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Being Mortal- end of life care- talking to kids


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We were discussing this a bit on the BaW thread but I was hoping for a wider discussion. I just finished this book and my fil has terminal cancer. I was afraid reading it would make it harder but it comforted me and made me feel better able to help dh and face it myself as well.

 

I'm hopeful that my fil's scenario will play out like one of the better ones he talks about. It seems they are trying to do everything "right." They are bringing in hospice and have filled out the directives. His dad is ready to go now, they are not ready. Dh is accepting of his dad's wishes but his sister is mad they aren't doing another round of chemo (the cancer continued to grow even with it and the dr's said it should be discontinued). I hope she finds peace and can enjoy this final time. 

 

Dh's sister thinks it is weird they are talking about these things at all but reading the book drives home to me that it is even more important. Ignoring this will not make it go away.

 

BUT .... I don't know what to tell my kids, We've not really had to do this before, they lost their great-grandparents when they were younger. They know he is really sick. If we tell them he is going to die make it easier to bear when the time comes or not? I guess it depends on the kid and I'm not sure, it is going to be really hard as we are all close and I don't want to screw it up and make it worse.

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Tell them things that are real. They don't have to like them, and you tell them that too.

 

Death needs to be treated like part of life, because it is. Grieving needs to be treated like part of life too, because it is.

 

 

:grouphug:  :grouphug:  :grouphug:

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We just dealt with this with my Dad.  He had leukemia for 10 years, so for some of my kids, it was their entire lives.  They've seen Grandpa in and out of the hospital a lot... we visited him a lot.  But when he went on hospice at Thanksgiving, we had to talk more.  I think our openness did make things easier.  Hospice helped by making "Grandpa bears" out of my Dads' old clothes.  It's still tough, though.  Their Grandpa was such a big part of their life, and he's only been gone two weeks.  Still, we talk about Grandpa a lot....and talk about how it's OK to miss him.  My daughter talks about Grandpa Angel coming to check on us.   I'm very open with how much I miss him, but trust that we will be reunited in heaven.  

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Fil is still in home and we have been visiting, we were just there Sunday. I have a feeling it could get bad quickly but he is managing in the home for now. They think now he might have a couple of months left but I know they usually overestimate such things.

 

I was leaning towards telling them because I think it is better to know and prepare but I felt unsure, it seems conventional thought is to not talk about it and I felt hesitant. 

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We just dealt with this with my Dad.  He had leukemia for 10 years, so for some of my kids, it was their entire lives.  They've seen Grandpa in and out of the hospital a lot... we visited him a lot.  But when he went on hospice at Thanksgiving, we had to talk more.  I think our openness did make things easier.  Hospice helped by making "Grandpa bears" out of my Dads' old clothes.  It's still tough, though.  Their Grandpa was such a big part of their life, and he's only been gone two weeks.  Still, we talk about Grandpa a lot....and talk about how it's OK to miss him.  My daughter talks about Grandpa Angel coming to check on us.   I'm very open with how much I miss him, but trust that we will be reunited in heaven.  

(hugs) I'm so sorry. It does suck. FIL is a big part of our lives too, we have always lived next door to them, so we see them a lot. The girls have had lots of tea parties together. I will have to look into the teddy bears, I hadn't heard of that.

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Fil is still in home and we have been visiting, we were just there Sunday. I have a feeling it could get bad quickly but he is managing in the home for now. They think now he might have a couple of months left but I know they usually overestimate such things.

 

I was leaning towards telling them because I think it is better to know and prepare but I felt unsure, it seems conventional thought is to not talk about it and I felt hesitant. 

 

Some conventions are stupid. 

 

They'll take their lead from you. If you treat death as a normal thing to happen, they'll believe you.  If you're going to take them to the funeral, you're going to prepare them with what to expect and how they're supposed to behave. It's only polite to do the same with the rest.

 

 

:grouphug:  :grouphug:  :grouphug:

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Tell them things that are real. They don't have to like them, and you tell them that too.

 

Death needs to be treated like part of life, because it is. Grieving needs to be treated like part of life too, because it is.

 

 

:grouphug:  :grouphug:  :grouphug:

 

I totally agree with Rosie.

