I have had two parents who had dementia in their final years, one beloved younger person with schizophrenia seeing and feeling things in her own way, and one very neurological different grandchild. Then, of course, we have our babies before they can express themselves in the ways we later come to do and the animals in our lives with their own umwelten and ways of conveying what is going on with them.
We find, don't we, that can communicate across these differences, learning to listen with our different senses and to feel our way together in the moment and over time. I have never felt an impossible gulf.
I suspect we are all, always, unknowable to each other. What it sounds like your dad isn't any longer is predictable, a reliable and consistent iteration of a known and depended upon self. And that is as deeply unsettling as it ever is, when you never know who you will encounter when you encounter someone. Especially if your self is understood in relationship to their self.
It sounds like your dad's fluidity is calling for some fluidity in you. Some willingness to rise up, open-handed and curious and loving, in every moment. That is shockingly hard. Sending you love.
My father passed away about seven years ago, ten years after his dementia diagnosis. I felt like I got to know other sides of him during that time, and it was, sometimes, quite beautiful, other times profoundly challenging. This way of seeing it, in the context of regular unknowability, is so helpful - and comforting. Thank you.
I don’t think I can fully capture how profoundly moving piece is. It so beautifully captures the dignity and profound spirituality of accompanying someone through dementia. What a gift.
I’ve recently turned toward the Christian tradition of welcoming the stranger as a way of understanding family. When I gather at the table with my husband and 4-year-old, we are welcoming one another as strangers, because we are still learning what stories are contained in each body, how those stories are arranged, and how each moment intersects with those stories. Your piece so beautifully expressed this dynamic in a way that makes room for the undeciphered stories that move leaps of poetry rather than logic.
When we were 33 years old, my husband then was diagnosed with brain cancer in his left parietal lobe. My mom's survival of stage-four ovarian cancer helped us face the unknowable. Fast forward 20 years and my mom's early stages of dementia mimicked Scott's -- I knew it was a "brain thing" when her vision that her brain registered didn't match her 20/20 eyesight, like ignoring objects right in front of her. My brain had to register what was happening and how I was going to survive as a caregiver (daughter, wife, mother). A neuropsychologist talked with us in 1998 how ironic but a gift it can be for the brain to contemplate it's own challenges. My mom's brilliant brain recognized and advocated for her own symptoms, asking questions of the specialists my dad and I would not have thought of. I think one of my biggest lessons is how the soul/heart seems separate yet inextricably linked to this body/brain of ours. Paradox was so very present through it all! My own brain/heart/soul decided to "grieve as I go" and take lots of notes! Thank you for sharing your journey with your dad and family so eloquently. Much love to you!
This is so beautiful. As one whose mom experienced Alzheimer's 30 years ago, I so appreciate the ongoing evolution of language and thought around how we understand and relate to dementia. A preacher / mentor in this area once said that at the core of relationships we experience laughter, pleasure, joy and love. We are called to be inclusive and present. All of this possible regardless of how much one remembers or can articulate. Thanks for sharing your ongoing journey with such grace.
Such a beautiful and thoughtful moment, thank you for sharing this.
I am left contemplating how we are (how I have been) taught to language all sorts of things, conditions, people....I will be carrying that question with me for a long time, and thank you for that gentle insight, too.
“Temporarily able brained,” that is a good way to be aware of what we are. Temporarily able brain/bodied. Having kids made me realize how we all go and will go through phases of abled-ness: I’m suddenly personally grateful for curb cuts and voice to text, need an extra hand or extra arms, need significant family sick time, need extra caring folks around me, my partner, and my kids. Thanks for helping express it is much the same for our minds. And I loved the anecdotes about your older brother lithely jumping away from the waves and your father seizing the whiskey cup that you offered him to cheers and saying delicious. Sounds like he has a core sweetness.
Hey Courtney. I love this newsletter very much. You give me much to think about and I’m so very grateful for that.
It is a challenging but also beautiful time for you and your Dad right now. Bittersweet. Thanks for sharing your experience. This is something I may well have to navigate in the future so it’s very helpful.
