When to tell children your dying?

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Cherie
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When to tell children your dying?

Postby Cherie » Sat Sep 26, 2015 5:51 am

When do you tell your children your dying?

I have a six year old. My husband and I are arguing over when and what to tell my daughter.
36Yo F
2000 UC
2013 Stage 4 CC 15/126 LN spread to the omentum
June Collectomy all visible cancer removed
July Folfox + Avastin
2/14 clean scan
8/14 Ileo-anal pouch surgery still NED
1/15 Emergency illeostomy spread to peritoneum and small bowel

Nik Colon

Re: When to tell children your dying?

Postby Nik Colon » Sat Sep 26, 2015 5:57 am

That's a tough one. I would want to make sure I was 100% then maybe depending on how much longer I thought I had, how I was doing physically, etc. I would want my daughter to know but I don't think I would want to jump the gun and have her think about it all the time until. I guess all I can suggest is when you feel it's right. Maybe talk to them about all the possibilities of what can happen first and see how they react. Maybe talk "around" it for awhile first to get the subject in the open.

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Sharon Brent
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Re: When to tell children your dying?

Postby Sharon Brent » Sat Sep 26, 2015 6:17 am

Hi,
My two girls were 5 and 2 when my husband was diagnosed and they knew he was sick as he was in and out of hospital but we never told them he was dying, he was diagnosed in January 2014 and Died in November 2014

There is no right time or way to tell your daughter but just remember all children are different my Girls are very Mature and have coped really well, they ask a lot of questions and now just say Papa is with Jesus but my friends child was devasteted when their fish died and always asked questions about what happened to my husband and crys a lot about the fish and whenever my kids say their Papa is gone.

Talk to your child and assess what she knows and judge from the chat how to proceed.

But remember there is No Right or Wrong

Much Love from London
Last edited by Sharon Brent on Sun Sep 27, 2015 12:11 pm, edited 1 time in total.
DH, 47yo, Dx Stg IV, mCRC, lvr, lng 1/14, Tx Capeciabine 9 rnds
Children 5 & 1
DH 48th Birthday 6 November in Hospital
Home palliative care on 12 November 2014
Called back to Jesus 4pm 15 November 2014
Life Celebration in Nigeria 8 January 2015

Julie YW
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Re: When to tell children your dying?

Postby Julie YW » Sat Sep 26, 2015 6:39 am

I'm not sure if I agree that there is no right or wrong way. Funny, this was just the subject of my blog post. If you are so inclined, you might want to read it. I also think the loss of a mother is more devastating than the loss of a father for very young children. Psychologists say that the most critical years for a mother to be present in any persons life is until 5, that these are the years when the foundation of security and love is set. So my goal is to make it until my younger child is 5. Probably, the best thing you should do is consult with a child psychologist you like. My children are 4 and almost 6 and they know I'm sick and will die. They ask a lot of questions. I think and the schools child psychologist thinks it's important for them to prepare and to work out their emotions while I'm still here to help them. They need to not feel like it's there fault somehow. I've seen a situation where the mother and family never told a 6 year old her mother was dying and the kid is now seriously messed up with multiple personality disorder and other issues at age 10. I believe when loved and with honesty children are strong and resilient. Good luck!

Julie
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
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Jack&KatiesMommy
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Re: When to tell children your dying?

Postby Jack&KatiesMommy » Sat Sep 26, 2015 7:51 am

Cherie
First know that I think of you and pray for you and your daughter often. I don't know when the right time is or what the right way is to tell a child you are dying. My Jack & Katie were 8 1/2 and 4 1/2 when I was diagnosed and told that I had 12-22 months to live ( with treatment.). We talked and consulted with a child psychiatrist about this issue. Our psychiatrist was adamant that we tell the children that my death was a real possibility. That we didn't know for sure what was going to happen or when....but that Mommy has cancer and may die. The psychiatrist himself had experience with this issue. His mother was diagnosed with breast cancer when he was 10. He said his parents told him this but no one ever explained how serious it was (that she could/would die.). She died 2 years later when he was 12 and he was shocked and devastated. He said he was getting his doctorate before he was able to finally come to terms with the loss and not realizing and being with his Mom before she died. I don't know if his advice is right...but we decided to be brutally honest with our children from the beginning....

