During interviews people spoke candidly about their own mortality; how they felt about dying, what their wishes were and who they spoke to about them. They also talked about losing loved ones, the grief they experienced and the strategies they used to cope.
Because death is inevitable it was accepted by many participants as a natural part of the life course. People with religious or other spiritual beliefs spoke about their lack of fear and their curiosity or faith about what awaits them after death, such as being reunited with their spouse who had already died. Several people, whether they identified as religious or not, said they were ready to die, that they were happy to leave this planet but would prefer a quick and painless death.
Sabihe is not scared of death and believes there is something to follow this life. When she is sad she sometimes talks to her mother and husband who have passed away and they comfort her.
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And I sometimes think ‘I won’t be here when my grandchildren get older, get married, whatever’. It doesn’t make me sad, but one day I’m not going to be here. But what is waiting for me, I don’t know. Through religion I’ve learned that the other world – we’ll be going through many other worlds – and there’s a spiritual world, because the body rots in the box. So I’m not scared, because I know definitely – even if it wasn’t religion teaching me that – I think it’s so senseless to come here, live here, do all the damn things we do and then leave it. There must be something to follow; there has to be. So in a way I’m looking forward to finding what it is. But I’ve had some very, very vivid dreams that also makes me believe in what I believe because we’re also, through my religion, told that. You know how they say the eyes are the window to the soul, that’s very true because I used to just look up to the sky when I was sad and crying and talk to my mum, and then later on to my husband, my father even, and sometimes I have had very vivid dreams after that, and then I learned that in the religion they say do that, which is amazing I knew before anybody told me. I’ve had a lot of encounters with my mum, my husband, and they come to comfort you, and it works.
For
Guymun getting older means getting closer to death. She is not afraid of dying and believes she will meet all the people she knows in Heaven.
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What are the best things about getting older?
Guymun (translation): Dying [laughs]
Translator: What’s good about being older?
Guymun (translation): Because we are going to die
Translator: Getting to, closer to dying.
So dying doesn’t worry you? It’s not a scary thing?
Guymun (translation): Bayngu [nothing], yaka [no] caring. Manymak [good], I walk my home at the heaven. Good, idea.
Translation: It is good to die. Do you think it is not good to die?
Guymun (translation): Now [if] I’m sick. All you families, come and gather around me (this is what happens when people are going to die. They call all the family members) Come and sit and watch me die. Watch the time, waiting and watching for that time to come.
Guymun (translation): Peaceful. Looking my spirit, ah lovely spirit, goodbye. My life. I have already met in the heaven.
Translation: They are looking at my spirit. They are saying that my spirit is lovely. When we get old we have a lovely spirit. I will meet people that I already know in the heaven.
Tonia and Michael say they are sick of living, but they stay on because they are needed to pray for their children. They rely on God to decide when it is time to die.
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Michael: We are sick of living. Life is hard for us at this age. It’s not like we are going to kill ourselves. Nowadays, they can kill [euthanize] you, if you want to. But we are not going to do this. Praise the Lord! We are totally relying on the Lord.
Tonia: Yes, we would like that the Lord takes us from here already, but it’s not time yet. Our children say that “You stay for the sake of prayers. So, stay alive.”
Michael: Yes, our children often ask us to pray for them. They have a problem, and they ask us to pray for them.
Although religious faith was associated with acceptance of death, people without strong spiritual beliefs also tended not to have a fear of dying. Some people said they became more aware of death as they grew older, but only Gil said he thinks about it a lot. For a few participants, the prospect of their own death was problematic because they have so much more they want to do and realise they do not have enough time to achieve all their goals.
Fred explains that he does not have the same fear of death now he is older.
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I accepted that my friends were going to die, like I accept that I’m going to. It’s, you’ve got a whole – I don’t know whether you want to philosophise on the outlook on death, but [laughs] when you get old, it’s not the same fear as it used to be.
What makes that come about?
Well I think the realisation it’s inevitable [laughs]. You can worry and do what you like, but there’s nothing you can do about it. I don’t know, you’re just not frightened of it anymore.
While he knows death is inevitable,
Jack was the only participant to allude to death being scary.
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Well it’s never worried me, I mean you worry about illness I don’t say I don’t, hang on. I worry about illnesses, everybody worries about that, I’ll say that nobody wants to die. So you think of that occasionally but most of the time I don’t worry because I know what’s going to happen in the end, because they’ve already told me that. What I’ve got is going to kill me one way or another, and the same thing most of the family died of too. See there was 13 of us, there’s five of us left, and they’ve all died of lung, heart or kidney troubles. So more or less runs in the family.