 

Also, I'd be kind of surprised if your older two haven't already figured out where things are headed with their grandfather.

 

I'm sorry. It's hard.  :grouphug:

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:grouphug:

 

It is hard to know how any particular child will react to this situation and I do think this needs to be considered based on the individual children involved.  That being said, having lost several close family members over the past few years (including my dad, FIL, GMIL, and my grandmother), what seemed to help the children every time we did it was acknowledging the illness and potential impending death but not dwelling on it.  Discussion, willingness to answers questions when asked, but giving them space and not constantly asking if they were o.k. was much healthier for them.

 

My biggest regret with my dad was that I did not discuss soon enough that he was getting sicker and that he probably wouldn't make it.  We didn't realize how little time we had.  We thought we had months.  We had days.  Dad and Mom went to see a specialist in another city and Dad started declining rapidly while they were gone.  Although he didn't share this with me, Mom told me later that while they were flying home Dad told her if he passed away on the plane not to tell anyone so they wouldn't make an emergency landing.  He wanted her to get home where family could help.  :crying: When my kids saw him again, hours after they had returned home, he had declined so much that DD dead stopped and just stared at him.  She was frightened and confused.  She was afraid to approach him at first.  Unfortunately, that was the last night they saw him.  He passed away just a few days later.  I was actually talking to him on the phone, planning to bring him and my mom some lunch, then bring the kids over later in the afternoon to sit with him.  I hung up the phone, grabbed my keys, said goodbye to the kids, then Mom called back in a panic before I could even walk out the door.  I only live 2 minutes away.  He was taking his last breath as I walked in their front door.  

 

ETA:  In other words, with my dad because I had not prepared them and he was just suddenly gone and I was scrambling to help Mom and deal with my own loss I was not as there for the kids and the kids were not as prepared as they could have been.  I wish we had talked before the rapid decline.  I did not make that mistake again.

 

Oh, one more thing, for DD it helped her to see Grandpa in his casket.  It reassured her that he was at peace and she was able to say goodbye.  It meant a lot to her and she thanked me for letting her see him.  

 

Hugs to you and your family.  Best wishes.

Edited by OneStepAtATime
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...what seemed to help the children every time we did it was acknowledging the illness and potential impending death but not dwelling on it.  Discussion, willingness to answers questions when asked, but giving them space and not constantly asking if they were o.k. was much healthier for them.

 

 I agree.  Death is such a sad, yet unavoidable part of life.  An opportunity to take some of the shock out of the processing was helpful for me growing up and, seemingly, for dc.   Being able to process impending death helps one learn how to deal with it going forward.  In my experience, this knowledge of impending death allows for discussion that may not come later d/t the emotions of dealing with the actual death.

I am sorry your family is going through this now.

:grouphug:

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Tell them things that are real. They don't have to like them, and you tell them that too.

 

Death needs to be treated like part of life, because it is. Grieving needs to be treated like part of life too, because it is.

 

 

:grouphug: :grouphug: :grouphug:

I agree with this so much. My parents are alive and well, but our kids know that they will die at some point, and they understand that everyone dies. They know what a funeral is, what it means to be cremated or buried, what a mortician does (my grandpa was a mortician, so I guess I may be more comfortable with death.)

 

We were even upfront with our kids about how long our dogs will live.

 

ETA: I am very sorry that your family is dealing with loss. It's hard.

Edited by Homebody2
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Fil is still in home and we have been visiting, we were just there Sunday. I have a feeling it could get bad quickly but he is managing in the home for now. They think now he might have a couple of months left but I know they usually overestimate such things.

 

I was leaning towards telling them because I think it is better to know and prepare but I felt unsure, it seems conventional thought is to not talk about it and I felt hesitant. 

 

We've only dealt with the death of family pets. Each child reacts differently and expresses their grief differently, and what they talk about with others differs as well. Our boys talked with their male cousins, and they were more practical and technical about details, like food bowls and stuff. Our boys did miss their pets, and they said they were sad, but there wasn't an outpouring of tears. My dd cried a lot, and her female cousins were hugging her and crying, too.  

