Carers of people with dementia

But in the daytime sometimes one can't, I, we may have been coming in from a walk or something of that sort and I forgot to re-lock the door and then I was doing something perhaps in the kitchen and I suddenly realised she'd gone. And she'd simply vanished away. And there were two or three times when I had to call the police and they went and search for her, the police advised me to stay at home. And in fact she always, on the first occasion I think she came back by herself rather remarkably. But later on either the police managed to find her or sometimes a friend who I warned that she could be walking around came, brought her back home.

I think that in some ways is the most alarming in my experience of the, and the most alarming stage of the dementia because it, one feels that there could so easily be a fatal accident. But in fact she had an uncanny way of avoiding trouble. She seemed to be able still to cross a crowded street and to know which way to look and that sort of thing as if this was a reflex which was very deeply embedded in the consciousness. And even Alzheimer's with its disturbance of the communications in the brain hadn't been able to eradicate.

More recently - and this has been the major area of difficulty - she's wanted to wander. Well, she's wanted to go home. That's now something that happens three or four times a week, usually in the evening when she'll announce after a meal in the evening 'Well I'm going home, I've been here long enough, I need to get back to my parents.' So she'll pack a case and sets off. Now the way I deal with that now, it's taken a little while to do this, is that I don't try and fight against it, I certainly don't try to lock the door, although I did initially but that led to a great deal of anger and some violence, she would throw a telephone or throw something across the room and occasionally she's tried to hit me, well she has hit me but not very seriously.

What I do now is to say to her 'Well if you're going I'll take you down in the car to the town.' 'No, no…' she'll say '…you don't need to do that.' 'Go on, I will.' 'Alright then.' So we get in the car and we drive into town and then I say to her 'Well I'll tell you what, I'll walk with you a little way.' 'No you don't need to do that, I'm quite capable of walking on my own; alright well if you want to you can.' So we walk through the town and we walk for about half an hour and then after about half an hour I can tell by the way the conversation's going that she's kind of back in the real world again and I just say 'Shall we go home and have a cup of coffee or a bite to eat?' 'Yes that would be nice.' she says and we come back and we're back in the real world except that quite often ten minutes later she'll say 'Well, I'm off.' and she makes off again.

I think the worst is, we've never had it more than three times in an evening, it does get very tiring when it gets to 10 o'clock and it's pouring with rain and she still insists on going, but we go. Each time having a shorter and shorter walk and then she seems to come back.

One of the most frightening moments in my caring was one late November afternoon, it was just getting dark and starting to rain and I realised that [my husband] was missing, he was no longer in the house, I searched high and low for him, he wasn't anywhere around and then I found that he'd managed to undo a patio door and had gone out that way. And I remember going to the bottom of the drive with the light failing and the rain starting to come down and I had no idea which way he'd gone, absolutely no idea which way he'd gone. And I really wished that I'd had an electronic tagging device, that I would be able to have in my hand a piece of equipment which would say to me 'He's gone that way' and at least we'd know roughly where to start looking.

I searched in the car for about three-quarters of an hour until it was absolutely pitch black and I couldn't find him and then I got hold of my son and two or three friends in the village to go searching in their cars and we searched again for about another hour and eventually somebody said that they would try the footpaths. [Name], my son tried from one end and a friend tried from the other and they found him wet and miserable, no idea at all where he was, and with no coat on.  I was very relieved to see him but it had taken what, the best part of three hours to find him, [searching] in an ever widening circle.

And yet I suppose some people politically correctly will say it is an onslaught on a person's autonomy and privacy to be electronically tagged. All that I can say is that if you've ever been a carer and been in that situation of not knowing where to start to look, I think I would have preferred a discreet something on his sock and a quick finding rather than this wet and miserable chap we found at the end.

I managed to get him moved from there to a nursing home which was much closer to home and a much bigger place. So, although it was a nursing home for the elderly, they had to change the rules so that they could take [my husband]. But the nursing home had to get special permission.

He was much happier there for two or three months because it was a nice place for us all to visit. It was out in the country.  We put a radio-tagger on [my husband] like they use for tagging animals and use for wildlife research so that when he got lost they had a chance of finding him. And he was there, that was a much better time, he was there for about two or three months one spring.

There was one time when [my husband] managed to get lost and managed to destroy his radio transmitter and he was knocked over by a lorry. He broke his arm, it could have been a lot worse, because he got on to one of the dual carriage ways and he was walking along in the dark.

And he, he changed, he seemed to get much more aggressive after that, I presume he was very frightened. It must have been dreadful for [husband's name], he had so much courage just to keep going, keep plodding on.

He's just going, trying to, he's actually escaped twice, from a secure unit, which made me very concerned. The day after he moved in I was out in the morning, got back and there was a message on my answer phone, would I ring the home - excuse me - so I rang the home and they said 'Well it's OK now he's turned up but we needed to let you know that he'd gone missing.' I was so stunned I couldn't really react. I thought, the day before we'd taken him in, there were swipe cards, keypads and my grandson who'd come with me had said 'At least he won't escape from here, will he?'

I just could not believe it when they told me and what really scared me, he'd walked from the unit along a pavement and then along a country road, it must have been a good mile on a summer's Sunday morning, no pavements and turned up in the local pub. And the pub owner realised there was a problem and rang the police and the Unit had already rung the police so they put two and two together. And he'd managed to con a pint of best bitter and then realised he didn't have any money and the care home manager went to pick him up and took him back.

I say, at first I just said 'Thank goodness he's safe and fancy him finding a pub.' Because he'd never have, it was just pure luck, he'd never have got there. But then I began to think when I put the phone down - hold on he was walking along that road on a Sunday morning, no pavements, no road sense I just was absolutely devastated really.