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debbieh

New member
Joined
Oct 15, 2007
Messages
4
Reason
Loved one DX
Country
UK
State
Middlesex
City
Enfield
Sorry if posting in the wrong place, just want to say hello and thanks for all the information provided on this forum.

I am caring for my dad who is 77 and has appeared to have als for only 7 months. He has very little strength left in his legs and it is getting very hard to manouver him. He is also very weak in the left arm but remains strong thankfully on the right. He has no bulbar signs whatsoever currently.

I am worried about being able to maintain his care at home which is my greatest wish. As he is struggling to bear his weight I am considering a hoist but haven't broached the subject yet - my back is painful and I am worried it might give out on me and then I will be no use to him. It just seems like every day brings more challenges and no sign of a way that his suffering will end. He keeps saying he is bewildered that he is under so much strain but that his heart must be so strong, I think he would like it to give out on him. I am worried that he will go on and on until he gets bulbar symptoms.

Anyway that's a little backgound to our situation - hope it's okay to share this much.

Deb:(
 

nsmith555

Active member
Joined
Feb 27, 2007
Messages
67
Reason
Loved one DX
Diagnosis
03/2007
Country
US
State
OK
City
Guthrie
Hello Deb,
I'm sorry you have to be here, but welcome to a good place to be.

I would like to give you some suggestions, but I'm kind of in your place at this moment too; but I'm positive others will be able to help you.

God Bless You and your dad,
Nicki
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Welcome Deb. Feel free to vent or share or ask questions anytime.
AL..
 

CindyM

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Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi Deb and welcome to the fourm. You are wlecome to post anything and ask anything. This is why we are here! :) Cindy
 

cheryilyn

Active member
Joined
May 22, 2007
Messages
62
Reason
PALS
Diagnosis
Sept. 06
Country
US
State
Oregon
City
Salem
deb,
there is no reason to hurt yourself caring for your father. my brother in law passed away about 6 years ago from als. my sister is very tiny 4' 11" and maybe 90 lbs and she managed to care for him till the end. He was a big guy over 6' and 200 lbs. She used a lift and learned from a pt how to safely lift and turn him. the strange part of this story is 5 years after his passing i was diagnosed with als. we grew up together. this is very hard on my nieces, i see it in their eyes every time they look at me. good luck and god bless you. don't be afraid to ask for help or the equipment and training you need to take care of him.
 

Mary Helen Barr

Active member
Joined
Mar 6, 2006
Messages
61
That sounds a lot like my father. He was diagnosed at 72 almost 7 years ago. His progression was very slow. I seem to be the only one who can lift him. We tried getting a hoyer lift, but it was huge, and I think he would swing like a pendulum in it. We sent it back, because I couldn't see myself ever using it--probably needs two people? However, it is true that you won't be any good to him if you hurt yourself. My dad is just starting to sound strange and difficult to understand much of the time when he talks, so I guess that's bulbar symptoms starting. He is completely immobile, and has a hideous bedsore. He can't NOT be on it, because he can't seem to be able to handle lying down. Believe me, we have tried. I wonder what's going to happen with that sore. Anyway, good luck with your dad. Be sure to ask questions! Mary Helen
 
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