 

 

So sorry you are all going through this. ((hugs))

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The kids have been to visitations and funerals. They have had animals that died and have helped butcher animals even (well the older ones). But they have not had anyone so close pass away. We have told them he is sick but just found out he was terminal a couple weeks ago and the appointment yesterday show that things are going to be faster than they had let on they would be by a good measure. We've been open about such things and they've dealt ok but boy, this one, really sucks. Then added to it the prospect that not only will Papa be dying soon Granny will likely be moving. UGH

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I am sorry you have to deal with this. I agree with Rosie that death needs to be treated as part of the cycle of life. It is sad but inevitable that everything that lives will one day die. Your children might surprise you - sometimes kids seem able to handle death without the fear and anxiety that a lot of adults get tangled up in. We discuss death matter-of-factly but emphasize that the joy and wonder of knowing the person (or animal, as the case may be)makes the sorrow we feel upon their death bearable. Good luck.

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Tell them things that are real. They don't have to like them, and you tell them that too.

 

Death needs to be treated like part of life, because it is. Grieving needs to be treated like part of life too, because it is.

 

 

:grouphug:  :grouphug:  :grouphug:

Just wanted to reiterate this.  Rosie said it so well.

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I’m sorry your family is going through this. My kids had two great-uncles they saw at holidays pass away within a year a few years ago. And now my grandma, who they absolutely adore, is going home for hospice care. I’ve been going to the hospital a few times over the last week, so they knew she was ill. We made the decision to tell them that there isn’t anything more for the doctors to do but keep Grandma comfortable. I don’t know if we were too open, but I did tell them that Grandma said she’s looking forward to watching over all of us with my Grandpa who died before they were born. I also told them about Grandma receiving the anointing of the sick and how she was joking with the priest. They want to see her, but so far she has said she doesn’t want the great-grandchildren to see her as she is now. We’re hoping she will change her mind, but we’ll see. It’s hard to know the right thing to do.

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So when my Dad went on hospice, we did say.... Grandpa is going on hospice, which is for people who are going to die soon.  The nurses and hospice workers will make sure that Grandpa is as comfortable as possible during his last weeks.   We live 1-1/2 hours away, so i would ask them.... I'd like to go see Gramps today, are you OK with going?? Etc.  The kids were much more comfortable visiting him first in the hospice in-patient place and then at home vs. the hospital.  it was a much more peaceful situation.  When he was at home, they would actually take turns sitting with him, getting him drinks, watching golf or TV with him.  It was voluntary and after he died, they said how glad they were that we got to spend so much time with him and that he was at home.

 

They asked what happens when people die, and I said nobody really knows, but this is what people who have had what they call near death experiences say... and we talked about that.  We talked about all the people and pets Grandpa would get to see again, and that helped too.  His brother died two weeks prior, so they were happy they'd be together.  They were also happy Grandpa would see his favorite dogs. 

Edited by umsami
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It is hard when grandparents or other relatives experience sudden decline and you are not sure what to share with your kids.

 

Although my kids haven't experienced any close family members dying, 3 years ago I had 4 friends close in age to me die of cancer, 3 of whom had kids that were around the same age as my kids.  We talked a lot about what was happening, especially since there were ups and downs for several of them (the one they were closest to actually was in remission, was diagnosed with a second type of cancer and despite a bone marrow transplant that was successful, eventually died as the chemo etc was so hard on her organs that they shut down).

 

One woman was a neighbour whom my kids had known since birth and we had spent a good amount of time with - she was childless but was the most vivacious fun bubbly person I've ever known.  She spent the last 3 years of her life after her diagnosis living as much as she could and sent out regular emails about her adventures.  Because we were home during the daytime thanks to homeschooling, she was able to come over and visit us in the afternoons when she was feeling well enough to walk down the block after any procedures.  So the kids got to see the progression of the disease for her but also got to see a very positive spirit.

 

I didn't want to hide things from them, but I let them lead with questions.  I let them decide if they wanted to attend funerals.  They have each selected a memento that belonged to the two people they were closest to that let's them remember them and they still cherish those mementos.

 

My parents are starting to have health problems despite being active and healthy to date and we are letting them know the basics at this time - what surgery is needed, what it is for, what is the likely outcome, what does this mean for their time with Grandma/Grandpa.  

 

All this to say, I think it is important to talk to kids about these things, but to gauge their ability to handle things.  I would not want to hide it altogether and I would, if possible, let them visit with relatives/friends in ill health if they so desire.

