|
Felicity describes what happened when her daughter, Alice, first became ill with bipolar disorder.
|
|
|
Fine, Alice Duncan was my oldest child, and she was a very lively, bright, pretty girl. You wouldn’t have imagined her being somebody who would suffer from depression. In her teens she got became quite sort of moody, but we didn’t think this was anything abnormal, and when she was 17 when she was doing her mock A’ levels, she became more difficult, and again we just thought this was you know teenage difficulties. Then one day I was at work and I was phoned by her school and she’d walked out of a mock A’ level exam, in a sort of zombie state. I took her to the doctor who said she mustn’t take any more exams. She was quite clearly suffering from depression. She could hardly speak. We had to look after her at home. She went to the local psychiatric hospital that dealt with under 18’s, as an out patient. Then she became psychotic and she’d just hit 18, which meant that the whole structure had changed. She had to be in the adult hospital and that we found incredibly frustrating and sort of wrong. We’d got this whole set up with the psychiatrist that she trusted and so on. Suddenly, just because she was 18, we had to have a whole new lot of people, and that was something that we always felt very annoyed about. And so there she was. She was in the adult psychiatric hospital, she was on various drugs, she was lying with her face to the wall. But then she seemed to get a bit better and they said that it would be alright if she was discharged. That was on the 31st July, and she came home. |
|
|
|
Felicity and Alex talked to Alice about her bipolar disorder. Alice found it hard to accept that she would have to live with it.
|
|
|
Alex was away for one of those weeks and she talked, we talked a great deal and we talked about her illness. I never talked to her about what it was like to be manic. She never talked to her brothers about it either. I’d assumed she would have done. She was quite private in that way. But she did talk about how dark it felt you know, and how alone she felt in this depression. And she was also very remorseful about what she’d put us through. And of course you couldn’t say, “Oh don’t give it another thought,” because it had torn us all apart, and I had tremendously resented the effect that her illness, her manic illness had on her brothers because it had sort of made their lives so ghastly. But she’d not been remorseful before, and now she was. And I remember her saying, “I wish I could put the clock back”, and I said, “But, but now we know that you have this illness, you have this problem, but we know how to deal with it. And you can lead a normal life. Read your K. Jamieson, you know it is possible to have a really really good life, as long as you can take the medication and can learn to live with it.
Anyway, she decided she wanted to go back to Glasgow and I said “Please don’t, because you know you’re still low.” And she said, “Yes, but I’ll be fine and I’ve got a lot to do, and I promise you I’ll see the psychiatrist right away.” She was a very determined person, she always had been absolutely, had her own very strong will and so she went back, and Alex put her on a train. She said to him on the journey to the train that she was finding it very difficult to come to terms with the fact that this was something that she was going to have to live with for the rest of her life. |
|
|
|
Felicity thinks it was unforgivable that her daughter, Alice, was discharged from psychiatric care without a follow-up appointment.
|
|
|
I’m always very angry with the psychiatrist she had. When she was at [the local town] she was going to see the psychiatrist once a month and she was on pills. The Lithium had never agreed with her, which is what they usually use for people who are bipolar. So she was on something called Sodium Valproate, and that seemed to work. But she was quite over weight, because that’s a sort of bi-product of it. She felt that she wasn’t her lively self. And so she said to the psychiatrist that she would like to go off it. I don’t know what happened in that conversation ‘cos of course I wasn’t there, I wasn’t allowed to be there. But anyway she just came home and said he’s let me go off the pills and he’s discharged me. And I was so, so, so angry with him. Because even if he’d just put it down to a very low dose, or even if she’d insisted on going off it, if he’d not discharged her, she’d have had to see a psychiatrist on a regular basis. It would’ve been, how should I put it? She was allowed to think that she’d recovered for good. And of course with manic depression that very rarely happens, or doesn’t often happen. And so when she went to Glasgow, she didn’t register with the counselling people or with a doctor, and there was no way anybody would know, to look out for her. |
|
|
|
Felicity wrote a tribute to Alice, for the Guardian. If people ask about Alice she refers them to the article. Her article also explains how bipolar disease can affect a family.