Thinking of you.
Cynthia
Cynthia
Mommy to Jack (8) now (17) and Katie (4) now (13)
(My Most Precious Things)
Dx 8/11 Stage IV CRC (liver mets) CEA 2,600+
9/11 Folfiri 2/12: Failed Liver Resection
5/12 HAI pump/removed primary
4/13 Liver Resection
8/13-12/15 (10) RFAs lungs
5/17: Upper Left Lobe of lung resected.
02/18: 3 new lymph mets lung
05/18: Keytruda (MSS w/Intermediate TMB): NED CEA: 66.4, 39.2, 23.8, 13, 3.5 1.8, 1.0, 2.8 3.9, 5.0, 5.6, 1.5, .8,

Nik Colon

Re: When to tell children your dying?

Postby Nik Colon » Sat Sep 26, 2015 8:05 am

I understand people being up front, but I would want to be certain b4 I mentioned death. I was stage 4 but going for a cure and currently NED, which I hope to stay, so I don't bring up dying. I will in the future if things turned bad, but not until I knew. I don't think it would help my daughter to know at this point since I'm not there yet and may not be.

IF it were to come back or such, I would first talk about the possibility, but also mention that we are trying for a cure. Then explain more. My daughter is 12 and doesn't need to think there is a possibility unless it gets to that. Jmo. But I know she is smart enough to know it's not good as she is old enough to have heard things. But again, we focus on me getting better right now.

cathy123
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Re: When to tell children your dying?

Postby cathy123 » Sat Sep 26, 2015 9:18 am

No advice other than I think kids figure out more than we think and therefore I think honesty is usually the right choice. If it were me I would talk with a counselor about it first, and have someone available for my kids. So sorry - it is awful that you are going through this. Just wanted to send my prayers and best wishes.
Cathy

Diagnosed 10/14 low rectal cancer age 43
Clinical T2NXMX
Radiation/xeloda 12/14-1/15
LAR with temp Ileo 3/15
pT2N0M0, lymphatic invasion 0/37 nodes
4 xelox, 1 xeloda only
Reversal 9/15
Mom to 9&11 year olds

CM35
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Re: When to tell children your dying?

Postby CM35 » Sat Sep 26, 2015 10:29 am

This is a question I ponder often. I don't think there is a right answer. My daughters are 4 and my oldest will be 6 in two months. They were 1 and 3 when I was diagnosed, so they have no recollection of having a mother without cancer. We have always chosen to be honest with our children, but only give out the information as they ask for it or if my husband and I deem it something they need to know. They both understand, particularly my oldest, that I have cancer, and that cancer is a kind of sickness. She also understands that sometimes people get so sick or so hurt, there is no way to "fix" them, and they die. We haven't connected the dots for them, as far as telling them that eventually I will become so sick that I cannot be fixed, but my hope is that we have been clear enough about the life cycle, that these discussions will unfold fairly naturally. When I get to the point that I have exhausted all my treatment options, and my demise is imminent, we will be honest with them about what is going to happen. One thing I was told to remember, by a psychologist, is to not underestimate the intelligence and perception of young children. They absorb and understand much of what is going on around them, even if they don't verbalize it. Much of what we will tell them, while certainly distressing, will not be as big of a shock as we might think. Additionally, and this is speaking from the perspective of losing a parent at a young age (my biological father died when I was 4), I remember clearly being told of my father's death. There were no tears or hysteria. The permanence of death is difficult to comprehend at such a tender age, and the understanding and grief is much more of a process than with an adult. I worry far less about my children's resilience, than that of my husband or particularly my mother. My death will not destroy my children; it will forever be a fundamental part of who they are but they will be OK.

I think however you choose to handle this with your daughter, it's not going to be the "wrong" way. I do think honesty is best, just present it in a developmentally appropriate way. Social workers, psychologists and pediatricians are great sources for guidance on how to handle your particular situation.
stg IV 4/2013 @34 - liver, ovary/peritoneum
Lots of chemo, surgery and good luck - still doing well 03/2016...

