discussing terminal illness with children

[Eagle]

A close family member has just been diagnosed with terminal cancer. For those who have been through this, are there any books you can recommend for helping children through this time? Ages 4-10. Or for adults for that matter? I am a complete mess. I don't know how to talk to them when I can't even keep myself together.

 

Is there anything you wished you did in that remaining time, or anything you are glad that you did do?

 

Is there a good resource to help with making a memory journal or something like that? Something that will help me ask the right questions for my loved one to share their stories?

[Ravin]

I haven't had to deal with this specific topic with kids, but have had to address s*xual assault of a child, mental illness, suicide, serious illness (cancer, not terminal) and going to jail/prison with my kids at young ages (mostly DD; family drama seems to have calmed down by the time DS was old enough to talk to about anything).

 

I've found that being matter of fact, answering questions, and not flooding them with more information than they need/want to process what's going on is the way to go.

If the kids are particularly close to this family member, a counselor might be helpful, for the family and/or as individuals. The same is true for you. A support group or counseling might help you both find ways to cope yourself and to help your kids through this trying time.

 

I'm so sorry your family is experiencing this.  :grouphug:

[That70'sLisa]

I haven't had to deal with this specific topic with kids, but have had to address s*xual assault of a child, mental illness, suicide, serious illness (cancer, not terminal) and going to jail/prison with my kids at young ages (mostly DD; family drama seems to have calmed down by the time DS was old enough to talk to about anything).

 

I've found that being matter of fact, answering questions, and not flooding them with more information than they need/want to process what's going on is the way to go.

If the kids are particularly close to this family member, a counselor might be helpful, for the family and/or as individuals. The same is true for you. A support group or counseling might help you both find ways to cope yourself and to help your kids through this trying time.

 

I'm so sorry your family is experiencing this.  :grouphug:

 

Agree with bolded.

 

 

Also so very sorry you are going through this. For us, doing the same things we always did with the person seemed to be the best, as well as simply taking pictures. I was in no state to organize/ write but simply looking at the pictures and talking about what we had done seemed to help with memories.

 

I never really found a good book. Some just simply weren't my style, and some didn't line up with our beliefs.

 

:grouphug: and prayers to you and your family.

 

[madteaparty]

I am so sorry :( I also have no experience because the only people my children have lost are people whose time it was.

I don't think it's specific to your situation, but for the younger I've heard this book recommended "Cry heart but never break". Pre read, obviously.

[prairiewindmomma]

(edited for privacy)

Edited March 26, 2017 by kbeal

[East Coast Sue]

When my mom was diagnosed with terminal cancer she didn't want me to tell my kids- she felt fine and looked great. That was hard. I honored her wishes for a couple of weeks then I let her know that my kids needed to know (ages 5, 10, 12, 14 at the time). She died 11 months after her diagnosis. My younger kids had questions about death/cancer and my older ones needed time to process it. I wish my mom would have talked to my kids about her illness but she never did. She hid her pain & suffering from them as best she could and I think it just made it so hard for all of us. Sometimes I think that the greatest gift she could have given us would have been to let us be sad with her our help comfort her.

 

 

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[barnwife]

We are facing this situation. 

I am not looking forward to telling our children how sick grandpa is. (They are 6.5, 5, 3.5, and a baby.) One of our goats died this week and the 6 yo is devastated. Seeing his reaction to his goat dying makes knowing that I have to do this even harder.

I am sorry you are dealing with this. I will be following this thread for ideas.

[clementine]

:grouphug:

[Guest]

Our patient did not want contact with the children and did not allow contact after diagnosis. We explained the illness and that the patient preferred to be remembered as a healthy individual. Later, we explained the risk factors. There wasn't much sadness as their friends gps had passed,and they understood that's how it is...time is up and so forth per the religious beliefs.

[TravelingChris]

Kids are very different in their reactions to things.  In some ways, I think it helped that they all had experiences with animal loss.  My kids were 7 and 3 when their grandmother died.  We were living on the complete opposite side of the country when she got ill.  The rest of the family told my dh not to come while she was still alive because they thought (wrongly, of course) that she would die if he came, but would not if he didn't come.  (She had a very serious heart attack and died from another heart attack a week and a half later while still in the hospital. We were in communication with the hospital and we understood how serious the situation was but his brothers did not and his father went along with the brothers).  I remember my kids being a bit sad but not any more so than with pet passing. OTOH, when princess Diana died the following year, somehow my oldest developed an intense obsession for a bit about how planes carrying his Dad might crash, how we might crash, etc.  It didn't last all that long but somehow it just affected him that younger people die too and he felt that all kinds of things possessed risk- which they do but relatively less risk that dying at an older age after having bad health,  It did help him for me to get out statistics and show how safe plane travel was because he was most worried about his dad who traveled a lot in the USAF.

