Thanks so much for this and your perspective on the letters. Davd COrey rocks it, sure. I am someone who watched my uncle and my mother suffer ( in order of appearance) Lewy Body Disease and Dementia, which never needed or got a closer diagnosis.
I was with my uncle when he was still cognizant of most things, and our visit to a neurosurgeon a certain time will always be remembered. I could see myself in uncle Gary's place as the surgeon said, "You definitely have Lewy Body Disease. There is nothing we can do outside of the drug therapy (Cinamet) you are already on, and certain vitamins... You will get worse and worse, then one day it will kill you."
Gary did not respond. Later, as we left the office, he said "I don't LIKE this!" And it was the single time he complained of his predicament. I drove him up into the Santa Barbara hills where he had created so much art. We looked down on the beautiful harbor and the town and we tried to talk it over but we both cried like babies, then we went and got dinner. I was in the position of primary caregiver who works full time. My job suffered immensely.
What I hated were the lifelong friends who, calling to see how it was going, would ask me a series of questions. I would say, "You need to see him. Come on over at x o'clock..."
Or whatever.
And invariably some would say. " No, I want to remember him how he was..." Which sentiment I despised and did not respect. His true friends loved him and suffered to see him to the end.
And that is my plea. Don't ignore the dementia sufferers. If you need to cry, cry, but visit. If you can't deal you might want to look at that. Before it is your turn?
I remember when you told me about that crying session after the actual diagnosis. And my father was stoic until his death throes. A year or so later, when I asked him if he was afraid of dying he answered, in typical understated fashion, "It does cross my mind occasionally".
I missed that initial descent, as I selfishly, because of love, and stubbornly, because my daughter was finishing her last year of High School, rationalized that I couldn't uproot my East Coast life to become care-giver for my father, not just yet. And how I regret not dropping everything to go West and do just that, because by the time I got here, so much of who he was, was already gone. Thank you, Jack, for being there for him when you were, it must have helped him greatly to have your specifically male support and sympathy. Gary was not one to complain, and he always wanted to shield me from any pain, so your presence was just perfect. I'm sorry to read that your job suffered, but, of course it did.
There were funny, strange and up-until-then-I've-never-experienced-anything-like-this moments, but honestly, witnessing a person whom I ADORED disappear while suffering that disease, was excruciating. Aside from occasional moments of lucidity giving glimpses of the old version of my father, it was like watching him roll backwards down the longest hallway ever. For me it was, as Daniel Weile wrote mostly "a meaningless disaster".
Oh, how I love this collection of voices and emotions. I recall so many highs and lows during my time as my mom's caretaker...
Once, when I hadn't seen my mom in a few days, I called and she sounded so happy--she announced she'd gotten married to someone in her memory care facility...he was "a new guy, you haven't met him."
When I saw her the next day, she made no reference to the big event and when I asked if she'd made any new friends she snorted with derision and said "fat chance of that here."
Thank you for reproducing these letters, and for your thoughts. I certainly learned a lot about love and resilience during my course of my parents’ dementia, but I would never, ever wish the reason for my learning on anyone
For the reasons you've highlighted, I've wanted to curate a dynamic hub, an anthology of dementia experiences - each personal experience is unique, whether it's from a caregiver's perspective or the person with dementia. By sharing, we can pass on tips, insights and offer support and empathy to those spinning around the rollercoaster. Caregiving is both lonely and paradoxical in its emotional complexity.
There are no definitive answers, nor one singular right or wrong way, because it's all so perfectly imperfect and human. I want caregivers - unpaid carers, as we're called here in the UK - not to feel alone, in the 'long goodbye' of it all. There is so much diversity and nuance to dementia, because that's how humans are. Add in family histrionics and baggage and it gets very messy - life IS complex, especially as we're all living longer.
So I'm very much in agreement with your perspective. Have a look around Carer Mentor if you have a little time, especially the Dementia Anthology. best wishes.
