loving someone through their dementia is like pregnancy in reverse, watching a person be unmade, bracing yourself for milestones while knowing your person will do it in their own time and their own way.
grace and peace to your whole family through the next stages and thank you for the gift of your words.
"It’s the most four-dimensional experience I’ve ever had." That sums it up beautifully. I am so glad for all of you that you have found such an amazing and compassionate place for this next chapter. You're right, I know how you feel and have no idea, all in the same breath. That is the dance, isn't it?
I'm right there with you Courtney - I put my Mom in memory care two years ago, after struggling for many years to help her stay in her home. It sounds like you have found a wonderful place for your Dad. I understand the 80/20 split. What my brother and I always tell each other after each painful decision we make, is there is never a perfect answer because dementia is a rotten disease. There is only the best we can do on any given day, with the love, best intentions and knowledge we have. Thank you for your beautiful article.
Oh Courtney, this is the most beautiful post. I feel for you and your family. But it's abundantly clear that you've found the very right next step on your dad's journey toward whatever is next for us all when we leave this earthly life. That place looks truly amazing and he's lucky to be there and you're all lucky that he is there. There's so much love for him in your writing - it comes across crystal clear. And what an amazing dream. Your analysis is brilliant. Despite that 20% you are carrying around, I am deeply relieved for you, your mom, your brother and your husband and kids - and your dad, too. This is right. Sidenote, I was going to email you to ask if you have any books you'd recommend about coping with/helping parents with Alzheimers. My father-in-law is in the early stages and my hubby is struggling with how to approach him/it. Any suggestions?
Courtney, have you read The 36 Hour Day? It’s sort of basic and not as beautifully written as the wonderful ones you cite but I found it helpful in the early days of my father’s dementia journey and my nascent understanding of it —and the title reverberated over and over again during those days before memory care
I am so glad you have found a wonderful place for your father and that he seems to be getting calmer in his one-foot-in-each-realm position. Now you can continue to care for him without the exhaustion of fulltime duty. I hope too that your mother can sleep even with him out of the house. I will never forget the effect on my father of his insistence on caring for my mother at home except when a hip was actively broken.
Though no one in my life at present is in a state of precipitous decline or exit, I am reading Joan Halifax's 2008 book Being with Dying. She spent decades with a focus on being with the dying, before the term elder care doula was coined, I believe.
I know this is ahead for me, for my husband, for my children, and it seems the time to prepare is now for me.
Thank you Courtney for expressing your heart and soul. Uggh 🥹..tears..sending prayers for whatever you may need or want to help you through this.
We too are at the start of the “shedding phase”(medical term for the start of our moms decline). Not sure how we’ll be able to transition with increased need for care but your post helps me and even gives me permission to ask for more help somehow. Right now our mom is still at home and the struggle to maintain goes from being the hardest ever, to being even more difficult. There’s a line in the movie Terms Of Endearment, where Debra Winger’s character talks about motherhood and relates something like, “ as hard as you think it is, you wind up wishing it were that easy”. This speaks to me and this experience. I’m wondering if our increased need for helping hands and hearts is just the universe’s natural way of pulling our insides out, to such an extent that we must reach for something to hold onto..so that we may open ourselves, enough to fill our world with one hand at a time.. starting by holding one helping hand.. that holds another hand.. that holds another hand, which eventually widens so big that it cradles and lifts our beloved. Maybe it helps me widen my trust; the kind of trust and faith in humanity that lovingly lives on in the circle of life… And that little by little, these hands help me to move into deeper waters to hopefully someday, let go, while at the same time hold the expansive palm of eternity in my own mothers hand. We are starting the process of letting our mom know that we are ok and are going to be ok, even in the face of this deep heart ache. I hope that this helps her to not worry about us and that these helping hands and hearts will give her peace to see that community will hold us one day too when it is “our time”. Though painful, this is so great that my nephew gets to see this as he is starting to ponder existential questions..
God this is beautiful: “I’m wondering if our increased need for helping hands and hearts is just the universe’s natural way of pulling our insides out.” Sending so much love.
So beautiful! I am 82 and therefore teetering on the edge of your father’s existence, albeit still perfectly mobile and living very comfortably with my husband in our home. When the time comes, and it could any day, were you my daughter, I would applaud your decision with my wholehearted blessing. If only there were more places such as the Ashram and if there were only more caregivers/daughters just like you!
Oh that is generous, Sheila. Thank you for that gift. And. yes, I wish there were 100 Elder Ashrams of local specificity all over the country. That's what our elders deserve.
This deeply resonates with me as someone who spent decades working and running long term care facilities…the transition can be so hard but damn this place sounds like a perfect haven for your dad and so many others
“The thing about grief, made visible, is that it’s made up of all the things a human can feel. Which is part of why it’s hard to talk or write about. It’s the most four-dimensional experience I’ve ever had—the gratitude and sorrow and exhaustion and love all knotted together and pulsing pulsing pulsing under the din of your days with no clear end in sight.” This essay was so good. I’ll be thinking about these words as they resonate with me. Remembering the incredible decision to put my dad in long term care and how hard that was, and holding your family in my heart.
