only so much

[notagian]

I can't beleive this is happening! It was hard 2 go through once with my father. But agian, now with my sister. The worst thing is not that u know what 2 expect. But the waiting for what u know is comming next.
We have always had a closeness that others viewed as almost dysfunctional. Maybe that 's why she didn't tell me untill last month. It's like she wants everyone 2 accept it and move on with day 2 day stuff. Not let this terrible disease change anything. But how can this not change things!
I know her, she will not get 2 a point where she can't function. I know that it has 2 b her choice. Which means even less time with her. Although it is her illness & her mortality, it also effects every-one that loves her. We can not just pretend that we have all the time in the world. It's such a presious thing, time. It begs the question is there ever enough of it when it comes to the ones we love? And do we make the best of what we have? Just something to think about.
I want 2 make sure that she know what a great person, wife & mom she is, how luckly I am 2 have her 4 a sister. How she has impacted all of our lives. I want 2b her rock for a change! 2 give back just a tiny fraction of what she has given me. I want her 2 know she will be missed. That no 1 should have 2 suffer with this, least of all her. I wonder if I can live up 2 her expectations when she's not here 2 guide me?
Notagian

 

[michael0314]

Wow I feel so bad for you. Your right no one should have to know 2 people with this desease. Speaking as newly diagnosed person with the desease I want the same as your sister. I don't want to waste time mourning now. I want to be happy and make the most of the time I have around happy positive people. I know that is selfish and a little unrealistic. Make the most of the good times, dont waste it mourning what will come latter, untill its here. I hope my perspective is helpful. My thoughts and prayers go to you and your family.

 

[notagian]

Thank you so much the reply. Your prespective is very helpful.
I can not tell you how sorry to hear about your diagnoses. Now here's some words of widsom, from my prespective. Your family needs you now as much as you need them. As this progresses, they will need to feel like they are helping. I can not begin to express how helpless this makes us feel. A can you get me a cup of tea here or there is equevelant to throwing us a bone. And we are greatful for it. Anything makes us fell that we are making this easier for you.
Clear up your end of life issues now. You do not want someone else making those desisions for you. This desease can be slow,very fast or both. Its not easy, but talk about it, so it does not become the elephant in the room. If you talk about it it's like giving everyone else premission to talk about it.
I could go on, but that it's for now. And thanks agian for your reply. It really means alot.

 

[Marjorie R. Wilcox]

I hope you tell her what is on your heart or that she reads this. My heart goes out to you and all the family.