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We've been through this, albeit with older children.  None of mine wanted to talk about it, so we didn't.  That didn't mean we didn't convey the necessary information, just that we didn't have lengthy conversations.  We were totally honest and very brief.  I started with the conventional family warning "I have some sad news to tell you" and then explained the medical facts in a way appropriate to each child (one is squeamish and two are not) and said that the person was "done".  They had been through this before with beloved family pets.  People (homosapiens and otherwise) get to decide when they are "done" in our family, so that concept didn't have to be explained in depth.  An unexpected side effect of doing it this way was the support I got from my children.  They agreed that this was the right thing to do under the circumstances and backed the person up and somehow, I found that really comforting.  I still do.  I remember going through this with both my grandmothers died.  One ended her life by simply stopping eating when she was "done".  The other was unconscious and my mother and aunt had to decide whether to try to keep her alive or not.  Both happened when I was a child.  My parents told me briefly and frankly what was happening at the time.  They didn't go into a lot of details and they didn't burden me with their emotions, other than to say that letting their mothers go was hard but the right thing to do.  At the time, I appreciated their honesty and their brevity. If they hadn't told me, I think I would have known something was going on and been scared.

 

Hugs and good luck,

Nan

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When my dad died, I told my kids straight up that his situation was dire and that he was very old, would likely die, and that this was a normal life cycle that we all go through.  Nan in Mass, my dad basically stopped eating and drinking, as well; and when I begged him to eat, he sort of laughed at me and said "this is how old animals die.  How many years of college biology and you don't know this?"  I didn't really have an argument for that and had to accept it.  I don't know if telling my kids the raw truth straight up made it easier or harder on them, but serving it straight up is really the only thing I know how to do.

Edited by reefgazer
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I am sorry you are having to deal with this. 

 

I would meet your child wherever they are. I had triplets that were born alive and later died (other end of the spectrum but still a death). This happened before my living children were born. My children have grown up knowing that they have 3 siblings that they can't ever see (we have photos and video but that is it). My 4 year old is dealing with this grief now. He keeps thinking that we are going to go and get Emily (his sister). He knows she died but he isn't quite sure what that means. It has been months like this. My older son never went through any of this. Something tells me it will hit him one day, but I am not sure when that is. 

 

My point is I would tell your children that their grandfather will not be around much longer and what that means, but keep it simple depending on your child's age. It may very well be something that you have to come back to several times both before your FIL dies and after. Grief definitely happens in waves so there is no reason to believe children don't experience it like that as well. Don't be afraid to talk about your FIL and make sure your children know that too. Sometimes claming up happens and I think that is the worst. Then again that is just based on my experience. 

 

Good luck!

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You know, through our medical fiasco, people have wondered if we've been too honest with our kids, telling them too much.

 

I really don't think so.  I think being up front and honest allows them to have greater trust in you.  I think hiding information causes distrust and, overall, MORE worry.

 

In your case it is very cut and dried.  You FIL *will* die from this disease.  It is not a potential possibility if they are calling in hospice I would assume.  So, in this scenario you have two choices:

 

Begin to talk about death, why, and how this will look and feelings.

 

OR

Say nothing, suprise them with it, and at the funeral people can talk about how they saw this coming, how he was very sick, and how it was inevitable.

 

I think I'd rather be proactive and upfront and honest.  And it doesn't have to be blunt or grotesque or too much information.

 

Grandpa is very sick.  He is not sick like you or I have gotten when we've gotten a cold or the flu.  He has cancer.  Now, some people get cancer and some people get healthy again.  Grandpa's cancer has grown and cannot be stopped by medicine.  There is no medicine to heal his body.  He is going to die.  They will still give him some medicine so that he doesn't hurt and have pain, but he is still going to die and we're all going to be sad about that.  We'll miss him.

 

ETA:  AND answer any questions they have.

 

We recently just lost a loved one and it's pretty hard.  If they are very close to him (and see him often) it's good to have this discussion more than once so that they feel it is acceptable to discuss and have more discussions as they feel like it.  If they are not close, they may just take it as an, "Oh.  Okay," moment in time.  If that happens, try not to be offended.  Sometimes kids don't understand the depth of emotion their parents are feeling because the relationship is so different.

