Where is everyone?

[Mick n Ang]

I totally agree with all of the above, we have our wonderful son who calls every day,but apart from him and his lovely fiance the only others we see on a regular occurance are OT's, Physio's, Consultant and thats it, he has two sisters and two brothers. We actually saw his eldest sister for the first time in about 18 months yesterday only because Mick asked that I drive her and his mum to the airport and she seemed put out that he didn't look a lot thinner and weaker than he is. I could of cried as getting him to eat and keep his weight on is a big issue so I felt that she had just slapped us both in the face for doing our best, and just struggled for nearly half an hour getting him comfy for the journey to take her to the airport. If only she bothered to come see him and spend a day in his shoes, she made me feel so angry and it took nearly all day for me to calm down, heaven help if she should ever have to suffer half as much as he does. Thats my one rant for today sorry to vent here xxxxxxAng

 

[Miss]

Unbelievable. I think I would have to put those feelings in a note to the sister in law.

 

[LizT]

what really gets me is that a lot of people are just scared, and that is the reason they stay away.
Or they say that its just so hard to see him in that condition.
WELL- first off, if you came more, you would be used to it by now.
Secondly- yes, it is very scarey seeing someone with ALS decline. Its completely and utterly heartwrenching. But what people should be doing, is thinking of the PALS, not themselves. Though it may be really tough for someone to see it, imagine living it.
And in all reality- so many PALS are being punished for becoming ill. This brings such a rage up in me.
All of you guys are so strong. Im just amazed with you all.

 

[brooksea]

I was just talking about this with my dad, today. He was over here installing a wider door and an electrical outlet for our bathroom. My husband has been tiring himself badly, by trying to do things himself and he is unable to do them. It takes him such a long time and an enormous amount of energy. He feels terrible that my dad is the one helping him. Today he just had to finally plop down in his recliner, he could no longer function. He was almost in tears!

My dad is in his mid 70s and he's the one coming over to help us! My husband has a lot (I'm talking oodles) of "friends" and a very capable brother that is in construction. He has literally put himself in jeopardy to help and comfort those family and friends in need, even after ALS. Have any of these people visited or called to ask what can be done? We've had three visitors in 4 years. One comes about once a month to escape his wife when he comes back from out of town (and tells her he's still on the road). He reluctantly helps my husband if he asks (best friends since little). Another comes about once a year. Lastly, we had the other come twice in 4 years. Mind you, these friends live in our area and have known my husband since he was in elementary school. As for the brother, he has NEVER called or darkened our door. My SIL has even asked him to get with us about the bathroom remodel---not a peep! (And to my crazy SILs credit, SHE is the one that came over yesterday to help tear some more out of the bathroom - pitiful! I told my dad it was a sad day when the SIL is tearing out the bathroom and not the BIL! :?)

My dad put it this way, when I said I don't know whether people can't handle it or don't know what to say and therefore just avoid the whole situation: "They better figure out how to handle it real fast or they won't have the opportunity to do so in the future!" Regret is another word for guilt!

Supposedly, two friends are coming Wednesday to take him to lunch. This was rescheduled from tomorrow. They will be shocked, as Liz eluded to, at his condition.

As you can tell, this is something that really pisses me off! Sorry for the rant!:shock:

 

[LizT]

no need to apologize. it royally pisses me off too. youre story sounds just like Ray's. Almost to a T.

 

[joelc]

I can certainly relate to what you are saying and we share the same experiences - unfortunately. What can be done? Nothing.

 

[sadiemae]

In the year since his DX, my husband has one friend that has stuck by him, calls all the time, even though he usually talks to me as Les doesn't like talking on the phone. Comes over to help if we ask, basically has just been here for him. Now, his friend is facing major health issues himself, doctors discovered a hole in his heart, and they suspect he may have MS. This on top of his already DX COPD. His friend is only 38.

 

[CAHPAH]

I am reluctant to comment, but after reading all of these post, I feel so blessed. We have had great support from our immediate family, church family and friends. We are going on 3 years this month since the diagnosed. We really did not need much help until this year. Since the first of the year someone from church drops off dinner twice a week, we often have friends drop by, my sisiter has come up twice from FL and stayed a few days and we have a friend from OK who makes it a point to come up once a month and stay as long as she can. My two daughters (19 and 22) have stepped up wonderfully as well has my mother and sister in laws. My biggest problem is not being able to get people to help but rather getting my PALS to let them help. I wish I could share the support system I have with all of you.