|
|
|
I was thinking perhaps I’ll write a little piece for the local paper so her friends know. Alex was away at the time and I was feeling quite low, and I began to write, and once I’d started I couldn’t stop, and I thought this is my opportunity to write my tribute to her, and also to explain about manic depression. Because so few people know. What I didn’t mention was that at her funeral my sister, who’s a doctor, my older sister had said before the funeral, she said, “I would like to speak about Alice and manic depression, at the funeral, and about our mother.” And I said, “I think that’s a wonderful idea,” and [my elder boy] said, “I think that’s a fantastic idea because a lot of my friends they talk about people feeling manically depressed and they haven’t a clue what they’re talking about, whereas if somebody explained”, and so my sister got up and she talked about our mother, and what form her manic depression took, and how she had several times tried to take her life. And then she said, tragically Alice had inherited this genetic illness. It had been very helpful to a lot of people in the congregation, to help them to understand what had been wrong with Alice. And I felt I wanted to put this on paper too, so I wrote this long piece for the Guardian magazine.
It came out at the time of the book, and so there was Alice on the front of the Guardian. And they did it beautifully. I was so grateful to them. It was very important to me. I felt now I would never have to explain again. If people ask me about Alice, I could refer them to the piece.
[holds up pictures]
This is a sweet picture of Alice with me when she was little.
Ah, that’s lovely.
They carried the one beautifully, the one of the leaf. And then there’s pictures of me with my mother, and that one of the leaf you see they used. And people, several people have said that they’ve got it on their wall. And I was showered with letters. It was very gratifying because a lot of them were from people who suffered from manic depression themselves, and what was interesting to me was what a secret illness it is. Because if you have got it and you are coping, you are in work, then you don’t tell people you’ve got it because you don’t want to lose your job. You don’t want to in any way risk things not going right for you. And I had a lot of letters from, and e-mail correspondence with quite a number of people. I got a letter from a professor of psychiatry who said it should be obliged reading to all students of psychiatry because it explained the effect of manic depression on a family. I also got a letter, which was the most important one of all, from a man called Alan Ogilvie who’s a psychiatrist specialising in bipolar disorder. He said he felt that my article was the best thing he’d ever read about the effect of bipolar on a family, and he was just starting up this NGO charity to do research into bipolar disorder and to de-stigmatise it, and he wondered if I’d like to be involved. And so I’ve become very heavily involved with that and I’ve become a trustee and I have raised some money for them. He’s become a very good friend, and it’s been very important to me to feel that I can use my experience in this way, and I think he finds it a help. |
|
|
|
Felicity chose ‘Dido’s Lament’, Henry Purcell’s aria from the opera Dido and Aeneas at her daughter’s funeral because Alice’s death was such a tragedy.
|
|
|
We then went to the morgue and I remember waiting there, sitting in this waiting room, and suddenly our eldest boy said, out of the blue, “I don’t want her cremated.” And I said “Yes, nor do I, I want her to lie in the churchyard, which is just down the road from our house, and which is on the way to her favourite place which is called White Bridge where she used to go on her walks. And so, when we got back we got onto the local priest and we have a wonderful neighbour, who is a conductor, and Alice was a babysitter to his boy. He came in and he said, “What can I do? I mean I can play, would you like me to play? For her funeral.” And I said, “Oh that would be completely wonderful.” And I said, “I would, I’d like to have Dido’s Lament and he looked really shocked. He said, “But you can’t, it’s the most tragic piece in opera,” and I said, “Well this is the most tragic thing that has happened to me.” And then I remember he came back the next day and said, “I’ve been thinking about Dido, and I think if I got a really true voice that wasn’t operatic, then it could, it could work, it could work.” And of course in fact, Alice had been to see Dido and Aeneus that week, during that fortnight that she was back, when she was feeling low, she’d gone with her cousin, and had come back really very stimulated and said how wonderful it was. So it was appropriate. And so I feel really lucky that we had this wonderful man in charge of the music, and we gave her a really beautiful funeral. Our church holds 400 and it was standing room only. |
|
|
|
Alice was buried in the West Indian manner, where everybody stands around the grave and sings. Felicity, her mother, found it very moving.
