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Have a Happy Birthday. You deserve it Califsand.

AL.
 
Thanks Jane! You have good points and the perspective helps. My life has never been an easy one and there were times, especially when my son was small, vulnerable and totally dependent upon me where I thought I would never get past certain ways of life. It took time (I worked 80 hours a week for 7 years straight so I could support him) BUT eventually, hard work and time do create change and yes, looking back on those times it does seem that they were mere moments although they felt like eternities. Your words or wisdom, and all of the caring from all of you here really has made an impact on my mood this week. Thank you all for helping me get back to reality! It takes a lot to get me to a point of admitting that the depression is getting to me, that means it is starting to scare me. Talking to and reading what those of you have to say who knows where the feelings come from has been an immense help.

Thanks!

Sandy
 
hello from Calgary alberta

Hi sorry to hear about your Dad.I was Dx last June after a few years of symptoms.Primarily its my speech which is gone.Physically am still pretty good.Am 49 with a wife two kids 19 and 16.At times i think this disease is harder on the loved ones around us.I try and stay positive .I did a bike ride 100 km in June with my kids as a fundraiser for the big walk in Calgary in June check it out i have a website at www.bettysrun.ca under my name Kevin OKeefe.Speaking as a person with ALS I am sure your Dad would not want you to be depressed and down.Thats not easy I know,but try and be positive and live your life to the fullest,sure you will have your days when you just feel like what is the point in this thing we call life,but do not stay in that zone for long,because if dont this disease wins on all fronts.This is what i have told my kids.Dont put your life on hold because of this disease,which affects everyone in the family.Chase your dreams and goals and try as best as you can to be as happy as you can be .Its hard ,to be sure when a loved one has something like this.But I would bet your Dad would want you to do this.Anyways take care and stay strong....Kevin from Calgary
 
Sandy,
I'm glad you've found some comfort here. These forums are amazing. I don't know how I'd manage day to day if it weren't for them.
I hope your birthday was peaceful. I also hope that you'll continue to share and post whenever you need to.
Take care and all the best to you.
Jane
 
My Birthday is over and I'm relieved! I went and visited my Dad and he had a gift for me and he was obviously thrilled to give it to me :) My Dad is sentimental and often gives gifts of things he has, he's done that since we were kids and it is always exciting to see what treasure we will get. A good friend had picked out a card and used our nicknames on it and wrapped the gift and I am so grateful for her helping my father do that. Gift giving is important to him, especially when it comes to his kids. The look on his face, all lit up with a huge and beautiful excited smile were the best gift he could give me and I made a point of thanking his friend for helping make that happen. I got him a bit drunk and had a toast with him and then we spent an watching and listening to our favorite youtube music and videos. Lots of tears with our special songs "My Little Girl" and "Happy Together" but I alternated emotional songs with funny videos.. he loves the dinosaur farting one and the cow one "I like to moo". It was a great visit.

I know that my father doesn't want me to be depressed, of course, and he doesn't have a clue that I am. Hiding it from him is easy! Because my father isn't married I have taken on the role that a spouse would and my involvement in his care is huge. Now that he is in Hospice and not living alone or with me, I have more freedom to work but the daily visits and emotional impact on me severely affects my life. There is no way to avoid it. The further he progresses the harder it becomes. He relies on me to manage his care and now that we are getting to a point where I have to make more decisions for him it only makes it more important that I stay on top of things. Hospice and my father are a large part of my life and my visits are the highlight of his day. I can't take that away from him, especially now when he lays in bed all day and watches tv and watches the clock looking forward to my visits.

It is what it is and I can't change it. ALS is not beating me even though some days it feels as though it is. That only makes me human! Being a caregiver is hard, I know you all understand that, and you know that the fear of losing your loved one soon is what keeps us going from one day to the next at times, keeps the smile on our face for our PALS and on bad days, knowing we brighten up their lives is what gets us out of bed. ALS IS winning but my father is putting up a great fight and I am his biggest supporter. I feel like the wife of a boxer who is losing the fight, in the wings, trying to be a good cheerleader and stay strong while inside I feel every blow all the way into my soul. Yet I know all I can do is smile when he looks my way...
 
Wow Sandy,
You're amazing! What a heart of gold!
You're going to go on to live the most beautiful life because you obviously know what's important.
When your father is no longer with you, you will have that special peace for the rest of your life knowing that you helped him to a peaceful departure. You will carry the image of his face lighting up when you enter his room for the rest of your life. He has got to be one of the luckiest men alive to have a loving daughter like you who values him for who he is and loves him through and through unconditionally.
My heart goes out to you, Sandy. You deserve every good thing in life.
Thanks for telling us some of your story, sharing your deep feelings and dreams, and for keeping us updated.
All the best to you.
Jane
 
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