I got a lot of information from [name] at [name of agency], not just talking to her, information, written information and also I’d got a book on Alzheimer’s, which I think I got from the Alzheimer’s Society. I get newsletters and things from the Alzheimer’s Society but to me they never, they’re interesting but not helpful. I’ve always found that I’ve got to that stage by the time I’ve read it if you see what I mean! It’s come along afterwards, not in advance of.

I think I got most of my information from talking to other people. You see I’ve been going to [the day centre] carers now for five years in July. I’ve talked to an awful lot of carers, there aren’t many of us, theres probably six of us at a time but I suppose that’s when I’ve picked up what I call practical information. Different peoples reaction, different peoples problems which has been far more helpful and also when my wife was here I never got much time to read. By the time I was ready to read of an evening I was nodding off at any rate.

Yes, in theory care in the home is fantastic, but in practice for us it left a lot to be desired and I think with probably lots of other old people, but certainly with Alzheimer’s, they need that emotional support. Somebody being there, somebody to talk to, that sort of thing more than the practical help really, but you can’t get that unless the practical help is needed first.

I mean I was very lucky, again I had my own private band of friends who went in, so yes, the most helpful people were friends who rallied round and helped enormously. And again, the Alzheimer’s Association (Society); I’m not sure that my own particular local group was very good in practical help, although I did join and I did go along and they were very supportive they don’t seem to have got it together in practical help. I think other areas have gone on a lot better in providing practical help, but they were there and at the end of a phone and that sort of thing was enormously helpful.

Get in touch with others too; other people who are experiencing the same things, even if you can’t go and visit them, there are support groups. I know our local Alzheimer’s – I said they didn’t, of course they do – do a lot, but their support groups are in the day, I couldn’t go because I work full time. But yes, get out to a support group because meeting other people who are going through the same thing is a terrific bonding thing and you can help each other even if you just phone each other sometimes.

And something I didn’t say, and I know this is all being funded by the Alzheimer’s and I’m not saying it because of that, thank goodness for the Alzheimer’s Society as well because as soon as I knew mum had got Alzheimer’s I joined. And they’ve got their helpline, which I haven’t actually used the help line but to know it’s there. And they have, I think I’ve bought every leaflet they’ve got, absolutely every, and to see things in writing and things that you wonder about and things that you think might be so or might not be so, to actually see them in writing.

And to know theres a body that, and once or twice I have phoned up and people have been so understanding and so, ‘Well I don’t know but I could find out so and so for you. So I think that has also been invaluable. And I’d say to anybody join as soon as you get, you know any carer, join because you are not alone.

They’re at the end of the phone all the time, somebody who really understands and that’s what you need. And I mean I was lucky I had friends that I always said supposing somebody had been worse off than me that didn’t have a very good professional back-up, didn’t have good friends, perhaps a, a spouse or somebody because their friend could have died you know. And I’d certainly, I’d certainly encourage anyone to get hold of the Alzheimer’s Society, immediately for whatever comes later, just to make that contact because later on it’s a bit more difficult to make contact.

Because you are not in a fit state but if you’ve already made that contact then it’s there as a back up. It’s luck of the draw isn’t it? I’m lucky to have good friends and unlucky to have professional bodies who aren’t so good.

And to anybody now who receives a diagnosis I would say there should be some kind of automatic procedure whereby the GP or the consultant puts the patient and carer in touch with the nearest branch of the Alzheimers Society and also informs the Alzheimers Society that there is a newly diagnosed person in their patch.

Because I knew I was in denial, I didnt want to say this was Alzheimers and the Alzheimers Society eventually, through a mutual friend, came to me. So I think if you want help its there, its knowing where it is and its also the Alzheimers Society coming to you. So thats really around the first three or four years of the illness I would say. Well, two to four years after diagnosis I think you need a lot of help in the middle phase of the illness.

I first of all bought a book called The Vanishing Mind which gave me the sort of, well like the medical picture of what Alzheimers is and it was three years after diagnosis that this mutual friend put us in touch with the Alzheimers Society and thats the best thing that ever happened. I was given informative literature to read and I was drip-fed information, not all at once but for my needs.

The information came, the outreach worker contacted me, she came, she was on the end of a phone if I needed her and she would come on a regular basis and see how we were doing. And she educated me on how to deal with difficult behaviour, on how to deal with habits like hiding and hoarding and explained things, you know, that they are losing so much of themselves that they feel the need to put things that are important to them in a safe place and thats why your handbag ends up in the washing machine! And when its explained to you and you understand, then you can make allowances because your natural reaction is to think that the person is winding you up.

Certainly, the Alzheimers Societys literature, the advice sheets which were again fed to me, drip-fed to me, booklets as they were published were fed to me and my nearest branch was in the next county, so I couldnt go to any support groups. But she came to me, or to us, to help me with strategies for caring for [my husband].

I was so impressed with all this, that I joined a group in [town] and we worked to establish a branch in [town] because I felt I was so thankful for everything that was being done for me, I wanted other people in a similar position in this part of the world, to have a similar sort of support. So interestingly when I joined the support group I was perhaps a person further along the line and was able to help other people, rather than personally finding the support group helpful because other people were you know, not quite so far along the journey.

But hearing talks, like the one [name] gave on activities, because thats a thing that bothers carers a lot – What can we give our relative to do – and hearing that talk, every now and again youd have a big flash of light and I thought Oh if only Id known that. So my greatest source of information – and still is – is the Alzheimers Society, for everything, whether its legal, financial or caring problems.

