Family

[Jason's Dream]

Just a small vent/rant.

So Jason's grandfather (his "father-figure") finally visits today for the first time in MONTHS. Invites Jason's mom to MY house. Mom seems to think he invited her for her to hold his hand as he visited with his grandson because this makes him uncomfortable and its too hard for him. Really? This is the grandson you raised as your son, who needs one on one MALE BONDING time with, and here he barely stays 1 HOUR, and has someone here to hold his hand? Thing I've been noticing, is, if more then 1 person visits at a time, because Jason's speech is soo slow and hard to figure out, and so it takes TIME to understand him, that the TWO + people visiting end up and talk with each other instead of Jason, and here Jason is setting in the same room feeling like "Hey guys, I'm over here.. talk to me" type of thing.

Honestly it is soo frustrating that these people can't put on thier big people panties and be there for Jason. Freaking grow a pair. It ain't about you guys, its about a young man facing something soo scary, and something y'all have never faced. Get over yourself and think of HIM for once in y'alls life!

Okay, rant over.

 

[LizT]

That is just plain crappy. My PALS son does this. He will not speak directly to his dad. Instead he will say "can you tell dad... blah blah blah". REALLY? You just did.
Oh the ignorance.

 

[brooksea]

I know, I know. All I can say, is tell them they are missing out on "the moment" they could have had with him.

During the conversation they have with each other, offer nothing, let them talk. Then, ask what they were directing at Jason so you or he might answer!

It's rude to talk around someone, especially when they are in a position like your husband.

 

[Pandora]

Put your foot down. It is not mean. tell them its one at a time. I do this with my husband, not that anyone really comes to visit. If they don't like it, they can suck it. I know it sounds heartless, but your the warrior now, let them know its My way or the highway. You gotta do whats best for Jason, make them play by your rules. That is what I have have been doing, and it's rough at first, but very worth it. You can do it, think of it as therapy. the more one on one time they get with Jason, the better they will feel, even if they don't see it now. I know its hard to "plan" times for visits, but remember you don't work for them, your not there to make "their" life easy, your there for Jason, and thats all that should matter, if they don't understand that, then as i said they can suck it. "they can suck it" is my new motto. Working pretty good, I will lend it to ya.. and oh yeah sending you big hugs and lots of good energy vibes. you can do it. I know you can.

 

[notme]

It's almost as if this type of thing is some form of universal ignorance.

Something else I stress to all my students--no matter the state of your patient--treat them as you would want treated. Talk TO them, not AT them.

Some people just are not able to connect the dots that a disabled body does not make the mind gone as well. They are either ignorant (and can be educated) or stupid (lots on this level) or so uncaring that they are simply worth the effort.

Ignorance isn't a bad thing--we all have to learn things to know them--so, assume they are just uneducated in how ALS works--HELLO, the LIGHTS ARE ON AND HE'S HOME--he is just in a body that doesn't work well. Please don't treat him like a piece of furniture.

I insist my students even talk to their residents in vegetative states or coma. They need to understand--and all too many really just don't get it.

When you're healthy and have never worked in healthcare, it's sometimes hard to get your mind around a body that doesn't work doesn't mean the mind doesn't work. They might just not really get it. If they DO get it--sigh--then I don't know what to suggest.

There are so many ways to communicate with PALS. See, there are people like you all that come here and find answers, and the OTHER kind of people--that simply can't be bothered to educate themselves.

 

[valg]

My husband's family rarely visit (they are all very busy) and when they do I am expected to be there to do the communication for them. We communicate via an alphabet chart.
So many of his friends no longer visit, even though everytime I see them I stress how much he enjoys visitors. It breaks the monotony for him and his eyes really sparkle. They cant bare to see him like this!
People dont think of the person and how much pleasure an hour of their time gives, Its about themselves - how busy they are and how they cant take it. Never about the PALS, their spouse and children - how they have to 'take it" and cope.

 

[Jason's Dream]

Exactly! I have enough on my platter, I am not here to hold thier hand through this, rather they should be holding mine and Jason's. His family expects me to be here so that I can translate for them. They don't even try to understand, or give him time to get his statement out to respond. It absolutely breaks my heart! With Jason I try to understand what he says the first time. If I don't understand a word, I ask can you spell it. If his letters aren't coming out clear. then we start running through the alphabet. But we eventually get it. He is still in there and it break my heart when people walk in the room and don't talk to him, but instead talk to one another or me, as if he is not even in the room. Ugh! Thank you for understanding. <3