn't need to remember all of that meditation! Wow.
Thank you, again, for sharing this piece of your life. So many are going through similar. Are you familiar with the book, “Ten Thousand Joys; Ten Thousand Sorrows”?
I found it to be beautiful, illuminating, wise. About living with and caring for a loved one with Alzheimer’s from a Buddhist perspective--based on a personal story. Take good care.
Thank you for sharing all this, Courtney! My Grandma's anxiety also seemed to melt away with her dementia. As a somewhat self-absorbed 16 yr old I was mostly aware that she was less critical but in hindsight I'm sure having less anxiety was a big part of it. I look forward to reading your lovely words every week and I hope writing about your dad has been cathartic!
While some of the edges softened, I never felt my parents changed fundamentally in their dementia.
My father was always warm, my mother not.
My father lost some of his anxious attention to detail, because he could no longer attend to detail, due as much to physical limitations, as he was by then also on the other side of strokes. He accepted it as the winter of his life.
As there are aspects of my life too that I believe are done, I understand this acceptance.
My mother lost a chunk of her 'fight.' I don't know whether this change arose because of her inability to organize mentally for it, or whether it was that zoloft was part of the mix of medications for the various health issues she faced.
My mother died 25 years ago yesterday and my father 18 years ago. It is still deeply affecting to remember it all.
I hope as your father's illness progresses you can get whatever help for your mother that she needs. It becomes very physically demanding on the caretaker.
I am glad you are able to be there often with your parents despite living in a different state.
I am so glad. I thought they were in Colorado Springs.
During my mother's decline I was over 1000 miles away, with three children, including a baby. During my father's I was maybe 800 miles away with three kids and a job that was in no way portable.
oh my goodness, Courtney! This is so poignant and sweet and sad and reassuring, and and and… Thank you so much for your vulnerability, and courage and transparency in sharing this story. I relate to a lot of it in various ways - one of which is that it makes me feel less frightened of dementia myself. Having worked as a medical social worker and now personally dealing with my mom‘s dementia, I’ve always joked that I want to have the kind of dementia where I just get mellow and happy, and I don’t care what I can’t remember! and sometimes it does happen that way, although there are no guarantees, of course. sadly, in my mom‘s case, her anxieties have increased, and now sometimes border on paranoia. Blessings and gratitude to you.
My dad died last February after years of physical and cognitive decline from dementia. Sharing the dialogue & experiences you’re having with your dad echoes our last several years together. Nothing about this journey is easy, yet finding small miracles (like reduced anxiety) is a balm. Blessings.
Reading this was a profoundly moving experience for me, and I sent it to my parents. We've been walking alongside my grandma on one side of the family, and great aunt on the other as they have been living with dementia for several years. Thank you for sharing!
Oh, Courtney. [SIGH] Your deep love for your dad is so palpable. What a gift to feel it and your sharing of it. Thank you.
Maybe it's because when my marriage ended it felt like I fell off the edge of the known universe, and the dozen years since have felt like a repetitive releasing of so much that I thought I knew about myself and the world and many of the people around me. Maybe it's being on the far side of my son's transition and my younger kid's coming out as non-binary, both of which just kind of blew my mind. Not because I had any opposition, but just because I never suspected prior and had always prided myself on how well I knew my kids. (Pride goeth, as they say.) And now I'm (recently) 52, my mom is 83, my oldest brother is 62 and we're finally easing into a new phase of relationship to each other, which involves letting go of many of our presumptions about who each other are and how this life is going to go. Maybe it's all of those things, but I'm beginning to feel like the fluidity of self, the sheer mystery of who we all are, or become, over the course of an entire life, is kind of a miraculous gift. Anything is possible (Gah!), but also anything is possible (Wow!).
Otherwise, how would we ever experience forgiveness or revelation or surprise? To get those things we have to leave the door open to unknowing, risk, confusion, and uncertainty, which the teenager in me resists heartily, thinking it's sort of a crap-ass bargain. But current me realizes what a gift it has been to learn to love with open hands, so okay. I'll take it, all of it.
This is a beautiful response to a beautiful essay. ❤️🙏🏽
My sigh was at the poignancy in your writing, which brought big feelings. I wasn't sighing AT you, and it just occurred to me it could read that way. I'm sorry if that didn't convey.
