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Jamiekay

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Joined
Jul 27, 2013
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8
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Loved one DX
Country
US
State
Washington
City
Edgewood
Well it's been exactly 20 days since my daddy, my hero was diagnosed with ALS. I want to think that I am handling this awful news ok. I've gone to the local AlS chapter and I've done some research, I got my parents in touch with the AlS chapter near them. I've made some lists and I reached out to a therapist so I have someone to talk to. But I feel so lost. Unfortunatly I have just been trying to push down my feelings. At first I was too aggressive with everything, trying to figure out a plan for my parents, trying to figure out my role in all of this. My therapist told me that my parents are adults and they will plan, my mom kinda without hurting my feelings told me to back off a little. So I did. I buried myself in work and my family. I saw dad last Sunday, it went good, mom wanted an ALS free day. So we didn't talk about things. I didn't break down and cry in front of dad, I was really proud of myself. We met at a restraunt for breakfast. How stupid am I? First meeting after diagnosis and we go to eat? Dad started getting emotional at the restraunt and went outside. I've never seen my dad like that, I can count how many times I've ever see him cry in my 33 years. That makes 3. Once when I got married, once when my sister got married and then. It took all of me to focus on the breakfast and not break down. This is the strongest man I have ever known, this man I guess I always thought was invisible and he has to go through this disease that will take away everything. I hate it. I don't understand and I am so angry. At the same time I feel like I'm not really going through this, it's someone else- I am just looking through their eyes. It sucks that I know this is all part of the stupid grieving process. I write this and I know. It doesn't make it any easier, it all sucks.

When we were leaning after "the first visit" all I wanted to do was hug my dad and not let go. I hugged him like 6 different times, I kept finding reasons to go back inside so I could stay longer. Finally when it was time to leave, I was on the verge of breaking down I told my husband to leave and my mom came to the car window and told me that my dad told her to tell me to tell my sister,"Dad is doing good, he is fine, everything is ok."

With that we left and I cried the entire hour drive home.

I didn't see dad this weekend, they had plans to be alone. I respect that, after all they have been married 35 years. Together 39 years- heck maybe 40. Mom was 16 when she met my father. The only man she knows.

Wow. This is really sad, I'm trying to make light of it now. I'm not meaning to be so sad, I'm just so lost and I dont know what to do. I get to see them this weekend, they have a garage sale every year. Mom wasn't going to do it this year but I told her I would come and help, mom didn't want me to- money is tight and she didn't want me to spend the gas to drive there. Finally I admitted that I had duel motives to visit my dad too.

Thank you for reading, for letting me have a place to vent and be honest with my emotions.


- Jamie
 
hi Jamie,

it's good that you are venting here honestly, you need to be able to somewhere, though I'm sure your husband is supportive.

I'm not that far ahead of you so far as having the time to come to terms with this, but I am a little ahead, so I want to offer some comfort.

The grieving is the hardest in the first month. It doesn't actually stop, but it is the fiercest at this point, and you just need to do whatever you can to move through it.

My husband felt sure from around Dec last year that he has ALS, and I was in firm denial. We got a tentative diagnosis in April, and then a confirmed one in May. So from May to here is not very long. He is in his early 50's and we have only been married 2 years, so my devastation is huge.

But, I am far better than that first month, but I still have days it is hard, and we just take one day at a time. Sounds glib, but really the big picture is just too big, so I just look at little bits at a time and that helps.

The anger is justified, and you can feel it and know that we all feel it too. It was certainly the emotion that had the most impact on me in the beginning, now it just simmers there all the time but isn't at the front.

It's good that you've all got through that first meal together, the garage sale weekend hopefully will be slightly easier, but if not, remember you are all trying to cope with something huge, and it is very early days.

I feel a lot more sadness now than anger, but we also make a lot of fun times as we can together and everyone here makes a huge difference too.

I do so feel for you, that first month in many ways is quite a blur to me now already, and I'm only in the third month since diagnosis! It was often overwhelming, I remember that much.

So keep talking here, we can't tell you everything will be alright, it will never be the same again, but we can all work together to get through it with as many great memories created on the way as possible.
 
Jamie you sound like you are doing good...it is so tough especially in the beginning. I hope you will encourage your mom and dad to join here--they will need support too. We will all do what ever we can to help you deal with this.
 
And I know this is hard to remember, because it's your dad, but he still is the same man, his muscles just don't work. His mind, his spirit, and his love for you have not changed. Everyone is right that you need to grieve, but don't forget the inside of your father hasn't changed.
Hollister
 
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