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How to tell your child you're dying
Okay girls...here's a hard one. And for the young moms I'm sure you spin your wheels on this daily. I'm trying to figure out how to let my girl know that I won't be around here for her. How does one do that?
So far my girl knows pretty much everything...that I've not been successful with the standard treatment or the 2nd line trial drug. I really think that she probably knows more that I give her credit. She is 15 and very bright. But after that, what kind of conversations should I have with her? Should I wait for her to ask?
I've talked to a friend that lost her mom at age 17 and got a lot of sadness/anger from her regarding the experience. One thing she said she wished she had was a tape recording of her mom's voice. I can understand that and am thinking about how to do that. Any other advice here?
Think of ya'll often and sorry to have taken a break from the site for a while....
Love and peace
Teresa
So far my girl knows pretty much everything...that I've not been successful with the standard treatment or the 2nd line trial drug. I really think that she probably knows more that I give her credit. She is 15 and very bright. But after that, what kind of conversations should I have with her? Should I wait for her to ask?
I've talked to a friend that lost her mom at age 17 and got a lot of sadness/anger from her regarding the experience. One thing she said she wished she had was a tape recording of her mom's voice. I can understand that and am thinking about how to do that. Any other advice here?
Think of ya'll often and sorry to have taken a break from the site for a while....
Love and peace
Teresa
i admire ur courage in managing the matter... you might want to read this blog: shinscancerblog.blogspot.com
it was written by a korean-american woman who had breast cancer. she talks quite a bit abt preparing her children for her passing...
however, i do hope u can still persevere...
all the best!
it was written by a korean-american woman who had breast cancer. she talks quite a bit abt preparing her children for her passing...
however, i do hope u can still persevere...
all the best!
My father was 45 when he passed away from sinus cancer. I was 15 and my brother was 13. He was sick for 3 years.
I remember the day that my parents came home from the doctor to explain to us that daddy was going to have his eye and most of his palate removed in order to try and stop the cancer. I'm 55 now and I remember it like it was yesterday (I was 12).
I will always be grateful that my parents were upfront with us. Besides the fact that the disfiguring surgery wasn't something they could hide, he went through radiation treatments before the surgery that were very rough.
At the time they said he had a 50/50 chance. My brother and I of course thought he was going to be ok, because nothing could possibly happen to our daddy. For a child, no matter what you say, it's going to be hard when the time finally comes. But we did understand what was happening and we were able to spend quality time with him. It's funny you should mention a recording. Of course back in 1969 technology wasn't what it is now. But my cousins had a tape of my father wheeling me in my carriage. And a friend had a recording of his voice when he was trying out his tape recorder. So we have "accidental" memories.
My advice: talk with your daughter as much as you can, make the recording of your voice, and write down anything you would want her to know. She's going to need that. And it's wonderful that you are thinking of her in this way.
I remember the day that my parents came home from the doctor to explain to us that daddy was going to have his eye and most of his palate removed in order to try and stop the cancer. I'm 55 now and I remember it like it was yesterday (I was 12).
I will always be grateful that my parents were upfront with us. Besides the fact that the disfiguring surgery wasn't something they could hide, he went through radiation treatments before the surgery that were very rough.
At the time they said he had a 50/50 chance. My brother and I of course thought he was going to be ok, because nothing could possibly happen to our daddy. For a child, no matter what you say, it's going to be hard when the time finally comes. But we did understand what was happening and we were able to spend quality time with him. It's funny you should mention a recording. Of course back in 1969 technology wasn't what it is now. But my cousins had a tape of my father wheeling me in my carriage. And a friend had a recording of his voice when he was trying out his tape recorder. So we have "accidental" memories.
My advice: talk with your daughter as much as you can, make the recording of your voice, and write down anything you would want her to know. She's going to need that. And it's wonderful that you are thinking of her in this way.
Teresa,
Yes that is a hard one. Though my son is now 30, I have my grandchildren to deal with. The oldest one is 11 and knows what is going on. I have never tried to keep it from her. I have found that the easiest way to talk to her is to let her bring it up. She was upset one day not too long ago and looked at me with panic in her eyes and said, "Grandma, I want you to promise me something" When I said what, She said, "I want you to promise me that you will be here for me for a long, long time" Well, I have to say that my heart just broke. Through my tears I told her that i could not promise her that but that I would be here just as long as I could.
As the others have said, the words are hard to find and i don;t know if I could just sit down and have a conversation like that.