So have you thought about dying and what that would mean?
Well nobody wants to die and I suppose I’m as scared as anybody else. But I know it’s going to happen to me, because even if they do this, I’ve still got gallstones that are sitting in the bladder and they can’t do that operation.
A former fundamentalist Christian,
Gil now rejects the Christian faith. He admits that he thinks about death a lot these days and describes what he believes will happen to his soul after he dies.
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Because I, having been a fundamentalist, bible-bashing Christian, who would talk about being saved and born again, and – my attitudes and values, spiritually, are totally different. I no longer want anything to do with Christian when I leave this planet, when I die – if a nice word – and I do not want to be resurrected as the church is saying, and meet up with people in heaven that I don’t want to meet up again with. I don’t want that experience or resurrection. I want to leave this planet, and I’m comfortable at the moment with my own beliefs now and talking about my God, who may not be the same God as the God that sent Jesus Christ onto the earth, but my God who is my creator, maker, gave me the personality I have now and the sense of humour and allowed me to get through my early childhood experiences.
When my time does come, my death – which I think about a lot now – it will be the leaving of my very breath, my essence, my spirit, my soul, anything you can call me, will whoosh out into the nether and on a star up there I will hang, and when [my partner] or when someone’s cooking their barbeque or something and turning the sausage over they’ll look up and say “oh, I can see Gil up there” [laughs], and I will twinkle.
It was common for people to talk to their children about what they want to have happen when they die. People also spoke about the subject of death with their spouse or partner, however, a few participants said they have not discussed what would happen if one of them died. The two most common topics people discussed with their family about their own death were organ donation and their wishes around end-of-life care (also known as advance care planning). Everyone who spoke about end-of-life care wanted ‘no heroic measures’ to be taken to resuscitate them. Some statements illustrating why people felt strongly about this were “I don’t want to be like a vegetable”, “let me go with dignity”, and “I want quality of life, not quantity”.
With a new bill being introduced in the Northern Territory,
Austin explains ‘Enduring Power of Attorney’ and that he and Val do not want any heroic measures taken to keep them alive.
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Val: Well we have discussed, Austin [my husband] in the Law Reform Commission have now suggested to the government that they introduce a new bill which every other state has but we don’t. Now if you could explain that bill Austin.
Austin: I’m sure [your father-in-law] has explained it. Enduring Power of Attorney, it’s just that if you become ill to the point where you can’t make your own decisions, you appoint somebody who can make them for you and that is where you, in my case and in Val’s [my wife’s] case, we don’t want heroic measures, we don’t want people pumping things in to us for months or weeks and we being utterly useless, so I can instruct my son or daughter to make the decisions for me and they will say “No heroic measures, let him go”.
Val: Which that instruction overrides the doctors.
Austin: Yes, otherwise the doctor has to keep you alive because otherwise he’ll be charged with neglecting you if he doesn’t, even though he can see you’re in a horribly unpleasant painful position, he can’t do anything to knock you out and he must keep you alive, so it’s ridiculous and this is wonderful.
Val: Well you see, the [Northern] Territory didn’t have that law, hasn’t got that law yet but the Attorney has promised that it will probably go through in September.
Austin: It comes in September, yes, I’m happy to say.
Val: So that we have discussed this problem between us and we know what we want, we don’t want to be kept alive.
Austin: We don’t want to be on a life-support system for weeks, ridiculous.
Even though it is against his traditional Ethiopian beliefs,
Ato Addis would like his organs donated after he dies.
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So a [organ] donation is very important, very important. We Ethiopians we don’t understand that much because we want to take everything with us because on the second coming we are going to rise up, with our kidneys, with our heart and things. We’ve got that idea. Like we are going to get up, we are going to see my uncle and my aunty and my grandmother, and we are going to go together and see each other. It’s just we don’t have the understanding of what we are as human beings. It’s just, that’s why we absolutely have to donate our organs, which is very important. I myself – although I should have a card, I don’t mind donating everything, if I could help someone else because it’s no good for me, but it would help someone else.
Assisted suicide or euthanasia was a topic people felt strongly about. People who believed euthanasia should be available wanted to be able to die on their own terms and not left to suffer a long and painful death. Those who were against euthanasia pointed out that it was open to being misused or that we should let nature take its course. Two participants knew people who had died by assisted suicide. Dorothy outlines the debates surrounding euthanasia, which is one of the topics debated in her weekly discussion group.
