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CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
208
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Loved one DX
Diagnosis
02/2011
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US
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CA
Good morning all! I am here to ask for a little help, advice, or just a little encouragement as we debate talking with our children about ALS.

Our kids are 10 and 6. My son is the oldest and a very concrete thinker, everything to him is either black or white. My daughter is the opposite and very intuitive. We think that Ryan knows more about what is going on with hubby than he is letting on. I think part of him knows that things are serious, but he doesn't want to ask any more questions than necessary.

I should back up. On the advice of therapists, we have told the children only that Daddy has a disease that is causing his muscles to get weaker. We firmly believe that at the time of diagnosis, this was the right thing to do. Now, as he is in a chair most of the time, slurring his words, not able to do those things that he has always done, we may be doing the kids a disservice by not telling them more. We fear that this could be the last holidays we share together as a family.

This Friday, my husband has another doctor's appointment. The kids know that I am taking time off of work to take him. Of course, my husband isn't excited to go, and I totally understand that. I am not exactly excited, but look forward to picking the brain of his neurologist so that I can do what is necessary to take the best care of him. Our thoughts are that this weekend, would be a good time to tell the kids. They have all of next week off and will be surrounded by family. It will give them lots of time to digest the information and ask questions of all of us.

One other key reason why we haven't told them before, is that my father in law passed away from ALS. The kids, especially Ryan, know that. We didn't want to tell them at first diagnosis because we knew that Ryan would automatically conclude Dad was dying. Now that he is older, although only a year, we think he is better able to process it. They never knew their Grandfather, but we have spoken about him and the dreaded illness that took him.

I don't want you to think we aren't worried about Zoe, we are. But she has a special light about her. She believes in angels and fairies, and tells us when Wrigley, our first Great Dane who passed away 4 years ago, shows up to play with her in her dreams. She has dealt with death much differently than Ryan has and I think she will be a great comfort to her brother. Ryan has a tough time with the idea of spirits and believing in heaven.

I feel better just writing this out. I have read the information that sadiemae posted from the ALS organization in Canada. Definitely good stuff. But if you have any words of wisdom, I would appreciate your insight.
As always, thank you to all.
Love and light
Meg
 

brooksea

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Meg,

I don't envy the position you are in at the moment. It is sad how ALS affects each family in a different way and each family has to deal with their circumstance uniquely.

Our son was six when my husband was diagnosed and we took the same approach that you have already taken. He is now eleven and knows his father is dying, however, we've had five years to transition him to the stark truth. Now our son is resentful that his dad is being taken away, before his very eyes, in such a tortuous manner.

All I can offer is: Keep it simple, then let them ask questions as they think of them. (You already know that!)

I agree that having family around for support next week will be wonderful and very helpful in this situation. Just make sure everyone has a heads up regarding the extent of what you have told your kids.

Good luck, Meg. I will be thinking of you and your family this holiday...
 

ReneeM

Active member
Joined
Aug 23, 2011
Messages
73
Diagnosis
08/2011
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Michigan
Meg, I am sure however you approach it, the kids will be able to process it.
Just remember to tell the truth... they are both probably a lot savier on the computer than you think and will be able to find out any info you don't tell them.

My husband is progressing very fast... and although my daughter is 22 she is in her master's year of architecture at college... a tough year as it is let alone the worry she has about her father.

I try to "shelter" her from some of the daily trials and tribulations of the week but I have to say that when she is home on the weekends she is a great support and help to me.
 

Barbie

Extremely helpful member
Joined
Dec 29, 2007
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2,659
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01/2007
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FL
Hi Meg,

I think telling the kids was the hardest thing I had to do...our 4 were ages 9-16 when dad got sick and we told them the truth about a year later. I told each one privately and I think I told them that dad was not going to get better, and continue to get worse. They asked if he was going to die, and I said yes. only one of them cried...at that time anyway...I think they took it as well as they could and deal with it as best they can. Kids are tough and they are smart.

I am glad we waited until we had processed it and I am glad the telling is over now. good luck--it is a hard and but necessary .


Best always,
 

cervus

Senior member
Joined
Mar 18, 2011
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923
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Lost a loved one
Diagnosis
11/2010
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CA
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AB
Hi Meg,

It's so sad that you're all going through this. Our children were 19 and 24 when Bob passed away. My personal opinion is that you tell them both exactly what's going on. If your husband is now slurring, it would be great for the kids to be able to ask him things or talk to him about things that your husband can answer with his own voice. Children are so intelligent and like you said, they obviously know things aren't right. Yes, they are young, but they should know. What Barbie said sounds like a great approach. It'll be hard though.....Take care. Yasmin
 

Jeff Long

Distinguished member
Joined
Jul 21, 2011
Messages
254
Reason
PALS
Diagnosis
10/2011
Country
US
State
NC
Meg,
Tough chore you are facing; the prayers of many will be ahead of your talk. I am always reluctant to give advice because, although I haven't broken or lost any of my kids, I've sure messed their heads up some! I think in the future I will pay their therapist bills... out of guilt.
Anyway, I'd echo the comments above about being honest; kids are sharp and know when we're not! My wife and I told our four children (24,20,17 and 13) the day we got the diagnosis. It was emotional and sad and quite candid, but to date seems to have been the right call. My 13 year old is handling it the best, but that is very much her nature. My 17 y.o. is taking it the hardest and is doubting much of what she has always believed before this. There is no right or wrong way for our babies to deal with this.

