Maya and I were riding our bikes to the art store—a pandemic tradition that she asked to repeat on this sunny Sunday, when I caught some motion out of the corner of my eye. I turned to look and saw an older man hitting the sidewalk and heard him yell, “Help me!”
I agree with others that dementia touches more lives than we realize, and talking about it in real time will be a gift to many.
Of the many gifts that come alive in your story is how you chose to slow down your day to recognize the speed of James’ world. It’s been my experience that slowing down is often the hardest thing for most of us. Living at the speed of love and understanding.
And in my own experience with my mom’s long dance with early onset dementia - there are many gifts our forgetful loved ones give us. They are not wasting away, but transitioning into fully lovable, if different, people.
Courtney, this is an important and impactful story, and I thank you for sharing it. I noticed a million precious details and meanings as I read, but what filled my hope bucket the most was towards the end, when you described neighborhood walks with your dad: "I have learned to leave the theology and philosophy behind, and instead talk only about the concrete things right in front of us—that beautiful tree, that little crew of baby quails, that Little Free Library that has so many vintage botany books." I liked how, amidst a season defined by loss and longing and change, those walks create an opportunity to tend to the moment at hand, the corporeal and concrete surroundings, the evolving experience of being together now. And now. And now. And now.
Your story really touched me, Courtney. I’m very glad you'll be writing more about the journey with dementia. I’ll soon be 85, and I’m deeply aware of how many folks are on that path in one way or another. I don’t know if you’re a John Prine fan, but he has a song called “Hello In There” that might be a fitting soundtrack for your narrative. It’s on YouTube at https://www.youtube.com/watch?v=OVhA01J0Zsg. It’s worth noting that Prine wrote the song when he was 22 while walking his mail route in Maywood, IL. Sometimes we can learn a lot about the world and about ourselves simply by getting out for a walk. Lots of love to you and John and the girls, and to your Dad and Mom...
I am sure many of your readers have navigated, or are navigating this space, and we are all with you.
You know your father, and I believe with you that between yourself, your mother, and your brother you will figure out what you can share that he would be okay with your sharing.
I watched my father care for my mother through seven years of Alzheimer's, and then his last couple of years involved some dementia as well. I think often, actually, of how long I have before my children will have their own story of watching my mind step away into liminal space.
There is a tradition about which I have read recently in which elders on their way out of a space of good health and function to somewhere else are considered a living shrine. Rather than thinking of them as somehow losing their relevancy, they are held to be sacredly relevant, holding wisdom for the rest of us.
Wow Courtenay this is so close to home I am feeling a little shaken myself. My husband of 78 years is starting a decline or maybe it started five years ago. Something is changed and I find myself so alone and so troubled and sometimes (shamefully) angry that my partner, best friend can be so harsh and say what feels verbally abusive and I want to walk out at times but I must not. He needs me even as he acts mad and insulting. It is hard to find the good in this but you give me hope that I too can find moments of softness and love. My mom had dementia and it too was heartbreaking to be with but she was sweet and loving though sometimes frightened. Never mean.
Dementia is such a fickle beast. For my dad he lost his short term memory first. He recognized us and could name us for quite some time, but whether he had eaten lunch was a mystery. He was often stuck in times gone by, generally his teenage years and young adulthood. We often were regaled with stories of his time at Catholic school and this nun or that priest. Over time, things worsened of course. The day he forgot that my mother had been gone more than six years ago was a turning point. He lives in assisted living now, but we face memory care in the near future -- which is daunting for some of my siblings. The idea of my extremely independent dad locked into any space makes my brothers squirm. All this to say, each journey is different but no less painful. You are right to look for the brief moments that contain sparks of who they always were, even if it was a part of them you never really knew. When my dad would tell his school-days stories I started recording his voice, it was a good choice. Wishing a supported path for you, your family and your dad.
Deeply appreciate your reflection and vulnerability here, Courtney. This resonates with me in a different way. As someone who has experienced too much loss, but in ways that didn't require watching the personality of a loved one change in front of me, I recognize the strange gift of that.
Sometimes we have to cry *and* write, and I've written a lot of tears over the past year. Sending so much love (and a hand on the back) to you and your family.
Thank you! My mom-in-law has recently started having memory issues after falling and breaking her hip. She is such a wonderful human. I often tell folks that I couldn’t have handled picked a better mom-in-law. Yet now she forgets the simplest things, like showering, medicine, eating. Her husband passed a few years ago, so now her sons, daughter-in-laws and grandkids are trying to fill in some of the gaps.
