Stuck between a rock and a hard place

[Labinma]

Hi all,
Haven't posted in a while, just living life. My husband continues on his slower to average progression. He is extremely thin, but walks, talks and drives (all barely). No major assistance mechaisms have been entertained or put into play or desired at this time. He is a "don't want assistance to live this way" kind of guy (at least for now).
All this brings me to.....my twin 8 year old girls. They are currently oblivious. They are happy cheery 8 year olds enjoying their summer. I am sure they see changes in Daddy, but not enough to ask about it or inquire. We don't discuss it either.

This wonderful opportunity came about through the ALS foundation to attend a YMCA camp for three nights with other kids that have been touched by ALS. The camp is in August. I could go as chaperone. Which for me would be a thrill because I love camp and what a great experience to share this with my girls. Also enjoy any counseling or group discussions about ALS.

However, the subject has not even been discussed about Daddy's condition, illness or future. I am in a quandary.

We are a month, 3 months, or six from something turning to a point of no return lets say (walking, speech will give out or otherwise). I don't even know if this camp and its offerings in all aspects will be around next summer for my girls, Finally to the BIG QUESTION: is it too early to participate in this kind of thing? Obviously, addressing Daddy has ALS would finally be broached.

My husband struggles when is to tell them, and worries that it might be too soon or unnecessary right now to bother them with it. Hence the camp in August wouldn't be best timing so to speak.

I grew up with a Dad that told me everything good and bad up front. There was no candy coating or keeping me in the dark about heavy topics basically. i.e, he was upfront my parents were divorcing whereas my mother always tried to hide the fact it was going to happen until the actual day it did. Looking back I appreciated and do appreciate my father's frank and upfront take on explaining life to me and clueing me. So my approach would be to attend the camp, address the topic and live in the moment all aware.

But I lay in my bed depressed and in-mobile in my own state over my husband having ALS (taking meds, but still very depressed and limited in my self at the moment). BTW, watching Steven Gleason's movie/documentary yesterday by myself in my curtain drawn room and crying all day does not really help.

I hear my girls out in the hall way, laughing, singing in the shower and just happy. Do I burst that 8 year old oblivious bubble? Ugh. How does one handle this scenario? Any insight/suggestions or ideas is appreciated.

To tell or not to tell right now the girls that is the question. My husband as stated is in 4th year diagnosis, appearance basically a walking 90 year old man, with a handsome young face much like ironically Steven Gleason. He is a great father and going to fight the beast to the bitter end. If, like Gleason's motto, "no white flags", his is from the Robert Dinero movie, Raging Bull, in the ring Robert says, "I am still standing Ray, I am still standing" I am not down Ray.

 

[Nikki J]

Camp is a tough issue. In my opinion they do need to be told soon. My niece was 9 when my sister was diagnosed and she was told about a month into it before anyone else knew. They received professional advice on how to handle it.

My worry about camp is that there are going to be kids whose PALS are at all stages and also, I believe, deceased. Kids will of course be talking about their families and with this news so fresh, will they be prepared??? I don't know the answer , just wondering? Have you discussed this issue with the camp people for their experience as it must be a common issue? Maybe it works out fine It is just really soon after being told if you are talking about the camp that is in a couple of weeks. Or is this a different one?

 

[Labinma]

Thank you Nikki!
Yes, I think I agree. Too rushed, too soon and as said the camp probably has more advanced ALS stories.

 

[Manhattanite]

I don't have kids so perhaps I'm not the best to opine so forgive me if what I write is pure nonsense, but I come from a family where things were not discussed upfront and they were kept hidden under the rug for as long as possible, and I grew up to resent that.

I think children can sense when something is going on. Keeping things a secret might cause children to misinterpret their parents' behavior and incorrectly assume that it has to do with them.

In your post I think you write the answer to your own question: "So my approach would be to attend the camp, address the topic and live in the moment all aware." But I understand that doing this is difficult. You can't control how your children will react to the news or how they will process it, but you can control how you present it to them and how you aid them in navigating this difficult situation. Personally, I am glad that they are twins, because I assume they already have a strong bond and they have each other for comfort.

Good luck Labinma and sorry you have to deal with this.

 

[ShiftKicker]

You are the best judge of your kids. I can only tell you my own experience with a much older offspring.

At the time of my symptom onset, my child was 14/15. I didn't say a thing the entire time I was going through my diagnosis. I wanted to spare everyone the worry, just in case it wasn't such a "big deal". I was also being examined for genetic things, some of which were fatal for male offspring. I was a wreck, but thought I was managing to keep it under control. My kid noticed everything- every mood, every word forgotten, every twitch, tic, stumble, dropped item, and day I was tired. He worried, but didn't broach it because I wasn't talking about it. It became his job (in his mind) to try to make me feel better and to cheer me up- he didn't say anything to me about his mission, of course. He became relentlessly cheerful, hid any personal troubles and worried himself into terrible anxiety about school. When I sought to reassure him, he didn't believe me.