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rwightman
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Re: When to tell children your dying?

Postby rwightman » Sat Sep 26, 2015 11:57 am

My kids are teenagers, so a completely different scenario but I thought I'd share my experience. Each of my kids have handled my cancer diagnosis completely differently. My youngest had pretty serious separation anxiety from me in 4th and 5th grade, to the point where she would freak out if I would leave the house without her for anything. She was convinced I was going to get in a car accident and die. After counseling and a little time and maturity she did get better, but when I was diagnosed with cancer I was so afraid she would spiral out of control because her greatest fear was coming true. Turns out, she was the one who took it best because she asked a gazillion questions and we answered honestly but in a positive way. For her, the "unknown" was her greatest fear (i.e. just leaving the house, getting in a car accident and never coming home). Since then, her and I have had very frank discussions about the possibility of drying, what she would do, and we talk through it. Just the other day she said "you know, any one of us could get hit by a bus and die in the blink of an eye. It is no different with you. If you die from cancer the only difference is that I had time to prepare."

This leads me to the other two kids, who are older than her - they don't want any details. They bury their head in the sand, know when I go in for an operation, know when I have chemo but really aren't interested in the details. I often ask my oldest daughter if she wants to talk, and she says "no, I know what I need to know". It is one tough road to haul, and I empathize with anyone having to explain to young children. I guess my only suggestion (from my experience) is to tailor the discussions to each child's personality and it is OK to have different conversations with each child. We all handle stress and worry differently. You know your child(ren) better than anyone and you will instinctively know the correct way to handle.

I am with Nik though, I am not going to focus the conversation on dying until it becomes imminent. I have told the kids "this damn cancer is going to kill me someday, unless something else kill me first. Meaning, I could still get hit by a bus or I could be cured. Who knows!!!!!!
10/9/14 DX Age 50 - MSS
10/23/14 - Colon Resection - Stage II - 0/15 lympth nodes
12/30/14 - Stage IV - 1 liver met 2cc - Liver Resection - No lymph nodes and margins clear
3/10/15 - peri mets
3/15 - Folfox with Avastin - 7 tx
7/15 - HIPEC - 2 peri mets
10/14 - resection of abdominal met
11/12 - 5FU

PEEJAY
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Re: When to tell children your dying?

Postby PEEJAY » Sat Sep 26, 2015 6:32 pm

I couldn't wait to tell my daughter. I had been in and out of the hospital so much that she was as curious as everybody else and I felt like she had the same right to know that they did. We told her that I have cancer, that I'm going to be in the hospital a lot trying to get better, but that I will probably die from it, though I'd try to make it as long as possible. She has tons of questions all the time but, like the rest of us, she lives her normal life as much as possible despite this coming over us.

I have read things written by children whose parents died without ever telling them they were sick in the first place. It seems that the kids overwhelmingly agree that they wish they had known all along. Being blindsided usually seems to have traumatized them and, in some cases, caused a lot of resentment.
Age 33
Stage 4 CC with 20+ mets to liver 1/20/2015
8 Rounds Folfoxiri feb - april 2015
Colon Resection 5/2015
Permanent Colostomy
Peritoneal Carcinoma found
Folfiri + Erbitux 6/2015 - 9/2015
Angiomapping for Y90 9/24/2015
Y90 Treatment 10/13/2015
Power port re-placing sched. 10/23/2015
Due back for chemo 10/29/2015 (right before trick or treating!!!)
11/26 Chemo not working
My colon cancer podcast "I'm Dying Here" in iTunes: https://itunes.apple.com/us/podcast/im- ... 1035722798

mariane
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Re: When to tell children your dying?