 

Edited by BlsdMama
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When my dad died, I told my kids straight up that his situation was dire and that he was very old, would likely die, and that this was a normal life cycle that we all go through. Nan in Mass, my dad basically stopped eating and drinking, as well; and when I begged him to eat, he sort of laughed at me and said "this is how old animals die. How many years of college biology and you don't know this?" I didn't really have an argument for that and had to accept it. I don't know if telling my kids the raw truth straight up made it easier or harder on them, but serving it straight up is really the only thing I know how to do.

: ) Funny guy, your dad. And wise.

 

I grew up knowing about my grandmother and knowing that animals do this but was somehow blind when my beloved very old cat stopped eating and drinking. I will be forever grateful to the vet tech who pointed out that my kitty was choosing to be done. I should have been able to figure it out.

 

There was no beating around the bush with my grandmothers. It felt slightly odd at the time, but I have been grateful the rest of my life. It has made everything to do with death easier to deal with, simpler and cleaner, somehow.

 

Nan

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Talking of books-- and I think Being Mortal is a great place for adults to start-- there are a lot of beautiful books about a grandparent's death that can help to introduce the subject if it's difficult for you to broach. (It is difficult for me to broach, and I think I am unusually frank about death and dying.) One we have found meaningful is Grandad's Prayers of the Earth, by Douglas Wood (although maybe should be previewed to make sure it doesn't go against your belief system).

 

I don't think knowing that a person is going to die makes it any easier-- in fact, we are all going to die, and it is still spectacularly &%%(*! anytime someone we love actually does it. It hurts. But the value of being honest with your kids is that they won't think they have to protect you, which I think is a real inclination of kids-- to worry that they can't burden their parents with their feelings about death because, it seems to them, it will make their parents too uncomfortable or sad. Your honesty with them will mean they don't have to hide from you. And if there's one thing that can make death less frightening and tragic, it's having someone who loves you to listen to anything you want to say about it.

 

HUGS. I am sorry you are losing your father-in-law. It is never easy. No matter how old. No matter how sick. And from my own family experience, it is absolutely natural to suffer family rifts during this time. It is easier to focus on the petty concerns and disagreements of the living than on our collective sorrow at the loss of a beloved one.

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But the value of being honest with your kids is that they won't think they have to protect you, which I think is a real inclination of kids-- to worry that they can't burden their parents with their feelings about death because, it seems to them, it will make their parents too uncomfortable or sad. Your honesty with them will mean they don't have to hide from you. And if there's one thing that can make death less frightening and tragic, it's having someone who loves you to listen to anything you want to say about it.

 

Yes.

 

Also, by avoiding talking about death I think maybe we give kids the idea that they shouldn't talk about it, that it's a taboo topic. We'd all probably be much more mentally healthy if we discussed death more openly and honestly.

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We were discussing this a bit on the BaW thread but I was hoping for a wider discussion. I just finished this book and my fil has terminal cancer. I was afraid reading it would make it harder but it comforted me and made me feel better able to help dh and face it myself as well.

 

I'm hopeful that my fil's scenario will play out like one of the better ones he talks about. It seems they are trying to do everything "right." They are bringing in hospice and have filled out the directives. His dad is ready to go now, they are not ready. Dh is accepting of his dad's wishes but his sister is mad they aren't doing another round of chemo (the cancer continued to grow even with it and the dr's said it should be discontinued). I hope she finds peace and can enjoy this final time. 

 

Dh's sister thinks it is weird they are talking about these things at all but reading the book drives home to me that it is even more important. Ignoring this will not make it go away.

 

BUT .... I don't know what to tell my kids, We've not really had to do this before, they lost their great-grandparents when they were younger. They know he is really sick. If we tell them he is going to die make it easier to bear when the time comes or not? I guess it depends on the kid and I'm not sure, it is going to be really hard as we are all close and I don't want to screw it up and make it worse.

 

We had a great grandma and a baby die within a few months of each other and I found my kids actually had a fairly easy time grasping the facts of life. We were honest, but not graphic. We weren't embarassed talking about things. Our children saw Grandma the day she died. They held the dead baby. I sort of believe that kids sense their parents' discomfort or lack thereof and mimic it.

