Telling the kids

[Bexlil]

We have two children, aged 16 and 13.
How do we tell them their parent has been diagnosed with ALS?

 

[Atsugi]

My kids were 13 and 15.

At first, we simply told them mom had a bad foot, and the doctors were looking into it. I asked the kids to help out more often around the house.
Then, we said she needed a wheelchair because her leg was sick, and I asked them to help with more chores.
Finally, after they had seen the relentless progression of a disease that was obviously not going away, but they already had plenty of experience coping with it, I told them, one at a time alone, that mom was eventually going to die, and until then, it was up to us to make her life as comfortable, pain free, and happy as possible.
We cried of course. Then we embarked on our new course.
The kids, over time, learned how to feed mom, crush and mix meds, operate the patient lift to move mom around the house, operate the breathing machines, etc.
By being involved, I think it helped them process.

 

[michelleann80]

I would love to hear suggestions as well. Thank you for posing the question. We also have a 16 year old daughter. She is blind so cannot see the trouble he has walking & moving. But she can hear the cane he is using, and knows that he is having trouble getting around. Right now, we have just said, he is having trouble with his legs. Everyone has opinions, don't tell her, tell her. But would like to hear from someone who has actually experienced this. He is dead set against it, because he doesn't want her to worry about him. I have played devils advocate on why we should tell her. But, I just do not know the right answer, is there even a right answer? Thank you again for asking...

 

[Vincent]

I tend towards being honest about what is happening. Use age appropriate language, answer their questions, but don't try to hide things, as if you could. People do better i find if they aren't kept in the dark. The closer the relative the more important it is to be as honest as possible. Will there be tears, yes, but that's ok. It's all part of them being a part of the whole process. That is my opinion anyway.
Vincent

 

[affected]

There isn't a definitive right answer, but at some point they have to be told.

I think that starting with bits of basic information - a sick leg for example gives them something to start with. Then be ready to answer any questions they ask honestly.

With the internet available today, and child in their teens can pretty quickly work out what is going on. I think it would be worse for them to 'work it out online' than to tell them.

But then it depends in the individual child as to how much how quickly you may tell.

Michelle it's really tough when you are directed not to tell a child. He wants to protect. However, the reality is that he could decline suddenly, and your daughter had no time to really process what was going to happen and that could be worse. Being brutally honest, some PALS just pass in their sleep suddenly when they seemed to be OK. That would be very hard for you to be left to explain to your daughter that you never told her what was going on.

Never easy, even with adult children my Chris held back from telling them for some time, longer than I would have.

 

[lgelb]

Yes, teens are old enough to know. My husband had a fatal disease before ALS, so our son while in middle school knew that he was having numerous surgeries and could die.

Kids, like adults, worry more (and hide it better) when they can figure out they are being kept in the dark, or that things are remaining unsaid, than when they have a reasonably complete picture. They read, they use the Internet, they talk to friends. But P/CALS are the ultimate information source, so you want to be the ones to paint the picture early, correct any misconceptions and innoculate against magical thinking, giving them time to process. Also, you will be better able to deal with the kids' emotional issues earlier in the disease than waiting until things are dire. And the kids need to know before the 11th hour as well, so the end of life is not a huge shock. As Mike says and I know others will chime in, they can help in many ways. But more than that, they're part of the family and this will be the most important news they hear this year, so prepare, know the facts and be honest.

Michelle, your daughter most of all needs to know. She is missing the visual picture and could be imagining all manner of things. We can't, don't and shouldn't shield our kids from bad news; that won't serve them well later on. It is how we respond that helps form their own observations and responses now and as adults.

 

[Ells]

Kids have to be told. They’ll know something is up from the vibes between you anyway.
Ask yourself, “how do I want them to find out?” from the Internet, playground, a throw away remark from a friend or in a controlled manner by you, their parents?
You know them best, so you’ll know the when, where, what & how to tell them. My kids were much younger than yours when we told them, so it was probably easier but even they got honesty. They asked questions that were answered fully. Kids know when they’re being fooled and are more resilient & accepting than us adults.
I know I’m being blunt and the post-diagnosis period is very difficult and traumatic, but I’d strongly advise your kids being told. Let them be involved in care from the start; it makes it less of an unknown, thus normalises things. My kids try all my equipment from the PWC to BiPAP, I don’t want them to be scared of me or of what they see in their own home. The 14 y.o. has even changed my MicKey feeding button.
I’m not saying it’ll be easy, it’ll be very difficult. You can prepare what you’re going to say and choose the setting.

My thoughts are with you all.
Ells x.

 

[Bexlil]

Thank you all so much. We thought we should protect them a little longer, but I don't want them to find out from someone or somewhere else. I really don't want to give the timeline, especially since I still am in shock and maybe denial. So, not sure about that part?

 

[Atsugi]

Waay to early to get any sense of a timeline. The standard line 2-5 years has so many exceptions, I personally think it's not very helpful. Could be ten years. Could be unthinkably much shorter.

It's most useful to think day-by-day. Just enjoy today the best you can. Tomorrow, you'll see what the new day has given you, and you'll make the best of that.

 

[affected]

Bexlil NO ONE knows what the timeline is, so don't even begin to go there.
If you have been told he has this or that long, it may or may not be correct.

Concentrate on very basic information, let them absorb and ask you questions.

Do let us know how you go with them, it is so hard.

 

[Bexlil]

Thank you all so very much. So difficult to deal with all of this. Still unbelievable to me.

 

[lgelb]

They'll see 2-5 years on the Net. But I would say something like, "People who have ALS don't live as long as they would without it so this will probably be Dad's last illness. But we don't know when anything's going to happen, there's no countdown clock, so let's take it one day at a time and make the most of our moments together."

 

[gooseberry]

We have a 13 yr old son. Steve was diagnosed when Julien was 11. We didn't tell him right away because we had to adjust to the news and develop a plan. Steve was diagnosed in May 2014. We told Julien in August 2014. He was able to tell me all the changes that had occurred and wanted to know what was happening. He was seeing a counselor at that point so I told him there.

 

[sleepy]

I have a 5 year old daughter and a 3 year old son. Right now they just know mummy is sick and sometimes needs a sleep. And my 5yo helps me open things when my hand doesn't work. We have been given advice to deal with questions when they come up with "what do you think the answer is" to guide us in where they are already at, and what level of detail they need as reassurance. I am feeling good about this approach to help us avoid giving too much too soon.

 

[sleepy]

My main worry is that they will overhear something. You can't control that..

Cheers, V