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dadsgrl4life

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Loved one DX
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Hey guys! Its Heather again! Sorry its been another long time before writing and updating you guys. Where to start?

My parents are on cross country trip! They have been gone for 2 weeks now and wont return to the east coast untill after September 18th! They are having a blast and seeing soo many landmarks along their way! They even saw Lyarnd Skinyard(sp).

The other day when I was talking to my mom online, she mentioned to me that my dads left arm has caught up to his right arm. For those of you who are new on here...he has the slow progression but it doesnt seem to be so slow. He barely had range of movement in his right arm and now thats how it is in his left. Hes the one doing all the driving on their trip. To make it easier on him to drive he pulled the seat closer and will attach those driving balls(that make it easy to drive with).

Well thats where we stand at the moment with dads ALS. It hurt so much to read that his left arm caught up to his right. Whats going to go next? I am having the hardest time with this because I dont want to loose my dad. Im a major daddys girl and cant picture life without him in it. I have a feeling Im going to shut down completely and loose contact to the world.

Well I have to go do some things around the house before I head back to the new house with the boyfriend! I hope everyone had a safe holiday and take care!
 
Stay strong x

Heather, I am so sorry. As a No 1 Daddy's girl who lost her father to this disease I do understand the type of anguish you're going through. I will pray for you and your family. The only concession for me was that as a family we made every minute count, so much love went around which is something sudden death doesn't allow for.

God Bless you Heather,

Suzy x
 
Hi Heather,

I'm also a daddy's girl and I know how you feel. You will have ups & downs emotionally and it is important that you put into place a good support system for yourself. The reality will set in and then you'll adjust to it, and then he will develope new symptoms and reality will set in all over again. I have gone through this with my father for over 6 years and I never get used to the way reality knocks me off of my feet. For a while I thought my world would end if I lost my Dad. After watching him go through this for so long and seeing how sick he is now at this point, I instead feel that the world will end if he continues to endure this much longer. It's strange how the mind changes with time & experience. It does hurt to watch but I combat that hurt by spending extra time with him and maximizing it. Towards the beginning of his illness the only time I didn't get upset about it was when I was with him, he didn't want me to be upset so I would wait and when I left him I would sit in my car & cry. But when I was with him, I was treasuring his life.

Do what you can to live one day at a time and to focus on what is happening now, not on what will happen later. It is WAY easier said than done but if you can get yourself to do that you will feel less afraid. For years I panicked at the thought of losing my father, and I still do panic at times, but I've worked hard to prepare myself for it. I feel that I will fall apart when I lose him but at the same time, I will feel joy that he is no longer sick and helpless... it sounds like your Dad is still a long ways off from being this sick. Maybe you can try to make a deal with yourself that you won't grieve for him while he is still here. I had to make that deal with myself a few years ago because I realized that was what I was doing and it was working me over. I have shared a lot of great experiences with my father since he got sick and that is thanks to him wanting to do things while he still could. I pretty much told him that he could drag me anywhere and boy did he! He took me to do all of his favorite things and eat all of his favorite foods over and over, we even flew to New York together and he showed me where he was born. The best thing that I could suggest to you to help you cope is that you avail yourself as much as possible, especially while he is capable of doing these types of things, so that you can share that with him, so that you can celebrate his life with him and so that you can share in it. Get him to tell you stories about himself, eat with him, take him to his favorite parks or places, be his friend...love him.

Take care,

Sandy
 
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