Your post--so vivid and true and loving--brought me back to the six years I cared for my Dad as he slipped away from this world. I still cherish those years. As emotionally fraught as they sometimes were, they allowed me and my Dad to heal past hurts, get to know each other in the unfolding present, and meet the future together. As you know, deaths (and impending deaths) are always tinged by grief and loss, but some are beautiful. My Dad's was beautiful. I wish the same for yours.
Thank you for putting such beautiful words to such a gut-wrenching experience. With you in spirit from Ohio--wishing we had a place this lovely to put my Mom when she is ready, still on the search. Thrilled to hear you, Dad, landed at such a caring place, and yet the grief endures. So nuanced and complicated and hard. Big hugs.
Courtney, what a gorgeous essay. What a gorgeous place that Ashram is! Would that it were all over this world! I completely understand what you've written - the glorious horrible pain and suffering and joy and love, the never-ending worry and helplessness, the grief, the wishing things were different. It's all so horrible. So human. So divine. I'm sorry you're having to go through this, so sorry for your precious family. How blessed your children are to see you loving your father so thoroughly through this. I am holding you and your family in the Light.
As a caregiver for my wife, your thoughts and feelings resonated deeply with me. As I shared my journey in images, conversations, poetry and quotes from others - I gained respect for all caregivers, especially those who support our loved ones in the manner of the Elder Ashram you described. (pancsofarblog.org). Thank you.
Thanks for sharing your experience, Ernest. I am blown away by all the husband's who show up with such tenderness for their wives...I was just witnessing such tenderness at the Elder Ashram the other day and feeling so touched by it. At a moment when we talk so much about men's brutality, I have seen a very very different story through this disease.
loving someone through their dementia is like pregnancy in reverse, watching a person be unmade, bracing yourself for milestones while knowing your person will do it in their own time and their own way.
grace and peace to your whole family through the next stages and thank you for the gift of your words.
So so true. As a sandwich generation caregiver, I've thought about this a lot.
"It’s the most four-dimensional experience I’ve ever had." That sums it up beautifully. I am so glad for all of you that you have found such an amazing and compassionate place for this next chapter. You're right, I know how you feel and have no idea, all in the same breath. That is the dance, isn't it?
I'm right there with you Courtney - I put my Mom in memory care two years ago, after struggling for many years to help her stay in her home. It sounds like you have found a wonderful place for your Dad. I understand the 80/20 split. What my brother and I always tell each other after each painful decision we make, is there is never a perfect answer because dementia is a rotten disease. There is only the best we can do on any given day, with the love, best intentions and knowledge we have. Thank you for your beautiful article.
Sounds like you and your brother and me and my brother need to get together for stiff drinks. Haha! I love the way you put that. Thank you.
Oh Courtney, this is the most beautiful post. I feel for you and your family. But it's abundantly clear that you've found the very right next step on your dad's journey toward whatever is next for us all when we leave this earthly life. That place looks truly amazing and he's lucky to be there and you're all lucky that he is there. There's so much love for him in your writing - it comes across crystal clear. And what an amazing dream. Your analysis is brilliant. Despite that 20% you are carrying around, I am deeply relieved for you, your mom, your brother and your husband and kids - and your dad, too. This is right. Sidenote, I was going to email you to ask if you have any books you'd recommend about coping with/helping parents with Alzheimers. My father-in-law is in the early stages and my hubby is struggling with how to approach him/it. Any suggestions?
Thank you so much.
I love almost nothing more than being asked for book recs. Here's is a whole list: https://docs.google.com/document/d/10QdADzaRfhsJx1S8yic-uShmI8hYhP-QAuCkmtnvT9c/edit?tab=t.0
Thanks a million my dear.
Courtney, have you read The 36 Hour Day? It’s sort of basic and not as beautifully written as the wonderful ones you cite but I found it helpful in the early days of my father’s dementia journey and my nascent understanding of it —and the title reverberated over and over again during those days before memory care
I am so glad you have found a wonderful place for your father and that he seems to be getting calmer in his one-foot-in-each-realm position. Now you can continue to care for him without the exhaustion of fulltime duty. I hope too that your mother can sleep even with him out of the house. I will never forget the effect on my father of his insistence on caring for my mother at home except when a hip was actively broken.
Though no one in my life at present is in a state of precipitous decline or exit, I am reading Joan Halifax's 2008 book Being with Dying. She spent decades with a focus on being with the dying, before the term elder care doula was coined, I believe.
I know this is ahead for me, for my husband, for my children, and it seems the time to prepare is now for me.
I recommend the book if you have not read it.
I love Joan's work but haven't read this book. I actually went to a silent retreat once with my dad that Joan ran! So the syncronicity is very real.