Postby mariane » Sat Sep 26, 2015 7:08 pm

Cherie,
I have 6 years old twins. I try to show and tell my kids every day how much I love them. I tell them that my love is eternal, wherever I am/ I will be still will love them. I would write and record as much about myself as I possibly could so they would know me better when they grow older. I would stress how much I love them. I would make birthday letters for them. I would not like to vanish from their lives. When I see my death imminent I will tell my kids to prepare them. We are devout Catholics so we often talk about God, heaven, eternal life etc. My kids consider God and heaven real things. They naturally bring up these subjects in every day conversations. My daughter asked me one day whether I liked swinging on the swing when I was little . I said that I loved it and would love to be a little girl on the swing again. She told me with her bright smile that we will both be little girls swinging in heaven. I run away crying... On the other day she told me I will live long life here on earth and that she is praying for my health. She brought this subject again out of the blue smiling. I think we should make each day we have with our kids special so they will have good memories of our time together. 6 years old understand more than we think. They overhear us adults talking, they read so much from our emotions. It is impossible to hide emotions completely. I think we should live as normal lives as we possibly can without concentrating on cancer, death. I try to fight to prolong my time with my children and I try to keep hope. I also think reading your older posts that you should pursue aggressive treatment as well as check your MSS/MSI status as DK 37 suggested I strongly believe that hope can add us some time. I will pray for you every day.
mom of now 11 years old twins, dx @ 40 in 6/2015 with upper rectal cancer, 10+ liver mets, CEA 140
chemo: 8/2015 - 10/2016 - 4xFOLFIRINOX, 2xFOLFOX, 8xFOLFIRI, 10x5FU, HAI pump -12xFUDR
4 surgeries, complete pathological response
CEA<2 since 10/2015
NED since May 2016

I praise God for every day with my family!

PainInTheAss
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Re: When to tell children your dying?

Postby PainInTheAss » Sat Sep 26, 2015 7:55 pm

Cherie wrote:When do you tell your children your dying?

I have a six year old. My husband and I are arguing over when and what to tell my daughter.



What does your husband want to do and what do you want to do?

Nobody in my family knows I'm a IIIc. Nobody knows a lymph node that lit up was too close to the spine to be removed. They think I'm a "stage III" and I have a great chance of being cured. My risk of recurrence is much higher than they think. I have always protected my children from worriesome things they didn't need to know just yet. When my house went into foreclosure when they were young, they had no idea. I filed bankruptcy to stop it but found out the IRS had put a lien on the house for my ex's back taxes so I just let it play out. This went on for almost a year, with me bearing the burden of the stress on my own. In the end, they thought we just moved. They know now.

I agree that kids are strong and honesty is important, but should a kid be told their mom is probably going to die 5 years in advance? I wouldn't tell them that and put a cloud on all the time you're spending together. And they might think about a dead pet and imagine their mom in a cigar box being put in a hole in the the ground in the backyard. It's difficult to know what a child thinks death means at 6. I think you are right to feel hesitant to just unload the full truth too far in advance. But, also, don't be afraid for her to ever find out the truth or to try to hide it when it's obvious. My kids will know if I have a recurrence. I will tell them, but I won't tell them I'm dying until I've run out of treatment options. Kids are tough, so she will be fine no matter how you handle this. But I think you should get an outside opinion to help you both get on the same team with how to approach this.
47yo single mom of 4 (24, 21, 18, 16) at Dx
6/13 - RC T4b IIIc 5LNs on PET CEA 5.4
8/13 - Finish chemorad
10/13 - APR/hyst+ovaries/perm colostomy 2/12 nodes+
6/14 - Finish Xelox 6 rds
1/15 - CT clear CEA 0.2
10/15 - CT/MRI clear CEA 0.7
4/16 - CT clear
10/16 - CT/MRI clear CEA 0.6
5/17 - PET clear? Follow up MRI to verify inflammation

Val*pal
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Re: When to tell children your dying?

Postby Val*pal » Sun Sep 27, 2015 5:28 pm

I would consult with a child psychologist for some guidance.

However, I agree with JulieW. Kids need to know what is happening. Obviously, how you tell them that you are dying matters, so that's why I suggest you speak to a professional.