Oh I didn't take it that way, but thanks for being so thoughtful Asha!
This extraordinary insight into dementia and Buddhism makes it imperative that Courtney consider writing a book on it. We've mentioned before the Buddhist writings of Thich Nhat Hanh and the Dalai Lama, who offer deep analyses of the "self" but don't relate it to Alzheimer's specifically. Courtney is fortunate to have the theoretical background, remarkable skill as a writer, and the most intimate lifelong relationship with one suffering from this dreaded disease.
Buddhist philosophy and practice definitely enhances this compelling story.
Finally, Courtney is fortunate to have her father able to speak coherently , (unlike my brother and also a close friend, who became unintelligible)so it's important to use this time wisely. From my perspective of 86 years, I see this as an opportunity to give us all both solace and assistance. We need to read many more personal narratives by brilliant authors like Courtney, to help us cope in this monumental struggle. DD
I want to second Dennis Dalton’s suggestion... As I read Courtney's brilliant piece, I kept thinking “This needs to be her next book.”
Thank you dear mentors. I'm tickled to find you in this space side by side. If only it were in person. Love you both. Thank you for all of your encouragement.
As an elderly friend (age 84) of many friends with family members who have dementia, I would value such a book.
Your story and the food for thought you provide have deeply touched me. My father died at 99 and did not have dementia. He was physically challenged and in a wheelchair, not able to take care of himself. His world, too, was largely what was in front of him. Accompanying our elderly parents on their journey is hard, but I think you are doing an amazing job. What I learned from my dad in these last years has profoundly shaped who I am. It will shape you too. Thanks for sharing.
Courtney,
Thank you for sharing your journey and your self-reflections so honestly.
A relative has dementia. I recently told him he has achieved what so many of us struggle to do - live in the moment. We - including he - all had a hearty laugh about that. Thankfully, although he has lost so much else, he has not lost his sense of humor. He finds great joy in watching the birds and trees and animals outside and spending time with his grand-dogs. This is not to say that there has not also been a grief - within himself initially, within those of us who love them - as he has transitioned into a new version of himself. It is also a lot for his wife to manage on her own, as she is also aging. This is where a lifetime of being "self-sufficient" becomes a detriment, as others in the family are ready and willing to help, but there is not yet enough space for them to let us in.
The December 2023 issue of The Sun magazine in has a wonderful article, "Speak, Memory" featuring an interview with Lynn Casteel Harper "on new ways of understanding dementia." (https://www.thesunmagazine.org/issues/576/speak-memory) Harper keys in on the idea that we "experience multiple selves" throughout our lives, and people experiencing dementia are revealing another iteration of self. She also reminds us that people with dementia "are not empty shells...they wish for the sames things I wish for, which are to be love and be loved, to be treated as a whole person with a history." Harper says "Those of us who don't have dementia too often fail to recognize how we can learn from people who do."
This is all to say that your father is so very lucky to have you as his daughter, with your care, compassion, shared history, and openness to the future. And we, your readers, are lucky to get a peak into your journey.
This resonates deeply! "This is where a lifetime of being 'self-sufficient' becomes a detriment, as others in the family are ready and willing to help, but there is not yet enough space for them to let us in." Dementia not only transforms the person who has it, but those who surround the person and have to wake up to all of our frailty and overwhelm. And I LOVE The Sun Magazine. I need to re-up my subscription. Great reminder.
A couple of decades ago I hung up the phone & turned to my husband. “Something’s wrong with my dad. He sounded so happy.”
Hey Courtney, my dad has dementia, too. He's 93. I totally relate to the anxiety issue. At first, he was so much more worried about what he was forgetting. Would freak out about missing an appointment and end up showing up 12 hours early (9pm instead of 9am). These days, he's not trying to keep his schedule; others are. We're paying his bills and taxes, taking him places (no more driving), and coordinating with his girlfriend re dinner dates. He's living entirely in the moment now. I can see now how hard it is for the rest of us to be in the moment when we're worrying about what happened before and what's happening next. Thanks for writing about this. Means a lot to know others are dealing with this. Maybe you can come up with ways to have a conversation with our dads that's entirely in the moment and where we ask no questions about the past or future!! It's so hard!