Thanks so much for this and your perspective on the letters. Davd COrey rocks it, sure. I am someone who watched my uncle and my mother suffer ( in order of appearance) Lewy Body Disease and Dementia, which never needed or got a closer diagnosis.
I was with my uncle when he was still cognizant of most things, and our visit to a neurosurgeon a certain time will always be remembered. I could see myself in uncle Gary's place as the surgeon said, "You definitely have Lewy Body Disease. There is nothing we can do outside of the drug therapy (Cinamet) you are already on, and certain vitamins... You will get worse and worse, then one day it will kill you."
Gary did not respond. Later, as we left the office, he said "I don't LIKE this!" And it was the single time he complained of his predicament. I drove him up into the Santa Barbara hills where he had created so much art. We looked down on the beautiful harbor and the town and we tried to talk it over but we both cried like babies, then we went and got dinner. I was in the position of primary caregiver who works full time. My job suffered immensely.
What I hated were the lifelong friends who, calling to see how it was going, would ask me a series of questions. I would say, "You need to see him. Come on over at x o'clock..."
Or whatever.
And invariably some would say. " No, I want to remember him how he was..." Which sentiment I despised and did not respect. His true friends loved him and suffered to see him to the end.
And that is my plea. Don't ignore the dementia sufferers. If you need to cry, cry, but visit. If you can't deal you might want to look at that. Before it is your turn?
I remember when you told me about that crying session after the actual diagnosis. And my father was stoic until his death throes. A year or so later, when I asked him if he was afraid of dying he answered, in typical understated fashion, "It does cross my mind occasionally".
I missed that initial descent, as I selfishly, because of love, and stubbornly, because my daughter was finishing her last year of High School, rationalized that I couldn't uproot my East Coast life to become care-giver for my father, not just yet. And how I regret not dropping everything to go West and do just that, because by the time I got here, so much of who he was, was already gone. Thank you, Jack, for being there for him when you were, it must have helped him greatly to have your specifically male support and sympathy. Gary was not one to complain, and he always wanted to shield me from any pain, so your presence was just perfect. I'm sorry to read that your job suffered, but, of course it did.
There were funny, strange and up-until-then-I've-never-experienced-anything-like-this moments, but honestly, witnessing a person whom I ADORED disappear while suffering that disease, was excruciating. Aside from occasional moments of lucidity giving glimpses of the old version of my father, it was like watching him roll backwards down the longest hallway ever. For me it was, as Daniel Weile wrote mostly "a meaningless disaster".
Yes yes yes!
chef’s kiss, Jack. What you said is perfect.
Oh, how I love this collection of voices and emotions. I recall so many highs and lows during my time as my mom's caretaker...
Once, when I hadn't seen my mom in a few days, I called and she sounded so happy--she announced she'd gotten married to someone in her memory care facility...he was "a new guy, you haven't met him."
When I saw her the next day, she made no reference to the big event and when I asked if she'd made any new friends she snorted with derision and said "fat chance of that here."
Thank you for reproducing these letters, and for your thoughts. I certainly learned a lot about love and resilience during my course of my parents’ dementia, but I would never, ever wish the reason for my learning on anyone
Thank you for sharing these letters, Kirsten.
For the reasons you've highlighted, I've wanted to curate a dynamic hub, an anthology of dementia experiences - each personal experience is unique, whether it's from a caregiver's perspective or the person with dementia. By sharing, we can pass on tips, insights and offer support and empathy to those spinning around the rollercoaster. Caregiving is both lonely and paradoxical in its emotional complexity.
There are no definitive answers, nor one singular right or wrong way, because it's all so perfectly imperfect and human. I want caregivers - unpaid carers, as we're called here in the UK - not to feel alone, in the 'long goodbye' of it all. There is so much diversity and nuance to dementia, because that's how humans are. Add in family histrionics and baggage and it gets very messy - life IS complex, especially as we're all living longer.
So I'm very much in agreement with your perspective. Have a look around Carer Mentor if you have a little time, especially the Dementia Anthology. best wishes.