There is a wonderful person on insta who posts a tonne of helpful stuff for carers and family members navigating dementia. I thought you and your family might find some helpful strategies for meals, showering and general day to day things that people with dementia find confusing. Belightcare:
Thank you Courtney. So much tenderness in your writing. I feel called to pause after reading it, over and over. I feel so moved, sort of like I am inside a poem about a love encounter with an old soul in a new form. Your openness to be surprised, to be led in the moment by whatever your dad is able to offer, or comes through him, touches me deeply. I had the honor of knowing him in his prior selves and witness his immense love of you and Chris. No doubt his love accompanies you as you bring presence to the mysteries of this moment. Love you.
Courtney, thank you so much for writing about this experience and sharing it with us. Your work is such good company to me as I navigate Alzheimer's with my own dad. You are helping me (and all of us) expand our curiosity, expand our compassion, and I am deeply grateful for that. I have a piece inside of me that needs to come out about this, and your work continues to remind me that this story is worth telling. Thank you!
Courtney. Every time you write about this journey my heart literally feels it. I listened your beautiful podcast while I was hiking the incline ( you know one cannot breathe when doing that crazy adventure in your home turf) and tears just rolled down my eyes in the beautiful blue skies of Colorado. Thank you Courtney ♥️
My sibs and I (5 of us) are navigating our dad's and mom's cognitive changes that have come with dementia. It is heart-wrenching, frustrating, sweet and painful. There are days we have to remember we can't negotiate with them. And days when we have to let go of what was- and meet them where they are at. Thank you, Courtney, for sharing your journey.
I can only repeat how profoundly I identify with Courtney's experiences with Ron because of having intimate members of my family in this condition. My heart goes out to you. I only wish that I could offer help or at least the ability to express my feelings as eloquently. DD
I must add to this. I wish I lived closer . Your dad always seemed to appreciate and admire the talents of all around him. He was as proud of the silly plays you and Megan made up as he was of the way you and Chris excelled in school grades. Yes…it is with a tear in my eye that I would love to clink glasses with him and enjoy the sweet taste of that whisky ad hear that deep laugh.
I feel, have felt, this.
I have had two parents who had dementia in their final years, one beloved younger person with schizophrenia seeing and feeling things in her own way, and one very neurological different grandchild. Then, of course, we have our babies before they can express themselves in the ways we later come to do and the animals in our lives with their own umwelten and ways of conveying what is going on with them.
We find, don't we, that can communicate across these differences, learning to listen with our different senses and to feel our way together in the moment and over time. I have never felt an impossible gulf.
I suspect we are all, always, unknowable to each other. What it sounds like your dad isn't any longer is predictable, a reliable and consistent iteration of a known and depended upon self. And that is as deeply unsettling as it ever is, when you never know who you will encounter when you encounter someone. Especially if your self is understood in relationship to their self.
It sounds like your dad's fluidity is calling for some fluidity in you. Some willingness to rise up, open-handed and curious and loving, in every moment. That is shockingly hard. Sending you love.
My father passed away about seven years ago, ten years after his dementia diagnosis. I felt like I got to know other sides of him during that time, and it was, sometimes, quite beautiful, other times profoundly challenging. This way of seeing it, in the context of regular unknowability, is so helpful - and comforting. Thank you.
I don’t think I can fully capture how profoundly moving piece is. It so beautifully captures the dignity and profound spirituality of accompanying someone through dementia. What a gift.
I’ve recently turned toward the Christian tradition of welcoming the stranger as a way of understanding family. When I gather at the table with my husband and 4-year-old, we are welcoming one another as strangers, because we are still learning what stories are contained in each body, how those stories are arranged, and how each moment intersects with those stories. Your piece so beautifully expressed this dynamic in a way that makes room for the undeciphered stories that move leaps of poetry rather than logic.
When we were 33 years old, my husband then was diagnosed with brain cancer in his left parietal lobe. My mom's survival of stage-four ovarian cancer helped us face the unknowable. Fast forward 20 years and my mom's early stages of dementia mimicked Scott's -- I knew it was a "brain thing" when her vision that her brain registered didn't match her 20/20 eyesight, like ignoring objects right in front of her. My brain had to register what was happening and how I was going to survive as a caregiver (daughter, wife, mother). A neuropsychologist talked with us in 1998 how ironic but a gift it can be for the brain to contemplate it's own challenges. My mom's brilliant brain recognized and advocated for her own symptoms, asking questions of the specialists my dad and I would not have thought of. I think one of my biggest lessons is how the soul/heart seems separate yet inextricably linked to this body/brain of ours. Paradox was so very present through it all! My own brain/heart/soul decided to "grieve as I go" and take lots of notes! Thank you for sharing your journey with your dad and family so eloquently. Much love to you!
