Being A Carer

Me and @raspberrytalk on our Wedding Day

So when my raspberrytalk's health started to decline, I automatically became his carer.
Why did I do this?
well at the time i thought i would be the best person to do the job because me and raspberrytalk are so close and i've known him for over 17yrs.



Me and Raspberrytalk a few years before his health started to decline.

What I never realised at the time was what a toll being a carer would have on my emotional well being. I also never realised it would have such an impact on my general health too.

Because both raspberrytalk's physical and mental health conditions are so up and down,I never know what one minute/hour/day is going to be like. family and friends tell me to try and relax more, but it's hard to do when you just don't know what is going to happen from one minute to the next.

Don't get me wrong, I did know being a carer would be hard but I never thought it would be as hard as it actually is! lol
I'm sure there are many other carers that feel the same way and find themselves feeling guilty because they want a break.





This week me and raspberrytalk thought about going to the cinema. we don't often get out and we both really want to see the new Simon Pegg & co movie, The World's End.
As we walked from the car park to the cinema we noticed a lot more children than usual hanging about ... and then I remembered the summer holidays have started!
well as soon as I saw how many people where queueing up inside the cinema I knew it would be a problem. Since his health has declined raspberrytalk has not been able to do crowded places because of his mental health problems. So we decided not to go into the cinema because it may have caused raspberrytalk to have a panic attack.

Raspberrytalk doing what he loves January 2010

yes I was frustrated but I have to think of raspberrytalk's health, whether that be his mental health or physical health. Having to deal with seeing raspberrytalk's physical decline is frustrating and emotionally draining enough, but on top of all of this i'm having to see his mental health decline as well.
People ask me how do I cope? And you know what? I don't know if I am truely coping. My reply is usally "you've just got to get on with it because it's the cards you've been given".

being a carer is one of the hardest things to do because, if like me you're caring for someone you love, it can be emotionally draining and there are times when you just want the person/life to be how it was before that person's health declined.



I still think there is not enough help out there for carers, especially for carers that are having to deal with mental health issues.

like i said earlier, my own emotional well being has been effected. i have to take pills to help balance me out but, even with being on them, i still feel like screaming/crying most days.
why do i feel like this? because i am watching someone i love go through pain everyday and watching the person i met years ago slowly slip away. And that's the hardest part of all.

 

       

take care of each other
carer's vent

Here We Go Again

As most of my regular followers know, @raspberrytalk has non-epileptic seizures which he has been having since last may. Those of you that are reading my blog for the 1st time - just read this link seizures.

We have recently been looking after my mother-in-law's cats, Bill and Ben. This morning Bill was acting not like his usual self - he was constanly moewing at us and jumping up onto the bed. Now most people will say he was asking for food, but this is not his way of asking and normally only ever goes on the bed if we're not there or already asleep.
Anyway, at one point Bill was sitting on raspberrytalk's chest and just staring at him as if he was waiting for something to happen....

Well a few minutes later something did happen - #raspberrytalk started to have a massive seizure!
It must have lasted at least 20 minutes - or it felt like that. Unlike epileptic seizures #raspberrytalk is aware of what is happening and can feel everything (his seizures are musclular and extruciatingly painful), but just like an epileptic seizure he can not communicate or do anything about it.

Throughout this seizure Bill the cat stayed with #raspberrytalk - that was until #raspberrytalk accidently kicked him of the bed.
But rather than Bill getting grumpy he just sat on the floor looking at #raspberrytalk. I swear Bill knew this was going to happen and I know most people say cats don't really care about us, but I challange that view. If you saw how Bill is with #raspberrytalk and how he takes care of him, you would too.
Afterwards, while #raspberrytalk was recovering, Bill jumped up on the bed again nuzzled up to him and started meowing again. Moments later #raspberrytalk was off again with another massive seizure, this time Bill was quick enough to jump out of the way.

So how was I coping with all this? I did what I usally do - make sure #raspberrytalk was safe. But inside my heart was breaking because I could see the pain he was feeling during his seizures. This is one of the most frustrating things. I can see he's in pain but there's nothing I can do.
After each of his big seizures, #raspberrytalk had what I call his "aftershocks" - smaller less intense seizures and muscle twiching. After the last big one was over he couldn't move one of his legs and his hands/arms kept twitching and spasming. #raspberrytalk describes this as someone else having control over his hands - a bit like the Seth Green film Idle Hands

As I'm writing this #raspberrytalk is in bed asleep, with Bill on the bed watching over him. It's amazing how much effect having cats around has on you and how you feel. Apparently they actually use cats as therapy in some hospitals.