The only thing I'd add to what the smart people have already said is this; the initial conversation will be just that, the initial conversation. Afterwards, you have to constantly assess the kids to determine if they want or need to talk about it more. We are walking the tightrope between ALS being a part of every conversation and ALS being the elephant in the room that nobody talks about.
Great that you can have extended family around after your talk with the kids... I have been amazed at the fact that each of my kids has opened up with different family members. Hope you see the same result.
Jeff
 

kmendsley

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Joined
Feb 19, 2010
Messages
431
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PALS
Diagnosis
04/2011
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US
State
CA
Hi Meg,
I would definately let your kids know..and I think this weekend is a good choice. As I work with kids everyday it is amazing how much we don't give them credit for in noticing different things and knowing what is going on. For example, just the other day my 4 yr. old piano student said to me that I wasn't happy as usual and how come I was sad. ...very elementary but you have to give it up for him to notice and care when I only see him once a week for 1/2 an hr.

Ryan probably knows what is going on and can probably see the similarities from his grandpa to his dad. Keeping the information from him at this point is just letting him know that everything is going to be okay, if we don't mention the elephant sitting in the room. This is not a good mindset ....for anyone. I would even maybe tell the kids separately at first and then bring them together...chances are they are going to have very different reactions and this could 'harm' their sibling relationship. Also, you need to tell Ryan in different words than Zoe. Ryan might even show a sign of relief as that elephant was finally noticed and you care enough about him to talk about it and listen to his reaction.

I do have a biased opinion obviously but I don't believe waiting and not telling is not the option. I was told 5 days after the fact that my grandmother had died....almost 4 years later...I am still working with issues of trust and my family not letting me know when something has happened. And, when issues come up for myself, I often find that I don't say them because no one wants to talk about them...keep that in mind as your son gets older and might need to come to your for issues or help; and thinks twice about it because of past experience of not talking about issues at hand.

As far as Zoe goes, she will not fully comprehend 'death' technically till the age of 7 according to the growth development model. Even though she sees your doggy in her dreams, does not mean that when her father passes she will see him in them too. You obviously don't have to tell her this..but keep this in mind because it is almost like she never said goodbye to the dog because she sees him at night. She doesn't at this age have the mental maturity to know the extent of death. This could be in your favor now, but later she may have a delayed reaction and grief when she reaches that maturity stage.

I hope this helps you ..and I wish you the best of luck. Sorry it is so 'teacher' like but that is what I am! :) The most important thing is communication and letting both children know that they can come to you guys at any time with their thoughts, feelings, emotions...whatever and you will accept them always. Best of luck to you and your family.

~Kel
 

susanf

Senior member
Joined
May 26, 2011
Messages
647
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PALS
Diagnosis
06/2011
Country
US
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fl
Meg,
I told my daughter the same thing, my muscles are weakening. At 12 I don't have to get into the fine points. I know my kid and I know how she processes things. For now that's what I'm going with.
 

tammyg

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md
WOW. I remember when Edbar had to go through this with his daughter, I remember when I was told by my dad. Maybe you can throw in there that nobody knows when there ticket is drawed. We could get hit by a bus tomorrow. God just don't have old people as angles but he needs moms , dads, babies ect... Just let them know they cannot get what he has so give him lots of hugs. Kids are scared of death. I don't know if the Holiday coming up is the best time. They will never ever forget the conversation or the Holiday. So sorry you have to do this when they bare so young.
 

HelenL

Very helpful member
Joined
Dec 17, 2010
Messages
1,583
Reason
PALS
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MA
Dearest Meg, so much good info for you to go through and decide what is right for your situation... I agree that they should be told separately; I waited over a year to tell my 2 younger children, until after the trip they took to Alaska. They were 11 and 13 at the time of my diagnosis, my daughter was 16. She insisted on knowing what was going on with me within a month of my diagnosis, but I couldn't tell her then. She said that she had a right to know... I told her that she did, but that I had to wait until I could talk to her about it. I told her a few weeks later, AFTER her final exams. I know she was worried, but couldn't tell her the total truth until then.

