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.

Monday, 29 June 2009

and more waiting....

Well the nurse has just left, she was somewhat helpful, but we still have lots of waiting to do. Waiting to get an appointment with the consultant physician, waiting to see the rehabilitation services on 13th july, waiting for her to send a referral to the carers service who will be able to help ME cope with everything that's happened.

Aparantly the woman who will come out to see me is up on all the benefits I might be able to recieve, and also things I might be able to claim for the children too. There's also the possibility we could claim incapacity benefits until we get some definite answers, but we'll need to see citizens advice to find out exactly what we could get NOW, instead of waiting to what we COULD get later on.

He also see's his GP tonight (5.30pm) so we'll see if she can shed any light on anything, although I susect she'll just say "still sick? Ok here's a sick note" which is what she did last time.

We did, however learn a little bit more about what happened and why. Aparantly the stroke was caused by a small clot, which nobody ever told me about, they may have told him, but he has trouble remembering things, which was why I asked that I get told everything so I can remember for the both of us.

So... Tomorrow, call CAB and see when we can get in and see what we're entitled to, then go from there.

One day we'll catch a break

A couple of weeks ago we went to see the housing people who informed us that we could claim housing benefit to help with the cost of the rent while we wait for a council house to become available, which could take an eternity. Then we found out that our child tax credits had gone up, and we thought things were finally looking up for us.

And now we're back down to earth with a very big bump. The council wrote to the letting agent and landlord asking for a reference, and now we have recieved a letter from the letting agent telling us that if we get a council house during the tenancy, we will still have to pay rent AND any utilities on the property until the agreement runs out. That's April 2010!! This is not good news for us, because we can barely afford the rent as it is, let alone the bills that go with it. We're going to seek legal advice to see if there are any loopholes around this because we will be in serious debt if we are forced to stay here for another 9 months.

We also have the stroke nurse coming this afternoon, so hopefully she'll be able to help us with some of our problems. Will update after she's been.

Tuesday, 16 June 2009

Help in the most unexpected form

Usually you'd expect help from those closest to you, friends, family, maybe even your work place. But the place that has really jumped up and stood by us, and bent over backwards to help us, has been Kimi's nursery school. I've always been impressed with Kimi's school, she absolutely loves it there, can't wait to go every day, and if she's happy, then I'm happy. The teachers are amazing, and always keep you in the loop and discuss any issues they have with you, and come to an agreement. Not that Kimi's ever been in trouble, but you know, random stuff.

Well just after Walt had his stroke, I was having to pull Kimi out of school early every day, because visiting times at the hospital were from 3-4pm and she goes to school from 12.45-3.15pm and the hospital was half an hour away. So I had been picking her up at 2.30pm every day until he came home, and I had obviously explained the situation to the school who were fine with it all. The head teacher had called me aside and told me that if it would help, that JJ could start on her birthday (september) instead of January [she would normally miss the cut off for a september start] Which I thought was great. Then I got told that she could start in August because they are starting a pilot scheme for 2 year olds, and she could start there, then join the bigger room after the first couple weeks. The pilot scheme isn't for every 2 year old yet, only those who meet a criteria, and JJ would be put forward as a special case. Then I got told that James might be able to start in January because he'll be 2 in October, and because of his prematurity (he was 7 weeks early) and development and speech delays, he would qualify too. All to make things easier for us because the head teacher was also a carer for her own husband and she told me that she found it hard work, and she didn't have 3 young kids too.

Kimi's school are doing a trip to a safari park in july, and I had told them that I might not be able to go (all kids have to be accompanied by a parent/relative) because of everything going on, and they had tole me that because of our circumstances, that they would send the school nurse with Kimi so she didn't miss out. Last week I decided that I would try to go, and told the asst. head that I would like to go with her, but have to see whether I could get the money together for my ticket. It's only £9, but christ, £9 seems an awful lot of money when you don't have it. Well that day when I went to pick Kimi up from school, the head called me into her office. I was thinking "what's she done!" but when I got there the head told me that I WAS going and so was JJ, and she didn't want any money!

It's funny, there seems to be more support from the 'unexpected sources' than the people I 'thought' would help.

I love her school so much, I just hope we can find another house within the catchment area. But that's another story.