Thank you for sharing this list of suggestions. Being long-distance from many people I love, sometimes it's hard to know how to show up in tangible ways. Sending DoorDash gift cards or groceries is something I've done on occassion. Another gift anyone can give a grieving person is to not ask for any explanations or details. Like. Ever. Be a listening ear if that's what the person needs but don't pry and prod just so you can have the inside info. Nope. No thanks, keep moving! :)
Wow Anne, when I see a notification you’ve written something knew I look forward to it. You write in such a pleasant way about something absolutely horrendous.
This list of advice you can remove >dying dying husband< and insert so many other things. I’m impressed by your ability to voice what you need in this time. I hope you have this pinned to your front door, posted to your social medias and printed off for those who call by.
I know in my darkest times I found it hard to voice what I needed I was so overwhelmed by the situation. But if people just had this list to hand it’d have applied to me with very little editing.
I would love to pop round and do some washing for you, have a cuppa or do a mini apprenticeship to sit with your husband so you could go to Target and be a normal person.
Instead I’ll send virtual hugs from Spain and enjoy reading your words that are coming from such a sad and shitty situation 💚
I hope you’re managing to find a moment for yourself this weekend, even if it’s only whilst you sip your coffee (or tea or chosen beverage) ☕️ I look forward to your next writing ✍️ your writing is making me feel inspired!
I’m impressed! Anyone with the where for all for morning activities I’m in awe of. I have to lay in bed for the guts of half an hour painfully waking up 😆 mornings are not my productive time x
Masterfully written and spoken. There’s an escalating disagreement going on between two writers on Substack which started with one’s post about being addicted to hate comments. The other writer made a long, well thought out comment with advice for the OP. The OP was triggered by that comment and commented back in a way which made the second writer fee “castigated” for their well meaning and thoughtful advice. I’ve commented on both writer’s posts that it’s not about intentions, it’s about impact. Why is that so hard for people to understand? Forget the Golden Rule, it’s the Platinum Rule: Do unto others as they would have done unto them. My apologies for meandering. Two and a half years after my husband died and a combination of grief brain, menopause and insomnia (probably menopause related) has we rambling on the inter-webs 🤣🥰🤗
I understand you so well. Many, many times I have been devastated by the well meaning words or questions posed by someone else. Their well meaning words made me angry and resentful. Often, I felt judged by them. 'There is something that must be done' sounds almost like you (caregiver) aren't doing enough. This is so horrible. Sending you and Mr. J love. And sending you both strength.
Anne, I'm already a widow, but I identify with so much of this, especially responding to people who ask what they can do and put the burden on us to figure it out. This is all so important I'm going to share it.
Sue, I am so sorry for your loss. It looks like we started Substack around the same time. I look forward to learning from you. thank you for your support.
We all know somebody close to us, going through the same as you. And if not now, then in the future we will.
As a teenager, I saw a lot of grief and pain. The brother of my best friend killed himself, the best friend of another best friend died in a horrible train accident and another friend died in a horrible car accident. This all happened in the span of 2 years. I grew up quickly and tried my best to support my friends in all the ways I could. One thing I will never forget them saying is how people didn't even dare to bring this up. They just don't talk about it, like they want to ignore this was going on.
Thank you for this reminder.
The last point is definitely something I can work on myself. Thank you for explaining it in such a clear way.
I am so sorry for your losses. That seems like a lot. If my post allows you to do better next time, then "Hooray!!" Because I know that deep in your heart you want to do the best you can. Sending love and light,
Ohhh Anne, I heart-pain hear you. You took me right back to 2018-2020 when people were telling me to look after myself when I was caring for Dad...and then Mum being diagnosed of cancer...yeahhhhh durrr tell me something I'm not trying to do!
There are many additional 'please don'ts, ' I could add but instead I'm making a big mug of tea; you go for a walk or grab a couple of hours of sleep while I sit/watch over Mr J
Dry shampoo is a lifesaver, and shower-cap-shampoos! ;-)
Some wondered why I 'hunkered' down away from everyone - they didn't realise that I'd rather conserve my energy, NOT explaining what we did all the time, educating others or explaining why their suggestions don't work.Self-preservation & setting hard boundaries to protect our love-bubble was a survival tactic. I appreciated people were well-intentioned BUT in my book, love is unconditional, we're not an opportunity for other's to play 'hero' or a conduit for others to demonstrate their charitable acts. As you can tell my patience is boundless for my loved ones and set in concrete to protect us.......Ohhhh gosh I'll gently step down from my soapbox. Here sitting alongside you in empathy and solidarity!
"Take care of yourself." Adorable!! I did not know what a shower cap shampoo was, (Thanks, Google!) I will have to invest in some of those. Thank you for sitting with me. It helps to have friends during this time.