If you don't help prepare your dear daughter, she is going to have a much more difficult time adjusting. Also, by not discussing it, the silence makes "death" unspeakable and much more frightening than it is. We all die, and it is terrible that your daughter has to learn this at such a young age, but it is what it is. My dad had a life threatening illness when I was 6, and I think that because he and my mom were open about what was happening helped me deal with it. He actually managed to live another 9 years, but I didn't have to "imagine" what was happening. Kids' imaginations go crazy under stress. As little human beings, kids do their best to "make sense" of why something is happening. It's much better if that sense of understanding is based on fct.
DH dx'ed May '11, age 62
Jul '11: resection Stage IV
10/11: 6 mo Folfox
8/12:thyr canc, surg/tx
2/13: peri mets
2/13: Firi/Avas
6/13: Ok
8/13: break
10/13: Lung, peri, mets
10/13: Firi/Erb
1/14: Erb Fail; spread
5/14: Tx stopped
6/20/14: At rest

Julie YW
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Re: When to tell children your dying?

Postby Julie YW » Mon Sep 28, 2015 9:30 am

I think this is a fascinating discussion.

For those who don't think they'll tell their children about their death until it's imminence, my question is how do you define "imminence" and whether that would be sufficient time for them to prepare. I'd rather be on the safe side and give them lots of time to prepare and then if my death doesn't happen for much longer than expected, great. IMHO, it's good for them to understand from an early age that death is an inevitable part of life, that it is part of the life cycle for all creatures and plants. I just don't think one should underestimate the resilience and intelligence of children. And in my case, I think if you are truly honest with them, they and their wisdom can be even more of what keeps you going.
DX July 2013, 37yo
12 of 68 LN
Stage IV w/ drop peri met
Folfox 8/12/13
Clean scans 1/24/14
Rising CEA 2/13/14
HIPEC 3/13/14
Folfiri 4/21/14
Recurrence in lungs 12/19/14
Xeloda & Avastin
Follow my blog: http://julieyipwilliams.wordpress.com/about/

Carolinagirl
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Re: When to tell children your dying?

Postby Carolinagirl » Mon Sep 28, 2015 2:10 pm

I hate that we even have to have this conversation, but I agree that it is helpful. Julie YW, I feel like you are a bit farther along than I am in being able to process this aspect of our common situation. I wish I could get to the point where you are because, intellectually, I feel like you are correct. I am just having a hard time getting there emotionally.
My kids know that I have cancer, that it has returned and spread and that we are doing everything we can to keep it at bay. They know that right now, the doctors can't find any cancer, but that does not mean that it won't come back. They also know people (children even) who have died of cancer. So they get the serious of it, but I have yet to say "Mommy will likely die from this cancer." Perhaps because of my own denial of that statement.
I do plan to tell them that once we know for sure that that is an inevitability. So I guess that goes to your imminence issue question. I have always told my husband that we could have this conversation, in conjunction with our child therapist, when we know that I have unresectable disease. My, perhaps naive, hope is that I am being monitored so closely that I will at least be given a couple of months on some second or third line chemo to be able to prepare them more fully for my death. In the meantime, I am working on videos, documentation of my life etc. My doctors have told me that "they do not know" what will happen with regard to my disease. And my child therapist says that kids like the age of mine (8 and 5) are old enough to handle some ambiguity. That the reality is we just don't know, but we are doing everything we can. But it would NOT be good to tell them everything is going to be fine and that mommy is finished with cancer. That would create major problems obviously.
I just cling to this idea of giving them as many "normal" years as possible. I was extremely lucky in having minimal side effects from chemo/radiation etc. No hair loss, outwardly visible signs of cancer etc. I am terrified of blowing up their safe bubble. But I know that you are correct about their resilience and strength. I think about this/pray about this a lot.
So thank you everyone for your thoughts and advice. I really appreciate all feedback and opinions.
Natalie
12/12 colon resect. Stage IIIb 35 yo
KRAS mutant, MSS
1/13 Folfox
11/13 local recurrence pelvis
12/13 Folfiri + Zaltrap x 4
2/14 xeloda + rad x 28
5/14 lung mets/resection
6/14 Irinotecan/5FU
9/14 Posterior Pelvic Exenteration
10/14 Xeloda/Avastin
11/15 peritoneal mets
FOLIFIRI + zaltrap


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