50.
Hello my loves. WOW we've made it to the fiftieth blog post, if you're reading this one and you've read all of the ones before, thank you for sticking with me and my public diary entries. If you are new to my posts then Hello and welcome to my life, my little world of, well, I'm not to sure...this.
I'm listening and watching Sia - Elastic Heart, I absolutely love this song and I love the video! It's so incredibly powerful, I watch it without knowing what it is that is keeping me so drawn to it (maybe Shia's body...) but seriously please go and watch it, don't read the comments of the video if it's the first time you're watching it and let me know what you believe it is portraying. I won't tell you what I believe because I don't want my view to alter what you may initially feel.
I feel like it might be a good time to update you guys on my Dad. By the way, everything I write is solely my feelings and from my point of view.
Things have changed, things have become difficult. I mentioned a couple of posts previous that understanding Dad was proving more difficult. Now, his speech has become almost impossible for me to understand. I can sometimes understand the odd word or when he's calling me a 'wanker' but there are no sentences now. He tries to speak, he tells me things but I have to ask him to say it again and succumb to pretending I know what he has said and move onto something else. He might have dementia but he isn't stupid, he'll know I can't understand, how the hell must that make him feel? SHIT! Two weeks ago, TWO WEEKS I could understand him and now I can't.
He is so tired all the time, I don't know if that's because of lack of oxygen or if that's because he has become scared to eat food so appears to be hardly eating much. I don't believe they will let him have a peg fitted because of his lack of capacity, because he is unable to understand the pros and cons of one. Maybe they will see no option because he is starting to refuse food? They can't let him starve.
Today (Sunday) when we went to see him he refused his dinner all together and was falling in and out of sleep for an hour while I just sat there watching him. In the end I said bye and let him sleep. He looked so small curled up on his bed, I could see the bones from his rib cage sticking out through his jumper. This shouldn't be allowed, humans shouldn't become like this, MND shouldn't be allowed to do this.
It doesn't matter how frank I am about him, about the situation, about the disease, MND is the worst thing for someone to have. No body deserves this. When I say he has no muscle, when I say he struggles to swallow, that he's not allowed solid food. When I say he is dying I am not exaggerating, I can't lie about it, I wish I could allow myself to be a bit more naive to it all, bury my head in the sand a little but I can't, I'm sorry. This literally breaks me.
If this experience teaches me anything, if this experience can teach anyone anything, it would be that we are not in this world very long at all, anything can happen to us in a second so we really have to look at what we have and appreciate everything and be thankful for who we have.
Life is here to be lived, to be loved, to be enjoyed.
Much love
Beth xxx
Hello my loves. WOW we've made it to the fiftieth blog post, if you're reading this one and you've read all of the ones before, thank you for sticking with me and my public diary entries. If you are new to my posts then Hello and welcome to my life, my little world of, well, I'm not to sure...this.
I'm listening and watching Sia - Elastic Heart, I absolutely love this song and I love the video! It's so incredibly powerful, I watch it without knowing what it is that is keeping me so drawn to it (maybe Shia's body...) but seriously please go and watch it, don't read the comments of the video if it's the first time you're watching it and let me know what you believe it is portraying. I won't tell you what I believe because I don't want my view to alter what you may initially feel.
I feel like it might be a good time to update you guys on my Dad. By the way, everything I write is solely my feelings and from my point of view.
Things have changed, things have become difficult. I mentioned a couple of posts previous that understanding Dad was proving more difficult. Now, his speech has become almost impossible for me to understand. I can sometimes understand the odd word or when he's calling me a 'wanker' but there are no sentences now. He tries to speak, he tells me things but I have to ask him to say it again and succumb to pretending I know what he has said and move onto something else. He might have dementia but he isn't stupid, he'll know I can't understand, how the hell must that make him feel? SHIT! Two weeks ago, TWO WEEKS I could understand him and now I can't.
He is so tired all the time, I don't know if that's because of lack of oxygen or if that's because he has become scared to eat food so appears to be hardly eating much. I don't believe they will let him have a peg fitted because of his lack of capacity, because he is unable to understand the pros and cons of one. Maybe they will see no option because he is starting to refuse food? They can't let him starve.
Today (Sunday) when we went to see him he refused his dinner all together and was falling in and out of sleep for an hour while I just sat there watching him. In the end I said bye and let him sleep. He looked so small curled up on his bed, I could see the bones from his rib cage sticking out through his jumper. This shouldn't be allowed, humans shouldn't become like this, MND shouldn't be allowed to do this.
It doesn't matter how frank I am about him, about the situation, about the disease, MND is the worst thing for someone to have. No body deserves this. When I say he has no muscle, when I say he struggles to swallow, that he's not allowed solid food. When I say he is dying I am not exaggerating, I can't lie about it, I wish I could allow myself to be a bit more naive to it all, bury my head in the sand a little but I can't, I'm sorry. This literally breaks me.
If this experience teaches me anything, if this experience can teach anyone anything, it would be that we are not in this world very long at all, anything can happen to us in a second so we really have to look at what we have and appreciate everything and be thankful for who we have.
Life is here to be lived, to be loved, to be enjoyed.
"don't you dare abandon your blessing of light for my darkness"
Much love
Beth xxx
This post is so sad Beth, my heart goes out to you all, sending big hugs Suey x x x
ReplyDeleteThank you Suey! xxx
DeleteAhhh hun I can't even begin to understand what you are going through. Amazing post you are one brave lady. xox
ReplyDeletehttp://www.rainbowsandunicornsblog.co.uk/
Thank you Marie, it means a lot xx
Deletea very sad post Beth you a brave one Beth ..in your Dads Heart and inside his mind he knows you are there and love him so much..be strong be brave
ReplyDeletefrom across the pond my arms reach out to give you a ;loving hug xxxxxxxx
Thank you :) xxx
DeleteI don't know what to say Beth, but I hope you know I, and so many others are thinking of you. Sending you a big big hug xxx
ReplyDeleteThank you Tracey, it means so much xxx
DeleteMND patients usually have a peg long before they get to this stage whilst they are well, I would question this for your Fathers sake , he will then be nourished and have more energy.
ReplyDeleteToo true , hugs xxx
ReplyDelete