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Chase_Corin

Distinguished member
Joined
Nov 24, 2010
Messages
135
Reason
Loved one DX
Diagnosis
11/2010
Country
CA
State
On
City
Perth, Ontario
I keep hearing the statistics, 90% of people with ALS die within the first 5 years and my brain goes numb.

My father was diagnosed in November of 2010 but we theorize that he had it at least a year to 2 years before that. I keep thinking it's not enough time, that i havn't had enough quality time with my father.

My dad is the last of his family still alive, his brother died from Cancer 7 years ago and his mother died of a brain tumour 5 years ago. We don't even know if this is Famileal ALS because his family have all died young.

Growing up dad was away a lot of the time because he was a Forest Fireman and worked in the firld for the ministry of natural resources. But the things I remember is him teaching me to swim. And on sunny weekends breaking out the buckets to wash the car the young me dressed in a swim suit because he knew I was going to get soaked.

In the years since 1998 when he had major surgery to remove arthritus build up in his spine he has been less and less mobile but even just laat year he and I were doing yard work together. He gave up driving last May because of the weakness in his arms. And he has a hard time getting around on uneven ground outside.

I have taken over the care of our 4.5 acre property on the outside and help as much as I can on the inside. Dad used to be the one that grilled and he hasn't been able to lift the lid on the BBQ in over a year. The things that he loves to do are evaporating on a daily basis and I hate to see him so frustrated.

Right now he watches a lot of television, does his physeotherapy exercises and can still do some light reloading (he was always an avid target shooter and he reloads his own ammo) but i dread the day when he can no longer go downstairs to his lair (where the den and his indoor workshop are).

We have considered bringing things upstairs but dad has nixed that idea, he said that he would need to take over too much space and it wouldn't be worth it. I want to be able to help him to still be able to do things but his interests are so limited that I don't know how to do that. He used to do woodworking but dosn't have the strength for it anymore.

I guess I just feel that I am at a loss to help him and that frustrates me. Dad is frustrated all the time. He has never been able to enjoy his retirement and it bothers me that he never seems to be happy anymore except for the occasional joak that makes him laugh.

the way his condition is progressing I feel that dad will fall into that 90% statisic and it scares the hell out of me. I want to be helpful and supportive but I don't know how.
 
I know it's hard Sweets. He does need you to be strong for him and I can tell that you are and that you love him very much. Let him call the shots. Try to stay upbeat and supportive. Keep showing him how much you love him. You're in my prayers.
 
I wish I had words of wisdom for you, but I don't. I can sympathize with you though. I see my husband losing more and more of his independence and it hurts. He can't mow the yard or walk more than 20 feet without getting completely out of breath. I am scared too.

I try to be strong for him and for our kids. It is the best we can do for them. Just to be there for them and let them know how much we love them, no matter what the outcome. Make the very best of each and every day.

I wish you blessings of peace and strength as you and your father face this monster.
Love and light
Meg
 
I feel your frustration too! It is very difficult to see your Dad frustrated or maybe even discouraged, especially if he was always doing something. My Dad was recently diagnosed (2 months ago) and he was always working on some project in his shop or in the garage. His symptoms started with his left hand, who really knows how long the symptoms were there before Dad decided to go to the Dr's?!, yesterday he had a follow up visit and the Dr discovered the strength in his right arm now has diminished just a little. It's not fair!

Anyways, I do think you have to take it day by day. Show your support & encouragement daily. I know it is difficult because I find it hard myself. I feel like I don't know how to handle it. Sorry I am not much help, I just wanted you to know I am right there with you! Also from what I have read in other posts, this seems like a good place to come to & vent all your frustrations! There's a lot of love & support here :smile:
 
Does your Dad like to travel? The best thing my oldest son (or anyone) has done for me is to travel with me, while everyone else was too busy. We've taken a few road trips and one trip up to the Pacific Northwest. We've built memories that will last the rest of our lives.

Failing that, just spend time with him. Find an old photo album and go over the memories. Or, better yet, find old pictures and put them in albums together as a combined project.

I've had to give up doing a lot of things, but I will always have my memories!

-Tom
 
Chase, building on Tom's idea, what about recording stories--you ask him questions and then record what he reveals...about his childhood memories, his work experiences, his family--Maybe combine looking at pictures with recording his reminiscences.
 
these are awesome ideas guys.
i just wanted to say, and i know it has been already, but really live each day for itself. i know everyone says this and lots dont do it. but really make an effort to just get thru the day. tomorrow will be different. it always is. try not to look too far into the future and get yourself too worked up about it ( i know this is SO much easier said than done, believe me!) And on the days that its just to much, then live for the hour. Sometimes even one day is too much. so break it down.
and though things may get more hectic with the caregiving, find ways to slow down and really pay attention and watch. my PALS taught me this though he doesnt know it. When i met him, he was already locked in and had no speech. so its awfully quiet over there unless i blab my mouth. its amazing how well you can get to know a person without the use of verbal communication.
You will see when he gets agitated and when he calms. you will remember little things to help him. i promise. you just have to find that inner calm and let it in.
the best of luck to you.
 
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