1
00:00:00,210 --> 00:00:11,280
Welcome back after lunch, everybody. We've got a great speaker next to keep you from falling asleep in a postprandial state.

2
00:00:11,280 --> 00:00:21,480
And this is Marianne Tolbert, who's got extensive personal experience of being a carer for people with dementia.

3
00:00:21,480 --> 00:00:24,480
And I'm sure she's going to tell us lots more about that next.

4
00:00:24,480 --> 00:00:34,980
She's also national carers ambassador for Carers UK and for Alzheimer's Research UK and carers champion for age UK in Oxfordshire.

5
00:00:34,980 --> 00:00:39,510
So I think we can trust her expertise. Thank you very much.

6
00:00:39,510 --> 00:00:50,550
I know everyone right. Well, I understand that the aim of this conference is to attract people into old age psychiatry.

7
00:00:50,550 --> 00:00:57,300
Well, I think here's one reason you'll never be out of a job.

8
00:00:57,300 --> 00:01:05,760
So you probably already know that by 2050 they're going to be 19 million people over the age of 65,

9
00:01:05,760 --> 00:01:13,470
eight million of them over the age of 80, and two million people with dementia.

10
00:01:13,470 --> 00:01:18,510
So if you're going to old age psychiatry, you are not going to be short of a job.

11
00:01:18,510 --> 00:01:25,980
You'll always be busy. But of course, you'd expect me to say that that isn't why you should do it.

12
00:01:25,980 --> 00:01:35,970
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,

13
00:01:35,970 --> 00:01:44,130
people who were once 19 and 21, just November 39.

14
00:01:44,130 --> 00:01:50,280
I mean, you're aware of when that was in relation to the First World War, are you?

15
00:01:50,280 --> 00:01:55,980
It has started two months ago. So like so many people, my mother and my father rushed to get married.

16
00:01:55,980 --> 00:02:07,530
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.

17
00:02:07,530 --> 00:02:12,030
So he was obviously suitable for something. But so there they are.

18
00:02:12,030 --> 00:02:17,550
And as I say, 19 and 22, 23.

19
00:02:17,550 --> 00:02:30,150
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.

20
00:02:30,150 --> 00:02:35,010
But of course, this might make life look very rosy.

21
00:02:35,010 --> 00:02:40,530
And unfortunately, the end of their lives wasn't as rosy as this might seem.

22
00:02:40,530 --> 00:02:51,360
I ended up caring for them both. For nearly 15 years, my dad had vascular dementia and my mum had Alzheimer's.

23
00:02:51,360 --> 00:02:54,870
He died just as she was diagnosed.

24
00:02:54,870 --> 00:03:07,320
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.

25
00:03:07,320 --> 00:03:09,780
He was absolutely fine. He was doing very well.

26
00:03:09,780 --> 00:03:17,730
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.

27
00:03:17,730 --> 00:03:22,680
He was a very fit person and people thought that he'd tripped over the kerb.

28
00:03:22,680 --> 00:03:31,290
He hadn't tripped over the kerb. He had had a massive stroke. And that stroke made him demented overnight.

29
00:03:31,290 --> 00:03:38,070
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.

30
00:03:38,070 --> 00:03:43,650
He thought he was at school, kept asking Mum to take him home and have you come to take me home.

31
00:03:43,650 --> 00:03:50,430
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.

32
00:03:50,430 --> 00:04:01,440
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.

33
00:04:01,440 --> 00:04:05,430
So the last four years of his life were not wonderful.

34
00:04:05,430 --> 00:04:11,220
And caring for someone who's become demented overnight is particularly difficult because as you can imagine,

35
00:04:11,220 --> 00:04:16,620
my mum went from being in a full, complete and intimate marriage.

36
00:04:16,620 --> 00:04:23,910
And suddenly her lover, her husband, her friend of so many years, nearly 60 years by that time,

37
00:04:23,910 --> 00:04:32,520
had to become someone to whom she cared, someone who didn't recognise her, somebody who's doubly incontinent, very, very difficult.

38
00:04:32,520 --> 00:04:38,040
She used to cry down the phone to me often.

39
00:04:38,040 --> 00:04:44,940
It was very, very difficult. But then she herself was diagnosed with dementia.

