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ccox

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This is my first post. Unfortunately, it looks like you'll be hearing more from me. My mom has a diagnosis of ALS from her primary neurologist, and will be visiting an ALS clinic in the next few weeks for an official "You have ALS".
My question---what to tell my kids? They've obviously noticed that grandma is sick. Since ALS is terminal, but sometimes not for a few years, I don't know what to tell my kids. They are ages 15, 12, and 8.
The only other death they've been close to was a very dear friend of the family that was diagnosed with cancer and died within 6 weeks.
Any thoughts would be much appreciated.
Carla
 

brooksea

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Carla,

Sorry to hear about your Mom.

I have a 6 year old and my husband has ALS. I have discussed with the social worker at the ALS clinic how to go about telling our child.

Since this isn't an immediate death sentence, as each individual with ALS varies as to how long they will live and what quality of life they will have, I was advised to simply let my son know daddy is sick. With your children being older they will obviously have more questions than a 6 year old.

This may be helpful:

(from ALS Georgia website by Sharon Rugg LCSW)

"Common questions that children often have when someone close to them is seriously ill are: "What is wrong with him?" "Did I cause it?" "Can I or anyone else in the family catch it?" "Will she die?" "What will happen to me?" These questions are tough ones, but need to be addressed for the emotional health of the child and family.

As a former hospice social worker and former Children and Family Counselor for The ALS Association of GA, Inc., I have worked with many families struggling with how to answer these questions. As an experienced play therapist, specializing in issues of children’s grief and loss, I assembled a collection of tools and techniques that have been effective in my work in helping children through these difficult times. The title of this new resource is Our ALS Family Playbook: Activities for Helping Our Children Cope."

You can contact her to buy the book ( I think it's $25.00 ) at [email protected]. I haven't bought it yet, but the social worker at the clinic and the nurses at the ALS Assoc. highly recommended it.

Right now my son is not capable of really understanding what is going on. He does understand about the separate issues, such as weak legs and tiredness. I may need to get the book later.

Hope this helps.

cj
 

CindyM

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Hi Carla-sorry to hear about your Mom. You and she will have a lot of questions as this settles in so don't hesitate to fire away! The folks here are great. I saw another resource for helping kids deal with ALS in a loved one but can't seem to put my finger on it right now. Let me keep poking around and I'll post it as soon as it surfaces. Unfortunately my computer is beginning to look like the top of my actual desk...not a pretty sight!:)

Anyway, welcome. Cindy
 

MarciaA

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Carla,

I'm so very sorry about your mom's diagnosis! I, too, struggled with what and when to tell my two daughters (now 7 & 10) when my sister was diganosed in Feb of 2006. At first we told them a little bit about ALS...losing the ability to walk and talk...but we always stressed to them that no matter if Kathy was in a wheelchair or using a computer to talk, that she would still always be the same wonderful person...the packaging would just change a bit. As Kathy progressed through her ALS, we talked more and more about what would happen...welcoming any questions that they had about ALS. It wasn't until last fall that one of them put two and two together and asked, "If Kathy's muscles won't let her talk or eat...then how will she breathe?" That's when it became clear to them what was going to happen in the end. We all cried for quite a while, but then stressed how important it is to cherish every moment that we have with Kathy and to live every day to the fullest.

I'm not sure if this helps you or not, but this worked well for us. One of our school social workers also provided us with books called something like "When a relative has a serious illness" or something like that. The books are fabulous and help the children work through and embrace their emotions and all the changes that are taking place in their lives. (good for adults, too! :))

Good luck with everything! I'm sure others will chime in their ideas as well!

Marcia
 
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Hi Carla

I am so sorry you and your children have to go through this. I would like to share our experience with ALS and my children. My dad was diagnosed one year ago (yesterday to be exact) and I have two young children (ages 8 and 5). Last summer, I spoke with a child psychologist on the approach I should take when dealing with my kids on this issue. She said the most important thing is to be honest because our kids figure out the situation as much by what you don't say (our actions) as spoken word. Like Marcia, I started with Grandpa has a disease and he is getting weaker. I also had been advised to not bring death up immediately since my dad's disease would most likely not cause immediate death. Probably not a month went by and my 8 year old (7 at the time) asked at the supper table if grandpa was going to die from this disease. Again, we were honest and said yes..that was really hard as my 8 year old has been especially close to my dad. Since then we have had many talks about ALS and how it is affecting my dad (sometimes with lots of tears from both of us). I believe my youngest just doesn't have the mental maturity to understand the impact of ALS beyond today. For our family, I think we began the grieving process with my dad's diagnosis and it continues with each loss we have experienced along the way. It is a tough task to help our children through their grief when we ourselves are grieving for the losses that ALS brings to our loved ones lives sometimes on a daily basis. Regards, Shelly
 

