I am so sorry. I just spent the weekend, visiting my parents. My dad has Parkinson's and my mother Alzheimer's. Each day is new with them in so many ways. I'm sending you loving thoughts today.
Beautifully said and a quiet testament to the one you love. I recently wrote about finding out I have the worst possible genetic combo for Alzheimer's and how it's now a constant stalker I have to live with, so I appreciate your perspective. Thank you for humanizing the dementia story.
Oh wow, that's a difficult reality to face. Parkinson's doesn't have a genetic component most of the time, but dementia usually does--and both of my husband's parents (as well as two of his grandparents) have struggled with it. We're pretty sure that explains, to some degree, why dementia has been an earlier-than-usual symptom of Parkinson's for him.
This was so informative and moving, thank you for sharing from the thick of things. My grandparents all (for one) had dementia and learning how to understand what gave them comfort vs. what comforted me (why don’t they remember X or Y or me sometimes?) was a big learning curve. And now, many of my friends are facing dementia diagnoses for their parents. I’ll be sure to share your Substack with them as a support resource.
It makes sense that if we have loved people in their particularity, our grief bears the stamp of the actual losses that come with the disease. Each grief has its own terrain. We have engaged four parents with dementia over the past couple of years and each was so different. One became unable to focus and engage another on almost any level. Another became utterly focused and obsessed with what would have been small matters. "You going to trim my nails," repeated until we did it. One awoke at all hours of the night and made phone calls; another one sleeps day and night. Each one as unique in that time as they had been throughout life.
Parkinson's is often referred to as a "boutique" disease, meaning it's different for every patient--but I've often wondered if that's not true of every illness. Bodies (and the beings who inhabit them) are unique, so why not sickness as well?
Would that it would be so easy to have a checklist, eh? Mom is a moving target, never the same from week to week. Everytime we think, so this is the new normal, it changes, backtracks, advances, goes sideways. Today she spoke in full sentences. Two days ago, whispers and gibberish. If nothing else, caring for someone with dementia teaches you HOW to stay in the moment, their moment, not yours.
You had me at: "what a dementia patient will lose shows up in direct relation to what that person had to begin with—that catalog of unique little bits and pieces, habits and preferences and abilities, that makes each of us precisely who we are."
I am wondering how you consider audience as you write. Who? What? When? Where? This is because I suspect that this book will help so many people, which makes me wonder how they factor into your process. No need to respond. Sending love,
I assume anyone who reads my work is already interested in caregiving, for one reason or another--and that frees me up, in many ways, because I'm not worried about trying to make the subject interesting. I'm just here to tell the truth. It's a very different approach to audience than I've ever taken before.
I am so sorry. I just spent the weekend, visiting my parents. My dad has Parkinson's and my mother Alzheimer's. Each day is new with them in so many ways. I'm sending you loving thoughts today.
Such a terrific piece on such a critical topic.
Beautifully said and a quiet testament to the one you love. I recently wrote about finding out I have the worst possible genetic combo for Alzheimer's and how it's now a constant stalker I have to live with, so I appreciate your perspective. Thank you for humanizing the dementia story.
Oh wow, that's a difficult reality to face. Parkinson's doesn't have a genetic component most of the time, but dementia usually does--and both of my husband's parents (as well as two of his grandparents) have struggled with it. We're pretty sure that explains, to some degree, why dementia has been an earlier-than-usual symptom of Parkinson's for him.
This was so informative and moving, thank you for sharing from the thick of things. My grandparents all (for one) had dementia and learning how to understand what gave them comfort vs. what comforted me (why don’t they remember X or Y or me sometimes?) was a big learning curve. And now, many of my friends are facing dementia diagnoses for their parents. I’ll be sure to share your Substack with them as a support resource.
It makes sense that if we have loved people in their particularity, our grief bears the stamp of the actual losses that come with the disease. Each grief has its own terrain. We have engaged four parents with dementia over the past couple of years and each was so different. One became unable to focus and engage another on almost any level. Another became utterly focused and obsessed with what would have been small matters. "You going to trim my nails," repeated until we did it. One awoke at all hours of the night and made phone calls; another one sleeps day and night. Each one as unique in that time as they had been throughout life.
Parkinson's is often referred to as a "boutique" disease, meaning it's different for every patient--but I've often wondered if that's not true of every illness. Bodies (and the beings who inhabit them) are unique, so why not sickness as well?
Would that it would be so easy to have a checklist, eh? Mom is a moving target, never the same from week to week. Everytime we think, so this is the new normal, it changes, backtracks, advances, goes sideways. Today she spoke in full sentences. Two days ago, whispers and gibberish. If nothing else, caring for someone with dementia teaches you HOW to stay in the moment, their moment, not yours.
You had me at: "what a dementia patient will lose shows up in direct relation to what that person had to begin with—that catalog of unique little bits and pieces, habits and preferences and abilities, that makes each of us precisely who we are."
I am wondering how you consider audience as you write. Who? What? When? Where? This is because I suspect that this book will help so many people, which makes me wonder how they factor into your process. No need to respond. Sending love,
I assume anyone who reads my work is already interested in caregiving, for one reason or another--and that frees me up, in many ways, because I'm not worried about trying to make the subject interesting. I'm just here to tell the truth. It's a very different approach to audience than I've ever taken before.