I have a very specific death plan, providing it’s not sudden, although that would be my preference. If I meet criteria, I will use MAID, since each state’s criteria is different. Otherwise, I will be in my happy room, with my immediate family present. I have been making a Pandora play list for a long time of all the music I love. My daughter knows what food I want to eat, if I’m able to swallow. We will laugh and party with good food and listen to music. My “memorial” while I’m alive. We’ll tell funny stories, share memories and drink wine or other alcohol that I cannot have now. I also have written in my living will to be as pain free as possible. This will likely necessitate hospice nurses who are amazing with medications. I already had a near death experience, so I have no fear of death at all. It will just be my last party, but I won’t be doing any cooking, just enjoying the company.
That pre-death party sounds right up my alley. Thank you for sharing your plans. I think anyone who peruses the comments will come away with an idea or a morsel of what their death could look like.
I have a secret stash that I contribute to anytime I get leftover narcotics or pain pills. It is tucked away in my make up bag so that I have it even when I’m traveling. My friends and I used to joke about this, but it’s no joke to me. I’m dead serious (ha). I will go out on my own terms and not on anyone else’s. When my quality of life has diminished, it will be time to go. We do this for our pets and yet as humans, we are denied this kindness.
The pets line hits every single time. There is something deeply broken about the way we treat human dying versus animal dying.
Since you're taking this seriously — and I hear that you are — I'd love for you to look into New Jersey's Medical Aid in Dying law if you haven't already. Maybe your state has one, too. Doing it legally and fully supported makes all the difference. You deserve that option done safely and on your terms.
Great post! I have plans written and some not written. I think MAID is a great thing but not sure my state allows it. I’ve researched it some and I believe it’s still difficult and not without legal complications in the US. After reading the book In Bloom, my best friend and I promised if faced with dementia we’d go to Dignitas in Europe. Having set plans for the end of life is an important thing we need to do now before the time is here.
I looked up Dignitas. What a perfect avenue if you need it, and Dignitas with your best friend — there's something almost poetic about that pact. Dark and loving at the same time.
And yes, MAID varies so much by state — New Jersey is one of the more accessible ones which is part of why I included it. The paperwork is real but so is the peace of mind.
Thank you for reading and for thinking about this stuff before you have to.
I really had to think about this one! I can totally see what you are saying here, but at seventy-four years old, I can see clearly now (just not physically). Every single time I have discussed my "wishes" with my husband, I have felt guilty...as if I'm making something harder for him. In truth, my real wish (illegal) would be to just be buried casket-less in the ground and have an oak tree planted right on top of me. Next time I have a conversation about this, I'm going to remember your words.
An oak tree. What a beautiful image. That's not a death wish — that's a life philosophy.
The fact that you know exactly what you want and still feel guilty for saying it out loud to your husband — that summarizes my whole essay right there.
I hope you have that conversation again soon. Your wishes matter. All of them, oak tree included.
My mom was a good girl. So was my paternal aunt and grandma. I saw how vexed they were and dropped the good girl act after college. I certainly felt guilty and tried really hard in the moments I could give, but tried really hard to section away good girl times from the world and dive into the solitude where honest girl lives. That's why I have 4 shelves of handwritten diaries. It wasn't easy. They all looked down upon me as I stopped trying early on to win their approval. I loved them but I didn't let it kill me. When I got cancer, my dead brother came through and said, "This isn't what you think. It's not the beginning of the end. It's a wake-up call." That was 16 years ago. I saw how much more I needed to claim and when I was strong I could carve it for myself, but when the needs of others were more obsessive and trying because of their own fears and unconsciousness, I gave in and then collapsed into quiet binging on the tube or reading in bed. Now, through a medium, I hear their applause at what I learned from going in my own direction, and tell me I'm freeing them from their lives in which they felt restrained and unappreciated. No one back then told them they had choices. I was told as a child, I did have choices. I was listening.
I love that you are going where you are going and taking us all with you. You are a brave sojourner with eloquence as you dig it all up and lay it all out so beautifully. I love the picture. I will print and put on my collage wall across from me to remind me the end can be absolutely beautiful and I can be at choice about that too.
Wow! Your brother showing up to tell you it was a wake-up call ...how very cool. What a gift that was, even in the middle of something so frightening.
And the collage wall. I love that the picture found a home there. That's exactly where I hoped it would land--across from someone who knows what it means to choose her own direction.
Thank you for being here, consistently, all the way through.