ccox

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Thank you everyone for your kind thought and ideas. I had decided that I won't bring up death unless one of them specifically asks. I'd imagine it will be the 12 year old---she's an "old soul" who is wise beyond her years. Unfortunately, she is the one I predict will feel the most emotion about it.
Thanks again,
Carla
 

liz

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Carla -

If you tell your kids that your mom has ALS, don't be surprised if they do some research online and find out about the mortality issue that way.

Liz
 

sunnydays

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Hi, Carla~

I found a book on Amazon.com titled ALS- Lou Gehrigs Disease written by Mary Dodson Wade.
My daughter was 13 when her dad was diagnosed. She had so many fears and questions but only wanted little bits of information at a time.
This is actually a great little book. It talks about different people suffering from ALS, medical research, and has an informative section about the actual damage done to the nerves with sketches and easy to read explanations.
Just a thought. Our hearts are with you.
 

kfarrald

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Other books that may help

:mrgreen: My children are all grown now, but I can remember having a similiar problem in the early '80's. My third child, Daniel, was only 3 when his grandfather died in 1982. He also experienced the death of my grandmother and a very close neighbor in January 1981.
Daniel had a congenital heart defect and had been through 2 heart surgeries. He almost did not make it to be a 3-year-old. But later that year his baby brother was born and he also almost died, too. A month later my father died and 8 months later my husband had to be hospitalied while we were on a family vacation. I did not realize how much a preschooler can comprehend until I asked Daniel if he wanted to see his father in the hospital. He replied "NO! Chldren go to the hospital and come home, big people go to the hospital and die." His father, Rowland, did come home.
I knew I had to find something to help Daniel understand. The two books which helped me deal with Daniel and my own feelings were: "When Bad Things Happen To Good People"; and "The Fall Of Freddy The Leaf".
I learned to answer truthfully any questions I could and to find the answers if I did not know.
I have been smacked in the face many times by reality, but I always took my children's thoughts to heart.
Daniel also saw his grandmother dying from a stroke. She was on her last day, but she was in a coma. She was having breathing difficulties. Daniel (age 12, 1991) wanted to see her. His words were, "She looks so peaceful and if this is what death is, I am not scared."
In March of 1993 Daniel died, but in those 14 years Daniel taught our family how to live and appreciate the moments we have together. Now that my husband has ALS, we focus on what he can do and find ways to celebrate each day we have together. Granted we have stumbled many times over the last year, but we find ways to pick ourselves up, dust ourselves off and continue our journey.
I have been told many times in many ways that the end product or destination is not the important part, it is the process or journey to get there that is the good part.
I hope that all the PALS and loved ones find the good in this new journey that has been given to you and that when the destination is reached, you can look back at the good memories.

Kathy
 

sufernan

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the grieving process and kids

My son was only 15 months old when his dad died. I had a really hard time finding help, even books, about how small children grieve or how to help them. After Daniel died, my son stop talking, it is only now, almost a year latter, that he started to make an effort to talk again. We went to see a Social worker that explain small children can feel how adults are grieving but do not really understand - to him his dad was just in a different room. If you have any ideas, books, or advice in how to help small children with the grieving process, please post them!
Sunny
 

sufernan

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In March of 1993 Daniel died, but in those 14 years Daniel taught our family how to live and appreciate the moments we have together. Now that my husband has ALS, we focus on what he can do and find ways to celebrate each day we have together. Granted we have stumbled many times over the last year, but we find ways to pick ourselves up, dust ourselves off and continue our journey.
I have been told many times in many ways that the end product or destination is not the important part, it is the process or journey to get there that is the good part.
I hope that all the PALS and loved ones find the good in this new journey that has been given to you and that when the destination is reached, you can look back at the good memories.

Kathy[/QUOTE]

Kathy, you have gone through so much - you must be an woman and your family a group of amazing people. I am thinking about you all and I send you love and prayers. It is a blessing to meet people like you in this journey of live.
Sunny
 
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