But I’ve become involved now with the Alzheimer’s Society and I’m a committee member. I didn’t ever want to be. I always felt I didn’t want anybody’s help and I didn’t feel they could help me. But I found gradually that yes I do need the help and also meeting people who’ve got, are in the same situation as yourself helps. But you don’t want to live with them all the time but just to talk to them occasionally.

A few of us meet for lunch once a month and we have, we have moments when we talk to each other about our partners but the rest of the time it’s general things, and it, we all understand the other’s problems to a point, although there all different of course, but we understand the difficulties people have. And we can, all these things help you, I feel better when I come away anyway, les put it like that. it’s not easy to help people because some people are like me, I didn’t want help in the beginning. I just felt I didn’t need help from anyone.

I didn’t think it would do me any good. I thought I was strong enough to cope with it but no one, believe me, is strong enough to go on and on and on year after year, day after day, minute after minute, you need help. And take all the help that’s going.

So we joined the Alzheimer’s Society which has been an absolute lifeline for us. The quality of the local branch is very high, particularly the home liaison officer. Were very much involved in their week-by-week activities. We’ve made a number of good friends through the society, people in a similar position to ourselves or carers who have now lost their partners but are still involved in the society and give us support and advice. That’s been an enormous source of strength.

Actually that’s not a, it’s something that didn’t come naturally to us. Were fairly, I suppose were fairly insular people. We’ve been, my daughter once said to me The problem is you’re too satisfied with your company. We’ve had an extremely happy marriage; we do everything together. We don’t necessarily look for too much excitement outside the house so it’s been quite a change for us. We go to every pub lunch and every bring-and-buy sale and car boot sale and coffee morning that we can but that’s been very, very good indeed.

After about nine months when I realised that nobody was really going to come trotting to the front door to tell me things and ask how we were, I needed to reach out to find out more at which point we joined the Alzheimer’s Society. And that, the Alzheimer’s newsletter and various other things, I send for all their literature, so within about twelve months wed built up quite a bank of information about the disease and about the process of caring and dealing with the various issues, legal, financial and so on.

Well as I say it took me a year to get round to the view that actually you do need to tap into all these sources of support and help and I regret that I didn’t do that for nine months to a year. Things changed really radically for us once we did that and I wish I’d done that. But I guess that’s how it goes, that it does take time before you begin to understand that you need to look outwards towards other supports.

I suppose were the kind of people may be, like yourself, you’ve been used to sorting out your own problems without going to outside agencies and it was a matter of pride that one could do this but that was kind of misguided. I try, if I meet people new to this situation I try to say this to them but I think everyone has to go through it in their own way.

But I do regret we wasted a year really, I don’t suppose it made that much difference in the end but I think it would have been useful if wed got involved in the Alzheimer’s Society and other things much earlier. But in general I don’t think there are too many regrets in that way.

I think our Christian faith is enormously important to both of us. From [my husband’s] point of view his faith gives him a hope beyond the disintegration of this life and its, it’s a great comfort to him to, to feel that he’s valued and, and as precious to God as if he had no disease, with all the limitations that, that come. So that’s very, very important to [him]. Its very, very important to me in that I can pray that we will be shown things that will be helpful for us that will be occupations that will help our days along in the winter, this kind of thing.

I can actually ask God to help me provide what is best for [my husband]. And ask him to give me the strength that I need to cope with this whole thing. So it’s important to both of us equally. And I think it is a great help for me to be able to remind [him], not only how precious he is to me, but how precious he is to God as well despite all the limitations that come with this disease. I think, I think that’s all I can say.

And I asked God to show me what my motives were and why I was doing it and I asked him to help me in my demeanour when I spoke to the Patient’s Representative. I asked to be protected from negative, malicious things that weren’t going to serve any purpose, just to pursue a route of justice, no more, no less. And actually to pursue a route that, my main motive was to, its interesting I couldn’t lodge that complaint until my main motive, was not to get at the individual, at the man, but to genuinely try and address a problem that could prevent others suffering the same fate that we suffered. And that was very much to do with my faith.

I wanted God to approve of my motives before I did it. When we have a big flare up and my husband really loses control and I’ve learnt that to try and talk it through logically is hopeless, to try and go to him and explain what’s gone wrong and why is, does nothing but inflame it. I would walk away and I would ask God to give me the grace to not fly back at him but to compose myself so that I can remember it’s a disease and that I’ve got to go and try and help him through the disease. Because you see we can’t ever really now have an argument like a normal married couple.

We are not coming from the same level playing field. If my husband feels passionately about something and I feel equally passionately the other way, I’m in, as much as anybody is who hasn’t got a brain disease, I’m in control and I can see the thing reasonably appropriately. If my husband’s stuck in an obsessive frame of mind, its no good me reacting as I would have done ten years ago because I’m reacting not against an opinion or a person but a disease. And I’ve got to adjust my reaction, and I need help with that and I would pray to God to help me. It’s as simple as that really.

And I’ve asked in prayer in the past to know what the right thing is. Is it right to turn my back and let the dog run out into the road, or is it right to drop it and trust and just be led what is right? Yes, and when I, when we have difficulties as a family. Now that is a great help. If I have a particularly pressing worry, I will contact the children and I will ask them to pray about that worry that I will have clarity of the way forward. And I mean that is a great help because its not only support from them, its, its actual prayer support too.

And if we’ve got something looming for instance, my son got married and there was enormous potential there for things to come horribly unstuck with my husband. And we all prayed that it wouldn’t happen, and we had the happiest day I can possibly describe to you. That’s how I would, how my faith would intervene.