Chris
Yes that is a hard one. Though my son is now 30, I have my grandchildren to deal with. The oldest one is 11 and knows what is going on. I have never tried to keep it from her. I have found that the easiest way to talk to her is to let her bring it up. She was upset one day not too long ago and looked at me with panic in her eyes and said, "Grandma, I want you to promise me something" When I said what, She said, "I want you to promise me that you will be here for me for a long, long time" Well, I have to say that my heart just broke. Through my tears I told her that i could not promise her that but that I would be here just as long as I could.
As the others have said, the words are hard to find and i don;t know if I could just sit down and have a conversation like that.
Chris
My husbands best friend battled lung cancer for a year he was 40, children aged 3, 12 and 15 at the time, I know this is just beyond words for you, I do have some suggestions similar to above. Did you ever see the movie Sunshine on my Shoulders, its a rather old movie, a heartbreaker but it address the issues your discussing.She taped messages on camcorder, you could make dvds for her to watch on the occasions you know will be important to her. prom, her first broken heart etc...you can give her your love and motherly advise, she will treasure that, and will know that Moms great love transends her earthly life, She is at the age where many questions about sexuality and stuff will come up, so some journa type letters etc addressing those would be nice. also just a memory book, write what you loved best about her when she was a newborn, toddler etc she will love to read that. Maybe if you can find enough strenght, buy and wrap a wedding gift, a first baby gift. It will mean the world to her.
My advise to you has me in tears, there are really no words , God will welcome you and you will be ok, its those left behind who suffer, Your a wonderful and great Mom, you can leave your daughter a beautiful legacy.and its really the little things that mean the most,,My hubbys friend did not want to do letters etc for every birthday, christmas and so on he did them for, events like first real love, becoming sexually active, and so on..God Bless and I hope this helped just a bit.
My advise to you has me in tears, there are really no words , God will welcome you and you will be ok, its those left behind who suffer, Your a wonderful and great Mom, you can leave your daughter a beautiful legacy.and its really the little things that mean the most,,My hubbys friend did not want to do letters etc for every birthday, christmas and so on he did them for, events like first real love, becoming sexually active, and so on..God Bless and I hope this helped just a bit.
You said
I also love the book idea but still trying to figure out the outline (Yes, I'm over analyzing this).
You don't have to reinvent the wheel on that. Just go to the bookstore and ask about books for grandparents to fill out and give to their grandchildren. They ask questions and leave room for the answers. You can fill them out -- or you can swipe the questions and answer them in your computer. They provide the outline. Also some dumb questions, but you get to pick and choose what you answer. There's more than one version of this, and I hope you'll find one that seems worthwhile.
I also love the book idea but still trying to figure out the outline (Yes, I'm over analyzing this).
You don't have to reinvent the wheel on that. Just go to the bookstore and ask about books for grandparents to fill out and give to their grandchildren. They ask questions and leave room for the answers. You can fill them out -- or you can swipe the questions and answer them in your computer. They provide the outline. Also some dumb questions, but you get to pick and choose what you answer. There's more than one version of this, and I hope you'll find one that seems worthwhile.
My 21 year old son is my only child. He met a woman when he was 15, she is 2 years older. They are a wonderful match in almost every way except neither has known any other opposite sex partner. They were planning a wedding next year. I asked my onc, he said if they want me there it must be sooner. Soooo, altho they are really not ready and will be livin in our basement, the date is set for 9/19. How bittersweet is that?
Sharon
Sharon
Thanks so much for ya'lls comments. You all have good suggestions. Ty...I do believe that you are doing a good job with age appropriate comments. It is so different with little ones.
I also love the book idea but still trying to figure out the outline (Yes, I'm over analyzing this).
It's just hard to think about what I would say to a grown up Maggie the day of her wedding, when she is pregnant etc. And knowing I won't be there for her questions. She does have my parents who adore her but my mother is very different than me.... As for my recipes....ha...my favorite meal is called "Take Out"! It's a joke with us! But that's part of it all I guess...the memories we create now.
We're going to San Francisco, just the 2 of us this summer...hope to have some good times bowing before the downtown Norstrom!
Hugs to all!
Teresa
I also love the book idea but still trying to figure out the outline (Yes, I'm over analyzing this).
It's just hard to think about what I would say to a grown up Maggie the day of her wedding, when she is pregnant etc. And knowing I won't be there for her questions. She does have my parents who adore her but my mother is very different than me.... As for my recipes....ha...my favorite meal is called "Take Out"! It's a joke with us! But that's part of it all I guess...the memories we create now.
