My family.

by iancastlesblog

Hi. My name is Ian Castle. I am new to blogging and never thought I could or would write something like this and put in on the internet. But a few things have happened this year that made me, though I am not finding this easy to say the least.

I am 47 years old, married to my wife Helen and we have 7 children, including triplets. My wife is severely disabled and I am her full-time carer. She has charcot-marie-tooth, myositis, rheumatoid arthritis, severe muscle weakness and now suspected MS. She also suffers with a foot deformity, oedemas, depression and very severe anxiety and panic attacks. She is in a lot of pain a lot of the time. She takes a ridiculous amount of pills every day, some of which have various side-effects, some of which are very unpleasant. Two of our children are also disabled and suffer from multiple conditions.

Up until 2004, we were almost what you might call a normal family.  We both worked, went on holidays and did the things families do. But then things changed. My wife’s disability got gradually worse. Eventually, she had to give up work altogether.

I was able to continue working for a while, as Helen could manage at home. After about a year or so, though, my wife got worse and more dependent. I managed to cut down my hours but this did not last long because the situation was just so unmanageable. Eventually, I had to give up my job, which was not easy because I’d always worked and absolutely loved my career. I didn’t have any choice, though. It was impossible to get or pay for a carer and it just wasn’t right. I wanted to look after Helen – she’s my wife, in sickness and in health, so why wouldn’t I?

At that time, we still had our own house and we’d saved a good pot of money. Neither of us wanted to claim any benefits at that time. We’d never had experience of the benefits system or claiming benefits and we felt it somehow wasn’t right to claim any type of benefits when we had savings. That struck us as being wrong and greedy and we would have felt guilty that we were somehow taking the money from someone else who really needed it. We didn’t even know at that time what we were entitled to or that you could claim benefits with some savings.

We’d both always worked hard and believed in being self-sufficient and doing things off our own backs. We’d never have dreamt of just doing nothing and we were both active then and had both had jobs early in our careers that we didn’t enjoy or want to do. We believed it better to be working and earning, though, than the alternatives.

When Helen was in her job at that time, she really hated it. In fact, thinking back now she was really unhappy and would always come home fed up. We both had the benefit of a fairly good education but we both discovered that’s not always enough or sometime not even relevant – depends what field you want to work in and what you want to do.

To try to get out of that rut, Helen started doing some night class courses. Helen already had a good degree, 4 A Levels and some other qualifications I can’t remember the names of but she needed something more. It was really tiring for her but doing the course actually seemed to make her hate her job even more.

We reached a point where we couldn’t continue. Helen’s dislike of her job had got so bad that it was making her ill and home-life unbearable. We talked about it on and off for weeks. Helen was applying for jobs she really wanted all the time – and others she didn’t really want. She went to interview after interview. She got turned down for lots of jobs.

Helen had to call one of the companies because she had received a letter saying they would contact her in due course but she had heard nothing. When she spoke to the woman that interviewed her, she said that the company had to pick the right person for the job and that they had turned down lots of highly qualified people like Helen because, in the past, people who didn’t really want that job had left as soon as something they really wanted came up.

Helen also felt that she wasn’t at her best at that time, and that a lot of the negativity she felt daily was coming through in interviews.

Things continued to get worse. We finally decided, together, and for the sake of our family happiness and our marriage, that Helen would quit. Before she had even handed in her notice, the relief she felt was visible. She was Helen again, happy, and returning to her old self.

At that point, Helen got very lucky, as an old college friend had got back in touch and when they met up she mentioned some vacancies that a company had. Helen phoned the recruitment agency on the ad and applied.

Helen got an interview and thought she did well. But then she heard no more. Helen was getting very fed up with it all so she decided to apply for a job at one of the local supermarkets. Then, she got a phone call. It was the agency and a second interview and test. She went and did well but again, she didn’t hear anything for over 2 weeks. So my wife went back to some agencies again. Then, about a week or so after that, there was a third interview. I thought this was beginning to be a joke now but Helen was really keen for the job and it was a great opportunity and very well paid. So, she went and she thought it went great. But then she heard nothing and the agent would not return her calls. Helen was so fed up. Two weeks later, Helen gets a call out of the blue, offering her the job. Helen was delighted and accepted. But that entire recruitment process had taken about 3 months.

