family doesnt get it

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Gooseberry, think Barbie is correct. An e mail or letter just telling what he had said to you- without any judgement on your part might shake them up. Facts are always better by themselves because, as you said, you might unleash on them and that would be counterproductive.
I can't even imagine the pain these relatives are causing you and your spouse. Do keep us informed how it goes if you decide to do it.
As a side note, my favorite pastor once said that the hardest sermon to preach each year was on Mother's Day. Because everyone didn't come from a loving, devoted mom who loves them unconditionally. When you stop to think about it, makes sense that the Mrs. Cleaver type mom isn't the mom everyone had!
 
>When you stop to think about it, makes sense that the Mrs. Cleaver type mom isn't the mom everyone had!

what horrible stereotypes we grew up with! However now it has been replaced with serial killers and banng-bang shoot 'em ups :-(

and, by the way, my father was as far removed from Father Knows Best as you can imagine. :)
 
Oh PS: my MIL is banned from the memorial service and my kids say if she tries to show up (that would be her speed) they are going to punch her in the mouth.

Barbie,
Never met 'em, but I love your kids!
 
My heart breaks for every single one of us. My PALS has been let down by friends and it crushes me to see the hurt it has caused. It is very hard to not have bitter feelings. I am hoping that every person mentioned has a change of heart soon.
 
Re: family doesn't get it

My husband's mom hasn't seen him in 3Y, never will again, despite offers to do video calls, etc. She tells others she doesn't want to see him that way. They talk superficially on the phone occasionally. He never knew his dad. My own parents, who have researched/discussed ALS, often act amazed when I mention some aspect of my husband's progression. They know I know that they know but they don't want to.

It is not only denial but fear of the unknown, for some. An unfortunate side effect of the Lou Gehrig connection is that it conjures up the spectre of the early 1900s when Lou died, which seems a gloomy, scary time, iron lungs, sanitariums, dark closets, whatever. IMHO the ALSA/MDA/et.al. should be dispelling the avoidance factor while being more upfront about reality. I'd like to see Flash first reads on their sites with taglines like "My husband uses a bucket as a toilet" and "I am drowning in my own phlegm" and "Our son cannot call for help." I'm not betting the farm that ever happens.

I just try to impart reality to whomever's around in hopes that the fearful and deniers can catch up a bit one day.
 
So Steve's mom showed up today at dinner time. I was late making dinner and feeling ornery so I waited and decided to watch her body language. I thought maybe it would bring some understanding. I realized she hardly spoke to my husband at all. Mostly she she spoke to.my son and sat so she wasnt looking at my husband at all. I think she just cant deal with what is happening. It is really so sad. She stayed for about half an hour and told us all about the traveling and things she would be doing with others.
 
>So Steve's mom showed up today at dinner time.

a start :)
 
it sounds like she need time to deal with this. that we don't have. maybe there should be a thread just for the family. things i wish i did.. quote, let no one cry for me i will cry for them.
 
I'm sorry. It does sound like your mother in law just doesn't know how to handle it. I know it is sometimes hard for people to know how to communicate with people facing an illness but it frustrating. I will keep hoping that she has that lightbulb moment soon and shows your husband that he is loved. We live in a world where people can be so self centered and people get so caught up in their daily life that they don't take time out to really see what is important.
 
I think that denial is a fairly common reaction.

It's all about them. So they think, oh no I don't want to see him that way, I don't want to remember him that way or something like this. We are living with it 24/7, we manage some denial at times but it's pretty much in our faces and real.

Like Chris children reactions were all about them - he won't be here for xxx [fill in the life event]. They did help out and visit to varying degrees, but it was always about how it was for them, rather than thinking of how it was for Chris.

I don't know how you talk to them and help turn this around, I didn't manage to.


I did thankfully take what was offered from people who did think about Chris or me rather than themselves all the time.
 
Well Steph, at least she showed up once. I hope you and your husband can have an honest talk about it--I am sure it is eating him up. I wonder what made her come by? do you think your BIL called her?
 
Yeah Barbie, I do. But for whatever reason she came by, Steve was glad to see her. He is saying its okay if his parents dont come by, since they havent really been there for him in many years, but I think he really wants them around from time to time. We will see going forward. His uncle, some friends, and my sister have either called or come to visit so that has been good. It really lifts his spirits!
 
You know I never would have believed it but there are people that will actually ignore sick family members when they really need them. I am seeing it first hand myself. My husband's family is the same way. They know he is battling this right now and he would love to see them. I don't know how they can live with themselves.
 
I think that denial is a fairly common reaction.

It's all about them. So they think, oh no I don't want to see him that way, I don't want to remember him that way or something like this. We are living with it 24/7, we manage some denial at times but it's pretty much in our faces and real.

Like Chris children reactions were all about them - he won't be here for xxx [fill in the life event]. They did help out and visit to varying degrees, but it was always about how it was for them, rather than thinking of how it was for Chris.

I don't know how you talk to them and help turn this around, I didn't manage to.


I did thankfully take what was offered from people who did think about Chris or me rather than themselves all the time.

Tillie
Some people are not in denial they are actually just in their own world and do not want to inconvenience themselves. They were that way before the illness and they aren't going to let anything change them. They are very selfish people.
 
Well said, Goodgrief. I have to deal with somebody like that, too.
 
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