Look, if, if residential homes come into the picture, look at several and look at them unannounced. Dot make appointments, go and ring the bell, knock on the door or walk in and tell, ask for the manager and say that you are contemplating somewhere for your partner and can they please, first of all have they got any accommodation available that would be suitable to your partner, explain the situation, and then ask to see a room, or ask if you can just walk around and have a look around and open doors.

Walk around, if they want to come with you(r) great, open any door, and if they sayDot, you cat open that door someons in bed OK accept that, but other doors open them, have a look, have a look at the kitchen. Use your nose. Thas important in homes. A smell of urine here and there, well sometimes it cat be helped but you soon, you soon, you soon sense whether it’s a permanent smell or whether it’s something thas just happened. And all those kind of things but never make an appointment, always arrive unannounced and thas, thas the reception you get and the situation you find there, yoll get a better idea of whether it’s gonna suit your, your partner.

Thas as far as I can go on that I think really because every individual then has got to make their own decision and their own choice and before you make a decision find out exactly where yore gonna stand financially on this. Because, payment can be virtually free or partial or whole, depending on the, on your own circumstances, on the circumstances of your partner. So go into everything first and ask the questions and ask again until you get answers that you understand. I think thas as far as I can go.

It is a twenty-hour a day, three hundred and sixty-five day a year job. And not a job that you’d choose and I think you have got to do what the psychiatrist told me to do, you have got to feel that when the cut off point comes you have prepared yourself for it as much as you can. But while you’re still caring for your, whoever the person is you’re caring for at home, you’ve got an eye to the future, you are looking around at what there is available if and when they suddenly do a steep dive into deterioration, which can happen. Theres no guarantee that [name] will deteriorate on a slow basis, as he is at the moment, he might suddenly take a steep dive and then I would be floundering.

So I think its as well to get your future support network set up as well so that if you suddenly find you can’t cope, theres somewhere they can go for respite care, to give you a breather for a week. Or if you find that really you can’t cope at all, you’ve already started getting the lists from, I got my lists from Social Services and the psychiatric Social Worker, of respite homes, residential homes, nursing homes, all of those, so that you can start looking around basically.

Because it can take a long time I gather, from what I’ve heard from other people to find somewhere for them to go, if you get to the point where they need to go into residential care. Be prepared basically.

And in the last six months that she was home with me she hardly went out at all. For about the last four months she didn’t get up out of bed at all. And with the poor diet and no exercise she eventually got to the stage where I had to call the doctor in because she was collapsing. In the last two weeks that she was home I had tremendous problems. I didn’t go to bed at all, listening for her to get up out of bed. I had to support her to the toilet.
The doctor came in and didn’t do an awful lot. I had, I mean the doctors and the nurses came in and it wasn’t until after about a fortnight that one of the nurses said ‘you have to, she has to go into hospital. They came for her at half past seven on a December evening which there was no way that she was going to move, she wouldn’t go. The ambulance drivers refused to take her.
The following day the senior consultant, the doctor and a senior social worker came and asked if I’d mind if they would section her and, and that way they could take her away to ensure that she got the, the support that she required relative to her diet etc.
That was December ’98, and she went in for an assessment and the assessment was that they thought it best if she had nursing care. So she has now been in a nursing home for about two and a quarter years.

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 shes entitled to income support if shes in this home. So were assessing you as if shes 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, well 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 weve 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 Councils 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 shes 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.