So wide and deep and personal yet universal hugs and singing with you
Thank you Courtney for expressing your heart and soul. Uggh 🥹..tears..sending prayers for whatever you may need or want to help you through this.
We too are at the start of the “shedding phase”(medical term for the start of our moms decline). Not sure how we’ll be able to transition with increased need for care but your post helps me and even gives me permission to ask for more help somehow. Right now our mom is still at home and the struggle to maintain goes from being the hardest ever, to being even more difficult. There’s a line in the movie Terms Of Endearment, where Debra Winger’s character talks about motherhood and relates something like, “ as hard as you think it is, you wind up wishing it were that easy”. This speaks to me and this experience. I’m wondering if our increased need for helping hands and hearts is just the universe’s natural way of pulling our insides out, to such an extent that we must reach for something to hold onto..so that we may open ourselves, enough to fill our world with one hand at a time.. starting by holding one helping hand.. that holds another hand.. that holds another hand, which eventually widens so big that it cradles and lifts our beloved. Maybe it helps me widen my trust; the kind of trust and faith in humanity that lovingly lives on in the circle of life… And that little by little, these hands help me to move into deeper waters to hopefully someday, let go, while at the same time hold the expansive palm of eternity in my own mothers hand. We are starting the process of letting our mom know that we are ok and are going to be ok, even in the face of this deep heart ache. I hope that this helps her to not worry about us and that these helping hands and hearts will give her peace to see that community will hold us one day too when it is “our time”. Though painful, this is so great that my nephew gets to see this as he is starting to ponder existential questions..
God this is beautiful: “I’m wondering if our increased need for helping hands and hearts is just the universe’s natural way of pulling our insides out.” Sending so much love.
So beautiful! I am 82 and therefore teetering on the edge of your father’s existence, albeit still perfectly mobile and living very comfortably with my husband in our home. When the time comes, and it could any day, were you my daughter, I would applaud your decision with my wholehearted blessing. If only there were more places such as the Ashram and if there were only more caregivers/daughters just like you!
Oh that is generous, Sheila. Thank you for that gift. And. yes, I wish there were 100 Elder Ashrams of local specificity all over the country. That's what our elders deserve.
This deeply resonates with me as someone who spent decades working and running long term care facilities…the transition can be so hard but damn this place sounds like a perfect haven for your dad and so many others
Thank you thank you for your work!
“The thing about grief, made visible, is that it’s made up of all the things a human can feel. Which is part of why it’s hard to talk or write about. It’s the most four-dimensional experience I’ve ever had—the gratitude and sorrow and exhaustion and love all knotted together and pulsing pulsing pulsing under the din of your days with no clear end in sight.” This essay was so good. I’ll be thinking about these words as they resonate with me. Remembering the incredible decision to put my dad in long term care and how hard that was, and holding your family in my heart.
Your post--so vivid and true and loving--brought me back to the six years I cared for my Dad as he slipped away from this world. I still cherish those years. As emotionally fraught as they sometimes were, they allowed me and my Dad to heal past hurts, get to know each other in the unfolding present, and meet the future together. As you know, deaths (and impending deaths) are always tinged by grief and loss, but some are beautiful. My Dad's was beautiful. I wish the same for yours.
I'm so glad you got that experience with him. What a beautiful, terrible gift.
Thank you for this beautiful, poignant post. Both my parents died with dementia. My heart is with you as you dance and cry your way.
Thank you, Daniel. Sending you love in your loss.
Thank you for putting such beautiful words to such a gut-wrenching experience. With you in spirit from Ohio--wishing we had a place this lovely to put my Mom when she is ready, still on the search. Thrilled to hear you, Dad, landed at such a caring place, and yet the grief endures. So nuanced and complicated and hard. Big hugs.
I wish that for you, too.
Courtney, what a gorgeous essay. What a gorgeous place that Ashram is! Would that it were all over this world! I completely understand what you've written - the glorious horrible pain and suffering and joy and love, the never-ending worry and helplessness, the grief, the wishing things were different. It's all so horrible. So human. So divine. I'm sorry you're having to go through this, so sorry for your precious family. How blessed your children are to see you loving your father so thoroughly through this. I am holding you and your family in the Light.
Thank you, Susan! "Glorious horrible pain" is a great summary.
Oh man. I love you so much. This just bowled me right over. How lucky your father is.
Thanks Nation. Sending love.
As a caregiver for my wife, your thoughts and feelings resonated deeply with me. As I shared my journey in images, conversations, poetry and quotes from others - I gained respect for all caregivers, especially those who support our loved ones in the manner of the Elder Ashram you described. (pancsofarblog.org). Thank you.
Thanks for sharing your experience, Ernest. I am blown away by all the husband's who show up with such tenderness for their wives...I was just witnessing such tenderness at the Elder Ashram the other day and feeling so touched by it. At a moment when we talk so much about men's brutality, I have seen a very very different story through this disease.