Caring for someone with a terminal illness

Did you find that caring for Sarah had an impact on your, you financially?

Yes, it did.

In many ways actually, because I think, you know, when you’ve got somebody unwell at home you’re spending all your time in the house. You’ve got the heating on. You’re running out buying x, y, z that they fancy for tea or x, y and z that they need for, you know, for personal care or, so yeah, it was a very expensive time actually.

And yeah, I mean I dread to think how that how that impacts on, luckily, we’re, you know, my, my husband was happy to go out and just keep earning the money and, and for us to all sit here and spend it. But for some people they don’t, obviously, you know, if you’re, if you’re caring for your partner and you can’t work, that must, must be really difficult. Because yeah, it definitely, we really noticed the, the kind of drain on our on our finances but the, you know, you try not to, you try not to kind of think about that too much because it feels like it’s not the right focus, if you know what I mean. But yeah, Sarah, Sarah was unable to work for the last few years of her life really.
 

But, but the fact that I finished work was great. We were really, we were in a very privileged position. We had, we’d had insurance. We’d had critical illness cover, thank goodness insurance, so, so our mortgage was paid off. George didn’t retire from the police. He, he stayed, they insisted that he stayed employed and so he was on full pay and they managed to extend his full pay, and they did extend his full pay until he died. Not that we’d anticipated that he would die as quickly as he did, but he was on full pay when he died and was just off sick. So I was very conscious that we were in an incredibly privileged position and, actually, if that hadn’t have been the case I wouldn’t have been able to stop work.

As it was, we got our disability living allowance. We got the, it came back, initially, as the lowest rate, which I knew it shouldn’t have been, so we had to appeal and then by the time we appealed and we got the middle rate back and the reason we needed the middle rate was to have the, the mobility component in order to be able to get a car that George could access in a wheelchair.

We it came back as the middle rate, and I knew at the point at which it came back at the middle rate, that actually, he was no longer, his circumstances had changed and, actually, he was eligible for higher rate. So I then had to, not appeal, but I then had to do a change of circumstance form and, and get the high rate and we got the decision about the high rate DLA on the Saturday and he died on the Monday. Also, no, no, the Friday and he died on the Sunday.

So you know, so that actually wouldn’t have been very much help to me in the, had I been dependent on his benefits. You know, it was very interesting and having and having helped people to fill in forms for quite a long time because I was a health visitor and then lead nurse for respite care for children with complex health needs, it was, you know, I was used to filling in DLA forms. I knew how to fill in a DLA form. I knew I knew the type of terminology you needed to use. I knew, you know, how to describe circumstances and unpredictability and that kind of thing.

But it was very interesting having the boot on the other foot and the blue badge as well. We didn’t, we were turned down for a blue badge because I was I had a letter telling me that that it had to be a significant and permanent disability. And I did write back to the council and say, “I would like very much for this not to be a significant or a permanent disability and if you can tell me that motor neurone disease isn’t a significant or a permanent disability, then I’d be really glad to hear it but we’re not trying to con the system.” And I did get slightly obsessive about people parking in parking in disabled spaces, who didn’t have a disability, and kind of wanting to take a lump hammer to their to their windscreens really in a very kind of rational way.
 

I’m quite good at getting help when I need it and I got everybody I could think of involved, even before, and they were good locally, even before Mum and Dad came here, got help through the local agencies with a care manager setting up what they call a care package, although I don’t think there’s a lot of care or a lot of package in the care package, [laughs] but through the best will in the world, I mean it’s just how it is.

You know, if you’ve got a different carer coming in for forty five minutes, although we’re lucky locally because a lot of, it was often very consistent staffing so we got to know the carers well and they sort of, that that was a nice sort of added thing. And we got, amazing, we got good equipment through the occupational department even, we got hospital bed for them each before they even came here. So people took us at our word of how, what their condition was and everything and we were well set up to start with and that was very supportive.