An honest and heartfelt post Anne, thank you so much. As a former hospice nurse, I got to see firsthand families struggling with just keeping it all together, and of course, having my own caregiving experiences too. I will print this out and share widely. Sending you a virtual hug.
Thank you, Luci, for the hug and for the support. I am following several hospice nurses online so I can be a better death doula when the time comes. Please share with whomever you think might need to hear it. Sending hugs and gratitude.
And your list of practical things people can do is fantastic. I wrote about this topic also, and can only hope that one day people will begin to listen. My issues are completely unrelated and different than yours, but I too understand the raw anger that wants to scream when people offer platitudes.
Maybe we could take our lists of ways to truly help and laminate it, then hang it on the front door. Title: Read me first, before entering.
@Teyani, I don't know your issues, but I do know trauma and sadness and grief are universal. Perhaps we should monitize this? A bookmark? A magnet? A flyer for people to send? I am all ears.
Hi Anne. There could possibly be something out there already. If you’ve got any space to take on something like this, go for it.
My stuff is major health issues for the past four years, caused by a well meaning brand new resident. I’ve been 99% bedridden. I’m hopefully in the upswing healing side of things, but still have limited energy.
Here’s the post I wrote after someone said something to me like ‘you’re never given more than you can handle’.
It DID make me chuckle! And I was pretty sure that was the intention.🤗
And? I think it’s also a great idea. I’m a member of an on line forum for my CSF leak and there are almost 7800 members who wish they had a list to hand out to their family and friends who care but are terrible at expressing it.
Much love and light to you during this wretched time you are in. I’m truly here if ever talking would help. Just dm me.
I’ve been away for a week and come back to this recommendation via Amy at the tonic (love her). These absolutely are conversations we must be having. Awareness that needs to be raised. Death and grief is such a big part of our lives and yet we cannot (generally speaking) have a conversation on it. Your writing highlights how we’ve been conditioned to make light of everything, skirt around the issue in a feeble attempt to try and make the other person feel better, save ourselves from the discomfort. I know I have done this many times to others myself in a range of different sets of circumstances and situations. An uncomfortable truth I have become aware of in my own journey.
And it is true: “That’s okay, you know. For both of us to be sad about a thing we cannot control and cannot contain. We can just sit together in the shared pain that is our grief.”
I have this image now of me, you, Sheila and anyone else who would like to join us, meeting over zoom and sitting in circle together. Holding space for one another. In our grief and with our shared pain.
Amber, you were my first contact on Substack. I am grateful for you. I admit I was wondering where you were. I hope everything is okay, to the extent that it can be.
I absolutely love the idea of meeting over zoom and holding space. Let's explore that. Sheila? Victoria? Kristina?
☺️ I’ve been extremely fortunate to go away on holiday. I had a wonderful time in Tunisia with the mr. It’s a month where I am reminded that my journey isn’t part of any linear system I’ve been told it’s meant to be. 2nd migraine attack this month meant a missed couple of days hol and enjoyment (the same last year). When my boyf said to me mid attack “I’m so sorry you live with migraine disease. It’s so unfair”. In that moment it felt like the kindest, sweetest most thoughtful thing anyone had ever said to me🥲
P.s. I won a writing competition for a short story I wrote on my life lived in the last year (2023). It’s going to be turned into an ebook🤩
So much deliciousness here. Holiday. Understanding Mr. Won a writing contest!! EBOOK!!!!! Hooray! I have a huge smile on my face. So happy for you (except the migraine part. That is not fun at all.
Ahhhh thank you🥰 there may be so much darkness, so much we feel we are drowning at times. But there is always that little bit of light to be found somewhere. There is no light without the dark and vice versa. One cannot exist without the other.
I'm so sorry to read about your situation. Sending love and virtual support to you and Mr J from France. I found your list of what not to say very poignant. I lived through a very dark period a couple of years ago when my eldest daughter was in intensive care and I spent 6 months abroad to be close to her. The messages of l8ve and support from friends really kept me going but sometimes it was just too sad and exhausting to send updates. A friend's mother just used to send me a heart on Messenger every day. No questions, no advice, just some love. It was perfect and it's what I do now when I find out something bad is happening to someone I know but there's nothing I can do or say. So this is for you ♥
Thank you for sharing this list of suggestions. Being long-distance from many people I love, sometimes it's hard to know how to show up in tangible ways. Sending DoorDash gift cards or groceries is something I've done on occassion. Another gift anyone can give a grieving person is to not ask for any explanations or details. Like. Ever. Be a listening ear if that's what the person needs but don't pry and prod just so you can have the inside info. Nope. No thanks, keep moving! :)
100 % agree, Mariah. Just listening, without question or judgment, can make a world of difference.
Wow Anne, when I see a notification you’ve written something knew I look forward to it. You write in such a pleasant way about something absolutely horrendous.
