Tuesday, 16 June 2009
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.
Monday 11th May 2009
And so. The day of the results finally arrived. It wasn't a TIA. It was a stroke. And when we went to visit, he had been moved to the stroke ward. It sounds strange, but having a definite answer brings relief. Beforehand I wanted them to say anything BUT a stroke, but knowing what it is means they can start treating him. His arm was starting to get more and more use back, and I started to think that maybe, just maybe, he would fully recover. It was the first day I felt really positive. Of course he had a nurses station right next to his bed, as all the wards on the stroke ward have their own nurses station. Can we say a happy man? He always has been a flirt, and it's never bothered me, we are secure enough that we can both have 'eye candy' without needing to worry, albeit, ours are both famous people, so not exactly a threat, but I digress. He is a flirt, and I think having a laugh with the nurses helped him some. Being on that ward opened my eyes, some of the people were in a vegetative state, and while not really a place to take the kids ( the people in this ward were much worse than the previous ward he had been in) I had no choice. It wasn't for the kids benefit, or mine really, although of course the kids missed him, and I wanted to see him, but I thought it was important that he see the kids, give him something to get strong for.
Sunday 10th may 2009
Maybe today we'll get some answers. That was my first thought when I woke up. I was slightly more upbeat about things, and was ready to go after finally getting some much needed sleep. This time I had to take all 3 kids with me as I couldn't find anyone to watch them. So I chucked them all into the car and headed to the hospital. He had been sent from his single room on the high dependancy ward to an assessment ward in the same unit. He shared this room with 5 others. He was starting to get the use back in his arm, and although he couldn't really use it, it was much better than it was the previous day. He could pick light things up, but it was still hit and miss as to whether it wanted to work for him. But to me, it was still good news. We still hadn't had the results back of the tests but I figured it couldn't have been too bad if he was starting to get movement back already, in only 48 hrs. I even took my laptop in for him to use, even though I hate his dinosaur of a desk top, but if it meant I could talk to him in the evenings, then it would be worth it.
I started to realise how lucky he had been, when the stories about less fortunate people started flooding in. A 24 year old man who had had 4 strokes and was paralysed all down one side. Another man couldn't do anything for himself. And there was my man getting better. Yeah.
We talked, and he avoided any questions about how he was feeling, and I never talked about how I was feeling. I mean, what's my thoughts compared to what he's going through right? And so we made general chit chat, and he played with the kids, and then it was time to leave again.
When I got home I made the kids their tea, then got them changed and ready for bed, and at 7pm I put them to bed as normal, quite ready to just flake with a HUGE glass of wine. Only they didn't want to sleep. Again. They were messing me about left, right and center. Jumping up and down on their beds, turning the lights on and off, getting out of bed, I spent the next two hours stomping up and down the hallway until I eventually snapped. I screamed at the kids to get to sleep, a few choice words may have slipped out unintentionally. I was done. I'd never been that angry with my kids, I've been mad, but this was different. A different kind of angry, angry that they wouldn't go to sleep, angry that we still didn't have any answers, angry that I couldn't make it all better, angry at myself for not being able to hold it all together. I was all kinds of angry. Angry that I was doing it all on my own with no help.
To clarify, all of my family live 400 miles away, and work full time, his family are a lot older than I am, since Walt is 22 years older than me, and his other sister lives too far away and doesn't drive. So I wasn't blaming anyone, but I was still angry that I needed a break, and there was no-one to give it to me. And yes, I took it out on my kids, who, yes, were pushing the buttons becasue they knew something was wrong, but I had been delaying telling them anything until I knew what I was telling them. The eldest was just about to turn 4 and the youngest 18 months old then, with a 2½ yr old in the middle, it's not like I could go into detail with them, even if I did know what was wrong. And just what the hell do you say to a toddler anyway?
The kids eventually fell asleep about 10pm, and then just as I was about to start the housework, the phone calls started. what's the latest, how is he? etc... Which is fine, I understand, but only 2 out of the gazillion people asked ME how I was doing. It shouldn't have bothered me, because I know it's HIM that is sick, and him that has to live with what's happened, but I WAS mad. I am the one who wakes with the kids at 6am after 4 hrs sleep, I am the one who makes their breakfast, and dresses them then starts cleaning again, and getting stuff ready to take to the hospital, that has to see the man she loves frustrated and not be able to fix it, that has to run around to hospitals and back, then feed the kids, bath them and put them to bed, and have the next hour chasing them back into bed and winding me up, and when they finally go to sleep, I have to do the washing, drying, washing up, hoovering, phoning the million relatives to give updates, before falling into bed exhausted at about 2am. So am I pissed? Yes. Do I have a right to be? Who knows.