Please keep writing. It is important, encouraging work. 😘
I have begun to share my Dad's story too. It has helped many. One of the first published pieces in Maria Shriver's Sunday Paper. Dad would be proud. We got my Dad something called a Road ID bracelet that cyclists wear. He walked out of his home in the night years ago, before moving to Memory Care, and the bracelet had all of our contact numbers. It is a terrific first step when memory issues present.
My favorite piece of all your writing (so far) AS WRITING. I am reading it over and over loving the sequences, the hand on the back. It calls to mind a quote from Buddhist teacher Larry Ward (America's Racial Karma) that's been echoing for me lately: "Beauty is the only way to transform what is happening in the world."
Thank you, Courtney! I believe James’ falling and your helping were meant to be. His fall and your calm demeanor and personal experiences with dementia collided, in a meaningful way. Your decision to share your dad’s journey into dementia helps me understand. I love your folks, and distance and life placed us miles and miles apart. Your sharing helps inform others that may not have personal experiences, as a caregiver to one traveling the path of dementia. And, as you read the comments, there are many of us who understand—sadness, loss, moments of clarity, and even smiles and laughter. Please, give your mom a huge hug, from me. And, hug your dad, as often as possible. ❤️
It is rare to talk with a family member or friend these days without learning that someone they love and know well has dementia. Perhaps the disease was called by different names until research began on Alzheimer’s Disease. Thank you for your decision to write about your father, being sensitive to his feelings and those of your mother and brother.
Thank you for this beautiful post. (And thank you for stopping for James.) I lost my own dad last year after illness, a man I adored and still looked up to. I’ve also felt deeply compelled to write about it—and I have, and I included a similar photo, of me as a toddler trying to stand on his shoulders. There’s a metaphor there, right?
These shared stories about the human experience are vital, hard as they are to write. We need them. I’m grateful you plan to keep sharing yours.
Stumbled across this post and subscribing based on your writing more about this, as I cannot seem to put pen to paper about my / our experience. We are “in the losing” of our mom, who is about 4 or 5 yrs in and not even 70. So much of what you’ve said resonates. Looking forward to more. 💕
I look forward to reading your thoughts as we travel this road together-- my step dad has dementia and it has been a long hard road. We are struggling w/ losing our mother too as she focuses so much of her energy on him and not on herself... We can do this together... Holly (64yo family doc, mother of 3 daughters....a long time reader and fan). Holly
I cried through this whole post. My dad also had dementia. It’s a unique kind type grief watching the decline. But the moments of connection within that are pretty special. Now that he’s gone I even miss the broken version of him. Thank you for sharing. Looking forward to crying more. :)
I agree with others that dementia touches more lives than we realize, and talking about it in real time will be a gift to many.
Of the many gifts that come alive in your story is how you chose to slow down your day to recognize the speed of James’ world. It’s been my experience that slowing down is often the hardest thing for most of us. Living at the speed of love and understanding.
And in my own experience with my mom’s long dance with early onset dementia - there are many gifts our forgetful loved ones give us. They are not wasting away, but transitioning into fully lovable, if different, people.
Courtney, this is an important and impactful story, and I thank you for sharing it. I noticed a million precious details and meanings as I read, but what filled my hope bucket the most was towards the end, when you described neighborhood walks with your dad: "I have learned to leave the theology and philosophy behind, and instead talk only about the concrete things right in front of us—that beautiful tree, that little crew of baby quails, that Little Free Library that has so many vintage botany books." I liked how, amidst a season defined by loss and longing and change, those walks create an opportunity to tend to the moment at hand, the corporeal and concrete surroundings, the evolving experience of being together now. And now. And now. And now.
Your story really touched me, Courtney. I’m very glad you'll be writing more about the journey with dementia. I’ll soon be 85, and I’m deeply aware of how many folks are on that path in one way or another. I don’t know if you’re a John Prine fan, but he has a song called “Hello In There” that might be a fitting soundtrack for your narrative. It’s on YouTube at https://www.youtube.com/watch?v=OVhA01J0Zsg. It’s worth noting that Prine wrote the song when he was 22 while walking his mail route in Maywood, IL. Sometimes we can learn a lot about the world and about ourselves simply by getting out for a walk. Lots of love to you and John and the girls, and to your Dad and Mom...
I am sure many of your readers have navigated, or are navigating this space, and we are all with you.
You know your father, and I believe with you that between yourself, your mother, and your brother you will figure out what you can share that he would be okay with your sharing.
I watched my father care for my mother through seven years of Alzheimer's, and then his last couple of years involved some dementia as well. I think often, actually, of how long I have before my children will have their own story of watching my mind step away into liminal space.
There is a tradition about which I have read recently in which elders on their way out of a space of good health and function to somewhere else are considered a living shrine. Rather than thinking of them as somehow losing their relevancy, they are held to be sacredly relevant, holding wisdom for the rest of us.
