You've done a good service to your cousin and his family with this essay, and of course also to us Oldster readers in general. Amy Bloom's book "In Love" provides her own story about her beloved husband's decision to access the program in Switzerland. My memoir, just out in April - "I Live You For Ever: Dementia in a Loving Marriage" - illuminates how bad things can get (depending on the types and mix of dementias at work). Having lived through my husband's mixed dementia (vascular, Alzheimer's, and Lewy body) in the caregiving role - I wrote to honor and educate others caught in the snare of spousal dementia.
So young. So brave. Maybe even comforting, in a strange (maybe very strange) way to know the how and when and what of the inevitability we all share. I say this as someone who’s imagined some terrible ways to go, of course. My husband’s mother made the decision to end her life (in the Netherlands) a couple years ago. She was 93 and was no longer able to speak, eat, drink. My husband even sorted out how to work around the rule that she’d have to be in a hospital for the process, by convincing them to bring the hospital bed to her home. I think about it often, how brave she was to drink that last cup of coffee, watch her last bit of news, then walk down the hallway to her bedroom for the last time. 💚 Important essay.
As someone living with a terminal disease (Stage 4 metastatic breast cancer), this piece touched me deeply. I hope I have the bravery needed to do something like this. I'm grateful NY State recently passed the "medical aid in dying" act. But Janet, you described your cousin, your relationship and the facts, so beautifully that I feel as though I know him.
A life of grace from beginning to end—to what more can any of aspire? And I loved that mention of immediate affinity. How that happens and remains is one of life’s sweet mysteries.
Thank you.
Recently I gave a talk to oncology social workers from Australia and New Zealand. Among them were VAD (Voluntary Assisted Death) specialists. That’s all they did.
At first I thought there was something “creepy” about that choice of vocation. Chatting with them afterwards, I’ve never met a more impressive, intelligent, sensitive and thoughtful people—a group with whom I felt an immediate affinity. Australians don’t have to go to Switzerland.
I loved your essay, Janet. I grew up in New York City and moved to California, and was a professor at UC Berkeley, so all the places you mentioned in your piece are part of my internal home. I admire your cousin's decision, and I'm glad he has such a supportive group of friends and family to help.
Perhaps many of us like to think that we could claim this option, if required.
But sitting with these realities: the timing, complex arrangements, notifications, good byes, That Final Day; that’s pretty overwhelming.
A lot to think about.
It seems like that option requires 1. substantial family 2. extensive friend network 3. significant financial resources.
It just doesn’t seem realistic or even available for those not so endowed. Peaceful death still seems to come at a price.
I appreciate this peek into that process and want to thank all involved in having access to this profound essay. Whew. Heart goes out to all the bravery expressed here.
I'm a doctor in round-the-clock elder care. You wrote about imagining yourself sitting across a desk, hearing those words. I sit on the other side of it. The side that has to say them: you will think you're fine, but you're not.
My patients ask me the question your cousin answered for himself. Here in Finland there is no answer to give them. Almost none of them have what he had: a clear mind, the means, people in the room. The ones who ask me for a way out are usually the ones whose phone never rings.
Your cousin got to choose, awake and loved. In this work that is the rarest thing I see.
The second anniversary of my husband’s death was a few days ago. Like the author’s cousin, he chose assisted dying in Switzerland after having been diagnosed with early onset Alzheimer’s disease, aphasia, and frontotemporal dementia. He was fit, healthy, and 60 years old when he received his diagnosis. We spent the last ten months of his life visiting family and friends, living life to the fullest, and doing the activities we loved most. Friends and family supported us and his decision to die peacefully and with dignity.
I am forever grateful that we had support and resources, both financial and emotional, to undertake this journey. Now that more states are legalizing medical assisted dying, we need to advocate for inclusion of people whose diagnoses include illness with cognitive decline such as Alzheimer’s or other dementias. As it stands now, the only option for those patients who wish to peacefully die is to travel to Switzerland which, unfortunately, is out of reach for many.
Thank you for sharing such an intimate story— yours & his. This story seems to me a testament to the healthy relationships with each other that people in this family had, & also a testament to this family’s lack of trauma around past deaths. Choosing death when one is lucid (after a terminal diagnosis, I mean) can still be very painful in other cases. Also, I wish laws allowed someone to take the final step in this “assisted suicide” path AFTER they lost their ability to be fully lucid. Forcing them to end it while they’re still fully lucid can feel unfair to the people choosing to end their life— & to the close family. (I’m thinking of my mom & the moms of two friends.) Thank you again for sharing this story and prompting thoughtful conversations. 💛
Oh man, this one has me in tears. I have nine cousins who saved my life during my childhood. They gave me crazy fun and a shared love like no other relationship I've ever known. Having them in my life saved me from a horrible childhood and we are still so close now in our 50s and 60s. Most of the laughter Ive known in my life came from these people. Ive never thought about losing them but this essay made it very real. And I too have thought about assisted suicide if the situation arise, but I had never thought of it in this context with dementia. Going out on you own terms is beautiful, but would have to be so hard leaving behind the living. Thank for this piece. 🌺
Thank you for this deeply-felt essay. I wonder if you know the novelist Amy Bloom’s memoir of her husband’s journey to Switzerland for the same reason.
You've done a good service to your cousin and his family with this essay, and of course also to us Oldster readers in general. Amy Bloom's book "In Love" provides her own story about her beloved husband's decision to access the program in Switzerland. My memoir, just out in April - "I Live You For Ever: Dementia in a Loving Marriage" - illuminates how bad things can get (depending on the types and mix of dementias at work). Having lived through my husband's mixed dementia (vascular, Alzheimer's, and Lewy body) in the caregiving role - I wrote to honor and educate others caught in the snare of spousal dementia.