This is so beautiful. As one whose mom experienced Alzheimer's 30 years ago, I so appreciate the ongoing evolution of language and thought around how we understand and relate to dementia. A preacher / mentor in this area once said that at the core of relationships we experience laughter, pleasure, joy and love. We are called to be inclusive and present. All of this possible regardless of how much one remembers or can articulate. Thanks for sharing your ongoing journey with such grace.
Such a beautiful and thoughtful moment, thank you for sharing this.
I am left contemplating how we are (how I have been) taught to language all sorts of things, conditions, people....I will be carrying that question with me for a long time, and thank you for that gentle insight, too.
No words, Courtney. Just tears. ❤️
“Temporarily able brained,” that is a good way to be aware of what we are. Temporarily able brain/bodied. Having kids made me realize how we all go and will go through phases of abled-ness: I’m suddenly personally grateful for curb cuts and voice to text, need an extra hand or extra arms, need significant family sick time, need extra caring folks around me, my partner, and my kids. Thanks for helping express it is much the same for our minds. And I loved the anecdotes about your older brother lithely jumping away from the waves and your father seizing the whiskey cup that you offered him to cheers and saying delicious. Sounds like he has a core sweetness.
Hey Courtney. I love this newsletter very much. You give me much to think about and I’m so very grateful for that.
It is a challenging but also beautiful time for you and your Dad right now. Bittersweet. Thanks for sharing your experience. This is something I may well have to navigate in the future so it’s very helpful.
There is a wonderful person on insta who posts a tonne of helpful stuff for carers and family members navigating dementia. I thought you and your family might find some helpful strategies for meals, showering and general day to day things that people with dementia find confusing. Belightcare:
https://www.instagram.com/belightcare?igsh=MW9kdnU4bmFiODNjcA==
Sending you my love and gratitude from Millowl (Phillip Island), Australia x
Thank you Courtney. So much tenderness in your writing. I feel called to pause after reading it, over and over. I feel so moved, sort of like I am inside a poem about a love encounter with an old soul in a new form. Your openness to be surprised, to be led in the moment by whatever your dad is able to offer, or comes through him, touches me deeply. I had the honor of knowing him in his prior selves and witness his immense love of you and Chris. No doubt his love accompanies you as you bring presence to the mysteries of this moment. Love you.
Courtney, thank you so much for writing about this experience and sharing it with us. Your work is such good company to me as I navigate Alzheimer's with my own dad. You are helping me (and all of us) expand our curiosity, expand our compassion, and I am deeply grateful for that. I have a piece inside of me that needs to come out about this, and your work continues to remind me that this story is worth telling. Thank you!
Courtney. Every time you write about this journey my heart literally feels it. I listened your beautiful podcast while I was hiking the incline ( you know one cannot breathe when doing that crazy adventure in your home turf) and tears just rolled down my eyes in the beautiful blue skies of Colorado. Thank you Courtney ♥️
My sibs and I (5 of us) are navigating our dad's and mom's cognitive changes that have come with dementia. It is heart-wrenching, frustrating, sweet and painful. There are days we have to remember we can't negotiate with them. And days when we have to let go of what was- and meet them where they are at. Thank you, Courtney, for sharing your journey.
I can only repeat how profoundly I identify with Courtney's experiences with Ron because of having intimate members of my family in this condition. My heart goes out to you. I only wish that I could offer help or at least the ability to express my feelings as eloquently. DD
I must add to this. I wish I lived closer . Your dad always seemed to appreciate and admire the talents of all around him. He was as proud of the silly plays you and Megan made up as he was of the way you and Chris excelled in school grades. Yes…it is with a tear in my eye that I would love to clink glasses with him and enjoy the sweet taste of that whisky ad hear that deep laugh.