 

I think we said, "The baby has a lot of problems. He's going to likely die." We talked about our spiritual beliefs about life and death. 

 

I found most of the children's books we were given about life/death were really weird and we just tossed them.

Emily

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One thing I’ve not seen mentioned. People, relatives I mean, can get a little weird around these times. So watch for that. My kids have some really awful memories of relatives behaving badly under these circumstances. It compounded their grief to see adults acting childishly. I didn’t want to have to explain all that but we had to. Don’t expect others to behave perfectly but be alert that things could get weird and your kids may need to be ushered to a restaurant or quiet place when the emotional tide rises too high in the family.

 

Hope this isn’t the case for you but know it’s not abnormal.

 

 

Sent from my iPhone using Tapatalk

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(hugs) to all thank you for sharing your stories.

One thing I’ve not seen mentioned. People, relatives I mean, can get a little weird around these times. So watch for that. My kids have some really awful memories of relatives behaving badly under these circumstances. It compounded their grief to see adults acting childishly. I didn’t want to have to explain all that but we had to. Don’t expect others to behave perfectly but be alert that things could get weird and your kids may need to be ushered to a restaurant or quiet place when the emotional tide rises too high in the family.

Hope this isn’t the case for you but know it’s not abnormal.


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Yes, I think we've seen a bit already and I've seen how things go enough to expect things to be rough, it is more likely than not.

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My kids have been through the deaths of great-grandparents when they were late elementary aged and a paternal aunt a few months ago. Tell them. Creating a fantasy world where everything is fine or better than it really is does them a terrible disservice. Just tell them the truth.  "(Insert name of this family member here) is going to die soon.  We need to do what we can to make the days they have left the best they can be." 

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:grouphug:

 

 

As several pp have said: you're going to have to tell them eventually.  The only uncertainty is around when and under what circumstances.  To have time to process, and to be able to be intentional with time with the dying person... is a gift, to kids as surely as to adults.

 

We've gone through this twice, once with my MIL nine years ago when the kids ranged 5-13, and this year with my father when they were commensurately older.  It is hard.  We told them as much as we knew, as early as we knew it, in as simple words as we could find.  And then left them alone, to come back and ask questions if/when they wanted.  I recommend telling them separately, so each has the chance to respond unfiltered, without gauging against siblings' response.  We let them choose whether/how much to visit.

 

 

 

....  We didn't realize how little time we had.  We thought we had months.  We had days.  Dad and Mom went to see a specialist in another city and Dad started declining rapidly while they were gone.  Although he didn't share this with me, Mom told me later that while they were flying home Dad told her if he passed away on the plane not to tell anyone so they wouldn't make an emergency landing.  He wanted her to get home where family could help.  :crying: ....

 

 

That is extraordinary.  For him in those circumstances, to be visualizing that moment and how it would transpire for *her* and what *she* would need in that moment.... he must have loved her very, very deeply.

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My kids have been through the deaths of great-grandparents when they were late elementary aged and a paternal aunt a few months ago. Tell them. Creating a fantasy world where everything is fine or better than it really is does them a terrible disservice. Just tell them the truth.  "(Insert name of this family member here) is going to die soon.  We need to do what we can to make the days they have left the best they can be." 

I'm not creating some fantasy world or planning to. We've not told them everything is fine or any such thing and I didn't say we did.

 

We just found out 2 wks ago. Before we told them I took the time to think it through and get some outside opinion to make sure it was the right course.

Edited by soror
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S'ok Soror.  I got the strong impression from your posts that you wanted to tell your children right away, but that conventional wisdom said not to, so you were asking other people what they had done and asking if the hive thought it would be a bad idea to tell them.

 

Hugs,

Nan 

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I'm not creating some fantasy world or planning to. We've not told them everything is fine or any such thing and I didn't say we did.

 

We just found out 2 wks ago. Before we told them I took the time to think it through and get some outside opinion to make sure it was the right course.

 

But some people do.  I've known people who have told kids things were ok when they weren't.  I can't possibly know you personally, so I had to respond to the range of responses I have seen.  If you didn't know some people will go to extremes to avoid the uncomfortable topic of terminal illness with children, you should know it does happen.

 

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