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dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
Hi. I am the daughter of an ALS patient. My father and I have always been very close and this is a very sad time for us. He was recently placed on a ventilator. We try to be supportive for my mother who is his full time caregiver until we can find some help for her, but the help never feels like enough. It's hard to see him suffering and difficult to talk to people about it as the old saying"It'll get better" just doesn't apply here. My father was diagnosed 15 months ago and deteriorated rapidly. I try to deal with it by having fundraisers for the ALS walk and by watching the smile of my 3 year old daughter when we talk about her Pap-Pap or when she sees him. I can't wait to "meet" others who will understand the small joys and sadness that those of us living through this go through. Dadspooh
 

DeeMichelle

Distinguished member
Joined
Mar 20, 2008
Messages
118
Reason
Lost a loved one
Diagnosis
0/0000
Country
UK
City
London
Hi I also have a dad with ALS and I know how hard it is trying to support your mum. My mum's doing all she can and is also crushed by the diagnosis. The deterioration is so hard to see isn't it? I know it's impossible to do enough for them and in one sense you can't do enough, but then no one could... I think there is a point where you do have to accept doing your best. Keeping a relationship going with your daughter and your parents will mean a lot. And Fundraisers too... You're doing good...

DMx
 

dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
Thanks

Just hearing from someone who has had similar experiences helps. Thanks for responding. My brother and sister in law got him out for a walk for the first time since his surgery yesterday. Yay! Small victory, but I'll take it. dadspooh
 

CindyM

Moderator emeritus
Joined
Sep 17, 2006
Messages
3,543
Reason
Learn about ALS
Country
US
State
New England
City
Anytown
Hi dadspooh- welcome to the forum although I am sorry about your dad. This disease affects everybody it touches. You found a good spot on the Internet, though. Folks around here are very caring and understand totally.
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Reason
CALS
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
Welcome Dadspooh. I'm sorry you're having to travel this sad road with your father. There's no possible way to describe the pain of watching your loved one decline. I wish you strength for the days, weeks, months ahead and I hope that your mother can get chances to rest. It's so exhausting caring for your PALS. Thank goodness you're a family and can share what's been handed you. Take one day at a time and cherish every memory. Your father is so lucky to have such a loving family.
Please keep us informed and ask/share anything you need. People here truly understand. Though we on the forum have never met, we can remember each other throughout the day as we go about our daily round. We're on this sad, uncertain road together.
Peace to you and your family,
Jane
 

dadspooh

Member
Joined
May 28, 2008
Messages
14
Reason
Loved one DX
Country
US
State
PA
City
Brockway
Thank You

Jane
It is so wonderful to know I have a place to go to find out that I am sane and it's ok to cry. I've only been on this site a few times, but I feel I can come here when I need it. I'm encouraging my mom to do so as well. Kim
 

fiddleplayer51

Distinguished member
Joined
Mar 24, 2008
Messages
337
Reason
CALS
Diagnosis
03/2008
Country
US
State
VA
City
Harrisonburg
I really hope your mom will begin reading and participating in the forums. It makes coping with this disease so much easier, and it really does help throughout the day to remember the individual struggles the PALS and CALS share here as you care for your PALS. Being able to participate in these forums is probably the single most effective means of coping and handling the tremendous stress of day to day care and living with this disease.
Take care and all the best to you and your family,
Jane
 
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