Still waiting

So this has been a particularly eventful and difficult week. My parents have been planning on going to New Zealand together. It can be hard to find places to travel to, Dad's quite affected by warm weather so it has to be somewhere cool/cold, and also need the flight to not be too long as it can get highly uncomfortable for him. Now he's always been stubborn, but it seems that dealing with MND has exacerbated his more negative traits, stubbornness included. My mum always hoped that they would travel Europe after my sister and I finished high school, so having to settle for New Zealand instead is difficult. Instead, he's been completely opposed to the idea, and she's been struggling with it.

And she couldn't handle it. When she's sacrificing so much, and asking so little, it would be nice if he could something nice for her. So tension was rising. Then there was an article on A Current Affair about a young mother of 2 with MND, and even those who don't know anything about it would be affected. I sobbed and sobbed, in a very cathartic way which was good in a way. My sister, as usual, didn't want to know anything about it, my mum watched it and pretended everything was ok, and my dad wasn't interested. It's interesting how this example shows so much about how we are all dealing with it.

Anyway, they replayed it on a breakfast TV show, and this time it finally got to Mum - added in with her anger at my father. So she informed a mutual friend about it, and apparently he had a word with my Dad and he finally decided to do it. So there's something, resolved, about that situation. I won't say good, because it was about bloody time that he did it.

Otherwise, he's starting to lose strength in his fingers. After chopping vegetables for dinner one night, he found he had difficulty signing his name at work the next day.

And he's recently informed us that he won't give up work until he falls, which infuriates me. Not only is he using up strength that he could be using so he'd have more energy with his family now, but in the event of him injuring himself at work it means that it'll a) take him way longer to repair than the average person b) make him even less mobile than he should be at the stage. Fucking ridiculous.

I'm struggling at the moment. Moods all over the place. Generally sad in a hidden way, but I have some good stuff happening for me, which keeps me vaguely positive. The way my moods come out is more me just being rude and patient, and naturally the worst of those moods are inflicted upon family.

I've been having those days that I have occassionally where the only thoughts that run through my head is "this isn't going to get better". I don't know how to get over that - how the hell do you accept the fact that stuff really sucks, and it's going to get worse. I mean, I've suffered from severe depression in the past, and people would tell me (not that I believed them at the time) that things would get better. And they did.

In this case, things getting better is a long way off, and nothing will ever be the same. Eventually when he passes, time will continue on and I will accept and move on to an extent.

But when I get married, I won't have my own father to walk me down the aisle. When I have children, I'll have to explain to my kids why they don't have a grandfather on one side of the family. There will be a constant lack, perhaps not imposing at all times, but a lack, always.

My friends don't know what to say. There are a couple of approaches in talking about it with me:

1) Listening. Offering minimal input and just listening. This is the most rare approach I've encountered
2) Optimistism. Telling me that maybe medical advances will save him. There is ONLY ONE thing that works, Rilutec or however it's spelt, and it made him worse. Anything that they're developing now will be too late, at least 5-10 years down the track after all the testing and development. this is the most common and infuriating response because it means they haven't fucking listened. When I say my father has a terminal incurable illness, I mean it. Don't tell me otherwise - it doesn't comfort me, it just makes me really angry. I should NOT have to explain that bullshit to someone. I want to talk about how I feel, not make somebody else feel better.
3) Telling me about other people whose parents have died. SMOOTH FUCKING MOVE. How the fuck is that going to make me feel better?
4) Telling me I should make the most of everything, and completing negating the fact that the illness, right now, is the least of my concerns. What I struggle with is the changes occurring in my family. I can't cope with that. I don't want to be at home, and that makes me feel guilty. When I am home, I can't handle it so I'm rude and closed off. If I could make the most of everything, I would. But he's pushing everyone away, and never tells me what's happening with him and his MND
5) Not mentioning it at all because they're too uncomfortable. This, surprising, is ok with me, because at least they're being honest. We all have different friends for different things, so I'm fine with having friends who know but don't talk about it with.

This is all I have for now