40
00:04:44,940 --> 00:04:51,870
Here's my mum, aged 17. Who does she look like?

41
00:04:51,870 --> 00:05:02,720
Little test. I think she looks like Catherine Zeta Jones. No, you can't see it.

42
00:05:02,720 --> 00:05:07,550
Oh, Elizabeth, I said no, I think that's the hair that was the in style at the time.

43
00:05:07,550 --> 00:05:14,780
OK, so she's 17, she's full of the usual sorts of dreams that we all have when we're 17.

44
00:05:14,780 --> 00:05:20,660
And here she is at 84, toothless, but still smiling.

45
00:05:20,660 --> 00:05:29,360
And she she was always very happy. I mean, before she actually came to live with me in 2003,

46
00:05:29,360 --> 00:05:35,270
I would like to have brought her to live with me in 2002 because she really shouldn't have been on her own.

47
00:05:35,270 --> 00:05:40,160
We had some terrible times when she was still living on her own. For example,

48
00:05:40,160 --> 00:05:50,780
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.

49
00:05:50,780 --> 00:05:54,320
And there's a message from Mum Zvika who set her alarm is ringing.

50
00:05:54,320 --> 00:05:58,580
She had one of those things that put round to her alarm is ringing.

51
00:05:58,580 --> 00:06:05,240
But I've been over there, but I can't get in. There's everything's locked and everything's dark.

52
00:06:05,240 --> 00:06:09,410
And I thought, oh, goodness, what am I going to do? I rang the vicar. He wasn't there.

53
00:06:09,410 --> 00:06:13,670
I rang social services and I thought my heart was thumping.

54
00:06:13,670 --> 00:06:17,330
And amazingly, 20 minutes later, Social Services rang me back.

55
00:06:17,330 --> 00:06:21,530
Social services are brilliant. When they're brilliant, they can be awful.

56
00:06:21,530 --> 00:06:25,550
But in my experience and more often brilliant. And they rang me back.

57
00:06:25,550 --> 00:06:29,600
They'd got there. They had the key and the police were there by that time.

58
00:06:29,600 --> 00:06:36,590
So there the vicar, two policemen, two neighbours and two people from social services all trooped in.

59
00:06:36,590 --> 00:06:41,450
A mum was just asleep in bed. She hadn't heard the alarm go off.

60
00:06:41,450 --> 00:06:48,840
But that sort of scare happens a lot when you're caring from a distance.

61
00:06:48,840 --> 00:06:50,540
She also set fire to the microwave.

62
00:06:50,540 --> 00:06:58,760
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.

63
00:06:58,760 --> 00:07:06,170
And luckily, the neighbours saw another time I went and I used to go to the village and find out.

64
00:07:06,170 --> 00:07:11,540
I found out that all the shopkeepers had been running up a tab for her because she'd go in.

65
00:07:11,540 --> 00:07:19,220
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.

66
00:07:19,220 --> 00:07:24,080
Well, you can't let this lovely little old lady go without her bit of bacon, can you?

67
00:07:24,080 --> 00:07:28,460
So that all let her have it. And she never had any money.

68
00:07:28,460 --> 00:07:36,260
And so I used to go round paying everybody back. And I eventually I opened tabs for her in every shop.

69
00:07:36,260 --> 00:07:44,240
But in 2003, she came to live with me and at first it was wonderful.

70
00:07:44,240 --> 00:07:53,900
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,

71
00:07:53,900 --> 00:08:02,090
that she was wearing the right things, all that soothing kept herself clean because she hadn't been cleaning herself.

72
00:08:02,090 --> 00:08:09,050
It was interesting when she came to live with me at home, should be started to look very blank.

73
00:08:09,050 --> 00:08:15,680
And you'll all be familiar with the the face of a blank person with dementia, just not really there.

74
00:08:15,680 --> 00:08:20,990
And when she came to live with me, she was engaging with people again, and she lost that blank view completely.

75
00:08:20,990 --> 00:08:30,890
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.

76
00:08:30,890 --> 00:08:34,550
She came to live with me. There were some good times and there were some bad times.

77
00:08:34,550 --> 00:08:40,370
I mean, I remember one particularly heartwarming moment. My brother came in.

78
00:08:40,370 --> 00:08:49,970
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.

