Supposed to be cleaning the cupboard out :o/

19/08/2013 14:08

With my head in the cupboard that needs clearing for the gas man I started to think (dangerous I know)...

I've come to the conclusion that my flump of a mood is directed at Dementia, and just how isolating and lonely it can be as a Carer. Dementia just doesn't rob the person suffering from it (and that is awful in itself), but it robs the people surrounding them too.

I don't think that people realise just how lonely a place it can be, and I can only blame this illness called Dementia for that. I used to work. I used to go out. I used to not have to think about doing either. Now I do neither. I don't have any hobbies because the ones that I did do are too messy for hubby to manage. I try to read, because I like words, but sometimes it just isn't possible, and even if I could the little darlings are on the Kindle - bless them.

Whilst hubby has his driving licence, he is here there and everywhere, and whilst I like to walk (now that I've shifted some of the weight that needs to be lost), just the fact of the car not being outside the house unsettles me. It's not that I want to go anywhere, but if I did I couldn't. He's allowed to go where ever, when ever, but I have to justify the petrol costs, and it just isn't worth it. Driving used to be my escape. Now that's gone too.

I used to like my computer. Now I see it as a lifeline. I know there are other illnesses, and I'm not being naive, their carers' have it hard too, but with this one it's invisible. You can't see it. You don't know it's there. It's a shadow in the background. I see this blog as a saviour. I tried writing a diary, but then that's physical evidence of my feelings, and whilst writing a blog is the same there isn't the heavy book in the corner of the room for my ramblings, rantings and guilt. They're locked away in a little black box with keys on it that I can look over when I want to, although I never do. Sometimes my ramblings may be disjointed, but I write as I'm thinking and my fingers tippy tappy over the keys and get my thoughts out of my head and once I've pressed "publish" they're away. They aren't in my head anymore, but if I'd written them in a diary the words would be there. All the time. 

Through this horrid illness called Dementia, I've "met" some fabulous people. How have I done this? Through Twitter. The world is a big, wide place, and whilst that can add to the feeling of isolation and loneliness, it has also brought me together with people I would class as friends - if I ever met them, and they have no idea how much their comments, posts and photographs mean to me. I might not get to leave the house very often, but in my head I can be in Australia, the Hebrides, "home", and anywhere else they're posting from.

Whilst I choose not to research too heavily into Dementia, I appreciate and value to the people who bring things to my attention via Twitter. If they're posting about it, then it's verification enough for me, as far as I'm concerned. I read things that are appropriate rather than the scare mongering you can come across online. We buck the trend so much with this illness, it's safe to say that we're probably going to do Dementia differently from the norm, so why look for pointers that we might not point towards. I value the "wing it" approach too. It suits us because this illness shows no kindness in how anyone suffers from it, so a game plan isn't going to work, and even if it did today it might not tomorrow, so why add to any stress by failing at a game plan?

I don't feel so alone on Twitter. Whilst we all have it differently, just knowing there are others who feel similar to me makes me feel less unsettled for feeling the way I do at times. Guilt, I think, is the hardest emotion to deal with - or it is for me anyway. I can feel guilty for this, or guilty for that, or guilty for not doing this, or guilty because I have done that, and it's always there at the back of my mind eating away. Dementia feeds guilt. I think both of Dementia and guilt are as bad as each other. They don't discriminate and they can both bring you down. What I need to do is find a way of seperating the two, so one doesn't feed the other. When I've discovered this, I think I will bottle it - surely I can't be the only one that feels like this. Dragon's Den beware lol.

All in all, I'd like to say a big thank you to those of you who take time out of your busy lives to read my ramblings. A big thank you to those of you who are my friends on Twitter, and for the comments, retweets and favourites that you lovely Tweetlets give me. It means a lot. xx


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Photo used under Creative Commons from VinothChandar © 2013 All rights reserved.