 

So matter of fact is my recommendation plus any religious beliefs that you have that may be helpful (with a big warning to not go there if you have beliefs that said person is not going to heaven for whatever reason.)

[Guest]

I am so very sorry. I think it is most important to be factual and clear, not euphamistic and vague. So, it is better to say, "Grandpa's body isn't working correctly anymore; he is very, very sick. The doctors will help him feel a little better, but he will die," then it is to say, "Grandpa has a big boo-boo and he will have to go to heaven some day."

 

I think it is better to be communicative, even if you cry, even if it's hard to say. When my grandfather died (I was 11), truly the worst thing was that NOBODY spoke with me and I was not given an opportunity to go to the funeral. I was left babysitting two younger children in the family and had no idea I was missing the funeral. It was very hard for me to come to terms with my grandfather's death and I believe it was largely due to the adults not talking to me or including me in any information.

[happypamama]

I am so sorry. :(

 

Is the family member working with a hospital? (I'm really not sure how it works when the cancer is terminal.). If so, ask their social worker or child life specialist. We haven't had the cancer diagnosis, but when our infant was in the NICU, the SW and CLS had age appropriate explanatory materials for our little ones geared to that situation.

 

I would expect to hear questions about whether other family members are going to die or if the child will, as well as whether the person will come back after death. We told our children only what they needed to know, and then followed their lead with more questions. We explained that their little brother wasn't at the hospital anymore because his body just wore out, but we were careful not to say he was sleeping (after he died). Even so, our 3yo did ask if I was going to die (understandable because I was in the hospital before the baby died). I just answer questions simply but honestly and with only the info they need at the time.

[SparklyUnicorn]

When the shi* really hits the fan I'm usually just brutally honest.  I'm honest about what is going on, what it means, and how I feel about it.  There is no magical thing to say I don't think.  I often find my kids aren't as upset as I am. 

 

I'm very sorry about your family member.

 

 

[happypamama]

Also, I've noticed that my kids' reactions have varied a lot. Some want to talk and ask questions, and others don't. We let them know that any reaction, even no reaction, is okay. The older ones are able to articulate their questions, and the little ones only get so much. The middle one is in the stage where he gets more but doesn't always know how to ask the questions he has, so sometimes we have to flat out ask him what he's thinking.

[SporkUK]

My favourite book for discussing death with the younger age group is Lifetimes by Bryan Mellonie.  We've had this talk quite a bit with our kids as we've lost 4 family members in the last 18ish months. One, their uncle, was terminal but stubborn for two years beyond the original timeline we were given while the others were weeks to a few months from the news. One was terminal but went into hospital after a fall and was suddenly gone overnight. 

 

Talking about it at their pace was vital as well asking what they want to do. Some wanted to draw pictures and comics and make packages to send them. Also, helping them not feel guilty which took me by surprise, but the younger ones knew this was big and important and we were very sad, but obviously had far fewer memories with the family members and less connection - one of mine drew lots and lots of pictures and eventually explained that they knew the person but felt bad they didn't have a specific story or memory like her older sibling [who had spent weeks on a trip with them earlier in the year]. We had a lot of talking about how all our feelings were fine and valid and that it was understandable to not remember as much.

 

Calls and video calls have been good for balancing a desire to connect while lowering the stress of large groups. Also, afterward, gathering photos and things to display and talk over together again, particularly for the kids who for whatever reason cannot or do not want to attend the funeral. We're working on doing a photo wall of framed photos and such of all our deceased family and the family tree my spouse's aunt made. 

 

The funeral brought up a lot of thoughts as well - the last funeral was the first time my eldest had been around alcohol or people drinking...or anyone encouraging him to do so. One tipsy relative thought it was funny to repeatedly tease and suggest he try to take some from one of the adults. He was the only one there underage - my spouse's family are quite opposite to me and very against telling kids and them going to funerals. I was very proud of him repeatedly just saying he was happy with his soda when I wasn't there to stop it] and there were a lot of old stories that were interesting to explain. 

[poppy]

We went through this with my dad last year.

I told the kids he is very sick, and he's getting treatment to help him feel better, but he'll probably not get better. And that was about it.

We visited between chemo sessions when he was at his best (still pale, thin, with ostomy bag... but smiling).

We did not take them to the hospital or funeral and I think that's best. I don't think that's how my dad wanted to be remembered.

My kids were really tactful and considered it my loss more than anything. Which was emotionally a relief to me, to not have to deal with their grief at that moment.   I'm pretty sure my husband coached them.  I'd ask your partner to do the same (or do it for him, if it's his close family).

 

A week after my dad died, I overheard my daughter say "I love this scarf Grandma gave me and I'll have it to remember her after she dies, like Granddad died".   It surprised me because she didn't sound upset at all, just matter of fact. But kids are funny that way sometimes.  She's my super sensitive kid most of the time.   Guess my point is, you don't know how they'll react.