Welcome back after lunch, everybody. We've got a great speaker next to keep you from falling asleep in a postprandial state. And this is Marianne Tolbert, who's got extensive personal experience of being a carer for people with dementia. And I'm sure she's going to tell us lots more about that next. She's also national carers ambassador for Carers UK and for Alzheimer's Research UK and carers champion for age UK in Oxfordshire. So I think we can trust her expertise. Thank you very much.
I know everyone right. Well, I understand that the aim of this conference is to attract people into old age psychiatry. Well, I think here's one reason you'll never be out of a job. So you probably already know that by 2050 they're going to be 19 million people over the age of 65, eight million of them over the age of 80, and two million people with dementia. So if you're going to old age psychiatry, you are not going to be short of a job.
You'll always be busy. But of course, you'd expect me to say that that isn't why you should do it. The important thing about going into old age psychiatry is that you're you'll be honouring the lives of people who are like you, people who were once 19 and 21, just November 39. I mean, you're aware of when that was in relation to the First World War, are you? It has started two months ago. So like so many people, my mother and my father rushed to get married.
They eloped. They eloped on the back of his motorbike. And because her parents didn't think that he was suitable, but they were married for 61 years. So he was obviously suitable for something. But so there they are. And as I say, 19 and 22, 23. And here they are again. This is my favourite photograph of them in their garden, having a rest in between digging the lawn and things like that. But of course, this might make life look very rosy.
And unfortunately, the end of their lives wasn't as rosy as this might seem. I ended up caring for them both. For nearly 15 years, my dad had vascular dementia and my mum had Alzheimer's. He died just as she was diagnosed. And so they sort of segued from the care of dad into the care of mum, which was really tough, that dad became demented overnight. He was absolutely fine. He was doing very well.
He was eight years old and he took a walk down to the village, which was about 30 minutes away, something he did nearly every day. He was a very fit person and people thought that he'd tripped over the kerb. He hadn't tripped over the kerb. He had had a massive stroke. And that stroke made him demented overnight. I won't go into all the gory details of his being thrown out of hospital and ended up in a home that was so awful.
He thought he was at school, kept asking Mum to take him home and have you come to take me home. And eventually she did. She just picked him up and all his stuff took him home and cared for him at home for two years. But he was doubly incontinent, demented. It was very, very tough on Mum, who was coming up for Easter herself, and he died at the age of 84. So the last four years of his life were not wonderful.
And caring for someone who's become demented overnight is particularly difficult because as you can imagine, my mum went from being in a full, complete and intimate marriage. And suddenly her lover, her husband, her friend of so many years, nearly 60 years by that time, had to become someone to whom she cared, someone who didn't recognise her, somebody who's doubly incontinent, very, very difficult. She used to cry down the phone to me often.
It was very, very difficult. But then she herself was diagnosed with dementia. Here's my mum, aged 17. Who does she look like? Little test. I think she looks like Catherine Zeta Jones. No, you can't see it. Oh, Elizabeth, I said no, I think that's the hair that was the in style at the time. OK, so she's 17, she's full of the usual sorts of dreams that we all have when we're 17. And here she is at 84, toothless, but still smiling.
And she she was always very happy. I mean, before she actually came to live with me in 2003, I would like to have brought her to live with me in 2002 because she really shouldn't have been on her own. We had some terrible times when she was still living on her own. For example, once I was speaking at a conference in Bath and I didn't get to my room till midnight and I rang my answering machine and found out what it. And there's a message from Mum Zvika who set her alarm is ringing.
She had one of those things that put round to her alarm is ringing. But I've been over there, but I can't get in. There's everything's locked and everything's dark. And I thought, oh, goodness, what am I going to do? I rang the vicar. He wasn't there. I rang social services and I thought my heart was thumping. And amazingly, 20 minutes later, Social Services rang me back. Social services are brilliant. When they're brilliant, they can be awful.
But in my experience and more often brilliant. And they rang me back. They'd got there. They had the key and the police were there by that time. So there the vicar, two policemen, two neighbours and two people from social services all trooped in. A mum was just asleep in bed. She hadn't heard the alarm go off. But that sort of scare happens a lot when you're caring from a distance. She also set fire to the microwave.
You should put a potato in for an hour because on high, because that's how long you cook a baked potato for the whole thing ended up in flames. And luckily, the neighbours saw another time I went and I used to go to the village and find out. I found out that all the shopkeepers had been running up a tab for her because she'd go in. She was always mean. My mum, she went into the shop, she'd buy what she wanted and then say, Oh, I forgot my purse.
Well, you can't let this lovely little old lady go without her bit of bacon, can you? So that all let her have it. And she never had any money. And so I used to go round paying everybody back. And I eventually I opened tabs for her in every shop. But in 2003, she came to live with me and at first it was wonderful.
At first it was so much nicer knowing that where she was for a start and also knowing that she was warm, that she was well fed, that she was wearing the right things, all that soothing kept herself clean because she hadn't been cleaning herself. It was interesting when she came to live with me at home, should be started to look very blank. And you'll all be familiar with the the face of a blank person with dementia, just not really there.
And when she came to live with me, she was engaging with people again, and she lost that blank view completely. And in fact, she never picked it up again. So right until her death at the age of 89, she didn't look blank again. She came to live with me. There were some good times and there were some bad times. I mean, I remember one particularly heartwarming moment. My brother came in.
She had no idea who he was. She didn't recognise him, but she threw her arms around his neck and said, I don't know who he is, but I know I love him. So that all sorts of very heart warming, very real, very moving moments. But, you know, I can't kid you. It wasn't all good. I remember one time I was kneeling by her bed putting her socks on and she hadn't been wearing tights for quite some while because she kept losing mean.