So that was an interesting morning ... also as I'm writing this I'm listening to some tunes just to take myself away from everything. #raspberrytalk often says he's the one having the health problems, but I'm the one who suffers from them, lol

Joking about it is his way of dealing with it, because I know he's really worried about me and how I'm having to deal with it all. I'm the one that has to keep it together.

And you know what? Sometimes I do feel like I'm gonna go mad or just snap.

Take care of each
Carer's Vent

Let's go out for a meal!

Recently me and @#raspberrytalk celebrated our 9th wedding anniversary and #raspberrytalk decided we should go out for a meal. We were staying with Raspberrytalk's dad in Scotland, who had his 70th birthday earlier this year. I will be 40 at the end of this year so #raspberrytalk thought it would be great to do a combined double Birthday and anniversary meal, which I thought was very sweet of him.
But, as always, at the back of my mind I was worried that while we were out he may have a seizure, panic attack or, worse still, Rob might come out to play which would not be a good thing to happen in public!
Actually Rob coming out to play is never good. I never know how to respond to him because no matter what I say he ends up verbally attacking me.

Anyway we found a nice hotel restaurant and, because it was mid-week, I thought it would be not too busy ... which luckily it wasn't.

Raspberrytalk's step mum made the booking for us and when we arrived they showed us the table reserved for us which was, typically, slap bang in the middle of the room.
#raspberrytalk likes to sit with his back against a wall and be able to see the exits. This is not a new thing as he's always been that way since he was young. But recently with his onset of severe anxiety issues and mental health issues, a small matter like this can often set off a serious panic attack or worse!
However, his step mum was already on the ball before I could even say anything and she immediately turned to #raspberrytalk to ask where he'd prefer to sit. This was great because I could see that he'd already started to tense up as soon as he'd spotted the "reserved" sign on the table. He had a quick look around the room and chose a table in the corner and I could feel he had started to relax and calm down.

So we got seated at the more suitable table and it was relatively quiet. All seemed o.k with #raspberrytalk, but it wasn't long until his body decided it was not going to work properly.
It started with his arms. The muscles were already hurting and arms were shaking, when they suddenly decided not work at all (muscle paralysis). They dropped to his sides and he couldn't move or feel them. After a few minutes they suddenly jerked up and started working again, but his right elbow was locked. His shoulder worked, his wrist and hand worked, but try as he might he could not bend his elbow.
While all this was going on I was talking to #raspberrytalk and he was worried that I would have to feed him again as sometimes happens at home, but we were in public in front of his Dad! He was getting very upset, frustrated and embarressed and all I could do was tell him not worry and not to get too upset if that was going to be the case. I got up and just hugged him and he started to feel better.
I can't even begin to know how #raspberrytalk feels when his body does these things, I just know that he looks scared and I'm scared for him. And I'm also very frustrated because there's nothing I can do.

Eventually Raspberrytalk's arms decided to both work properly again, just in time for him to have his starter, which was a relief to me and to #raspberrytalk. I know how embarrassed he gets when I have to feed him.

We were having a very nice evening, chatting and laughing and #raspberrytalk managed to have his starter and main course before his body once again started to not work properly.
This time it was his eyes that decided to play silly buggers. They very suddenly became extremely sensitive to light. I have migraines so I know just what it's like when you become sensitive to light and I was worried that #raspberrytalk was going to have a seizure. Sometimes he becomes extremely sensitive to light and sound just before having a seizure and we've learned to use it as a pre-warning. But luckily on this occasion it wasn't the case and after I gave #raspberrytalk another cuddle and shielded his eyes for a bit, the sensitivity to light went.

I don't want to sound selfish or horrible, but I do sometimes wish these things didn't happen, especially when I'm trying to relax. Unfortunately these things happen randomly, which is one of the hardest things to deal with. At least if there was a pattern I could handle things better and work around them, preplanning what we can and can't do and where we could go.
But this is not the case and we are both slowly learning to deal with things as they come. We're both still trying to come to terms with what's happening to him and #raspberrytalk is still trying to accept that there are somethings which he simply can't do any more. His mind is willing, but his body is just having none of it! lol
I just sometimes wish I could take five minutes to relax and not be on red alert constantly. I know this sounds horrible, but it's how I feel ... and I feel guilty for feeling like this, which just adds to the stress! I'm sure other carers out there must feel the same, especially carer's that look after people with invisible illnesses.
But there are no magic wands to make it all better - hence the blog! My opportunity to vent some of my frustrations ... and hopefully give some peace of mind to anyone else out there feeling some of the same things.

I would like to thank Raspberrytalk's dad and step mum for all their love, support and kind words they've given us over the years ... and for putting up with us both!

Take care of each
Carer's Vent