Having watched my dad die, and my mom wither from dementia for 2 years, I have given this a lot of thought too. Rich doesn't want to smother me with a pillow (I asked), so I suggested an insulin overdose as an alternative. My family knows that when they have to clean my hiney, it's time for me to go. I just need to put it in writing. I want to go on my terms, and with a sense of humor.
The hiney. You got me good with that! You will lose continence, especially if you live to a ripe old age. The muscles and inner arts age. Nothing we can do about the dignities we lose.
We are a fun group here in the comments, sharing ways for a speedy exit, except you have to be really careful with these methods which don't always work like we think they should. Do your paperwork! There is tons of info online for how to structure or see an estate planning lawyer.
Such a great post, Ilona. I'm sure not an easy one to write. Or maybe with all the self-reflection and self-awareness you have, maybe it wasn't hard at all.
I'm in the thinking of death space, too. I've always been of that ilk, but especially since I lost my folks about 7 years ago, taking that journey with them really gave me pause to consider my own journey and to ask important questions of myself. And be in conversation with my husband.
I don't want to be a burden if I can avoid that. And I've put my wishes down in writing through all the forms, etc. It's a lot. It's not fun. It is necessary.
Paulette, thank you for the restack — that means so much ❤️
And to answer your question honestly — it was both. Some of it poured out, and some of it I had to sit with for a long time before I could say it right.
"It's a lot. It's not fun. It is necessary." You just wrote the tagline for the entire advance directive process. No one enjoys doing this paperwork (I don't think) , but the alternative is leaving the people we love to guess. And we've both know what that costs.
The fact that you're in conversation with your husband about it is so important. That's the work.
My ideal death would be at home, in my sleep. I can’t decide if I want to know if it is coming. The good girl in me would want my family to be prepared for it though.
Your vision of death is my idea of heaven. I’m fortunate that I live that most days sans the French doors.
Donna, "sans the French doors" made me smile. French words are absolutement welcome here! You are already living the dream and you know it.
I love that you can't decide whether you want to know it's coming. That's such an honest place to sit with. There's something to be said for both the prepared goodbye and the quiet slip into sleep.
I notice even in your ideal death, the good girl showed up wanting to prepare her family. She really doesn't take a day off does she?
So well said. We can’t seem to help ourselves regarding the “good girl” role, even when death is at our door. Your questions at the end of this piece are the ones we all should be asking.
"Even when death is at our door." This is a great image and you said it perfectly. The conditioning runs so deep it follows us all the way to the very end. Most of us don't even notice until someone names it out loud. Thank you for being here and for asking the questions with me.
This blew my mind as if I wrote most of it myself.
I first took ill in my 30s. Yet I still raised two girls alone, looked after my mother, and for the last three years been my brother's caretaker. All while seeing myself shrink knowing my own time is limited.
Yes, the good girl, who just wants not to be responsible for everything. Im exhausted and am beginning palliative care.
Still gotta get my brother 1500 miles back "home" to family because there's nobody here to care for him when I pass. Still taking care of and feeling guilty for wanting time and maybe someone to care for me.
I think about death all the time. Maybe it’s just a condition of being a poet. Or at least seeing things poetically. Sometimes I have bad moments and I stay to myself. OK deathbed check. What will you look back and want to remember? And then I calm down. I’m just normally so anxious all the time that I have to to be conscious to be not anxious.
My death? Just has to be surrounded by my family. And to see that there is a deep forgiveness and connection and love between all of them. And I really want
my husband to die at the same time as me because we are like two trees that were grown together into the trees one tree. Our lives are so interconnected and intertwined. It is hard to explain to a western world what it is like to be part of such a union.
The deathbed check. I love this! Using the imagined end as a way to calibrate the present moment. So much wisdom there. Poets have always known what the rest of us take decades to figure out.
And two trees grown into one. I don't think that needs a western translation at all. Anyone who has ever loved someone that completely knows exactly what you mean — the idea that leaving separately would be a kind of amputation.
Thank you for sharing your death with us. It is such a beautiful share.
Ilona, thank you for this. It’s an eye opener and I never thought HOW I want my death to look like (I love yours…can I copy you? 😉). Just that I know I do not want to suffer like my husband did. I have not had the chance to see your Substack live but I plan to and look forward to it. I have some decisions to make. Wow. Again thank you.
That was so thought probing for me that it will take a bit before I can respond! So much to unpack here, Ilona...I'll swing back by!
I will be here!