Years later, after I had to leave my job and Helen could no longer work, we lived off our savings for a while and I tried to find work that would better fit in with our situation. I got one job but it didn’t last long. Health problems Helen had meant I couldn’t go into work some days or had to leave abruptly. Despite trying hard for a couple of months, it was just impossible. The final straw was when Helen’s condition deteriorated further, and that’s when I became her 24-7 carer.

Eventually, as our savings got eaten up, we were forced to sell our home and get something cheaper. This did not work out well, though, as the health problems and disabilities cause major problems and complications at home.

Helen now has to sleep in a special electric bed and sometimes we have to use a hoist at home. This means that I can’t sleep in the same room – there’s just no room.

One of our children is disabled, has epilepsy and is also a Type 1 diabetic. She’s got problems with her sugar levels on a night and, to this day, this causes severe bedwetting almost every night. She also suffers from fits during the night, which sometimes can be violent. Our youngest is terrified of her and dare not go anywhere near her at night.

When she was sharing a bedroom, in the space of one week she injured her brother during a fit and some of his bedding and clothes got covered in urine that had leaked from her special mattress. This affected him badly and he cannot go near her on a night now without having a really bad panic attack.

One of our other children is also Type 1 diabetic (it seemed to skip a generation on my wife’s side). He’s in the same boat but a bit older but has other medical problems that I don’t really want to write about publicly.

The upshot is, we have 3 children who cannot share a bedroom because of their disabilities and health problems and I cannot share a bedroom with my wife anymore (unless I could find somewhere with a really big main bedroom).

As one of our children also sometimes has to use a wheelchair, we have two wheelchairs at home that we have to keep in the home. These take up lots of space but we need them in the home and we have to keep them safe from the youngest.

We also now have two commodes because, without going into unnecessary detail, Helen needs them. These also take up space. Then there’s the medical equipment and storage needed for other things we need for either Helen or our children because of their conditions.

So, when we sold and downsized, our children’s health suffered and we found out very quickly it just was not safe or practical. There were so many incidents that it’s scary just to think back. During a fit during the night, one of the children injured another badly. Then, as we had to use bunk beds, one child fell from the top and was injured. Bunks were not suitable but we had no other choice because of the size. Then there was another incident with bedwetting that caused problems for our other child sharing at the time.

We tried to make changes and use the space better but there was simply not enough. We considered an extension but then we had money concerns and the last thing we needed in our lives was building work. That can be a nightmare in itself.

I think it can be easily forgotten, too, that a 3 or 4 bedroom house often only has 2 or 3 reasonable size rooms and then a smaller or box room. There are ways to work around things but in exceptional circumstances like I believe our is, you just need a certain amount of space and a certain number of rooms.

Then we started thinking about our eldest and the need for teens to have their own space for themselves and privacy and when friends come over. Then there’s having somewhere quiet to do homework.

We started to realize then that we had to move and that because of our specific circumstances, we simply needed somewhere bigger. We also began to accept that, at some point, our savings would run out.

Our cost of living had gone up so much after leaving work. We had never paid out so much each month when working and I still can’t believe how much all the extra things add up to. Just on gas and electricity alone, our bill is higher than it ever was when we had a bigger house. We looked at switching supplier but found the one we were with was about the best. We had someone come down from our supplier and he did find a few ways we could make savings. But having done what they suggested, although the savings did make a difference they were nothing like what they claimed.

But since then, the gas and electric prices went up again, which has just eaten away at those savings.

We have a big problem now because the company accepts that our usage is the problem but that we’re using more because of disability and as we are at home a lot. Helen and I sat and worked out that we’re at home at least 40 hours a week more than when we were working. There are hospital appointments, clinics, seeing friends and visiting people but other than that, it’s not easy for us to get out or do much as a family anymore and we just don’t have the money to do nice things anymore. Some weeks, apart from kids, school and shopping, we are at home all day and all week.

Then there’s the extra things we have to use, like special equipment, a cooler in summer and heating in winter. Everyone uses heating but most people working aren’t at home during the day, seven days a week.