So young. So brave. Maybe even comforting, in a strange (maybe very strange) way to know the how and when and what of the inevitability we all share. I say this as someone who’s imagined some terrible ways to go, of course. My husband’s mother made the decision to end her life (in the Netherlands) a couple years ago. She was 93 and was no longer able to speak, eat, drink. My husband even sorted out how to work around the rule that she’d have to be in a hospital for the process, by convincing them to bring the hospital bed to her home. I think about it often, how brave she was to drink that last cup of coffee, watch her last bit of news, then walk down the hallway to her bedroom for the last time. 💚 Important essay.
Oh so very sad. And brave. Reading this brings tears to my eyes.
As someone living with a terminal disease (Stage 4 metastatic breast cancer), this piece touched me deeply. I hope I have the bravery needed to do something like this. I'm grateful NY State recently passed the "medical aid in dying" act. But Janet, you described your cousin, your relationship and the facts, so beautifully that I feel as though I know him.
<3
I send you so much love. None of us is immune.
A life of grace from beginning to end—to what more can any of aspire? And I loved that mention of immediate affinity. How that happens and remains is one of life’s sweet mysteries.
Thank you.
Recently I gave a talk to oncology social workers from Australia and New Zealand. Among them were VAD (Voluntary Assisted Death) specialists. That’s all they did.
At first I thought there was something “creepy” about that choice of vocation. Chatting with them afterwards, I’ve never met a more impressive, intelligent, sensitive and thoughtful people—a group with whom I felt an immediate affinity. Australians don’t have to go to Switzerland.
I don't even know what to say. Profound, important, comforting, in an immediate kind of way. Excellent essay. Thank you for sharing it.
I loved your essay, Janet. I grew up in New York City and moved to California, and was a professor at UC Berkeley, so all the places you mentioned in your piece are part of my internal home. I admire your cousin's decision, and I'm glad he has such a supportive group of friends and family to help.
What a beautiful, poignant piece! Your re-connection with your cousin at this pivotal time was clearly a gift to both of you.
Perhaps many of us like to think that we could claim this option, if required.
But sitting with these realities: the timing, complex arrangements, notifications, good byes, That Final Day; that’s pretty overwhelming.
A lot to think about.
It seems like that option requires 1. substantial family 2. extensive friend network 3. significant financial resources.
It just doesn’t seem realistic or even available for those not so endowed. Peaceful death still seems to come at a price.
I appreciate this peek into that process and want to thank all involved in having access to this profound essay. Whew. Heart goes out to all the bravery expressed here.
What a profound gift he gave you. And what a moving gift you've given us today. Thank you.
This is stunning. Beautiful. And, yes: how we should endeavor to live. Every. Day.
I'm a doctor in round-the-clock elder care. You wrote about imagining yourself sitting across a desk, hearing those words. I sit on the other side of it. The side that has to say them: you will think you're fine, but you're not.
My patients ask me the question your cousin answered for himself. Here in Finland there is no answer to give them. Almost none of them have what he had: a clear mind, the means, people in the room. The ones who ask me for a way out are usually the ones whose phone never rings.
Your cousin got to choose, awake and loved. In this work that is the rarest thing I see.
What important and fascinating work you do. Thanks for chiming in.
Your comments mean so much to me, thank you so very much.
The second anniversary of my husband’s death was a few days ago. Like the author’s cousin, he chose assisted dying in Switzerland after having been diagnosed with early onset Alzheimer’s disease, aphasia, and frontotemporal dementia. He was fit, healthy, and 60 years old when he received his diagnosis. We spent the last ten months of his life visiting family and friends, living life to the fullest, and doing the activities we loved most. Friends and family supported us and his decision to die peacefully and with dignity.
I am forever grateful that we had support and resources, both financial and emotional, to undertake this journey. Now that more states are legalizing medical assisted dying, we need to advocate for inclusion of people whose diagnoses include illness with cognitive decline such as Alzheimer’s or other dementias. As it stands now, the only option for those patients who wish to peacefully die is to travel to Switzerland which, unfortunately, is out of reach for many.
Thank you for sharing such an intimate story— yours & his. This story seems to me a testament to the healthy relationships with each other that people in this family had, & also a testament to this family’s lack of trauma around past deaths. Choosing death when one is lucid (after a terminal diagnosis, I mean) can still be very painful in other cases. Also, I wish laws allowed someone to take the final step in this “assisted suicide” path AFTER they lost their ability to be fully lucid. Forcing them to end it while they’re still fully lucid can feel unfair to the people choosing to end their life— & to the close family. (I’m thinking of my mom & the moms of two friends.) Thank you again for sharing this story and prompting thoughtful conversations. 💛
Oh man, this one has me in tears. I have nine cousins who saved my life during my childhood. They gave me crazy fun and a shared love like no other relationship I've ever known. Having them in my life saved me from a horrible childhood and we are still so close now in our 50s and 60s. Most of the laughter Ive known in my life came from these people. Ive never thought about losing them but this essay made it very real. And I too have thought about assisted suicide if the situation arise, but I had never thought of it in this context with dementia. Going out on you own terms is beautiful, but would have to be so hard leaving behind the living. Thank for this piece. 🌺
Thank you for this deeply-felt essay. I wonder if you know the novelist Amy Bloom’s memoir of her husband’s journey to Switzerland for the same reason.
This is one of the best things I've read on Oldster. Thank you, Janet, for such a beautiful, thoughtful piece v