About this blog

I decided to write this blog because I have been trying to find information about strokes and how it affects the family rather than just the person who had the stroke. Most of the stuff I found was just support groups and how family can help the patient. I didn't find many personal stories of how it affected the family as a whole, and didn't find any blogs about the carers. Usually, the focus is on the person who has had the stroke, but those who are directly involved in their care, are misrepresented. And so - Who cares for the carers? was launched. I have crammed the first month into a few posts since we are only a month into his recovery, but once I am up to date, I will update any time there is anything to tell. I would love to hear from anyone in a similar situation, or even if reading this blog has hit a chord or helped anyone, then my job will be done. It is also therapy for me to be able to write what's on my mind. The road to recovery is a long one, both for the sufferer and their families.

Tuesday 21 July 2009

Support for ME

Today I have a lady coming to visit me from the carers association. Pity it's taken almost 3 months for ME to get some advice and support, but still, I'm quite looking forward to her coming. Having someone to vent to, ask questions to and hopefully not get the text book "you need to look after yourself too" speech. That's great but HOW do I do that? I don't have the time, and right now we're not getting the help for me to take 5.

I'm also looking forward to getting some kind of answers, like whether it's normal to feel the way I do, whether the things that are happening in our family dynamic are usual after this kind of illness. And maybe even get put in contact with another young parent who is also a full time carer for their partner. I think that would help me enormously, so I'm hoping that's an option.

I'll update again after she's been.

Forms, forms & more forms

It always amazes me how many forms you have to fill in to get anything. There's the housing benefits form, the income support form, the DLA form, the carers form, and I'm sure there are others I haven't remembered. All about 5000 pages long. Of course I exaggerate, but it sure does feel like it filling them all in. About the only thing they DON'T want to know is if you have a beard or not. They should have a system where you put ALL the info into one data base and then they can calculate all the benefits from that one database, and not have to fill it all in for every single benefit.

It amuses me somewhat, that they expect someone that has limited attention span, and periods of confusion, and that is easily overwhelmed, to fill in countless forms which require information about everything. Sure they can send someone out to help you fill them in, but that takes weeks and delays the benefits you may be entitled to.

So we have battled through the housing benfit form, and the income support form (with the added bonus of a call from the job center to verify information and ask lots more questions. 40 minutes worth of questions.) and this afternoon one of his friends is coming over to help him with the DLA form. And once his sick leave is over, we get to do it all over again with the ESA forms.

Oh the joy. I do wonder whether if we spoke a different language, if everything would be done for us, and quicker.

Something good

We have decided to get married. We were engaged, but had planned a big lavish wedding in a few years time, all out fantasy, the castle, the big reception, the penthouse suite, piper piping us into the castle etc..... Well Bye bye fantasy. For now. We needed something to look forward to, something to take our minds off all the happenings of late. All the crap, illness, stress. It will be a small do, just a register office wedding, and a small reception back at the house, with a local restaurant delivering the food. I also want to show him that despite everything I'm not going anywhere. I know it's crossed his mind before to push us away so that eventually we'll leave, and he needs to know that that isn't going to happen. Of course that's not the only reason. We were going to marry anyway, but after everything that's happened, I've realised that some things are more important than the big fancy wedding I dreamed of. I don't NEED the pretty location and the chocolates on the pillows. I need HIM, and my family.

Monday 20 July 2009

And so...

I haven't been here in a couple of weeks, just seems some days that I try and block everything out and pretend it's normal, and so writing about everything would bring it all crashing down. Some days it's almost back to normal and I dare to hope that it will be like that forever, but of course, I'm fooling myself, and so when it goes back downhill, it's a downer.

A couple of times now he has had really bad days. Where he can't use either of his arms, even though only one of them was actually affected by the stroke. One minute he can be 'ok' (and by ok I mean able to function somewhat,not perfect, but managable) and the next things are crashing to the floor and his arm has just stopped working mid chore. Take this situation. I'm in the living room dealing with 3 very active kids (all 4yrs and under) and I hear the crash. I come into the kitchen, and the kids follow. I have stuff all over the floor that needs cleaning up, I have kids trying to get in there (and usually it's stuff they can't touch, broken stuff, or medication or something similar) and Walter sitting at the table in a breakdown. How the hell do you split yourself 3 ways? Which one do you do first? Sure the easiest and safest option is to clear away the stuff on the floor, but then the kids are running about and making a noise, which is only making Walter's confused state even worse. Right about this time is when I want to just fall in a heap and admit defeat. But do I? No. I gather my thoughts together as quickly as possible and get one child to give daddy a cuddle while I get the other child to help me clean, whilst making sure they don't eat or cut themselves with any substance on the floor. while keeping the baby out of the kitchen by putting him over the stairgate.

Some days I wonder how much more I can take. But I will. Because that's what I have to do. That's what I WANT to do, it's just sometimes I need a break. And I don't get that. From 7am til 7pm I have the kids running about and don't get to put my feet up and just read a magazine and have a cuppa. I could do that, but I would still hear the kids, and then I'd be worrying that he's not coping with the noise or whatever. HE can have naps in the day, and I send him off, even though I could do with a nap myself some days, but know that I can't. And when the kids have gone to bed, I have to sort our tea out, and make sure he has his medication set out for the next day help with anything that he needs doing that he can't do himself.

But I'm not after sympathy. I CHOOSE to do it, therefor do not require or neccesitate any sympathy. Just understanding. If I don't reply to your emails, or phonecalls in a nanosecond, forgive me. No don't forgive me, because I am not doing anything that would require forgiveness. I am looking after my family the best I can, and I won't apologise for that.