|
|
|
The only funeral that my sons had ever been to was that of my sister, who was a priest in Birmingham, and who’d died of cancer. Most of her congregation was from Barbados, and so she was buried in the West Indian manner, where everybody stands around the grave and sings. And so that’s what my boys assumed you always did at a funeral. And so we asked the undertaker and luckily the undertaker had spent some time in Barbados and knew of this tradition, and said it was unusual in England but he was perfectly happy to arrange that, and my brother in law, who’s a priest, and was used to this kind of ceremony, he officiated that part of the service. So when the coffin went out of the church we all followed out into the graveyard, all 400 plus of us, and her cousin, who’s got a beautiful voice, was in charge of the singing. She had got Alice’s old friends from her choir at school too, because Alice sang beautifully, they led this unaccompanied singing and we all sang the hymns round the grave while Alex and the boys filled it in. Then other people, cousins and friends all started picking up the spade filling in the grave while we sang and it was a very moving thing, which people seemed to find quite cathartic, to be able to do this. |
|
|
|
The Cruse counsellor was a great source of support. Felicity saw her regularly for about a year after Alice died and she became a real friend.
|
|
|
My GP said, “I’m not going to give you any medication because that’ll only delay what’s got to happen anyway, because, it’s a stage that will go on and you’ve got to live with it.” But he said he could put me in touch with a bereavement counsellor and he recommended Cruse, which is a bereavement counselling organisation. And so I rang up Cruse, left a message, then they rang me back and they said they had a waiting list, but they would be able to see me within the month. I was really sort of horrified because I wanted to see somebody now. And they said they could put me in touch with SOBS, and that’s an acronym for something for people bereaved by suicide. You sit round in a group and talk. I was absolutely appalled by the idea of sitting around in a group with other people who had been bereaved by suicide. I just couldn’t imagine doing that, so I said no thank you, I don’t want to do that, that I would wait. But luckily I got called back, within ten days by somebody.
It turned out she [the counsellor] had been a dancer with the Ballet Rambert and I’m passionate about ballet, and so that gave us a lovely link and I remember for her 70th birthday I gave her the Fontaine biography. And when finally after a year we stopped I took her as a thank you to Convent Garden with my sister. The nice thing about a relationship with a bereavement counsellor is that you can ring them up again afterwards. She really became a friend. And she had a memory like an elephant; it was extraordinary, she would always remember. I don’t know whether she took notes after our meetings or not, but she would remember exactly what we’d talked about the week before. And if you think about how many people she was seeing, I thought she was magic, and I was really really lucky, to have her. I still call her occasionally.
Your friends are wonderful but you can’t go on and on to them, and in fact I used to find that if I was seeing my friends I wanted to be cheerful with them. Seeing my friends perked me up, I didn’t want to unload on them. And yet it was terribly important for me to unload.
So you’d recommend to anybody in your situation to contact Cruse?
Yes, or, or a bereavement counsellor. There are other organisations I’m sure, but she, she was really wonderful…
Had she had any particular training do you think?
Oh yes, I know they do, they give you a training, Cruse. She had retired early and done this training, and said she found it the most satisfactory of all the work she’d done, because she really felt that she could help people. And she clearly had a great talent for it.
|
|
|
|
Christmas without Alice was hard for the family. Felicity filled the house with flowers and candles and during the meal they talked especially about Alice.
|
|
|
So that was the funeral. It was December 10th, and so we were then faced with Christmas. What do you do? And I said, what was, what was important? We all felt all the time that it was important that we consult with each other about what was appropriate. And certainly we consulted with the boys all the time because they had very strong views about what was right for Alice, and what wasn’t. And I didn’t want to get it wrong. I said “What do we do about Christmas?” And Alex said, “Well no decorations, no tree. But as it kind of came closer I, I felt we couldn’t just do nothing, I said “We’re allowed to have food?” Oh yes that was alright. And then I went round to a friend’s house and they were having a party and they were doing nothing but candles, I thought, “That’s it!” So we filled the house with flowers and candles.
We often have strangers to stay at Christmas, as well as the family, that we have this tradition that at a certain point we go round the table and we toast to absent friends, which we did and, and of course we especially talked about Alice then. |