79
00:08:49,970 --> 00:08:55,820
So that all sorts of very heart warming, very real, very moving moments.

80
00:08:55,820 --> 00:08:59,210
But, you know, I can't kid you. It wasn't all good.

81
00:08:59,210 --> 00:09:05,930
I remember one time I was kneeling by her bed putting her socks on and she

82
00:09:05,930 --> 00:09:10,580
hadn't been wearing tights for quite some while because she kept losing mean.

83
00:09:10,580 --> 00:09:16,700
At one point she was putting on her tights perfectly normally. And the second moment she was just unable to do it.

84
00:09:16,700 --> 00:09:26,120
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.

85
00:09:26,120 --> 00:09:30,890
And I was just so, so angry.

86
00:09:30,890 --> 00:09:35,960
I just had to get myself out of the room and close the door because I was going to hit her, you know,

87
00:09:35,960 --> 00:09:42,350
there I was putting everything on hold my whole life on hold, putting and in order to look after her.

88
00:09:42,350 --> 00:09:46,790
And she could kick me in the face like that. And it was sometimes awful.

89
00:09:46,790 --> 00:09:57,400
We had a disastrous respite care where I hadn't realised I had rung the council and asked for a carer's.

90
00:09:57,400 --> 00:10:02,830
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,

91
00:10:02,830 --> 00:10:11,370
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.

92
00:10:11,370 --> 00:10:18,130
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,

93
00:10:18,130 --> 00:10:26,350
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.

94
00:10:26,350 --> 00:10:33,490
And then I was looking forward to her coming home. I saw the bus drive up and she was looking out the window.

95
00:10:33,490 --> 00:10:38,080
She had both her hands on the window and she looked like something out of balance.

96
00:10:38,080 --> 00:10:42,850
And she looked so utterly, utterly miserable that she saw me.

97
00:10:42,850 --> 00:10:49,180
And she just burst into floods of tears and she cried for about three hours and she kept saying,

98
00:10:49,180 --> 00:10:53,680
I'm a wicked person, I'm a wicked person and I want to die. I want to die.

99
00:10:53,680 --> 00:11:01,690
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.

100
00:11:01,690 --> 00:11:13,540
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.

101
00:11:13,540 --> 00:11:19,060
And it was my fault, in effect, because the home couldn't provide the same standard of care.

102
00:11:19,060 --> 00:11:23,440
They told me that she had chosen not to wear her bra and chose not to wear her

103
00:11:23,440 --> 00:11:29,830
teeth and that she must have got filthy in the drive from the home to my home,

104
00:11:29,830 --> 00:11:41,290
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.

105
00:11:41,290 --> 00:11:45,990
It's just and they make it as difficult as they possibly can.

106
00:11:45,990 --> 00:11:55,810
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.

107
00:11:55,810 --> 00:12:01,960
She was frightened to the bathroom. She wouldn't go to bed unless I looked under the bed and looked in all the wardrobes.

108
00:12:01,960 --> 00:12:09,700
And it was really, really distressing. And I hit a brick wall.

109
00:12:09,700 --> 00:12:15,690
In the end, I had been I was still working full time throughout all of this.

110
00:12:15,690 --> 00:12:21,340
And I had at one point I was given direct payments, which you probably know that now called individual payments.

111
00:12:21,340 --> 00:12:26,290
I understand. And but there's to buy in care.

112
00:12:26,290 --> 00:12:37,330
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.

113
00:12:37,330 --> 00:12:41,620
I had to do their tax, their national insurance, their holiday pay.

114
00:12:41,620 --> 00:12:43,150
One of them was trying to get pregnant.

115
00:12:43,150 --> 00:12:52,300
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.

116
00:12:52,300 --> 00:12:58,170
I course thank God she didn't get pregnant until afterwards and then she got pregnant.

117
00:12:58,170 --> 00:13:03,370
And there's a lovely baby girl to to show for it.

118
00:13:03,370 --> 00:13:08,470
And but I was just I remember one night I was about four o'clock in the morning,

119
00:13:08,470 --> 00:13:14,260
I was staring at the Inland Revenue's website, and I was just there were tears pouring down my cheeks.

120
00:13:14,260 --> 00:13:19,480
And I was just thinking, you know, well, I just I don't understand this.