We're going to San Francisco, just the 2 of us this summer...hope to have some good times bowing before the downtown Norstrom!
Hugs to all!
Teresa
I’m so sorry you have to think about this. Through my tears, I’d suggest …
Tell her that you’re fighting hard for every day, and you plan to continue to do that. But tell her there might come a time when you can no longer fight. You will know when that is, and she will probably know, too. You’ll go through it together if the time comes.
If you think she needs to, find someone she can talk with about her fears. (Hospices have grief counselors. Hospitals, churches, schools, American Cancer Society, etc. may sponsor teen support groups. And I’m sure there are therapists out there, too.) And, please, do the hard part: give her permission to establish relationships with other women who can “mother” her a bit – perhaps now and certainly in the future.
Try not to leave anything unsaid. Then encourage her to believe that she knows you well enough to know what you would say, in general. Tell her not to worry when someone says, “your mother would want you to (fill in the blank)” or when she wants to know what you would think about her choices. Tell her you want her to have a happy, healthy, productive, satisfying life. If she makes a choice carefully and she believes her choice will lead to long-term happiness, you would approve. (Eventually.)
I love the idea of scrapbooks, audiotapes, and videos. How about taping the two of you doing things together, having a conversation, etc? Look at the bookstore for one of those books that grandparents fill out for their grandchildren – and fill it out for her and her children. Ask her what she wants from you, too. (For example, china, silver, jewelry; other “possessions” -- family history, including medical illnesses and genealogy information -- a family recipe collection, including her favorites, your favorites, your mother’s best recipes, etc. Maybe going over this stuff, which is practical, will help you talk about things, too.)
I think you're getting a lot of good, thoughful responses, and I hope you'll be able to pick and choose what will work for you.
My heart is breaking for you.
Tell her that you’re fighting hard for every day, and you plan to continue to do that. But tell her there might come a time when you can no longer fight. You will know when that is, and she will probably know, too. You’ll go through it together if the time comes.
If you think she needs to, find someone she can talk with about her fears. (Hospices have grief counselors. Hospitals, churches, schools, American Cancer Society, etc. may sponsor teen support groups. And I’m sure there are therapists out there, too.) And, please, do the hard part: give her permission to establish relationships with other women who can “mother” her a bit – perhaps now and certainly in the future.
Try not to leave anything unsaid. Then encourage her to believe that she knows you well enough to know what you would say, in general. Tell her not to worry when someone says, “your mother would want you to (fill in the blank)” or when she wants to know what you would think about her choices. Tell her you want her to have a happy, healthy, productive, satisfying life. If she makes a choice carefully and she believes her choice will lead to long-term happiness, you would approve. (Eventually.)
I love the idea of scrapbooks, audiotapes, and videos. How about taping the two of you doing things together, having a conversation, etc? Look at the bookstore for one of those books that grandparents fill out for their grandchildren – and fill it out for her and her children. Ask her what she wants from you, too. (For example, china, silver, jewelry; other “possessions” -- family history, including medical illnesses and genealogy information -- a family recipe collection, including her favorites, your favorites, your mother’s best recipes, etc. Maybe going over this stuff, which is practical, will help you talk about things, too.)
I think you're getting a lot of good, thoughful responses, and I hope you'll be able to pick and choose what will work for you.
My heart is breaking for you.
Hi Teresa,
This is a very good issue you brought up. I would think it is one we all struggle with. My kids are 21, 20 and 17. Just as each one is different in their personality, each one handles OC differently. The oldest two are girls,one doesn't want to know details and the other one does. My boy, who is the youngest, seems to not want to know much either. I guess, and I don't know if I'm right or wrong in thinking this, but I guess we just have to be clear to them that they can talk to us any time about it. That way, they don't feel shut out. I try to tell them each time I start new treatment and each time the treatment stops working, so they are kept abreast of the current status and what it means in the big picture. I don't want this to ever consume their lives, however, they are all aware that this will probably kill me sooner rather than later. It sounds like you have kept her informed all along and I think that is great. Whatever you discuss with your daughter will probably be the right approach for her, because you are keeping her needs in mind. Nothing tugs at my heart strings more than the thought of leaving them early, and I try not to think of that too much. When it does bother me I try to think that the positive of it is that maybe our kids, in watching us, will have learned to face adversity and realize the important things in life; that maybe its not worth getting upset over small things. Anyway, I'm babbling and maybe thats just so I can feel better but hey, it works for me. Follow your daughter's cue and you will say the right things for her. You love her and I'm sure she knows that. Something that I have been doing is writing in a book for each of them so I can address important issues that I think they will encounter later on in life. That way its like I'm there talking to them and trying to help solve their potential problems. Good luck.
