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sammygale

New member
Joined
Aug 28, 2009
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7
Reason
Loved one DX
Country
AU
State
nsw
City
sydney
dad was diagnosed with mnd late last year, Now he can barely communicate and is mostly paralised. I can only see him every couple of months as I live in a different country. He can;t stay at home because his wife is mentally unbalanced and on a lot of prescription drugs. So He is in a rest home which He hates. He's stuck in a rest home with people who belong there when he shoud be spending his last days at home.

I cannot do anything about this. i am considering quitting my life to go there and hire a nurse and bring him home but his wife isnt too keen on being a caregiver. Not in a bad way, it's jsu ttoo much for her becuase she's doped up on drugs all the time becuase doctors think this is ok somehow.... trying to communicate with him has been her hardest and most stressful job as he is constantly tryng to talk ...holding onto that last bit of normalcy, but it;s ridiculously hard to understand him
anyway.
i just wanted to talk.
it's devastatng and it's on my mind all the time.
 
Welocme to the forum, so sorry you and your father are going through all of this, I am hoping a suitable situation can be figured out. Gosh this is trying, we are here for you.
 
Hi Sammygale, where about's is your dad - I see your in Australia - me to,my mum MND. I would find it hard to be too far from my mum during this time - hope you can get everything sorted out.
 
Hi Sammygale,
Welcome to the forum. I am sorry you had to find this place.
I too am in Australia and i have MND so i know some of the problems your father is going through.
I am lucky though most of my family live reasonably close though..
I hope, like Gelthling does that you can get things sorted out.
It is really a bugger of a condition to have but this forum is a good source of information and a good way to vent your feelings on anything you want to.
cheers
Peter
 
Sammy,

Sorry about your dad! I really don't know what to tell you.

I too hope you will be able to find a helpful solution.
 
Sammy,

When ALS has robbed a person of their speech and the ability to write or type with their hands, it usually means its time to start communicating with eye blinks. It takes patience learning new methods to spell things out with eye tracking but it is very important to learn these new methods.

A lot of information can be passed using questions that need only be answered with a "yes" or a "no". One blink can mean "yes"; 2 blinks can mean "no".

There are also charts available that break the alphabet down into quadrants. The PALS gazes at the letter in the quadrant he means to spell with while the recipient spells aloud to confirm. It is slow but effective.

There are also computer programs that follow eye gazes to assist in communicating.

Zaphoon
 
just a thought is it possiable for you to get your father to come live with you ,and you wont have to give up the life you made and he can be out of the hospital and in a real home with you. i to am so sorry you and your dad have to go thru this.. i wish you the best
 
We have another PALS friend who types when he's home, but when he's out with us for coffee, he does a darned good job of spelling on the table (tracing with his finger) He has limited use of his hands, but can trace fairly large, recognizable letters. If taken in context, it usually only takes a couple of letters... for example, his son & daughter in law usually join us but were gone one Sunday and someone asksed shere they were. All it took was "p o" for me to get Portland. It's handy when there's not a keyboard around.
 
thanks...

hey thanks so much everyone. That's just what I needed to get just a little support. I live in Sydney and He lives in New Zealand, He could never come here, the flight at this late stage would be impossible as He feels such great fear at having no control over his body etc.
but also He really wants to be in his home on a farm he has grown up on. He is only 65. he has a tiny bit of movement in his arm that's all, his speech is so bad. And He wouldn't use the communication charts, just break down and cry. I managed to get every single one of his sentences though and never ever gave up even if I had to ask 8 times.

Dad's siblings are doing so many great things for him. My own siblings try and get there as much as possible too. (They live there, but a long drive)
I wanted to tell him I was trying to think of solutions but would hate to mislead him, so i just said the rest home is safe for now

It's just kinda nice to talk to you all as my siblings (god bless 'em) can't even return my emails let alone offer any kind of support . they are hurting too, I know but this place is just perfect.
Thank you all so much

I've enjoyed reading old posts as well
:)
 
your very welcome ,people here are great will try to help you all they can best wishes for you and dad
 
Hey Sammy,

You are welcome anytime.

Glen
 
Sammy, I'm so sorry you are going through this. This is such a monster of a disease. My sister lives in another city and she too is considering leaving but she is looking into getting a 6-month leave from her job which seems doable at this point. Perhaps you could look into something like that.

I really feel for you, I know how hard it is to communicate when you are in the same room with your dad so being in a different country must make you feel so cut off from him. Please feel free to vent here anytime. We all know where you're coming from.

Best of luck to you!
 
i would try to be with him more, if you can. it sounds like you might be the most proactive amongst your family of siblings.

i folded my entire life in another country to come home when my mum was diagnosed -- i guess it was easier since i was just leaving a job and friends -- I didn't have a husband or any kids. sometimes i feel sad about it and wonder how much better things might be for me now if i had just blocked all of this out and let my family deal with it as best they could without me -- but i could never, ever do that. i just wouldn't be happy knowing that they're all miserable. as it turns out, they've needed me more than anyone else. i wouldn't want anyone else to look after my mum, like a nurse or carer, i know they wouldn't do as good a job as me and mum would not be as comfortable with it. she even hates hooking on to anyone else when she needs help when we're out walking!

that said, it's a hard decision to make, of course -- but you won't regret taking a few months out of your life to spend some quality time with your dad, particularly if you have always had a good relationship with him.
 
I echo what rocmg said. You will never regret the decision to go be with you dad and spend what time he has left with him. Each day that passes is one we can't get back. Having said that I know it isn't easy to just pick up and go. I hope you find a solution that works for you.
 
update.
Hey guys. Only weeks later He is in serious trouble, so is in hospice. The rest of the family told me He wouldn't be able to go home at all that He just was too weak now, and they were right because that was only few weeks ago.
So now He has a chest infection and I guess that's the beginning of the end...
pneumonia. Do they ever completely recover from it and last for a while?
love Sammy :(
 
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