121
00:13:19,480 --> 00:13:24,610
I'm computer literate. I've got three degrees. I know about money.

122
00:13:24,610 --> 00:13:32,350
I don't understand a word of this. How do other people manage when they haven't got those advantages?

123
00:13:32,350 --> 00:13:40,390
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,

124
00:13:40,390 --> 00:13:47,560
all of whose partners part time and all of it had to fit into my schedule, which is completely arbitrary.

125
00:13:47,560 --> 00:13:50,620
Most of the time. It's different every day.

126
00:13:50,620 --> 00:13:59,830
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?

127
00:13:59,830 --> 00:14:05,650
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.

128
00:14:05,650 --> 00:14:11,440
She she really she hates getting up early and she really did hate getting up early.

129
00:14:11,440 --> 00:14:17,360
But I looked at Carol, I could see like the register that I just spent two hours on just disappearing.

130
00:14:17,360 --> 00:14:21,850
And I burst into tears and I just cried and cried and cried.

131
00:14:21,850 --> 00:14:30,730
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.

132
00:14:30,730 --> 00:14:35,440
And I went to ring the doctor and I thought, well, I can't bring the doctor. [INAUDIBLE] put me in a home.

133
00:14:35,440 --> 00:14:42,790
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.

134
00:14:42,790 --> 00:14:46,810
Another uncle came in. They they called the doctor for me.

135
00:14:46,810 --> 00:14:57,720
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.

136
00:14:57,720 --> 00:15:03,810
But my caring days had to come to an end. I knew I just couldn't do it anymore.

137
00:15:03,810 --> 00:15:10,530
And for the last six months of her life, mum went into the Headington Care home, which was completely brilliant.

138
00:15:10,530 --> 00:15:14,620
Actually, it was a wonderful thing because she found a new lease of life.

139
00:15:14,620 --> 00:15:21,850
She'd been sitting at home being the sole object of the attention of me or one of the carers.

140
00:15:21,850 --> 00:15:26,760
And here she was in this lovely, big, airy, open home and she could walk around it.

141
00:15:26,760 --> 00:15:32,880
Well, she could go to bed if she wanted to, not if she didn't want to. It worked very well.

142
00:15:32,880 --> 00:15:46,770
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,

143
00:15:46,770 --> 00:15:54,990
because you really are helping to honour the lives of people whose lives should be honoured, just as yours should be honoured.

144
00:15:54,990 --> 00:16:00,690
Mum's original consultant helped to make the decision.

145
00:16:00,690 --> 00:16:06,840
Sorry, let me just do her original consultant help to make the decision that she should come and live with me.

146
00:16:06,840 --> 00:16:14,220
I spent many hours on the phone with this woman asking what was likely to happen with Alzheimer's.

147
00:16:14,220 --> 00:16:21,960
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.

148
00:16:21,960 --> 00:16:29,820
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,

149
00:16:29,820 --> 00:16:34,290
a man that probably some of you know I know Charlotte knows and was responsible.

150
00:16:34,290 --> 00:16:42,270
When I took Mum to see him, he rang my GP and said actually she brought her mother in thinking there was something wrong.

151
00:16:42,270 --> 00:16:50,220
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.

152
00:16:50,220 --> 00:16:52,320
And my doctor was able to help me.

153
00:16:52,320 --> 00:17:01,650
And again, that wouldn't have happened had it not been for the sensitivity and the care of of one of your community.

154
00:17:01,650 --> 00:17:09,180
And I think you're going into an honourable part of an honourable profession.

155
00:17:09,180 --> 00:17:12,870
And caring for dementia is a very, very difficult task.

156
00:17:12,870 --> 00:17:20,610
But I hope I've conveyed to you that it's also incredibly rewarding.

157
00:17:20,610 --> 00:17:27,990
Whilst Mum was with me, I wrote a blog for Saga magazine online, and when Mum died, I made it into a book.

158
00:17:27,990 --> 00:17:38,130
This is the book and I've bought a few copies. They're very happy to to sell them to you if you want.

159
00:17:38,130 --> 00:17:48,180
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.

160
00:17:48,180 --> 00:17:59,010
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.

161
00:17:59,010 --> 00:18:01,393
Thank you.