Daddy Update and other stuff!

32.

Hello my loves. I keep thinking it's Sunday today, I don't know why but I get happy when I realise it's only Saturday. I just wanna talk to you guys tonight, I want to express any thoughts that pop into my head so I have no idea how this blog is gonna go. 

First of all though, I'm listening to a band called Mallory Knox - Shout at the Moon, I heard their song on Kerrang radio this afternoon and loved it. I will probably change songs while writing this because I really want to listen to Damien Rice for some reason. Check them both out, my music taste isn't all bad I swear. 

I have realised this week that I really can't express myself in the correct way to people. If I'm upset or angry about something I would much prefer to live with those emotions for however long they stick around for, rather than actually saying out loud that 'this is the way I'm feeling and you are a part of that'. I am far more worried about that persons feelings than my own and I'm not sure if that's how I should be. I don't want to come across as a person I'm not, I don't want to upset anyone by saying I'm upset. I don't like to disagree because I don't want to feel like I'm having to justify myself for having a different opinion but I know one of my traits is that I'm very opinionated so how does that work? 

The times I do say how I'm feeling to someone, when something has happened that upsets me, I think I sound aggressive and as if I'm gunning for a fight but I'm not, it's because it takes a lot for me to actually do that and I'm trying my best not to cry (I cry when I'm mad/upset/confused/hurt/everything) because I feel so incredibly uncomfortable in that situation. I'm not very strong and I hate to show I'm vulnerable. 

Does anyone else get like this? I need to be able to express myself without sounding like a complete d**k basically. 

I saw my Dad today, we didn't take him out for lunch because the weather was so bad so we got there as he was waiting for his pudding at the home. His face when the nurse said 'Do you want some spotted dick Ron?' was hilarious and we all had a little giggle when she walked off. I get really anxious when he is eating because I desperately don't want him to choke, I really wanted to walk off and wait for him somewhere else but I didn't. I kept telling myself that if he's going to choke here there are a lot of people around who know what to do, thankfully though he didn't choke. 

The weakness in his upper body is far more apparent now than it ever has been, the struggle to pull himself out of the chair is heartbreaking to watch but we can't help him, although it's a struggle he is still able to do it. He only refuses any advances to help anyway, which is a good thing because he is determined to do these things for himself. 

I struggled to understand some of the things he was saying today, I think the reason was because he seemed pretty tired, he seems to get tired very easily now. Only a few months ago he was still walking around the town and seemed to never be at the home but now he is always at the home and never in the town, which is both a good and bad thing. It's good because we aren't worrying as much about his safety etc but bad because he isn't and won't be getting any better, only worse. I hate not being able to understand what he is saying, I never want him to feel as though he doesn't make sense to us, I don't want me asking him to repeat himself and me still not understanding to upset him. 

Once Dad had finished his dinner we went to his room and he usually puts the tele on or will put music on for all of us to listen to and we will talk about his photos on his wall and have a bit of a giggle but today he went and lied on his bed, and he just lied there for most of the time me and Rob were with him. I've not witnessed that before. My brother later told me that he does that most of the time when he's with him. But yeah, it upset me because I saw him differently, he seemed withdrawn and tired and I found myself thinking about the book The Fault In Our Stars because there's a part in that where 'good days' get less and less and you never know which will be 'the last' and I found myself thinking 'will the good days start getting less and less now?' I know that sounds pretty dramatic but when your loved one is facing the unknown of how their illness's progression will go you find yourself thinking all sorts of dramatic crazy things.  

He called me the other day upset and he was thinking about the sad time none of us ever want to happen and I was helpless, I couldn't give him a hug, I couldn't say things are going to get better because they aren't, we know that and he knows that. MND will take him before he should go, before he's ready and that's so cruel. He told me he knows he has Dementia, the one thing that feared him the most, the one thing we have all been trying to keep from him and he knows he has it. When will this world give him a break, can't he have a week of not being upset, not being scared???...I forget the world doesn't act like that.  

I'm sorry I talk bluntly about this, it's because I can't sugar coat it, I just can't. I can't pretend to people that it's all okay when it just isn't. I have wrote to you guys about this since I started my blog and I want to keep you all as updated as I can so I really do apologise if this subject gets you upset, it is upsetting.

I MND to get more awareness and I think if we can tell others what it is and how it affects everyone around it, it will get more awareness.

Thank you for reading all that if you did. 

Much love
Beth xx

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