At one point she was putting on her tights perfectly normally. And the second moment she was just unable to do it. So she'd been wearing socks and I was putting her socks on for her. And I looked up just in time to see her maliciously kick me in the face. And I was just so, so angry. I just had to get myself out of the room and close the door because I was going to hit her, you know, there I was putting everything on hold my whole life on hold, putting and in order to look after her.
And she could kick me in the face like that. And it was sometimes awful. We had a disastrous respite care where I hadn't realised I had rung the council and asked for a carer's. Assessments and I've been told it wouldn't be worth having because they couldn't afford anything, so I said, OK, in that case, I'm not going to bother with the result that three years later I still didn't realise I was entitled to six weeks a year respite anyway.
I was told this, but by then I was on my knees and she went into respite care for a week and I checked out the home, thought it was OK and so on, put her in. Then they told me not to call in, to go away and enjoy myself, which I did. And then I was looking forward to her coming home. I saw the bus drive up and she was looking out the window. She had both her hands on the window and she looked like something out of balance. And she looked so utterly, utterly miserable that she saw me.
And she just burst into floods of tears and she cried for about three hours and she kept saying, I'm a wicked person, I'm a wicked person and I want to die. I want to die. And I don't know what happened in the home. She was filthy. Instantly, her fingernails were full of faeces, her tights, everything was filthy. She had lost a bra. She didn't have a teeth. When I complained to the home, they told me that she I had looked after her too well at home.
And it was my fault, in effect, because the home couldn't provide the same standard of care. They told me that she had chosen not to wear her bra and chose not to wear her teeth and that she must have got filthy in the drive from the home to my home, which is all of five minutes when you're a carer, trying to make a complaint is very, very difficult because you simply haven't got the time. It's just and they make it as difficult as they possibly can.
And so that was and for the next five weeks, Mum was really, really in a room and she cried at the drop of a hat. She was frightened to the bathroom. She wouldn't go to bed unless I looked under the bed and looked in all the wardrobes. And it was really, really distressing. And I hit a brick wall. In the end, I had been I was still working full time throughout all of this. And I had at one point I was given direct payments, which you probably know that now called individual payments.
I understand. And but there's to buy in care. And so I had six carers. So as well as being a carer, as well as having a full time job and being a carer for my mum, I was employing six carers. I had to do their tax, their national insurance, their holiday pay. One of them was trying to get pregnant. And my God, I was I was urging her on without realising that I would have to pay maternity pay and all this sort of thing.
I course thank God she didn't get pregnant until afterwards and then she got pregnant. And there's a lovely baby girl to to show for it. And but I was just I remember one night I was about four o'clock in the morning, I was staring at the Inland Revenue's website, and I was just there were tears pouring down my cheeks. And I was just thinking, you know, well, I just I don't understand this. I'm computer literate. I've got three degrees. I know about money.
I don't understand a word of this. How do other people manage when they haven't got those advantages? It was just awful. And finally, I had to do every week, I had to do a router for six carers, all of whom were part time, all of whose partners part time and all of it had to fit into my schedule, which is completely arbitrary. Most of the time. It's different every day. And I went this week to Carol, one of the carers, and I said, would you get Mum up for the next three mornings or something?
And Carol said, Actually, man, I've been meaning to talk to you about that. I don't want to get your mum up any more. She she really she hates getting up early and she really did hate getting up early. But I looked at Carol, I could see like the register that I just spent two hours on just disappearing. And I burst into tears and I just cried and cried and cried. And I was thinking, well, what do I do now? I can't. I knew that the time the moment had come, I just hit that I couldn't do any more.
And I went to ring the doctor and I thought, well, I can't bring the doctor. [INAUDIBLE] put me in a home. And, oh, I didn't know what to do. I rang my uncle who lived three hours away, and he said he was coming straight up. Another uncle came in. They they called the doctor for me. The doctor gave me Valium. I do love Valium. And I five minutes later, I was eating a huge pizza and feeling a lot better. But my caring days had to come to an end. I knew I just couldn't do it anymore.
And for the last six months of her life, mum went into the Headington Care home, which was completely brilliant. Actually, it was a wonderful thing because she found a new lease of life. She'd been sitting at home being the sole object of the attention of me or one of the carers. And here she was in this lovely, big, airy, open home and she could walk around it. Well, she could go to bed if she wanted to, not if she didn't want to. It worked very well.
So if you want a reason to go into old age psychiatry and indeed the care of people with dementia, I would say absolutely go for it, because you really are helping to honour the lives of people whose lives should be honoured, just as yours should be honoured. Mum's original consultant helped to make the decision. Sorry, let me just do her original consultant help to make the decision that she should come and live with me.
I spent many hours on the phone with this woman asking what was likely to happen with Alzheimer's. I didn't know anything about Alzheimer's at the start and I was so grateful to that woman for helping me make that decision. It was the best decision I ever made. I don't regret for one minute, Mum's coming to live with me and mum's later consultant, a man that probably some of you know I know Charlotte knows and was responsible.
When I took Mum to see him, he rang my GP and said actually she brought her mother in thinking there was something wrong. But there is something wrong. But it's not with her mother. It's with her. She's coming to the end of her tether and she really needs some help. And my doctor was able to help me. And again, that wouldn't have happened had it not been for the sensitivity and the care of of one of your community. And I think you're going into an honourable part of an honourable profession.
And caring for dementia is a very, very difficult task. But I hope I've conveyed to you that it's also incredibly rewarding. Whilst Mum was with me, I wrote a blog for Saga magazine online, and when Mum died, I made it into a book. This is the book and I've bought a few copies. They're very happy to to sell them to you if you want. And what I want to say, what I want to leave you with is it wasn't you who helped me through years of caring for my mum, but it was your profession.
And thank you from the bottom of my heart for even considering going into this, because people like me couldn't do it without people like you. Thank you.