With my sons, I actually waited for a moment to segway into it... Matt came into my office saying something about Steven Hawking, who was handicapped,..... I was in my office, and paused, and told him that you know how SH is handicapped, well my doctors think that I have something similar, and that is why I couldn't walk right anymore.... and so on. I never said outright that it was fatal. Life is fatal. I told him that there was a lot of research going on, that I was in a really good clinical trial, etc. I asked him if he had any questions, and that if saw stuff that scared him on the internet, that he should come to me so we could talk about it. I swore him to secrecy until I had a chance a day or so later when I told my older son, I think we were in the car... both facing forward, easier for a boy with Asperger's to digest than looking him directly in the face. Similar talk... I remain positive with all my kids, they can see my progression. I was so worried that they would find out from some kid at school who overheard something... so I was relieved that it was done. When they asked why I hadn't told them earlier, I simply told them that the docs weren't sure at first what it was, and I wanted to wait until after their big trip so they wouldn't worry about me while away.

No one knows your kids better than you, and I would pick the target date carefully. Someone said something about not during the holidays, but maybe the holidays would be a great distraction to them, while digesting some of the info. Age appropriate info, remain positive about what Dad can still do, and the little things that they do that mean so much to him. How they can help out, kids love to feel needed too.

Good luck, keeping you in my thoughts and prayers.

Love you lots,

Helen
 

CoachMeg

Distinguished member
Joined
Mar 4, 2011
Messages
208
Reason
Loved one DX
Diagnosis
02/2011
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US
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CA
Thank you all for your positive words of encouragement and support! This is just one of the many trials we will face together as a family. I continue to believe that we will all be ok. It will take all of us more time to digest. The fact of the matter is my husband is progressing faster than the doc or we had hoped. We will continue to enjoy and cherish our time together.

Love and light!
Meg
 

NiKky

New member
Joined
Oct 18, 2011
Messages
7
Diagnosis
10/2011
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US
State
NY
As the child of someone with ALS, I can tell you for starters not to do what my parents did to me. At 23 yrs old, I was taken into a little room and told by strangers, all the while my mother stood next to me, knowing that my father had been diagnosed with this awful disease that we already suspected he had. The children have to hear it from you, otherwise, it will turn into resentment. I think the best way to explain it is to tell them Daddy is sicker than you thought and explain although the disease is different for everyone, he does have the same disease Grandpa had. Make sure they understand that this doesn't mean Daddy is dying right now and everyone is effected differently by the disease. Short, simple & to the point is the best way to go. You should answer with all honesty any questions they have. I understand that they are young but even at those ages, they are aware of the physical changes they see in their Dad. They probably even see changes in you that you may not have noticed yourself. You sound like you have a strong family bond, so I don't doubt that you all will get through this together and become even stronger. Good luck & I hope everything goes as smoothly as possible. I'll be keeping you and your family in my prayers.
 

lgelb

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Nov 5, 2009
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7,331
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Lost a loved one
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09/2009
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WA
Everyone has given great advice. I would just consider something like, "Sometimes people lose members of their family and have not had the chance to let them know how much they love them. Our opportunity now is to cherish and live fully each day we have with Dad." I agree also that the holidays would give the kids more processing time/support, a chance to ask questions and to in some way associate the disease with family time. Maybe bring out some print/digital photos/slide shows as part of the get-togethers, let the kids feel a sense of transition. It is not that the holidays are good and illness bad -- they are both pieces of what your family is and has been.
 

notgivnup

Senior member
Joined
Nov 8, 2010
Messages
815
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PALS
Diagnosis
11/2010
Country
OS
State
Darkside of Moon
Meg, just last night my 7 yr old granddaughter and I got into a discussion on death and how everything dies at sometime that is the way the Creator made things. I told her that here in this life is our school to learn all the good things we will use when we get to out real home with HIM. She then told me the progression that I would be first and then named everyone by order of age. It made it as a matter of fact, a good fact that we will all meet again and forever together in our new wonderful home. I told her I would be waiting for her and everyone else to get there. We agreed we would pick a star, our star, and when ever she looked at it I would know she was thinking of me too. It was a great conversasion and I believe she understands that this is the natural thing as our Creator planned it and He is in charge and has a wonderful place waiting for all that believe. I did not say "I am dying", but that we all do at sometime or another. That is just the way things are, like flowers and grass, animals an all. She left with a smile on her face, which made me happy. Now 12 more grandkids to go...one at a time, on their level, and not too much info. I hope this helps you. {{HUGS}}}
 

Shane the Pain

Active member
Joined
Jul 12, 2008
Messages
97
Diagnosis
05/2007
Country
US
State
CA
Hi Meg,

As an ALS patient and father of four young kids...here's what I know:

We have sat down as a family a few times now talking about Poppa dieing. I spoke about it to my two older boys about two years ago. We just did it again the other day with four kids, the youngest being five. I would encourage you to have the conversations as soon as you are up to it. Keep the meeting short.

Our family therapist told us to tell the children more than once, " What is happening to Poppa is not your fault !" That was a good one. I never even thought of that.

Try and build a conversation between them so they have a history of speaking about it together and encourage them to talk to one another.

My kids help their Poppa everyday !

God bless you and your family,
Shane the Pain
 
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