But over time that went because the carer didn’t go but the problem I came across after six or seven months, I sat down and did some sums because I was managing all the money, and because Mum and Dad had money in the bank they weren’t eligible for much care. Although because I’d gone to the agency we did have some through the, I forget the authority now, but the through the local, what would have been social work department because it was set up through them. But after seven months I did some sums and it was costing far more to go through what you’d assume would be a subsidised local authority system than it was to go private.

So that was an issue which I raised and didn’t have the energy to follow up very much but the sort of, yes, as a family we paid... more for the same carers coming to the same couple at the same address for the same needs and tasks and the same time of day and, because of their system, because there were two of Mum and Dad and not one and because of how the system had been changed and they assessed separately, even so it was the same agency and the same carers it was more expensive going through them. So I stopped it because who wouldn’t because we were paying more, which was a crazy, crazy situation to have been in and, but as I say, it took me seven months to have the energy to sit down and look at it really.

We had rather assumed that going through the, the state, the welfare system, that would have been subsidised but it turned out not because the agency charged a higher rate to the local authority than they did to private customers, as it were. And then somehow because there was this quirk of it being two people, but we can’t be the only family that had two people in the same household having care coming in.
 

So you talked about having to get private care in. Was that expensive? How did you organise that?

It’s enormously, it’s enormously expensive. You can’t believe the price of it and also, it things like they come and do an assessment and you’re, they come and sit in the, in the living room. They don’t know Mum and, of course, there’s this thing about believing everything Mum says because they’d say, “And do you cook, do you get a meal for yourself during the day?” Of course, Mum would say, “Yes.” And she, she’d, so you’d then have to tell her afterwards exactly, “Well, actually, she can’t do this and she can’t do that and she had a fire in the kitchen.” And this sort of thing. So then do a care plan to suit reality really.

So she used to come for, you know, an hour is, is very expensive and there’s things like they even break it down to sort of half an hour, but to us whatever it cost it was going to be worth it because we didn’t want her to have to go into a care home. We wanted to keep her in her own home as long as we could so to us it was worth it.

So the care she needed you didn’t feel was available through your GP.

There’s nothing available.

And the NHS?

No. There’s nothing, there was nothing available. The only thing available through the, well, sort of, because the only thing, through social services was the day centre.

Right.

Which I think is superb for them, but no, the district nurses don’t even come round and help, give somebody a bath anymore, no. It would only be if she, you know, if somebody’s actually physically unwell in bed, they would sort of get involved, no, it’s all private. It’s all private. God knows what happens when people haven’t got the money to pay for it.

But we’d, I mean we didn’t pay for it. Luckily, my mother had money in the bank and everything, so my brother arranged for her, for the care that came through the agency to be paid out of my mother’s bank account.

So we got into this situation where the hospital were saying she was well enough to go home but I didn’t think she was and the care agency didn’t think she was. So the thing was I had to find a care home, place in a care home for her quickly because the hospital were saying, “We need this bed.” So I had to go out and look for a care, look for somewhere. So I had to, they gave me a book of all the different nursing homes so I had to look through the try and find one and I went to visit some. They were awful, awful places that smelt of urine and oh, it was just awful, sat around, the bedrooms were horrible, the linen was awful, I felt physically sick. I thought, “I can’t send my mother here.”

I found a really nice one locally and they had they had to go and do an assessment and they took her and I looked into having care at home for my mother and to have someone stay all night, it would cost some something like a hundred pound a night and that person would just be paid for sitting in a chair. They wouldn’t, they weren’t allowed to do any care for my mother. They couldn’t, you know, if she was incontinent, they wouldn’t be able to deal with it. They were just a sitter. So that alone and the day care would have been seven hundred pounds a week and then I’d obviously, I mean the night care so the day care would be more. So after a lot of heart searching I felt the care home was the best place for her.

And is that a private care home?

Yes. So we had to make the decision to sell up, she wasn’t well enough to go back home. Her mental state

Did you find that Fred being unwell put a financial strain on you?