I started to realise how lucky he had been, when the stories about less fortunate people started flooding in. A 24 year old man who had had 4 strokes and was paralysed all down one side. Another man couldn't do anything for himself. And there was my man getting better. Yeah.
We talked, and he avoided any questions about how he was feeling, and I never talked about how I was feeling. I mean, what's my thoughts compared to what he's going through right? And so we made general chit chat, and he played with the kids, and then it was time to leave again.
When I got home I made the kids their tea, then got them changed and ready for bed, and at 7pm I put them to bed as normal, quite ready to just flake with a HUGE glass of wine. Only they didn't want to sleep. Again. They were messing me about left, right and center. Jumping up and down on their beds, turning the lights on and off, getting out of bed, I spent the next two hours stomping up and down the hallway until I eventually snapped. I screamed at the kids to get to sleep, a few choice words may have slipped out unintentionally. I was done. I'd never been that angry with my kids, I've been mad, but this was different. A different kind of angry, angry that they wouldn't go to sleep, angry that we still didn't have any answers, angry that I couldn't make it all better, angry at myself for not being able to hold it all together. I was all kinds of angry. Angry that I was doing it all on my own with no help.
To clarify, all of my family live 400 miles away, and work full time, his family are a lot older than I am, since Walt is 22 years older than me, and his other sister lives too far away and doesn't drive. So I wasn't blaming anyone, but I was still angry that I needed a break, and there was no-one to give it to me. And yes, I took it out on my kids, who, yes, were pushing the buttons becasue they knew something was wrong, but I had been delaying telling them anything until I knew what I was telling them. The eldest was just about to turn 4 and the youngest 18 months old then, with a 2½ yr old in the middle, it's not like I could go into detail with them, even if I did know what was wrong. And just what the hell do you say to a toddler anyway?
The kids eventually fell asleep about 10pm, and then just as I was about to start the housework, the phone calls started. what's the latest, how is he? etc... Which is fine, I understand, but only 2 out of the gazillion people asked ME how I was doing. It shouldn't have bothered me, because I know it's HIM that is sick, and him that has to live with what's happened, but I WAS mad. I am the one who wakes with the kids at 6am after 4 hrs sleep, I am the one who makes their breakfast, and dresses them then starts cleaning again, and getting stuff ready to take to the hospital, that has to see the man she loves frustrated and not be able to fix it, that has to run around to hospitals and back, then feed the kids, bath them and put them to bed, and have the next hour chasing them back into bed and winding me up, and when they finally go to sleep, I have to do the washing, drying, washing up, hoovering, phoning the million relatives to give updates, before falling into bed exhausted at about 2am. So am I pissed? Yes. Do I have a right to be? Who knows.
9th may 2009
At 6.30am I got a call from my brother who had seen my status on facebook and wanted to know what was going on, So after filling him in, I started the tedious task of informing all the relatives, both his and mine. His sister offered to have the girls for the day, so I would only have James, which took a lot of the pressure off. And so me and my boy headed off to the high dependency ward at Queen Margaret hospital.
I wasn't prepared for what I saw when I got there. I'm not even sure what I expected, but whatever it was, THAT wasn't it. From the texts he'd been sending, he seemed chirpy, and joking around about getting breakfast in bed. But the man in that bed wasn't my fiance. Of course it was, but only a shadow of the man that normally drives me to distraction. His arm sat limply on his lap, much worse than it had been when he had left me just a few hours before, his face was droopy on one side, and he was still having trouble getting the words out. The tests had been done, but we were still waiting for the results. I could see that it was frustrating him, and it frustrated me that I couldn't do anything about it. But I did what I always do when things land on top of me, and I went into auto pilot. We stayed a while, then I had to get James back so that his niece could bring the girls back. We still knew nothing, and Now I was even more frustrated, because I thought we might have gotten some answers. And of course, the children didn't want to go to bed, and were pushing every button I have, I eventually got them to bed by 9.30pm, and then I had to start the housework.
I wasn't prepared for what I saw when I got there. I'm not even sure what I expected, but whatever it was, THAT wasn't it. From the texts he'd been sending, he seemed chirpy, and joking around about getting breakfast in bed. But the man in that bed wasn't my fiance. Of course it was, but only a shadow of the man that normally drives me to distraction. His arm sat limply on his lap, much worse than it had been when he had left me just a few hours before, his face was droopy on one side, and he was still having trouble getting the words out. The tests had been done, but we were still waiting for the results. I could see that it was frustrating him, and it frustrated me that I couldn't do anything about it. But I did what I always do when things land on top of me, and I went into auto pilot. We stayed a while, then I had to get James back so that his niece could bring the girls back. We still knew nothing, and Now I was even more frustrated, because I thought we might have gotten some answers. And of course, the children didn't want to go to bed, and were pushing every button I have, I eventually got them to bed by 9.30pm, and then I had to start the housework.
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