I can’t believe that we are the only ones like this. At the end of every month, I have nothing left after paying what I can of the bills. The gas and electric is the really hard one though. I can pay them about £70-80 per month but they want almost double that. We just don’t have it and I have to make part-payments on other bills just so I can pay the £70/80 quid. We’re on a fixed income, I can’t work because I’m a 24-7 carer and we have children. We’re getting all we’re entitled to but it is just not enough to pay for everything.

There have been times when I’ve had to cut down on shopping but that caused problems – like when one of our children got sick because there was no food left in. This is just wrong – how can I put my wife or children’s health or life at risk just to pay the big energy companies? I can’t put my own children or wife behind them. This can’t go on.

They talk about metres but it’s just not safe. We have medicines and insulin that has to be kept refrigerated. We have to wash bedding that’s covered in urine every day. I have to cook meals for our diabetic children. My wife and children have to have lights on during the night for if they wake up. The special bed and hoist need power. We have other equipment that we have to use too.  In our situation, there are many days where we don’t even have 10p. What would happen if the metre ran out and we had no money?

The risks are just too high and the worry too much. As it happens, the supplier agrees on this.

These energy companies need to realise that people on fixed incomes cannot just make extra money appear. And when you use a lot because you have to because of family disabilities, you can’t be expected to pay for that if you don’t get any special income for that. It makes no sense.

It’s not like anyone in my family chose to be disabled or wanted to be this way. We don’t choose to use more, we just have to.

It’s like the companies are burying their heads in the sand and just letting debts mount up against people who just don’t have the means to pay them. Something has to be done about this because people like my family don’t have enough to pay the bills now. What’s going to happen when the bills go up again?

Our biggest concern at the moment, though, is the changes the government are bringing in under the welfare reform bill. As far as I can tell, there are not many exemptions for disabled people and families like mine. That seems stupid to me. I really cannot understand this because isn’t that what a welfare system is for?

We’re really scared about what the changes will mean for us and it remains to be seen exactly what effect it will have on us. We’re stretched to the limit now, unable to pay all our bills. If we see cuts to our benefits, what is that going to do for us? I’m terrified what it might mean for my wife and children – and how it could affect their health.

My wife is very scared and the children pick up on this. The older ones know there are major problems, they just don’t know exactly what they are, what they mean or how it will affect them. If Disability Living Allowance (DLA) goes down when it turns into PIP, it will be nothing short of catastrophic for us. My wife and children should not have to be put through this.

We’ve hit a big snag already because of changes to local housing allowance and housing benefit. We’re having to move soon because our landlord is selling the house. We’re renting privately in a 5 bedroom house but the landlord was very compassionate and sympathetic and charged us a very reasonable rent – though we still already have to put some towards it on top of housing benefit.

But the problem we’re facing is when we move. Though we need a 5 bedroom house because of the family disabilities and the effects of those disabilities, housing benefit will only pay towards a 4 bedroom house. But with rent prices as they are, we cannot afford to make up the huge difference between what housing benefit pays and the rent.

I’ve been looking into this a lot recently. In my area, there isn’t much social housing or available council housing. We don’t have anything like housing association places and housing – although when I made enquiries to one such organisation I found on the internet, they told me they don’t build or have properties of that size.

I have seen on the TV all these things about people getting £2000 a month on housing benefit. Well, we don’t get anything like that. NOTHING LIKE THAT.

As far as I can see, these are in expensive areas, like Islington in London, where properties and rents are sky-high.

But I don’t understand the problem here or why people don’t get it. I’ve looked into this a lot of late. Housing benefit works on a percentile basis, meaning that if property prices and rents rise over time, so do housing benefit levels as a percentage to reflect that, which makes sense.

So, it’s property prices and excessive rent levels that have driven up housing benefit levels and the cost of the housing benefit bills.

From what I have read, the system was working on the 50% percentile. So if that was £2000 in housing benefit per month in Islington, it’s obvious that there are far more expensive properties and rents in that area.

And the reason it’s £2000 is because of the high levels of rent there.

The real problem here is high rents. That is what caused the benefit levels to rise. I feel I have to say too that in my own experience in life, there are many greedy landlords out there.

As is the problem for many people, the cost of living has risen far more than peoples’ pay or benefits. I don’t see how that can continue.

