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.
Monday, 29 June 2009
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.
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.
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.
To be or not to be, that is the question
A friend of Walt's from his place of work has also been signed off work due to a crumbling spine amongst other health issues. From what he was saying there are various different benefits we might be able to claim, housing benefits, council tax benefit, carers allowance, disability, mobility allowance, and a few others I can't remember the names of. He said that in total he gets £500 a WEEK! I don't want to get my hopes up that we'd get the same but wouldn't that be nice? That's more than Walt used to earn working! Of course there's a chance we won't get that much, but for now I prefer to dream about a world where I DON'T have to worry about how I'm going to pay the next bill.
Monday, 15 June 2009
Why won't anyone help?
This week we've been trying to find out if there is any help for us out there in Strokeville. Why is everything so complicated? Disability says you have to have been off for 3 months and likely to be off for the next 6 months to qualify. Just who the hell is going to pay our bills while we are waiting for their poxy small amount per week anyway? Sick pay is worse than the disability, and we are living in a £600 a month rented house, earning £88 a week, plus tax credits and child benefit. Needless to say nothing is getting paid except the rent. Nobody will help us until he has a note saying that he CAN'T work, and yet the dr's keep fobbing us off, come back in 4 weeks. This is all well and good, but in the mean time he's not allowed to drive, and he's not allowed to work, and yet nobody wants to do anything to help us. We have both worked since leaving school, well at least I did until we had the kids, but then he was working full time. We've never been on benefits before, we've worked hard, and yet some people seem to get benefits with no problem. I'm sure we all know the kind I mean, and then people like us, with a life changing issue that we could never have forseen, has to get in debt because nobody wants to know. Calling the lenders or other utility companies does absolutely nothing, they want your money and that's it. You should have taken out payment protection. All very well, and yes maybe I should have, but even if I HAD have gotten payment protection, it wouldn't pay out because it's NOT me who is sick, and the bills/debts are in my name.
I can't even work myself because of the kids, he can't manage all 3 of them by himself and there is no way I could afford childcare for 3 kids and make enough to pay the bills as well.
I can't even work myself because of the kids, he can't manage all 3 of them by himself and there is no way I could afford childcare for 3 kids and make enough to pay the bills as well.
The days that followed his discharge
The first few days following his release from hospital were spent walking on eggshells, threatening to throw him back into hospital because he just didn't seem to undertsand that he had to take things easy. It was all "I'm just doing....." or "I'm alright!" It frustrated me that I just couldn't get it through to him that he needed to rest or he could end up back in the place that drove him mad. mowing the lawn 2 days after getting out of hospital was a definite no no, but how do you get that across without seeming like you're nagging?
I undertsand that he has just gone through a HUGE transition in his life, not just the stroke itself, but the after effects as well. He had gone from the bread winner, the Man of the house, the protector, the lover, to being dependant, told he may never work again, or drive again. To not being able to open a packet of aspirin. One day I was sitting in the kitchen and I reminded him to take his medication, because his short term memory isn't so good. So he went and got the boxes out and started taking the cocktail of pills he had been given. Until he got the the aspirin. He was fiddling and messing and eventually I asked him if he wanted me to help. My response was the pouch being thrown at me in frustration. I get it, I really do. But sometimes it's hard to just carry on as normal.
I am the kind of woman who doesn't take crap from anyone, and here I was being shouted at and trying so damned hard to walk away and not retalliate. I don't care what anyone says, it's HARD to have the mind set that it's not their fault, and that it's the illness. Thats fine (and straight out of a text book) but even when you know all this, it makes you feel about 2" tall. You bust your gut trying to help, and make things as easy as you can, and they shout at you for no reason. I will probably say this a lot over my posts, but I really do get it, I understand that it IS the illness and NOT the mild mannered, easy going man that I am used to, but that doesn't make it any easier. It doesn't make everything ok. It just means that all my frustrations are kept locked away, slowly eating away at me, until they find their own way out.
I undertsand that he has just gone through a HUGE transition in his life, not just the stroke itself, but the after effects as well. He had gone from the bread winner, the Man of the house, the protector, the lover, to being dependant, told he may never work again, or drive again. To not being able to open a packet of aspirin. One day I was sitting in the kitchen and I reminded him to take his medication, because his short term memory isn't so good. So he went and got the boxes out and started taking the cocktail of pills he had been given. Until he got the the aspirin. He was fiddling and messing and eventually I asked him if he wanted me to help. My response was the pouch being thrown at me in frustration. I get it, I really do. But sometimes it's hard to just carry on as normal.
I am the kind of woman who doesn't take crap from anyone, and here I was being shouted at and trying so damned hard to walk away and not retalliate. I don't care what anyone says, it's HARD to have the mind set that it's not their fault, and that it's the illness. Thats fine (and straight out of a text book) but even when you know all this, it makes you feel about 2" tall. You bust your gut trying to help, and make things as easy as you can, and they shout at you for no reason. I will probably say this a lot over my posts, but I really do get it, I understand that it IS the illness and NOT the mild mannered, easy going man that I am used to, but that doesn't make it any easier. It doesn't make everything ok. It just means that all my frustrations are kept locked away, slowly eating away at me, until they find their own way out.
Sunday, 14 June 2009
Tuesday 12th May 2009
Today he came home. Not before sending me home after visiting hours, and then calling me back JUST after I got the kids out of the car to say "you can come and get me if you like". UGH! But of course, I was happy, and bundled the kids right back into the car and made the half hour journey. Again, to go get him. I think I had gotten complacent, because I foolishly thought if he was home he'd be just fine. And maybe the first couple of days this was true. But it turned out it was just a false sense of security. I wouldn't let him do anything that first night, he could go on the computer, or sit and watch tv. That was his lot.
I had been waiting for this day for what seemed like an eternity, when in reality it had only been 5 days. And yet it felt strange. Every move he made had me breaking out in a sweat, I found myself constantly saying "I'll do that" or "what are you doing?". I was constantly on edge, and not at all comfortable. He was/is the same person he was before, but I am much more aware of what can go wrong now, and every muscle twitch, or itch or headache has me in a tailspin. Half of me was glad he was home, and half of me wished he was still in the hospital. It wasn't that I didn't want him home, I did, and was so grateful that he made it home again, but I was scared. Scared of my own failure. What if I couldn't look after him properly? How do you treat someone who's had a stroke? What do you let them do and what do you 'ban' them from doing? Nobody had given me any tips or advice about how to look after him, no do's and don'ts and here I was drowning in a sea of uncertainty and fear.
I had been waiting for this day for what seemed like an eternity, when in reality it had only been 5 days. And yet it felt strange. Every move he made had me breaking out in a sweat, I found myself constantly saying "I'll do that" or "what are you doing?". I was constantly on edge, and not at all comfortable. He was/is the same person he was before, but I am much more aware of what can go wrong now, and every muscle twitch, or itch or headache has me in a tailspin. Half of me was glad he was home, and half of me wished he was still in the hospital. It wasn't that I didn't want him home, I did, and was so grateful that he made it home again, but I was scared. Scared of my own failure. What if I couldn't look after him properly? How do you treat someone who's had a stroke? What do you let them do and what do you 'ban' them from doing? Nobody had given me any tips or advice about how to look after him, no do's and don'ts and here I was drowning in a sea of uncertainty and fear.
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