Telling Family

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AfraidButNotAlone

Senior member
Joined
Jul 27, 2013
Messages
538
Reason
PALS
Diagnosis
07/2013
Country
US
State
GA
City
Atlanta
I haven't told my parents what is going on with me. I figured, because I live 9 time zones away, that it was best done face-to-face and not over Skype. So I made that decision and it's done.

My question is how to tell them when I see them Monday.

How have others broken the news to parents? Siblings? etc...
 
I don't have parents any longer but do have kids/grandkids. Tell the kids was hard but it went a lot better because 1. i was matter of fact 2. didn't wear a long sad face 3. did not go into the 'end stage' stuff or predict the future to them. i urged them to read up on the subject so they would be informed and that on days when ALS was keeping me mentally and physically down (mostly the later) that not going to their house for dinner or watching the grandkids for an after wasn't personal but physical.
 
Initially, I told my siblings and also advised them that we needn't share the news with my elderly parents. My siblings objected and we told my folks. It was mind numbing hard - but turns out my aged Mom & Dad ( 93) are more resilient than the lot of us! My parents have great faith which sustains them and which sustains me. As it happens, We told them on Good Friday, 2012.
 
Elaine I am glad to read that your parents took it well. I'm afraid to tell my 89 year old mother. She lives 2000 miles away and has a bit of dementia. I worked that she'll be upset all over again each time she thinks about it.
 
Telling his parents was easier than telling the kids and siblings. I think because the parents are older, and have seen many people ill with different diseases, and have seen the courage that illness can bring. Yes, it was incredibly tough, but it seems to me that the more we told people, the more support we got and the more we could lean on people when we needed. They grew with the disease and us, rather than just see a further stage and not understand it. Good luck, have faith!
 
Linda -

First and foremost - welcome to our 'safe place' here - but sorry you had reason to find us.

If your Mum has dementia - she may not appreciate the full impact of your diagnosis. Does she have family or close friends nearby to help her if/when you decide to tell her? I hope you are able to see one another soon.

My Mom reminded me that she has always worried about each of her six children - and has done so for 70 years. This will never change for her. I think all parents fret, irregardless of the age of their child.
 
Because my family are all in other provinces, I had to do phone calls. They were all aware I was going for testing but they still had difficult time with the final diagnosis.
 
there is just no easy/gentle way to it, eventually after all the preporitory words you have to say ALS, and then most likely a follow up on what that is.
my husband is British and we now live by the "stay calm and carry on" motto. this additude seems to help other family members with handling the news

I do know it helps to have it shared with family, time for you to no longer be afraid&alone. I am very happy to hear you are headed to see your folks
 
No right recipe for this one I think.

It was very different for us telling the different children in slightly different ways. Some wanted to know a lot, some were just very upset at the news, some were a bit indifferent seeming, maybe a bit of shock.

But they all knew something was very wrong as we had been seeing all kinds of doctors for more than 6 months and he had been experiencing the bulbar onset symptoms for nearly a year. So it didn't come 'out of the blue', and my PALS suspected it was ALS for some months prior to diagnosed and had said this, so it also wasn't something they hadn't had a chance to look at.

I agree also that some have said the more people that were told the easier it got as we got more and more support.

I'll be with you in spirit on Monday, I guess I would just say - be yourself and allow them to react however they do in the first instance, and hopefully you can have a bit of time with them for that first reaction to be over with and still have time with you. I forget how long your holiday back home is, but I think it was only some weeks?
 
Thanks guys for the input. Two days until I talk to my folks....
 
My family knew something was wrong because of my speech....so for me telling them was just a confirmation of what we all thought was possible diagnosis. Telling friends and family that I don't communicate verbally with, often anyway, was kind of hard for me to figure out. So one day soon after my diagnosis, I just wrote a long memo on Facebook and made sure it went to all of them.
No one was upset that I didn't go to them privately and all have been very supportive.
My Mom, who is 85, kind of stays in an area of denial...but she knows. She told me, you had better not die before me, I told her...I DON'T PLAN ON EITHER OF US DYING FOR A LONG TIME! She liked that response!
 
Good luck--it has to be done and then it is over...the thinking about it before hand is the worst.
 
A&A

Thought of you today - hope your parents handled the news... As best they can.
 
Still haven't told them. First flight cancelled, second flight delayed 1:45.

They should land around 6:15EST.
 
thinking of you, flight delays don't help the nervousness at all!
 
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