things that gets to me

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davbo49

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Sep 18, 2014
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606
Reason
PALS
Diagnosis
04/2014
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US
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kanas
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kanas
now i can't do much and seeing others doing just find at it gets to me. like driving when im in the car with them. i feel that they can't drive ether and something bad is going to happen. when i see someone pick up something i think their going to drop it. when i see someone running . well you know where im going with this. is it just me or am i going crazy :shock::shock::shock:
 
Dave, I can only try to imagine what the loss of control must do to a Pals mind. When my husband "instructs" me on obvious and simple things I try to remind myself that his mind moves faster than my body, and it must make him crazy to not be able to take over as he always has. What I wouldn't give to have him be able to do so... It was always difficult for him to let anyone else do something because he was the doer, protector, provider, fixer for everyone in his life. If we always needed him, how can it be safe to depend on us? I've also noticed that he misjudges the amount of strength it takes to do something. He is certain that some tasks will be too much for me when they are relatively simple. I'm torn between wanting to reassure him that I'm ok by showing him what I can do and hiding how easy some things are because it drives home to him how much he's lost

I HATE anyone and anything that reminds him of his helplessness, because helpless is something he NEVER was before this monster caught up with him--something I think most of our PALS have in common.
 
Last weekend when I was scrambling to get the house packed and my father in law and pal were there helping me, I could see Steve was upset. This week he told me how that was his responsibility and I shouldn't have had to do so much It was so hard for him to watch. He told me this week that he feels like nothing in his life is in his control. He isn't living in his house, he couldn't pack his house, hecant go anywhere on his own, etc.He had his own meltdown about all the independence this disease has taken.

I think Dave that is why he complains about my driving! That's my story and I'm sticking to it!
 
that's a lot of what's going on with me. i can't stand seeing them doing what i have done for years. the only thing i can do is set there and let them do it even if it's right or wrong. i have seen where jane was taking over and she was doing good with it but it wasn't the way i would of done it. o she don't like me telling her about it. this has gone to the tv i seen they was using their arms doing things. the first that come to me is omg they ant going to be able to hold that.
 
Dave you strike me as the type of person who would always help out, always willing to lend a hand...it must be so hard to not be able to do those things anymore. Well...I know it is hard, so my heart breaks for you.
I have no wisdom for you, or solutions, but I will tell you what a dear friend said to me only last week, 'I'm friends with your brain not your body,'
Sounds strange I know, but all part of acceptance. All the best for that, Dave.
God bless, Janelle x
 
I could see Steve was upset. This week he told me how that was his responsibility and I shouldn't have had to do so much It was so hard for him to watch. He told me this week that he feels like nothing in his life is in his control.

That would be me too
 
Dave......I feel you on this, loosing our independence is crushing to ones ego, and feeling of self worth. I try to do everything I can around the house, yard, etc. When I loose the ability to semi-function, it will be curtains for me. Driving, exercising, eating, brushing teeth, wiping our butts, etc etc etc........Are all things we need to have for self worth.
I can still do pretty much everything, though in a diminished capacity. My balance is getting to be an obstacle, dexterity is going, and can't speak. I know I need to bite the bullet and start looking at wheel chairs and everything else for my future.
Dave and Max and even Greg........I don't think I am gunna make it to your level of progression. It would make me crazy to completely loose my independence, I think when that time comes I will be Done.
 
You've all said it so well, especially Nuts and you pals. It hast to be so hard to not have ANY control! I know that's why my Jesse who can barely speak directs every single moment of his care and my driving when he's not asleep. I completely understand. At first I would get frustrated but I realized how important it was to him and that actually his ideas on how to do something are better than mine in many cases. I love how his mind works!

Sherry
 
jx thank you

mark i think you got it bad already. i don't know what it would be like not able to tell anyone off. that's if they needed it lol.

this is about more what we are going through Metallica - Bleeding Me (lyrics) - YouTube
 
I tried and tried to imagine what would it be like, and how would I be if it was me, when so many losses happened to Chris. I could only imagine it in a very superficial way I know. It's not like you are sick for a while and will get something back.

I remember so clearly the day Chris said to me - the thing is, when I can no longer do something simple, I will NEVER do that thing again. It rocked me to my core and I can still feel exactly how that hit me when he said it.

I have great respect and awe of PALS who can enjoy so much in every day and can bare the burden. I completely understand that I would draw my own line somewhere in what I would consider to still be quality.

We never want any of you to die, like I never wanted Chris to die. BUT I never wanted him to exist if he was simply suffering and worsening.

No simple answers, and also no rights or wrong in my book. Each person has the right to some control I believe. If that control is to say yes give me that equipment or solution, fine. If it is to say I've had enough, who in this world could have a right to say they are wrong?

love you all
for me, loving Chris meant allowing him to make choices I didn't agree with, because very simply they were HIS choices.
 
well said tillie, chris is proud of you.
 
Hi Dave it is Connor I am thinking of you
 

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>We never want any of you to die, like I never wanted Chris to die. BUT I never wanted him to exist if he was simply suffering and worsening

yup
 
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