There is beauty in every time of life.
Wow Courtenay this is so close to home I am feeling a little shaken myself. My husband of 78 years is starting a decline or maybe it started five years ago. Something is changed and I find myself so alone and so troubled and sometimes (shamefully) angry that my partner, best friend can be so harsh and say what feels verbally abusive and I want to walk out at times but I must not. He needs me even as he acts mad and insulting. It is hard to find the good in this but you give me hope that I too can find moments of softness and love. My mom had dementia and it too was heartbreaking to be with but she was sweet and loving though sometimes frightened. Never mean.
Dementia is such a fickle beast. For my dad he lost his short term memory first. He recognized us and could name us for quite some time, but whether he had eaten lunch was a mystery. He was often stuck in times gone by, generally his teenage years and young adulthood. We often were regaled with stories of his time at Catholic school and this nun or that priest. Over time, things worsened of course. The day he forgot that my mother had been gone more than six years ago was a turning point. He lives in assisted living now, but we face memory care in the near future -- which is daunting for some of my siblings. The idea of my extremely independent dad locked into any space makes my brothers squirm. All this to say, each journey is different but no less painful. You are right to look for the brief moments that contain sparks of who they always were, even if it was a part of them you never really knew. When my dad would tell his school-days stories I started recording his voice, it was a good choice. Wishing a supported path for you, your family and your dad.
Deeply appreciate your reflection and vulnerability here, Courtney. This resonates with me in a different way. As someone who has experienced too much loss, but in ways that didn't require watching the personality of a loved one change in front of me, I recognize the strange gift of that.
Sometimes we have to cry *and* write, and I've written a lot of tears over the past year. Sending so much love (and a hand on the back) to you and your family.
Thank you! My mom-in-law has recently started having memory issues after falling and breaking her hip. She is such a wonderful human. I often tell folks that I couldn’t have handled picked a better mom-in-law. Yet now she forgets the simplest things, like showering, medicine, eating. Her husband passed a few years ago, so now her sons, daughter-in-laws and grandkids are trying to fill in some of the gaps.
Please keep writing. It is important, encouraging work. 😘
I have begun to share my Dad's story too. It has helped many. One of the first published pieces in Maria Shriver's Sunday Paper. Dad would be proud. We got my Dad something called a Road ID bracelet that cyclists wear. He walked out of his home in the night years ago, before moving to Memory Care, and the bracelet had all of our contact numbers. It is a terrific first step when memory issues present.
My favorite piece of all your writing (so far) AS WRITING. I am reading it over and over loving the sequences, the hand on the back. It calls to mind a quote from Buddhist teacher Larry Ward (America's Racial Karma) that's been echoing for me lately: "Beauty is the only way to transform what is happening in the world."
Thank you, Courtney! I believe James’ falling and your helping were meant to be. His fall and your calm demeanor and personal experiences with dementia collided, in a meaningful way. Your decision to share your dad’s journey into dementia helps me understand. I love your folks, and distance and life placed us miles and miles apart. Your sharing helps inform others that may not have personal experiences, as a caregiver to one traveling the path of dementia. And, as you read the comments, there are many of us who understand—sadness, loss, moments of clarity, and even smiles and laughter. Please, give your mom a huge hug, from me. And, hug your dad, as often as possible. ❤️
It is rare to talk with a family member or friend these days without learning that someone they love and know well has dementia. Perhaps the disease was called by different names until research began on Alzheimer’s Disease. Thank you for your decision to write about your father, being sensitive to his feelings and those of your mother and brother.
Thank you for this beautiful post. (And thank you for stopping for James.) I lost my own dad last year after illness, a man I adored and still looked up to. I’ve also felt deeply compelled to write about it—and I have, and I included a similar photo, of me as a toddler trying to stand on his shoulders. There’s a metaphor there, right?
These shared stories about the human experience are vital, hard as they are to write. We need them. I’m grateful you plan to keep sharing yours.
Stumbled across this post and subscribing based on your writing more about this, as I cannot seem to put pen to paper about my / our experience. We are “in the losing” of our mom, who is about 4 or 5 yrs in and not even 70. So much of what you’ve said resonates. Looking forward to more. 💕
I look forward to reading your thoughts as we travel this road together-- my step dad has dementia and it has been a long hard road. We are struggling w/ losing our mother too as she focuses so much of her energy on him and not on herself... We can do this together... Holly (64yo family doc, mother of 3 daughters....a long time reader and fan). Holly
I cried through this whole post. My dad also had dementia. It’s a unique kind type grief watching the decline. But the moments of connection within that are pretty special. Now that he’s gone I even miss the broken version of him. Thank you for sharing. Looking forward to crying more. :)