I have a very specific death plan, providing it’s not sudden, although that would be my preference. If I meet criteria, I will use MAID, since each state’s criteria is different. Otherwise, I will be in my happy room, with my immediate family present. I have been making a Pandora play list for a long time of all the music I love. My daughter knows what food I want to eat, if I’m able to swallow. We will laugh and party with good food and listen to music. My “memorial” while I’m alive. We’ll tell funny stories, share memories and drink wine or other alcohol that I cannot have now. I also have written in my living will to be as pain free as possible. This will likely necessitate hospice nurses who are amazing with medications. I already had a near death experience, so I have no fear of death at all. It will just be my last party, but I won’t be doing any cooking, just enjoying the company.
That pre-death party sounds right up my alley. Thank you for sharing your plans. I think anyone who peruses the comments will come away with an idea or a morsel of what their death could look like.
I have a secret stash that I contribute to anytime I get leftover narcotics or pain pills. It is tucked away in my make up bag so that I have it even when I’m traveling. My friends and I used to joke about this, but it’s no joke to me. I’m dead serious (ha). I will go out on my own terms and not on anyone else’s. When my quality of life has diminished, it will be time to go. We do this for our pets and yet as humans, we are denied this kindness.
The pets line hits every single time. There is something deeply broken about the way we treat human dying versus animal dying.
Since you're taking this seriously — and I hear that you are — I'd love for you to look into New Jersey's Medical Aid in Dying law if you haven't already. Maybe your state has one, too. Doing it legally and fully supported makes all the difference. You deserve that option done safely and on your terms.
Great post! I have plans written and some not written. I think MAID is a great thing but not sure my state allows it. I’ve researched it some and I believe it’s still difficult and not without legal complications in the US. After reading the book In Bloom, my best friend and I promised if faced with dementia we’d go to Dignitas in Europe. Having set plans for the end of life is an important thing we need to do now before the time is here.
I looked up Dignitas. What a perfect avenue if you need it, and Dignitas with your best friend — there's something almost poetic about that pact. Dark and loving at the same time.
And yes, MAID varies so much by state — New Jersey is one of the more accessible ones which is part of why I included it. The paperwork is real but so is the peace of mind.
Thank you for reading and for thinking about this stuff before you have to.
I really had to think about this one! I can totally see what you are saying here, but at seventy-four years old, I can see clearly now (just not physically). Every single time I have discussed my "wishes" with my husband, I have felt guilty...as if I'm making something harder for him. In truth, my real wish (illegal) would be to just be buried casket-less in the ground and have an oak tree planted right on top of me. Next time I have a conversation about this, I'm going to remember your words.
An oak tree. What a beautiful image. That's not a death wish — that's a life philosophy.
The fact that you know exactly what you want and still feel guilty for saying it out loud to your husband — that summarizes my whole essay right there.
I hope you have that conversation again soon. Your wishes matter. All of them, oak tree included.
I'm so glad you're here.💕
Thanks, Ilona. I'm glad you're here too! ♥️
My mom was a good girl. So was my paternal aunt and grandma. I saw how vexed they were and dropped the good girl act after college. I certainly felt guilty and tried really hard in the moments I could give, but tried really hard to section away good girl times from the world and dive into the solitude where honest girl lives. That's why I have 4 shelves of handwritten diaries. It wasn't easy. They all looked down upon me as I stopped trying early on to win their approval. I loved them but I didn't let it kill me. When I got cancer, my dead brother came through and said, "This isn't what you think. It's not the beginning of the end. It's a wake-up call." That was 16 years ago. I saw how much more I needed to claim and when I was strong I could carve it for myself, but when the needs of others were more obsessive and trying because of their own fears and unconsciousness, I gave in and then collapsed into quiet binging on the tube or reading in bed. Now, through a medium, I hear their applause at what I learned from going in my own direction, and tell me I'm freeing them from their lives in which they felt restrained and unappreciated. No one back then told them they had choices. I was told as a child, I did have choices. I was listening.
I love that you are going where you are going and taking us all with you. You are a brave sojourner with eloquence as you dig it all up and lay it all out so beautifully. I love the picture. I will print and put on my collage wall across from me to remind me the end can be absolutely beautiful and I can be at choice about that too.
Wow! Your brother showing up to tell you it was a wake-up call ...how very cool. What a gift that was, even in the middle of something so frightening.
And the collage wall. I love that the picture found a home there. That's exactly where I hoped it would land--across from someone who knows what it means to choose her own direction.
Thank you for being here, consistently, all the way through.