Now, though, they want to lower the housing benefit allowance level to the 30th percentile. We don’t live in or near London. In fact, we don’t live in an area that people would consider affluent. But I’ve been looking for months in our area and surrounding areas and I haven’t come across any houses we could move into that come close to that level. The typical rents would come in at around the 55th percentile or higher, meaning that we’d still have to put money towards rents with housing benefit at the 50th percentile. But we’ve no chance of affording it with the level set lower – especially at the 30th percentile.

When I discussed this with my landlord, he told me that landlords won’t risk rents not being paid – they will just chose to let to working people.

It makes no sense. Rents are high, energy bills high and rising, fuel high, and food costs enough too. Like me, people can’t pay all their bills and need help, yet the government is taking vital money away from people like my family, who need it the most.

I’ve seen those programmes recently on TV and we don’t have Bentleys or yachts. Why did we not see the flip side of that coin on that panorama programme? The side about genuine and severely disabled people and children, how it affects them, how it might limit them, the stigma, the pain they suffer, the side effects of medications, reduced life expectancy and the extra high costs they face?

Why are there no exemptions for severely disabled people and families in the welfare reform bill?

Surely, that’s who the bill should help and protect the most?

I don’t really want to go into more personal details about my childrens’ disabilities on the internet. It doesn’t seem right and I shouldn’t be in this position in the first place. But with my family, there is just not enough room in a 4 bedroom house and everyone sharing rooms is either not safe or not possible. It would be a struggle for many families with fit and healthy parents and children. But because of the disabilities in our family and the effects they have, it is just impossible. There is just not enough room and it would be unsafe. There are simply not enough bedrooms and not enough room for the equipment and people. I know because we tried it before, as I mentioned before, with horrifying consequences. I also had to put stuff in the shed, including a wheelchair, and it just rots or gets ruined, especially over winter.

We went to the council for help ages ago but they have told us repeatedly that they simply have no 4 bed council properties available and that they can’t house us in something smaller because it would be overcrowding and unsafe. They have medical reports too from consultants and our GP on our children and my wife. The council have said that they can’t potentially put children at risk or ignore medical advice or disabilities. I don’t disagree with them – it would be unsafe and impractical. I know that and they can see that too.

What do we do? We’re stuck in a no man’s land. We have to move but we have nowhere to go. There’s no social housing near here, no available council housing, and the cuts to housing benefit mean we cannot afford the difference to rent privately.

We need a 5 bedroom house not merely because of the size of our family but because of disability, safety and on medical grounds.

I worked hard all my damned life up until I had to stop to care for my wife and children. I had a good job with a great salary – as did Helen at one time. We both worked hard and paid a LOT of tax for years. When our lives changed for the worse, even in the face of adversity and hard times, we didn’t even claim benefits because we didn’t know we could with savings and we didn’t feel it was right to take from the state when we had savings.

But now that we have reached rock bottom and our lives have been shattered and changed forever, we now need help more than ever. We need that money now to live on. Why did we work so hard and pay taxes to help put money into the welfare system if now, when we really need it, we don’t even have enough to pay our bills or have a home?

Sadly, I have lost a lot of relatives. But what family I do have left have been disgusted by what is going on. I have to admit that most of my family have made no bones about being Conservative supporters and voters. But what they are seeing happen to us has made a big impact on them and even I was surprised by their change of heart.

In Helen’s family, her late grandfather and great-grandfather fought for this country in both world wars respectively. Helen’s family have been dumbstruck and really don’t know what to make of all this. They think it’s just obscene. But they’re sure of one thing in what they’ve said to me a few times – that both those soldiers did not fight and put their lives on the line to defend and protect a country that could do this to people.

I know the welfare system needs updating and changing because some do take advantage of it and rip it off. But not all disabled people are scroungers or fakers.

We know a lot of disabled people now and none of those are fakes, they are all real people, suffering from real disabilities and with genuine problems and pain. It’s surprised me how many families there are like us.

But the welfare system is supposed to be a safety net for people like my wife and children. There should be exemptions for severely disabled people and for those with exceptional circumstances. It’s very hard with one disability in a family, but I can’t begin to explain what it’s really like day in day out (or what it costs) when there’s more than one parent or child with multiple disabilities.

This welfare reform bill needs to have a safety net. It needs exceptions and exemptions putting in to protect people like my wife and children. They did not deserve or desire to be disabled and ill. They should not be punished for it. My wife and children – like all disabled people and children – are citizens too.