Really Could Use Some Advice

[linzblkr]

Last week, my mother's doctor (an ALS specialist) gave us the bad news that he was sure that was what we are dealing with. It was the one thing we were praying that it wasn't. Right now, I am trying my best to hold it together and be strong for my mother brother and rest of the family, but it is so hard. I just don't know what to say half of the time. I cry a lot. Sometimes it seems like I'm drowning and don't know which way is up to get that breath of air. But while I am dealing with it like this I can't imagine how hard this is on her. My question is, I have a soon to be 9 year old little girl that loves her Grandmother more than I can ever describe. She has asked me what is going on because she can tell that something is going on. I am just not sure how to tell her or if I should even say anything yet. We are going on year three of all of the symptoms and tests. My Mom has problems walking, talking, etc. I was just wondering if there were any of you out there that did end up telling children. I'm just so unsure of when and how to do it. Any advice is greatly greatly appreciated. Thank you so much for reading this.

~Linz

 

[CoachMeg]

Welcome to the forum; although, I am sorry that you are here. You will find lots of information and friendly faces here.

My husband is the one with the diagnosis. However, our son is 10 and my daughter will be 6 next month. We have chosen to only tell them what is necessary for them to know right now. They know that Daddy's muscles are getting weak and he can't do the things that he used to do. They know he will be using a wheel chair for extended outings. As things progress, we will tell them more. My husband's father passed away from ALS. Although my son never knew him, he does know how he died. We do not want him to jump to conclusions with his Dad. There will be a time and place when it is right to tell them more.

Each family has to find their own path. We did consult with a child therapist as we did not want to do anything that could be worse for the kids. The general consensus is that you never want to lie to the kids and tell them that the PALS will get better. That creates resentment and anger.

I suggest you consult your pediatrician and/or a therapist for advice. I wish you all the best.
Love and light
Meg

 

[tdodson]

My mother was diagnosed late last year. I don't have any kids but my sister does. He is 10. She has not told him anything except Mimi is sick. Each family is different tough. My nephew has already lost a grand parent to cancer a few years ago on the father's side of the family. It would be a good idea to talk to a child therapist to see what they say.

Good luck and sorry you are here.
Todd

 

[jwife]

I agree about asking a therapist or maybe a person from your faith or religion. My husband was diagnosed 2 years ago this month. We have an eleven year old granddaughter who is her grandpa's biggest advocate. Last June, before my husband became too ill to travel, we took a family cruise on a very child friendly ship. She insisted on pushing his wheelchair wherever we went. Once when my son was putting the wheelchair in the van, she had to show him exactly how to position each part so that he didn't damage the cushion. Her comment was that her dad was just learning about taking care of Grandpa, but that she and I were old pros. I cannot tell you what a source of joy she has been to both of us in this journey of sorrow. As for details about his disease, we have not tried to hide facts from her. She knows that it is a progressive disorder that will end with death. We don't openly discuss facts, but we do truthfully answer her questions. I think it helps that she lives close and sees her grandpa often so the changes are gradual to her. She is one smart cookie and has even asked about the specifics of what causes the nerves to fail and why researchers can't determine source and replace or do something to fix the problem. I know that times will be harder for all of us as his health continues to decline, but I also know that she will be there helping and being a bright spot in our lives.
Good luck with your mom and explaining to your daughter. This is such an awful disease!
Janis

 

[LauraW]

There used to be a web site called ALS for Kids. But I tried accessing it and it isn't there anymore. We have a 10 year old who spends a lot of time with us. He knows about ALS. We told him what was happening as it happened not "what's going to happen". He suctions Mom and helps with other things too. He is a blessing and because we involve him and talk about it to him he has become part of the caregiver circle.

 

[Katie C]

My one piece of advice: do not underestimate what a nine year old can understand. She knows something is very wrong... if you don't give her facts, she will invent things to fill in the gaps. It's really very different from dealing with a very little one. Besides being a mom, and having been a CALS, I was a teaching assistant for 20 years in elementary school. By nine and ten.. they understand a LOT.

 

[Lavender Lady]

We have 2 boys 11 and 13 and at first we told them that I had ALS and slowly gave them bits of info. as symptoms developed. We have now also told them the disease is fatal and we cried and it was painful. They are doing o.k. we are also in family counseling to help them to cope and be able to share their feelings. Kids are smarter then we give them credit for and they now how to do internet research. I wish you the best none of this is easy.

 

[linzblkr]

Thank you everyone for your input. She and I found a quiet spot in the house and had a nice long conversation. She knows Grandma has ALS and since we aren't close enough to see her very often that I am sure there will be changes that seem really big to us. We cried and she asked questions, but she understands that no matter what Grandma is still Grandma and we will be ok.

 

[Marjorie R. Wilcox]

I have six grown children. I know that it is always best to be truthful without being blatant. By this I mean, the same goes for info on sex, or telling about death, or about the nuclear threat of radiation... you have to tell only what is needed. I never sugar-coated anything, but gently gave the info I had to. I never told them the medicine tasted yummy or that the shot wouldn't hurt. I told them the medicine was yukky but that they had to take it. We made funny faces and laughed about the bad taste. I told them the shot would be a pinch, but that they were tough and could take it.... I think you should make the child aware that the PALS is not well, you don't know what will happen, but they won't get better. Make lightly of it yourself. How you react will be replicated in the child. We never know how long we will last or even what a day will bring to us. Make a point of focusing on loving and helping the PALS, with dignity and peace of mind.

 

[jwife]

Glad to hear that you talked to your daughter. I think that was a very smart move. Our granddaughter spent the weekend at our house. She even choose to stay with her grandpa while I ran an errand. I am sorry that you aren't closer to your mom. I hope the changes when you see her won't be too dramatic.
Sorry that you are in this club, but know that others know what you are going through. One day at a time.
Janis