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cornflower

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Aug 12, 2007
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Loved one DX
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TX
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Dallas
My father was diagnosed with a form of ALS when I was a sophomore in high school. Like most teenagers, I had the false idea that we could live forever.. that loved ones would always be there. But as he grew weaker and weaker I realized how wrong I was.

Fearful of his passing, I graduated early from high school and started college the following summer many miles away from home.

I've been away a year now, but visit as often as possible.

What makes this disease so hard to watch is that it's progressive. It seems every time I go home there's some new medicine, some new machine, some new attempt to prolonge his life.

This disease has taken its toll on every member of my family. My mother, who thankfully is a nurse, is so obviously exhausted from the amount of attention my Dad needs. I don't know how she does it all the time without complaining once. I know my Dad appreciates her so much and hates such dependency. I overheard him and Mom talking last time I was home.. he spoke of giving up so he wouldn't be such a burden on everyone's lives. My heart broke.

There are so many things I want him to see before he says goodbye. I want him to see me make a success of my career, walk me down the aisle at my wedding, hold his grandchildren, and so much more.

Since his diagnosis, I have poured my heart into every Father's Day and Birthday card given to him never knowing how many more cards I can give. When I leave to go back to school I always give him "just one more hug" before I leave so save up for when I can't receive anymore. One more kiss on the cheek. One more "I love you".

I've tried to look for the good in things.. I probably wasn't as close to my Dad before the disease. I didn't talk to him as much as I should have. I didn't say "I love you" enough. I try to think that God did this so I would become closer to my father before it was too late.

But I still can't talk about his condition without crying. I don't know if I'll ever stop crying.

I just want him to always be there.

It's difficult for me to organize my thoughts so I apologize for jumping around on topics.

I'd like to know how others cope with these difficult times and what I should do.
 

brooksea

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Sep 27, 2006
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cornflower,

I tried to post a minute ago but don't know what happened- hope this isn't double post.

I'm sure your father has always known how much you love him. Don't feel bad about breaking down whenever you talk about his condition. I still do that about my husband, even though I try not to, and you never know when it will happen.

I pray to God that your dad will be able to see you graduate from college. But if not, he will know how smart you are anyway and be proud of the accomplishments you have already achieved.

Try to find out what your dad would like out of life now, it may surprise you.
 

ALS_son

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Aug 13, 2007
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5
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PALS
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US
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Maryland
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Baltimore
Hi Cornflower,

Everything you posted sounds so familiar. My Dad was diganosed almost a year ago. I must have spent the entire first month loosing sleep and crying half the night trying to cope with the news. Funny thing is, my sisters, mother and I all were traumatized far more than my father, because we immediately started researching what the disease is while he has deliberately avoided that. He kind of deals with it one step at a time, which is probably the healthiest thing to do.

I wish I could tell you it gets better, but it doesn't. After grieving for a while, you'll be able to resign yourself to where he is right now, but unfortunately, every new problem he encounters, new treatment he uses or new device he has to adopt, means the grieving process starts all over as you realize this process is more rapidly approaching the end of the road.

My Dad is 73, so he's already seen his kids into adulthood and we're all parents ourselves. To some degree that makes it a little easier because he readily tells everyone he's already seen all he needs to see and done all he needs to do. He's content with his life and is ready for death, or at least as ready as anyone can be. He has a strong faith in God, as our entire family does, and I can't imagine how to cope with this without God's strength and knowing he's going on to be with God and that we'll all join him in our time - a huge relief to understand that Truth. I kind of look at it in a way you mentioned, that perhaps this is a way that God allows so we and he can prepare ourselves for his death. He's been an awesome father in every sense imaginable. But like you, we've always taken it for granted that he'd always be there for us. He was so healthy, I always assumed he'd outlive me.

A few months ago, at my wife's urging, I started spending at least one day a week with him. At first, my parents didn't think it was necessary because it wasn't like he needed around the clock care yet, but I've been able to spend time with him telling him what I've needed to say, reminiscing about all the fun we'd had, letting him tell me things about his childhood and early days that I'd never heard before. If I didn't have my own family to attend to, I'd consider backing off work to increase the time I could spend with him.

If there was any advice I would convey to you, it would be this, spend as much time as you possibly can with him. I would personally think about taking a break from school to help out and more importantly to be around him. As a father myself, I can tell you with a great deal of assurance, that he loves you and is proud of you not based on your accomplishments, but because of who you are. Once the disease kicks in full-blown, it's not that long before you won't be able to have conversations with him. Only a year after being diagnosed, my Dad is rapidly approaching that phase. He's getting a feeding tube inserted this week and is quickly having to decide on whether to be trached or not since his lung capacity in down into the 25% range. I don't think he'll get trached, so he may only have a few months left with us. Since he can't do much except listen to music and watch movies, his favorite thing, and the only thing that perks him up, is to have visitors. It distracts him for a while and gives him something to do other than sit there and think about the disease and his impending death. But mostly, it surrounds him with his family who loves him which is the most comforting thing you can do, just be there with him as often as possible. That's not even mentioning how much your Mom needs you as well.

As my wise wife tells me all the time, you'll never regret spending every moment you can with him. You'll only regret it if you don't.
 
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