Huge financial strain. Yes, it did and it’s left me in a huge ball of, I don’t know what to say, but it is now because I lost Fred’s money when he died and there is quite a good chance now that I will become bankrupt. Yes, it was awful, really, I couldn’t get any help because I still worked. I couldn’t get any benefits. Fred had attendance allowance but it cost me forty pound a month for his hospital car and then you’ve got to think about all the other things. I mean, how many times I’ve been sent for to go to the hospital. There’s no bus service from [Town] or very little, every hour or every two hours, whatever it is, but at the moment there isn’t a bus to [Hospital Name] and so it was taxis. Well, that’s ten pound each way and I’ve done that so often but I’m not putting all the blame on Fred for the situation I’m in but most of it is. The extra food I had to buy. The clothes, he went down to about six stone from about a twelve stone man. Clothes just wouldn’t go near him. He ended up just living in training bottoms and things because he you couldn’t buy him decent clothes because the weight was just falling off him.

Heating in the house, that I had to have the heating going, you know. We only got them one night storage heater but I had to have extra heating for him because he was so cold. Oh, yes. It was awful. Great and again, it was silly little things like Fred would have a shave and he would say, “Val, this razor is not working. Have to buy another one.” Okay but then he’d find another electric razor. He ended up with about five electric razors. I did it to help him to keep the peace but really I don’t think there was anything wrong with these razors but I couldn’t argue with him. I just did it, you know. So yes, maybe it was all my own fault, maybe it was, I don’t know, but I just wanted to give Fred everything that he needed be it the cost to go and visit our daughter in Wales was a, you know, she’d got a young family.

There was no room as such. There were stairs. I couldn’t trust Fred on stairs, you know, on his own. Here we got the lift. So we stayed in little hotels or Travelodges but, you know, it would cost me a fortune just to go away for a weekend to give him a break, as well as to see the family. Yeah, it’s great and I don’t know how I’m going to get out of this one yet still. I think I could cope better with Fred dying if I didn’t have this worry behind me.

So that’s still with you, the financial worry.

Oh, yeah.
 

So were there any financial implications from all this? Because presumably, all that care, you didn’t have to pay for. That came from the state.

No, I mean luckily, Terry got disability living allowance. He was a pensioner so pension, pension credit. I got carer’s allowance. It was fifty something pound at that time. So and yeah, we was managing quite well, yeah.

Good.

Yeah.

Did you have carer’s allowance before when you were looking after your parents?

Yes, you can’t claim it for [laughs] with Mum I didn’t claim it. With Dad, I claimed it, but when I was looking after Dad, Terry was still working so it didn’t affect us because like I was looking Mum and Dad full time. Terry was still working. Thing was, once Terry stopped working, he couldn’t work no longer, we had to claim benefits. So I had to stop claiming carer’s for my dad and start claiming carer’s for Terry. So I wrote a letter and they, they sort of, it was a book, at that time, and they just sort of just changed the book from my dad to Terry, although, I was still looking after both, you, you can’t claim for both. So yeah.

So I got carer’s allowance for all that time and the biggest shock was when Terry had passed away I must say and it’s still going on now, a year after, is that obviously, I notified everybody and all the benefits stopped. Well, what savings we did have we spent like because I didn’t work no more and things like that and they gave me fifty pound a week and if it wasn’t had been for my children, I don’t know what I’d have done to be honest. So I think that’s a big, like no one prepares you for after like and you, you don’t even consider about after because you’re too busy worrying about the day but, yeah so a year down the line I’m still cold sores because I’m stressed out because of like the benefits system now, you know, but.

So you’re struggling financially now?

Oh, yeah. Yeah, because the bereavement benefit finished. You get that for a year, which is fifty pound a week. They paid the rent and council tax but I didn’t have no central heating in here so through the winter I was spending the fifty pound a week on the heating.

Yeah.

And still being cold and so, luckily enough, I’ve got good children and they all, all helped me. I wonder if what would happen with people that are on their own and older than me that, you know, didn’t have somebody to help them because it’s a struggle.