Karen
This is a very good issue you brought up. I would think it is one we all struggle with. My kids are 21, 20 and 17. Just as each one is different in their personality, each one handles OC differently. The oldest two are girls,one doesn't want to know details and the other one does. My boy, who is the youngest, seems to not want to know much either. I guess, and I don't know if I'm right or wrong in thinking this, but I guess we just have to be clear to them that they can talk to us any time about it. That way, they don't feel shut out. I try to tell them each time I start new treatment and each time the treatment stops working, so they are kept abreast of the current status and what it means in the big picture. I don't want this to ever consume their lives, however, they are all aware that this will probably kill me sooner rather than later. It sounds like you have kept her informed all along and I think that is great. Whatever you discuss with your daughter will probably be the right approach for her, because you are keeping her needs in mind. Nothing tugs at my heart strings more than the thought of leaving them early, and I try not to think of that too much. When it does bother me I try to think that the positive of it is that maybe our kids, in watching us, will have learned to face adversity and realize the important things in life; that maybe its not worth getting upset over small things. Anyway, I'm babbling and maybe thats just so I can feel better but hey, it works for me. Follow your daughter's cue and you will say the right things for her. You love her and I'm sure she knows that. Something that I have been doing is writing in a book for each of them so I can address important issues that I think they will encounter later on in life. That way its like I'm there talking to them and trying to help solve their potential problems. Good luck.
Karen
My Sister-in-law passed away at the age of 40 due to medical issues. At the time, the 3 children were 13, 16, and 18. She spoke individually with each of the children about her illness and that she probably wouldn't be here long. She also wrote letters to each one of them and gave them to her mom to give to the kids a few weeks after the funeral.
The one hardest hit was the 13 year old. Hard to believe that was almost 10 years ago:-(
The one thing that I have heard the 22 year old say is she wishes she could hear her mom's voice. I think the tape or a video would be a great idea with this.
Peace,
Karen
The one hardest hit was the 13 year old. Hard to believe that was almost 10 years ago:-(
The one thing that I have heard the 22 year old say is she wishes she could hear her mom's voice. I think the tape or a video would be a great idea with this.
Peace,
Karen
Cards and tapes are very good ideas which I would like to do them too. For some tapes i will record the conversation rather then just my voice.
I have two dauhters one is 17 and the other is 12, elder one is much easy to talk too about issue, she will go with me to dr's appointments, but the younger one is hard, She always says it is too sad to see all the patients in the hospital.
My idea is to show them how i handle problems from all aspects daily, from teaching them how to cook their favorite dish to how to save a penny. That way them will not miss me too mcuh since they already know how to everything, (This is the one of the best part from getting this dease, kids are mature faster then their peers which i think is a very positive part.) as a mother I thought I have fullfilled my responsibility as much as i can. Juts my thoughts.
Peace and Love
jun
I have two dauhters one is 17 and the other is 12, elder one is much easy to talk too about issue, she will go with me to dr's appointments, but the younger one is hard, She always says it is too sad to see all the patients in the hospital.
My idea is to show them how i handle problems from all aspects daily, from teaching them how to cook their favorite dish to how to save a penny. That way them will not miss me too mcuh since they already know how to everything, (This is the one of the best part from getting this dease, kids are mature faster then their peers which i think is a very positive part.) as a mother I thought I have fullfilled my responsibility as much as i can. Juts my thoughts.
Peace and Love
jun
I've heard of some people that will write notes or fill in cards and put them aside for their children to be given on those special occasions. Having birthday cards or graduation cards depending on the age of the child ready to be given throughout the next few years.
I have journals that I've kept over the years where I write about my kids, the struggles they go through, the good times, even my struggles trying to be a good Mom to them. And someday they can have them to read. It will be "our" history together.
I like the idea of a recording. That's another way to share your thoughts and dreams for their future, to talk about how proud you are of them, what you hope for them.
And lots of pictures of happy times together. I still love to look through the photo albums of the places I've lived, people I've known. Keeps the memories bright.