We've done a lot of work to retain that connection, and he did just graduate from high school after pulling magical marks out of his hat- but it was hard for him. I did the wrong thing by not keeping him in the loop right from the start. As I say, he was much older than yours, so had an ability to do his own searching online.

Your kids are much younger, but I bet they know something is wrong- however if you aren't addressing it directly, they won't either. They look to you for cues. Kids are really resilient though, and will respond to crisis in a variety of ways. Not wanting to frighten them, or worry them, is such a natural response to this situation (you are SUCH a caring mum), so I totally understand where you are coming from.

I am not in any position to tell you if the camp is appropriate, but do heartily recommend you connect with your ALS association to find out what resources they have to help you with age appropriate ways of dealing with a parent who has ALS. You have an opportunity to make sure their response is as healthy and appropriate as possible and to control what info they get, guided by a professional.

You are a loving mum, confronted with an impossible situation. Know that I am thinking of you and hope YOU are also seeking self care. You have quite an emotional load sitting on your shoulders.

~F

 

[Labinma]

Thank you Manhattanite...
I definitely appreciate any and all takes on this. I am very perplexed and struggling.
Thank you for your input.

 

[Dave K]

Perhaps you've seen this already, but here is an article posted by the ALS Association on their website entitled "Discussing ALS With Children":

The ALS Association

 

[scaredwifetx]

My Granddaughter was nine when Steve was diagnosed. She is very close to him so we made sure to explain to her that he is sick and explained some of the details with her. Guess what? She said that she already new Grandpa was sick because he looked skinny and wasn't as strong. She wondered what was wrong and why we were not telling her. Once we told all the children and Grandchildren things were easier for us. They still go about their day and are still children. Their youth is their shield. it's just my opinion but I think there is less worry when included than when they are trying to understand something they know nothing about.

 

[KimT]

Have you thought about seeing a counselor and talking about all this? I think it might help.

Kids are resilient. They are usually tuned in on what is going around in their home. Perhaps a counselor could help you start a dialogue in an age-appropriate way to help them understand what is happening.

 

[lgelb]

Agree that dx news + camp would be too much, too soon. They need to process within the family, first. Later on, there are ways to connect them with peers, live or virtually.

But as others have said, kids know or suspect enough to feel uneasy, even at that age. The effort of ignoring clues isn't insignificant, either. Summer would not be a bad time to process before school starts.

You have some good resources available; I'd only add that when you say, "Daddy is sick," you will also want to say something like, "You girls will be helping him feel better by doing things for mommy and daddy sometimes when we ask you, and talking to us whenever you want to ask us something, just like you do now." You don't want to just drop bad news without the appearance of a plan. Security at that age is very important.

Best,
Laurie

 

[diagnosed2016]

Our kids are 4&5 and all we have told them is that daddy has a sore leg which they understand well: daddy has a sore leg so he needs his walker, or he has a sore leg so he can't go on a long walk with us, etc. so far its age appropriate, and I've spoken to a therapist who feels it isn't the right time to tell them more. I don't think you have to lay all the news on them at once. 8yrs old understand death and what that means, so it might be a conversation you have in stages. Don't ignore it or make it the elephant in the room. Bring it up to them, and then ask them if they have questions. You don't have to tell them it's terminal at this point. Just sick which is going to make some things harder for him

 

[Kristina1]

My kids are ages 4, 7, and 8. I was diagnosed in March. We did sign my 7 and 8 year old up for the camp for children of PALS in August (it's probably the same one, they have several locations).

Here's where we are coming from with the decision..

First of all, their 4 year old brother has severe autism and comorbid disabilities, so they are not new to disability. We have had age-appropriate discussions about disability for years. They have grown up with therapists in the home and assistive devices and countless hours of sitting in specialist waiting rooms. So when I was diagnosed we told them right away, though we didn't tell them it was a terminal disease. We told them that mom's muscles are getting weaker and we talked about some of the things I will need down the road, such as a wheelchair. We let their teachers and school psychologist know and set up informal counseling for them at school. They've had some fears about it, but they are also very positive. They love helping me and per professional advice we include them in helping as much as possible. They open things for me, hold my hand on the stairs, carrying the groceries, and push the cart at the store.

I know that they will see kids grieving or experiencing a parent in further stages of the disease at camp. But they will also have someone with them to help them process this (we are sending either my husband or my sister in law). I don't want the hard stuff to sneak up on them like a cruel joke that no one warned them of. I think having some secondary exposure with appropriate adult help in filtering the information is healthy for them. Then they can come home and continue to process it and discuss with us and reaffirm that at the moment mom is doing okay.

These decisions are very personal but this is how we have decided to approach it.

 

[Labinma]

Thank you all......so appreciated. Every situation so different I guess along with the different ages. In a way I wish they were more inquisitive. I would answer and explain all along. It is almost like they don't want to know. They may have even overheard discussion of it. Not sure if this is good or bad. Waiting for the other shoe to drop is one option I basically been considering, as it will be a visual to understand, whereas right now the progression due to its slow in nature type makes it hard to get into what is going on. I don't wish this on anyone.