Having watched my dad die, and my mom wither from dementia for 2 years, I have given this a lot of thought too. Rich doesn't want to smother me with a pillow (I asked), so I suggested an insulin overdose as an alternative. My family knows that when they have to clean my hiney, it's time for me to go. I just need to put it in writing. I want to go on my terms, and with a sense of humor.
The hiney. You got me good with that! You will lose continence, especially if you live to a ripe old age. The muscles and inner arts age. Nothing we can do about the dignities we lose.
We are a fun group here in the comments, sharing ways for a speedy exit, except you have to be really careful with these methods which don't always work like we think they should. Do your paperwork! There is tons of info online for how to structure or see an estate planning lawyer.
Such a great post, Ilona. I'm sure not an easy one to write. Or maybe with all the self-reflection and self-awareness you have, maybe it wasn't hard at all.
I'm in the thinking of death space, too. I've always been of that ilk, but especially since I lost my folks about 7 years ago, taking that journey with them really gave me pause to consider my own journey and to ask important questions of myself. And be in conversation with my husband.
I don't want to be a burden if I can avoid that. And I've put my wishes down in writing through all the forms, etc. It's a lot. It's not fun. It is necessary.
Paulette, thank you for the restack — that means so much ❤️
And to answer your question honestly — it was both. Some of it poured out, and some of it I had to sit with for a long time before I could say it right.
"It's a lot. It's not fun. It is necessary." You just wrote the tagline for the entire advance directive process. No one enjoys doing this paperwork (I don't think) , but the alternative is leaving the people we love to guess. And we've both know what that costs.
The fact that you're in conversation with your husband about it is so important. That's the work.
It is a good tagline-who knew?!
Yes, there’s a sense of relief in the conversations and the actual work.
My ideal death would be at home, in my sleep. I can’t decide if I want to know if it is coming. The good girl in me would want my family to be prepared for it though.
Your vision of death is my idea of heaven. I’m fortunate that I live that most days sans the French doors.
Donna, "sans the French doors" made me smile. French words are absolutement welcome here! You are already living the dream and you know it.
I love that you can't decide whether you want to know it's coming. That's such an honest place to sit with. There's something to be said for both the prepared goodbye and the quiet slip into sleep.
I notice even in your ideal death, the good girl showed up wanting to prepare her family. She really doesn't take a day off does she?
My early education was with the Sisters of Notre Dame and I took French all through public school. Keep meaning to pick it up again.
So well said. We can’t seem to help ourselves regarding the “good girl” role, even when death is at our door. Your questions at the end of this piece are the ones we all should be asking.
"Even when death is at our door." This is a great image and you said it perfectly. The conditioning runs so deep it follows us all the way to the very end. Most of us don't even notice until someone names it out loud. Thank you for being here and for asking the questions with me.
This blew my mind as if I wrote most of it myself.
I first took ill in my 30s. Yet I still raised two girls alone, looked after my mother, and for the last three years been my brother's caretaker. All while seeing myself shrink knowing my own time is limited.
Yes, the good girl, who just wants not to be responsible for everything. Im exhausted and am beginning palliative care.
Still gotta get my brother 1500 miles back "home" to family because there's nobody here to care for him when I pass. Still taking care of and feeling guilty for wanting time and maybe someone to care for me.
Debra, I sent you a DM. 💙
I think about death all the time. Maybe it’s just a condition of being a poet. Or at least seeing things poetically. Sometimes I have bad moments and I stay to myself. OK deathbed check. What will you look back and want to remember? And then I calm down. I’m just normally so anxious all the time that I have to to be conscious to be not anxious.
My death? Just has to be surrounded by my family. And to see that there is a deep forgiveness and connection and love between all of them. And I really want
my husband to die at the same time as me because we are like two trees that were grown together into the trees one tree. Our lives are so interconnected and intertwined. It is hard to explain to a western world what it is like to be part of such a union.
The deathbed check. I love this! Using the imagined end as a way to calibrate the present moment. So much wisdom there. Poets have always known what the rest of us take decades to figure out.
And two trees grown into one. I don't think that needs a western translation at all. Anyone who has ever loved someone that completely knows exactly what you mean — the idea that leaving separately would be a kind of amputation.
Thank you for sharing your death with us. It is such a beautiful share.
Ilona, thank you for this. It’s an eye opener and I never thought HOW I want my death to look like (I love yours…can I copy you? 😉). Just that I know I do not want to suffer like my husband did. I have not had the chance to see your Substack live but I plan to and look forward to it. I have some decisions to make. Wow. Again thank you.