I agree that you should keep your kids involved with what's going on. They don't like to be kept in the dark. It causes a lot of fear that they don't understand which can easily turn to anger. When it comes to the big scary items in life, they don't want to be treated like "a kid." They want to be trusted, to know you have enough confidence in them to be honest. Not morbid and suffocate them with all the details. But enough that they won't be hit by an ugly surprise.
I have journals that I've kept over the years where I write about my kids, the struggles they go through, the good times, even my struggles trying to be a good Mom to them. And someday they can have them to read. It will be "our" history together.
I like the idea of a recording. That's another way to share your thoughts and dreams for their future, to talk about how proud you are of them, what you hope for them.
And lots of pictures of happy times together. I still love to look through the photo albums of the places I've lived, people I've known. Keeps the memories bright.
I agree that you should keep your kids involved with what's going on. They don't like to be kept in the dark. It causes a lot of fear that they don't understand which can easily turn to anger. When it comes to the big scary items in life, they don't want to be treated like "a kid." They want to be trusted, to know you have enough confidence in them to be honest. Not morbid and suffocate them with all the details. But enough that they won't be hit by an ugly surprise.
Dear ladies,
My heart goes out to both of you, and anyone else facing what you, and your young children are dealing with.
The suggestion of a tape recording is excellent, I have tapes of my Mom and it's a comfort to hear her voice although she's been gone many years.
I've seen little children in the room when I've been having my chemo, they're matter of fact and the nurses and other chemo patient talk to them and make them comfortable. They see what Mom is going through and it's a positive situation for them. I'm sure that every child's response is different, however.
I wish both of you, and your families a miracle drug, and relief from this horror we're all going through. Your both wonderful, courageous ladies and I greatly admire you.
Jane
My heart goes out to both of you, and anyone else facing what you, and your young children are dealing with.
The suggestion of a tape recording is excellent, I have tapes of my Mom and it's a comfort to hear her voice although she's been gone many years.
I've seen little children in the room when I've been having my chemo, they're matter of fact and the nurses and other chemo patient talk to them and make them comfortable. They see what Mom is going through and it's a positive situation for them. I'm sure that every child's response is different, however.
I wish both of you, and your families a miracle drug, and relief from this horror we're all going through. Your both wonderful, courageous ladies and I greatly admire you.
Jane
Hey Teresa...this is a tough one for sure. As my son has gotten older (he's now 6) the questions become more and more. He asked me the other week why he couldn't have a brother or sister and I told him that because of the bad guys in my tummy, the doctor's had to remove all the bits and pieces I needed to have a baby. His response? "well, if they go in and remove all the bad guys, can't they just put the peices back?"...it's so simple for kids!
I've talked to my son before about angels...I figure that's the easiest way to explain it to him. I told him that if I died, I would go to heaven and become an angel and watch over him...that I'd always be here with him. Even though he might not be able to see me, he could always talk to me like I was in the room with him. That seemed to do the trick...for now. I know the older he gets, the more questions will come and I take them day by day.
I know everyone has different religious belief's so this might not be the route to go, but I do strongly feel it needs to be discussed. I have never and will never lie to my child about this disease...I firmly believe that if you lie once and they catch you, they will question whether you are telling them the truth or not from that point on. I also take my son to as many appointments as I can...I don't want him to fear hospitals or doctors in the future...besides, he loves going with me to my blood draws because he walkes out of there with stickers and lollipops! The nurses love him :)
I'd love to get some other peoples expierences with this...this is definatley a road less traveled and anything we can share would be helpful.
Becky
I've talked to my son before about angels...I figure that's the easiest way to explain it to him. I told him that if I died, I would go to heaven and become an angel and watch over him...that I'd always be here with him. Even though he might not be able to see me, he could always talk to me like I was in the room with him. That seemed to do the trick...for now. I know the older he gets, the more questions will come and I take them day by day.
I know everyone has different religious belief's so this might not be the route to go, but I do strongly feel it needs to be discussed. I have never and will never lie to my child about this disease...I firmly believe that if you lie once and they catch you, they will question whether you are telling them the truth or not from that point on. I also take my son to as many appointments as I can...I don't want him to fear hospitals or doctors in the future...besides, he loves going with me to my blood draws because he walkes out of there with stickers and lollipops! The nurses love him :)
I'd love to get some other peoples expierences with this...this is definatley a road less traveled and anything we can share would be helpful.
Becky
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