Carers of people with dementia

They wanted her out quickly, and what they would have done, had there be… had I not been there, they would have just dumped her in one of the local care homes near the hospital, all of which had the low satisfactory CQC ratings, so they would have just decanted her into the first bed that was available, and I wanted to get her decanted into a home that… where I live, which is a different county, which meant that they had to do the social services assessments and processes to allow her to be moved to this particular home, so that took… that took longer. And then they had to arrange… because she was in hospital, they had to arrange ambulance transport from Greater London to where I live in [place], and again, that took time. So it… I mean it was only… it was only over the course of a week, but it was… I did feel that she was… she was deemed medically fit to leave, but she couldn’t come home: she was only deemed medically fit to come into a care facility and I did not want her to go into the first available bed locally.

We struggled because she was so young compared to everyone else in the care home she was, you know, 20, 20 years younger. I think obviously now, there’s more and more younger people getting diagnosed with dementia. But she, at the point when we were searching for care homes for her, we used to go and visit and everyone would be so much older and we used to think, this just isn’t the place, do you know what I mean for her. But we managed to find a place that we felt comfortable with ‘cos, at that point, we didn’t really have much other option. And, yeah, she, she was just so much younger than everyone, so, obviously physically she was still quite fit but mentally she wasn’t which, which was the opposite of you know, some elderly, frail people  that have dementia that aren’t, so physically she was able to go round pushing everyone and kicking everyone and that like to the point where like, you know, from an 80 year old with dementia wouldn’t be able to do.

But coming back to the problems, I think it was the fact that I did not want to face and found difficulty in facing the form filling for the various grants that are possible. Perhaps it was part my problem because finance wasn't a key issue to me. I could look after myself and my wife financially while she was at home and indeed if I had to pay the full amount when she went into the care home I could cope with that OK.  

So it wasn't a problem but I found that the lack of information relative to the grants that were available which would be very, very important to some carers, especially if they had to give up generating an income. And the lack of information, the lack of guidance in what grants are for, what grants the carer is able to claim for and indeed some of the complexity of, of completing those forms. I'm relatively average intelligence I suppose but I could understand that if a carer was a lot older than I am, that could cause far more problems for them than, than it did for me. So I think they were the difficult things as a carer that I had to face.

I suppose one of the things that's least helpful and irritating is the fact that I have to pay some of the costs for my wife in the residential home. I have to pay this to the County Council and I have, I had initially to fill forms in about income and capital which is fair enough. The County Council forms were quite good and reasonably straightforward but then they assessed her as receiving income support, which she didn't receive. So I questioned this and they said 'Ah but she's entitled to income support if she's in this home. So we're assessing you as if she's receiving it so it's up to you to claim it.'

And this is the least helpful thing, is claiming the income support, the rigmarole that went with it. The size of the forms, I managed to get through them but I'm sure some people would be very confused because some pages were for her income and her capital and some pages included mine and others didn't and the whole thing I found a very confusing form.

And then they assessed it wrongly and by reading carefully all the information that came with it I found that she was entitled to more, which was the amount the County Council were assessing her as receiving, than they'd given me because they had, they'd got the wrong capital figures. It's a different capital figure apparently if you're in a residential home owned by a Local Authority. I can't remember the details but I stressed this point, pointed out the paragraph in the booklet and they said 'Oh yes, yes, we'll send you another assessment.' Three times the same assessment came back. This is the least helpful business.

So eventually I got on to someone, I forget what their title was but a real complaints person, told them the whole story, they agreed with me and said 'Leave it to me, I'll sort it out for you,' and about an hour later she rang back and said 'It will be sorted this time and you'll get the proper,' and I did. But again it's push and question, push, don't accept anybody as, as being God, push and question. And that's been very unhelpful, claiming this. And of course the silly thing about it is it's all coming out of the public purse anyway. So why bother to have to go through the rigmarole of claiming it, that huge form or booklet of forms when it's being paid to a Local Authority anyway who already get grants from the State.

So it's, it's a load of unnecessary bureaucracy which I find least helpful. Bureaucracy we've got to have but unnecessary bureaucracy we don't have to have. And I feel sure that could all have been worked out by, between the County Council's assessment people and the, getting more money from the State, either via income support or whatever, however they want to get it in grants, or whatever they get it in. Rather than give everybody all this hassle, getting wrong assessments back and all the bureaucrats who are dealing with it must cost more money than the amount of money they give out! In some cases I'm sure. So that I did find very unhelpful.

The hardest one was, was with mother, the conflict is, is always that, the conflict is always between what you should do and what it's going to cost and what you can afford and what the, what the effect of it is on you and on your life. And I haven't, I haven't been forced into that corner. Yeah there are a lot of things we might have done if we hadn't spent money on my parents and mother's been in, in care three years, it's cost £90,000. I guess I've had to find about half of that out of, out of income which is not a small amount.

I, they're, they're both 95 now and I mean I don't see this as, I don't see this as an unending commitment but sometimes you, you find yourself with the, sitting thinking that you know there are things I want to do and this is stopping me. And at the moment you make the commitment that's the most difficult time because that is a time when you're making a, a decision which you may come to regard as, a test if you like of your own morality' which is more important, me or somebody else. Or how important are they to me? How much does it matter, how much do I care if? And you, as you go through that process you can sit in judgement on yourself a bit and it's not always very comfortable.

So that's difficult. Am I going to spend £800 a month or £1,000 a month on my mother's care or shall I find somewhere cheap you know, cheaper and I don't have to spend as much and she won't like it as much but what the hell she's had most of her life. You're asking 'am I doing that, am I doing that?' is the sort of question that you ask yourself. Well I didn't have to do that very much. And I had some fortunate breaks in that and I was also fortunate in having the ability to make that funding choice.

You know I mean if it had absolutely crippled us would I have made it? I don't want to go there and ask the question. I mean if it's, you know it's been difficult but not unduly difficult. If it had been screamingly painful in terms of our life style, would I have done it?  I don't even want to ask myself the question. So that's one thing.

Separating them very difficult but it wasn't really a, you know what's the alternative, and when you look at something and say 'What's the alternative?' and there isn't one, that's easy isn't it, that's not a difficult, that's not a difficult decision. You've made you know, you've recognised the reality of the situation is there isn't another choice. Your heart may bleed a bit for one or the other of them, but that's just practicality.