This list of advice you can remove >dying dying husband< and insert so many other things. I’m impressed by your ability to voice what you need in this time. I hope you have this pinned to your front door, posted to your social medias and printed off for those who call by.
I know in my darkest times I found it hard to voice what I needed I was so overwhelmed by the situation. But if people just had this list to hand it’d have applied to me with very little editing.
I would love to pop round and do some washing for you, have a cuppa or do a mini apprenticeship to sit with your husband so you could go to Target and be a normal person.
Instead I’ll send virtual hugs from Spain and enjoy reading your words that are coming from such a sad and shitty situation 💚
Sheila, I would love a cuppa with you. But for now, I will gladly accept virtual hugs and support. Thank you.
I hope you’re managing to find a moment for yourself this weekend, even if it’s only whilst you sip your coffee (or tea or chosen beverage) ☕️ I look forward to your next writing ✍️ your writing is making me feel inspired!
thank you, Sheila. I managed some somatic yoga this morning while Mr. J was still asleep.
I’m impressed! Anyone with the where for all for morning activities I’m in awe of. I have to lay in bed for the guts of half an hour painfully waking up 😆 mornings are not my productive time x
Masterfully written and spoken. There’s an escalating disagreement going on between two writers on Substack which started with one’s post about being addicted to hate comments. The other writer made a long, well thought out comment with advice for the OP. The OP was triggered by that comment and commented back in a way which made the second writer fee “castigated” for their well meaning and thoughtful advice. I’ve commented on both writer’s posts that it’s not about intentions, it’s about impact. Why is that so hard for people to understand? Forget the Golden Rule, it’s the Platinum Rule: Do unto others as they would have done unto them. My apologies for meandering. Two and a half years after my husband died and a combination of grief brain, menopause and insomnia (probably menopause related) has we rambling on the inter-webs 🤣🥰🤗
I understand you so well. Many, many times I have been devastated by the well meaning words or questions posed by someone else. Their well meaning words made me angry and resentful. Often, I felt judged by them. 'There is something that must be done' sounds almost like you (caregiver) aren't doing enough. This is so horrible. Sending you and Mr. J love. And sending you both strength.
Thank you, Kristina. Of course you understand! We appreciate your love and strength and send it right back to you!!
Simple, clear, honest, useful. Thank you for sharing this 🙏
Anne, I'm already a widow, but I identify with so much of this, especially responding to people who ask what they can do and put the burden on us to figure it out. This is all so important I'm going to share it.
Sue, I am so sorry for your loss. It looks like we started Substack around the same time. I look forward to learning from you. thank you for your support.
Everybody needs to read this.
We all know somebody close to us, going through the same as you. And if not now, then in the future we will.
As a teenager, I saw a lot of grief and pain. The brother of my best friend killed himself, the best friend of another best friend died in a horrible train accident and another friend died in a horrible car accident. This all happened in the span of 2 years. I grew up quickly and tried my best to support my friends in all the ways I could. One thing I will never forget them saying is how people didn't even dare to bring this up. They just don't talk about it, like they want to ignore this was going on.
Thank you for this reminder.
The last point is definitely something I can work on myself. Thank you for explaining it in such a clear way.
Sending you much love.
I am so sorry for your losses. That seems like a lot. If my post allows you to do better next time, then "Hooray!!" Because I know that deep in your heart you want to do the best you can. Sending love and light,
Ohhh Anne, I heart-pain hear you. You took me right back to 2018-2020 when people were telling me to look after myself when I was caring for Dad...and then Mum being diagnosed of cancer...yeahhhhh durrr tell me something I'm not trying to do!
There are many additional 'please don'ts, ' I could add but instead I'm making a big mug of tea; you go for a walk or grab a couple of hours of sleep while I sit/watch over Mr J
Dry shampoo is a lifesaver, and shower-cap-shampoos! ;-)
Some wondered why I 'hunkered' down away from everyone - they didn't realise that I'd rather conserve my energy, NOT explaining what we did all the time, educating others or explaining why their suggestions don't work.Self-preservation & setting hard boundaries to protect our love-bubble was a survival tactic. I appreciated people were well-intentioned BUT in my book, love is unconditional, we're not an opportunity for other's to play 'hero' or a conduit for others to demonstrate their charitable acts. As you can tell my patience is boundless for my loved ones and set in concrete to protect us.......Ohhhh gosh I'll gently step down from my soapbox. Here sitting alongside you in empathy and solidarity!
"Take care of yourself." Adorable!! I did not know what a shower cap shampoo was, (Thanks, Google!) I will have to invest in some of those. Thank you for sitting with me. It helps to have friends during this time.
❤️ Yup these little tips make the big difference ;-) Happy to be connected.
Thank you for writing this. I hope people read the shit out of it.
This is literally a PSA.
Thank you for your kind words. You made my morning!