It is so hard Stephanie! I feel like I'm learning a new language. When we walk, what I mostly do is reacquaint myself with the beauty of silence (it doesn't seem to bother my dad when we are quiet) and also notice the world around us. As long as I stay mostly in that zone, we seem to understand one another fine these days. It's when I get itchy to talk more broadly that things grow disjointed. And that's okay, too, I just return to the present moment. Weirdly exactly like meditation.
Courtney, Thank you for sharing this journey you are on with your dad. It's heartbreaking and heart-filling all at once, which you write about with such grace. You remind us to see and embrace the real life that flows beneath our everyday rhythms. So grateful for you.
Thanks dear Jeff. The conversations at the On Being gathering, including ours, helped me get here.
Oooh this reminded me of the buddhist story about the farmer whose horse runs away the village says "That's too bad," and the farmer says, "Maybe so, maybe not. We'll see..." and all the rest. Your dad meditated for all those years trying to get back to beginner's mind. Now he's got a permanent beginner's mind and doesn't need to remember all of that meditation! Wow.
YES! The phrase "beginner's mind" popped into my head this morning after this was published and here you are, pulling it out.
You are a brilliant writer and observer. Reading about your journey with your father made my day. Not easy but beautiful. Sending love to all.
Thank you, again, for sharing this piece of your life. So many are going through similar. Are you familiar with the book, “Ten Thousand Joys; Ten Thousand Sorrows”?
No! Should I check it out?
I found it to be beautiful, illuminating, wise. About living with and caring for a loved one with Alzheimer’s from a Buddhist perspective--based on a personal story. Take good care.
Thank you for sharing all this, Courtney! My Grandma's anxiety also seemed to melt away with her dementia. As a somewhat self-absorbed 16 yr old I was mostly aware that she was less critical but in hindsight I'm sure having less anxiety was a big part of it. I look forward to reading your lovely words every week and I hope writing about your dad has been cathartic!
While some of the edges softened, I never felt my parents changed fundamentally in their dementia.
My father was always warm, my mother not.
My father lost some of his anxious attention to detail, because he could no longer attend to detail, due as much to physical limitations, as he was by then also on the other side of strokes. He accepted it as the winter of his life.
As there are aspects of my life too that I believe are done, I understand this acceptance.
My mother lost a chunk of her 'fight.' I don't know whether this change arose because of her inability to organize mentally for it, or whether it was that zoloft was part of the mix of medications for the various health issues she faced.
My mother died 25 years ago yesterday and my father 18 years ago. It is still deeply affecting to remember it all.
I hope as your father's illness progresses you can get whatever help for your mother that she needs. It becomes very physically demanding on the caretaker.
I am glad you are able to be there often with your parents despite living in a different state.
Thankfully we live in the same state, just different cities.
I am so glad. I thought they were in Colorado Springs.
During my mother's decline I was over 1000 miles away, with three children, including a baby. During my father's I was maybe 800 miles away with three kids and a job that was in no way portable.
The little moments with your Dad now that you share with us makes me remember my own little moments with my father. Thank you!
oh my goodness, Courtney! This is so poignant and sweet and sad and reassuring, and and and… Thank you so much for your vulnerability, and courage and transparency in sharing this story. I relate to a lot of it in various ways - one of which is that it makes me feel less frightened of dementia myself. Having worked as a medical social worker and now personally dealing with my mom‘s dementia, I’ve always joked that I want to have the kind of dementia where I just get mellow and happy, and I don’t care what I can’t remember! and sometimes it does happen that way, although there are no guarantees, of course. sadly, in my mom‘s case, her anxieties have increased, and now sometimes border on paranoia. Blessings and gratitude to you.
My dad died last February after years of physical and cognitive decline from dementia. Sharing the dialogue & experiences you’re having with your dad echoes our last several years together. Nothing about this journey is easy, yet finding small miracles (like reduced anxiety) is a balm. Blessings.
I'm so sorry for your loss. Thanks for sharing.
Reading this was a profoundly moving experience for me, and I sent it to my parents. We've been walking alongside my grandma on one side of the family, and great aunt on the other as they have been living with dementia for several years. Thank you for sharing!
I'm so glad it was useful to your family. Sending love.