Where is everyone?

[LizT]

Im sitting here tonight, thinking of my PALS. His name is Ray. He's a great guy. He is 51 years old, has two sons, three grandsons. He used to design and i believe help install sprinkler systems for fire protection in large businesses. He once was working at childrens hospital in Milwaukee and would hang out with some of the kids. When he heard a friend of his was diagnosed with MS, Ray got a bunch of people together to help replace his roof. After he was diagnosed, that same friend returned the favor. However, here we are, 8 years later, (mind you, i have only been around the last almost 3 years), and where the hell is everyone? I mean, really. Noone comes to see him. Except for the one friend with MS. He finds a way to make it over every now and then.
Ive seen a few, here and there, each came once.
Even his family are non existant. Everyone except Mom. She's there everyday. Has been since he was diagnosed. She is 75 and in very poor health.
Noone in the family or any of his friends knows how to do anything for or with him.
They cant suction him.
They didnt even take the time to learn how to communicate with him.
His mom and I are the only two people who are involved, that know how to spell things with him.
Most people have acted as if he has already died. It makes me so sad inside. It makes me angry too. But i have no place. Who am I to judge?
But the selfishness of these people make me question mankind.
Everything to do with this damn disease makes me question if there even is a God, and i really hate that.
Sorry for the rant. And sorry for the length.

 

[Miss]

You aren't alone in this rant. I've heard the same thing from several CALS and PALS. My husband was diagnosed 4 months ago. So far, everyone hasn't crawled into the woodwork. Most people still come by and visit. We try very hard to make them feel comfortable. I'm learning that I have to "teach" his brother how to help him up, "spot" him when he is walking, etc. It doesn't come naturally!

 

[LizT]

i understand how scarey it is to see a loved one go through this disease. and i truely sympathize. I guess im just to the point where its like "Ok guys. You've had almost a decade to get used to this. C'mon already!"
I dont think they even realize how much work goes into making sure he has everything he needs.
im just very frustrated and overwhelmed with these people, and most of them i dont even know!
Im very glad to hear that you guys still get visitors, Missy. Im also glad to hear that his brother is at least allowing you to show him how to do things. Making him aware, thats a great thing for you to do.
sometimes i wonder if he did something to upset his family. but then i think, well, he has suffered well enough by now, that it should be forgiven, or at least put to the side. ugh.

 

[Miss]

Who knows where some of those people will be in a few years, though! Right now, it is still new.

 

[pops66now]

Maybe you should confront his family and lay it on the line that you need some help. You need more than one person capable of
handling him. Not that it is going to happen, but what if you became sick or ill with something. Just my thoughts.
God Bless,
Wayne

 

[TedH5]

This is a safe place to rant. That is a shame that his friends and family have not been supportive. I guess you find out who really cares when these types of things happen. he is definitely blessed to have you. My prayers go out to you and Ray.

 

[LizT]

Thank you. And i have said things to his family. They just stay away for longer periods after i say something. Or they tell us they will talk it over and get back to us, but they never do. And Wayne- I know what you are saying- thats what i worry about all the time. I dont get to be sick because then there is noone to hold it together.
It is so ironic that i started this thread last night. When i got over to Rays today, he told me that he has been awake most of the night, laying in bed, wondering why his friends abandoned him. I told him that i was wondering the exact same thing last night and posted something about it. I told him that maybe its time that we sit down and send out a mass email to all his friends, telling them how much it really hurts that noone is around anymore. He agreed. So im guessing within a few days we will be working on that.
I hope it works.

 

[LizT]

and Missy- i hope to God that doesnt happen to you and your hubby. its a very horrible, empty feeling.

 

[jemahiser]

I have even found this forum to abandon their friends. They eliminate answers from other members that might be of interest but the monitor doesn't agree with. I am 6 yrs. Dx my true friends have stuck with me. I expected to add many cyber friends when i found this forum a couple week's back. The main problem seems to be a person that has been very helpful to many people. He is letting you down just like some of these people who you speak. I too could help and be helped by this site.

 

[LizT]

Jemahiser- I do not know the details of what you speak of. I will, however, say that i am sorry if you feel that youre not being supported here. That being said though, i dont think it is appropriate to say these things about someone, especially when others dont know what you mean and dont know exactly what you are talking about. Dont assume that anyone is letting me down based on the fact that you feel let down. Personally, i dont think this is an appropriate place to confront these issues at this point. I tried to send you a PM, but its not allowed. If you are comfortable with it, post your email address and we can talk that way.
I dont want anyone on here to feel left out in any way. But in order for me to be supportive of you, you will need to be more clear on what you are talking about and also stop saying not so nice things about someone who really does help alot of people.
i would like to know your point of view, so please share it. just do it appropriately.

 

[joelc]

Unfortunately there are very few people who have not experienced being bandoned by their loved ones and friends. I think it is largely due to the fact they are uncomfortable and don't know what to say or do. That should not be an excuse but seems to be what happens. Writing an email is a good way to go but prepare yourself for never seeing some of them again. I truely hope it brings positive results. Let us know!

 

[LizT]

i see what you are saying joel, but from where we stand now, we dont see them anyway. so if there are a few that get ticked off- so be it. they are already absent.

 

[Miss]

I'm with you Liz. What do you have to lose?

 

[tmasters]

My recommendation: express this in a positive rather than a negative way. You will get much better results with "he really enjoys visits from friends and family" than "he's feeling abandoned and upset that nobody visits".

-Tom

 

[irismarie]

I spoke to my nurse today about how people are full of promises at the beginning of an illness and just drop away as it advances. She said it is just about always like that - and this is her job, seiing people like us. She has seen it over and over again, just as we have seen so many times families split over MONEY when someone dies. It just shows the shallow side of human nature so so clearly.
And no-one really seems to understand how great is our need for loving hands and kisses.