An honest and heartfelt post Anne, thank you so much. As a former hospice nurse, I got to see firsthand families struggling with just keeping it all together, and of course, having my own caregiving experiences too. I will print this out and share widely. Sending you a virtual hug.
Thank you, Luci, for the hug and for the support. I am following several hospice nurses online so I can be a better death doula when the time comes. Please share with whomever you think might need to hear it. Sending hugs and gratitude.
As my husband's caregiver for the ten years he suffered from MS before his death, I really appreciate your honest and revealing posts. Thank you.
Thank you, Suzanne. I really appreciate your encouragement.
I’m so sorry. Truly. 💔
And your list of practical things people can do is fantastic. I wrote about this topic also, and can only hope that one day people will begin to listen. My issues are completely unrelated and different than yours, but I too understand the raw anger that wants to scream when people offer platitudes.
Maybe we could take our lists of ways to truly help and laminate it, then hang it on the front door. Title: Read me first, before entering.
@Teyani, I don't know your issues, but I do know trauma and sadness and grief are universal. Perhaps we should monitize this? A bookmark? A magnet? A flyer for people to send? I am all ears.
Hi Anne. There could possibly be something out there already. If you’ve got any space to take on something like this, go for it.
My stuff is major health issues for the past four years, caused by a well meaning brand new resident. I’ve been 99% bedridden. I’m hopefully in the upswing healing side of things, but still have limited energy.
Here’s the post I wrote after someone said something to me like ‘you’re never given more than you can handle’.
And here’s a link to the post I wrote about what people could offer/say/do that might actually help. https://open.substack.com/pub/stayingtogether/p/so-what-can-i-say?r=37ixbd&utm_campaign=post&utm_medium=web
Teyani, I was mostly just kidding about that. I am sending love and light, and hoping you are, indeed, on the upswing.
It DID make me chuckle! And I was pretty sure that was the intention.🤗
And? I think it’s also a great idea. I’m a member of an on line forum for my CSF leak and there are almost 7800 members who wish they had a list to hand out to their family and friends who care but are terrible at expressing it.
Much love and light to you during this wretched time you are in. I’m truly here if ever talking would help. Just dm me.
I’ve been away for a week and come back to this recommendation via Amy at the tonic (love her). These absolutely are conversations we must be having. Awareness that needs to be raised. Death and grief is such a big part of our lives and yet we cannot (generally speaking) have a conversation on it. Your writing highlights how we’ve been conditioned to make light of everything, skirt around the issue in a feeble attempt to try and make the other person feel better, save ourselves from the discomfort. I know I have done this many times to others myself in a range of different sets of circumstances and situations. An uncomfortable truth I have become aware of in my own journey.
And it is true: “That’s okay, you know. For both of us to be sad about a thing we cannot control and cannot contain. We can just sit together in the shared pain that is our grief.”
I have this image now of me, you, Sheila and anyone else who would like to join us, meeting over zoom and sitting in circle together. Holding space for one another. In our grief and with our shared pain.
Amber, you were my first contact on Substack. I am grateful for you. I admit I was wondering where you were. I hope everything is okay, to the extent that it can be.
I absolutely love the idea of meeting over zoom and holding space. Let's explore that. Sheila? Victoria? Kristina?
☺️ I’ve been extremely fortunate to go away on holiday. I had a wonderful time in Tunisia with the mr. It’s a month where I am reminded that my journey isn’t part of any linear system I’ve been told it’s meant to be. 2nd migraine attack this month meant a missed couple of days hol and enjoyment (the same last year). When my boyf said to me mid attack “I’m so sorry you live with migraine disease. It’s so unfair”. In that moment it felt like the kindest, sweetest most thoughtful thing anyone had ever said to me🥲
P.s. I won a writing competition for a short story I wrote on my life lived in the last year (2023). It’s going to be turned into an ebook🤩
So much deliciousness here. Holiday. Understanding Mr. Won a writing contest!! EBOOK!!!!! Hooray! I have a huge smile on my face. So happy for you (except the migraine part. That is not fun at all.
Ahhhh thank you🥰 there may be so much darkness, so much we feel we are drowning at times. But there is always that little bit of light to be found somewhere. There is no light without the dark and vice versa. One cannot exist without the other.
I'm so sorry to read about your situation. Sending love and virtual support to you and Mr J from France. I found your list of what not to say very poignant. I lived through a very dark period a couple of years ago when my eldest daughter was in intensive care and I spent 6 months abroad to be close to her. The messages of l8ve and support from friends really kept me going but sometimes it was just too sad and exhausting to send updates. A friend's mother just used to send me a heart on Messenger every day. No questions, no advice, just some love. It was perfect and it's what I do now when I find out something bad is happening to someone I know but there's nothing I can do or say. So this is for you ♥
Thank you. I will take your heart and your kind words.