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.

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.

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.

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.

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.

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.

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.

The day I became a carer

May 8th 2009

It had been a fairly typical day, Walter had gone to work, while I stayed at home watching the kids. It was also our anniversary, we'd been together for 5 years, though in all honesty, I didn't expect him to remember it. Little did I know, that we would never forget our anniversary again. He arrived home from work around tea time, and surprised me with a bunch of pink roses, and a big bottle of wine. We got the kids to bed, then ordered a Chinese. While we waited for the food to arrive, we each went to our computers and went onto facebook, him in the kitchen on the desktop, and me in the living room with my laptop. We'd both got addicted to a game on facebook called Farm town, and so we were taking turns to harvest each others crops when the food finally arrived. We sat down together to eat, although Walt said that he wasn't over keen on his and left half of it and went back to his computer, while I finished eating mine.

A few minutes later I heard him mumbling from the kitchen, which wasn't out of the ordinary, he has a tendency to talk into the computer screen or whisper when he's standing next to the washing machine, or kettle or any other noisy utility, or he'll talk as he's walking away and I only catch the odd word. And so I asked him what he was saying (to get an idea, the kitchen door is in the living room and I could see the computer desk from the sofa), and he mumbled again. Of course, not having any idea what was going on I shouted at him. I can't understand you when you mumble, if you want to talk to me you'll have to come in here! Followed by more incoherent mumbling. I slammed my laptop down on the sofa and stormed into the kitchen and shouted "WHAT??!!" And that's when I saw it. He wasn't mumbling. He COULDN'T talk. His hands were tingling, and he couldn't use the left side of his face. I immediately ran back to the living room for the phone and called an ambulance. Of course, being a man who won't go to the Dr unless he's already dead, he didn't want me going to the trouble. I'll be OK, it's getting better already. Yeah really.

It's funny, in a strange way, because while I was on the phone to the ambulance service, they were asking me to ask him questions, and he couldn't speak, it seemed like forever that I was trying to explain to them that it would have to be yes or no answers because he can't talk. The paramedics arrived and asked all the standard questions, and took his blood pressure which was slightly high, but not through the roof. They eventually decided that it was a severe food allergy. To clarify, we HAD used this Chinese before, but he hadn't had that meal before, so it made sense that it could have been an allergy. The paramedics advised him to get checked over, but he said that he felt a bit better, and would take some antihistamines and see what happens. So he signed the PRF (patient refusal form) and on the way out they told me that if he got any worse to call them straight back and they'd come out again.

They hadn't even been gone for 10 minutes when I saw him rubbing his arm again, but he was careful not to talk to me, because then his game would be up. Not that he could anyway. I went into the kitchen to talk to him and noticed that his speech was starting to slur again and told him I was going to call them back, he said not to because it was only the ripples of the allergy, not as bad as before etc.... I wasn't convinced and told him he was on his last warning, one more episode and they were getting called back. within a few minutes he was off again, so I called them back.

The same two paramedics came back and told him he needed to go in (which he already knew because I had TOLD him he was going in whether he liked it or not). I had to help him get dressed because he couldn't use his arm. I think in my heart of hearts I KNEW it wasn't an allergy right from the beginning, but an allergy seems much nicer than what the alternatives are. The paramedics took him away, while I sat and stewed. Of course I'd have liked to go with him, but we have three young kids, it was 1am and we have no family near us. And as he said "they'll give me a shot, keep me in over night, then you can get me in the morning. Yeah.

So after he went I sat back down and logged into facebook and messenger to keep my mind busy while I waited for a call from the hospital or a text from him, just anything really. At 3am the text finally came. It simply said "not food allergy. TIA - Mini stroke". To be honest I didn't have a clue what to say or reply back, and eventually I just sent one back saying "bugger". After a few more texts I didn't hear anything else, all I knew was that he needed to have a CT scan the next morning and an ultrasound. Of course I couldn't sleep after that, and ended up talking to some wonderful friends online, who I met through a forum for a pregnancy related illness I had, and they kept me busy. I also spoke to a very dear friend of mine in Canada on the phone, the one time I was glad of the time difference. I had decided not to call anyone until daylight, since there really wasn't much to tell until we knew anything definite from the tests.