end of the road

[dyin_myelin]

Reading about the cases where MS kills by complications due to inactivity like bedsores, pneumonia, etc., as well as some stories shared on this MB from caregivers put in the position of caring for someone in this condition. Are these people still "there"? Can they think, reason, feel, read? If you've missed the long term disability train and you have average retirement savings do you wind up in a state run nursing home?

[poohb3ar]

i don't really have fact answers to your questions, but i feel your pain coming from them & your name.
i'm sure you know MS is different for everyone and changes all the time even in how it acts individually.

i pray that you're doing ok. sounds like you're worried about the future. heard a neat quote on radio today
'no need to worry about the future, it won't change it and it will ruin the present'

don't mean to give you just platitudes, but most MSrs have to take it one day at a time. and make the most of the good times that you have.

if you're the caregiver, it depends on the person whether or not they're 'there'. i believe we underestimate people in comas, or with some such situations to take in what is going on around them just because they can't communicate well enough.
just to be safe, i always try to talk to them normally and upbeat as possible.

try to take care of yourself and God bless you!

[Thinkimjob]

Well, I don't know anything about the second part of your question, so I'll have a stab at the first.
My answer would be, dear Lord, I hope not. My fear is that I could wind up in that state, and there would be nothing I could do to end it.

My Nana had dementia or Alzheimer's. She was physically healthy as a horse, but eventually she did nothing but grimace or cry and get up and down, sit for ten seconds and get up and down again.

No bladder or bowel control, no idea where she was, or really even who she was or who the family were.

She was in a pretty good nursing home, but they still left her for a night with a broken arm. If we weren't visiting every day, I shudder to think what would have happened.

She would have loathed it if she had had any of her marbles left.

In her very, very rare moments of lucidity she'd say, "I want to go home" or "I want to drown myself in the river." Five years of it, poor old girl.

But maybe MS is different. I do not want to find out. Which is why I have alternative arrangements lined up.

[palmtree]

I wish I knew, too. I think about the future and keep hoping there will be an alternative.

[mercadies25]

I read somewhere: WHY DO WE ALL FIGHT SO HARD, IT'S NOT LIKE ANY OF US ARE GOING TO MAKE IT!!!

I laughed at that but it's true.

I also mad arrangements after watching the Annette Funicello (sp) story. I don't want to go out like that.

I could just see myself not being able to communicate but thinking why is everyone letting me live like this? I would want to choke someone.

Hoping the best for you!

[Jules A]

My guess is as good as anyone else's without seeing actual brain scans but based on the MS patients I have cared for who were in a near vegetative state: No, I do not think there was much cognition left.

Of course you continue talking and approaching them as if they know what is going on just in case but I would bet my life there isn't much left. Ever see a MRI with brain atrophy? Not pretty and again my understanding is that this is also a likely part of the MS process for most of us.

It can be misleading because people may still follow you with their eyes, grimace, moan, have a pain stimuli response etc. but that doesn't necessarily mean is a goal directed thought process.

[Jules A]

My guess is as good as anyone else's without seeing actual brain scans but based on the MS patients I have cared for who were in a near vegetative state: No, I do not think there was much cognition left.

Of course you continue talking and approaching them as if they know what is going on just in case but I would bet my life there isn't much left. Ever see a MRI with brain atrophy? Not pretty and again my understanding is that this is also a likely part of the MS process for most of us.

It can be misleading because people may still follow you with their eyes, grimace, moan, have a pain stimuli response etc. but that doesn't necessarily mean is a goal directed thought process.

[MSW1963]

I'm all in for having an alternative plan. It gives me confort to think that me and my loved ones will be spared a long difficult, eventually meaningless and expensive missery. no.thank.you.

[Thinkimjob]

With you there, Mercadies. After Nana died, we all asked why we had put her, and to be brutally honest ourselves, through it.
The trouble is you always hope against hope that somehow miraculously everything will get better, even though you know it's not going to happen.

That means you don't know when to pull the pin. We had one chance to make a life or death decision, when she fell and needed brain surgery, but it was early days, and she was still Nana, and she wasn't keen on dying.

Then again, we'd never really talked about it. She did have a DNR (do not resusitate) sticker later, but that only works if you have a heart attack or the like. It was standard in the dementia ward. I think we had to agree, but to be honest, I don't really remember.

I think it is extremely important to make your wishes abundantly and plainly clear while you can.

[Fed Up]

I've always had a plan "B" in case of some crappy disease.

Something I decided at the age of 19, while in nursing school. Somehow, foreseeing the flaws in disease's, I knew exactly what limitations I am willing to live without and which ones, are totally unacceptable.

Oddly, I've never feared death and felt it is as important to plan it, like birth. fed

[Leeaura]

Very delicate situation

I also am working on a plan B. I know what situations I am willing to live with and which ones I am not.

I've mentioned this to my DH and our grown kids. They weren't very happy and didn't want to listen. I tried to explain that this was an unselfish act on my part. Exactly the opposite. I don't want any of them wasting their lives taking care of me when I probably don't want to exist in that situation anyway.

Maybe my MS will b mild, I'll never get to that stage where I have to make the ugly decision, and my DH and I will live happily ever after (hopefully w grandbabies).

We can hope, can't we?

[Jules A]

I've always had a plan "B" in case of some crappy disease.

Something I decided at the age of 19, while in nursing school. Somehow, foreseeing the flaws in disease's, I knew exactly what limitations I am willing to live without and which ones, are totally unacceptable.

Oddly, I've never feared death and felt it is as important to plan it, like birth. fed

Well said. I can remember Karen Ann Quinlan's case which traumatized me all those years ago. It motivated me to get my first advanced directive, then called a living will, when I was in my early 20s.

[misslux]

Thank you for this thread. It reminds me that I need to get a living will in place along with DNR orders.

I hope by the time I have progressed badly that there are legal avenues I can take to easy my suffering. I do not want to be hooked up to machines or feeding tubes.

[JanG1360]

FED UP

I AGREE WITH ALL OF YOU WE EUTHANIZE OUR ANIMALS BUT MAKE OUR FAMILY MEMBERS SUFFER ITS NOT FAIR AND WHEN THOSE TIMES COME I DON'T WANT TO SUFFER OR BE KEPT ALIVE JUST BECAUSE SOMEONE IS GREEDY

[kellygrn]

DYIN - you have chatted with me

All I can say is to get the correct answers for your questions, you have to put yourself in that type of situation. You are more than welcome to come visit me. Texas is hot all year round so bring your cool vest.

I know I am not the only person around with MS 53 years. Other diseases have declines that you can go talk to. All I know for me is Today is going to be the best I know how to make it.

KK