Dorothy explains that having access to euthanasia would take away the worry about becoming a burden on her family if she were to become very ill.
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I’ve got one friend who is totally deaf, completely blind, and she suffers terribly because there’s really nothing she can do. She can’t listen to talking books, she can’t see to knit, she’s only recently [coughs] – pardon me – gone to more care, because she had a fall. Now she says “why can’t I die? I’m not enjoying my life. Who do people object to voluntary euthanasia?” Well just for the record, I’m a life member of voluntary euthanasia.
So a group of us who have afternoon tea once a week say “why can’t we say ‘right-o, I’ve had enough of this, I don’t enjoy my life – right-o doctor, on Thursday we’ll have a wake, and on Friday I’ll have the needle please’, and you go to sleep knowing that you’re not going to wake up”, and to quite a few of us that would be wonderful. It would take away the worry of wondering what sort of a burden you were going to become if you become ill, the worry it’s going to create for your family. But we understand how it could be misused.
And I’ve made what arrangements I can with my children and the solicitor that there is to be no heroic measures taken, so you hope that if you have a stroke and wake up a vegetable, you don’t want to be kept alive. It’s a very provocative subject, and you can get into an awful lot of trouble talking about it to mostly very religious people, who feel that it is God’s will if you live or die. Well I think God has got more important things to worry about.
When thinking about their own funeral people tended to express their general preferences rather than have any type of plan. For example, whether they wanted to be cremated or buried, where they wanted to be buried or where they wanted their ashes scattered. There were some people who did not like to think about funerals at all and would rather focus on being alive. In a similar sense, funeral plans were seen as a waste of money. At the other end of the spectrum, Gil was thinking about writing his own eulogy.
Lan would like to be cremated and have her ashes scattered in the sea. Because her family live overseas she would rather see them while she is alive than go to their funeral.
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As my sisters say we see each other when we are alive, but don’t come to funerals, it’s too far, there’s no point. That’s how we think, other people might think differently. We see each other now when we are alive, we spend time together, so I try to go home like as much as I can, but if we are gone we’re gone, there’s no need to spend money going doing things. I don’t know people think we are mad.
I think it’s very sane, I think it’s a really good way to look at it.
Isn’t it and we believe in cremation and dust to dust that’s it, there’s no need to have a plot anywhere that your descendants would have to go and talk to you. Your sons and daughters might go, but after that we don’t want to put your grandchildren in such a position that they feel guilty if they don’t go. If they think of you that’s good, if they don’t, carry on with life. That’s what life is. Isn’t it, one generation after another, you are gone, let them take your place, that’s it, that’s how we think.
Gil has started to think about what type of funeral he wants. He would like to write his own eulogy because he wants people to know his whole history.
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But I do know that one day I will go, and I’ve got to think about it and really say “look, I do want Dancing Queen played, I would like yellow to be a bright colour”, and have some say and – because I know I’m going to go, so I may as well have a bit of input, and I don’t want to be. You know, I want to be buried or cremated and where and how, because I should think about it and maybe put some pen to paper and make a few arrangements. I don’t know.
So have you started that process of documenting these things or are they just thoughts at the moment?
They are thoughts, because I’ve just never bothered to do it, and only today as I was driving to school I thought ‘Look, I’m going to start writing my own two or three page eulogy and talk about where I was born and my Christian experience and my gay experience and my teaching experience’, because only my family would know that, I suppose about, and lots of people that you meet over the years would say “oh I never knew he was a strong Christian” and “I never knew he -” I certainly want to make it clear to everybody that he was a gay, a gay man, with gay activities and the choir and – ” Yeah, so I want my history and my legacy to be -” And I know my legacy still lives on with the thousands of children that I’ve taught.
There was a sense amongst participants that funerals should be a celebration of a person’s life. Ato Addis contrasts this with Ethiopian funerals which are more about mourning.
Although
Sabihe was sad after losing her husband, she was glad that his funeral was a happy occasion and she hopes hers is the same.
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We respect the dead, say prayers for them, and one of the things that people came to me after my husband died and told me – we had a funeral very – we played, he was crazy about Neil Diamond, so we played Neil Diamond, and on the grave he also loved Edith Piaf – we played Regrette Rien, you know, no regrets for him, and we told jokes and – it wasn’t a funeral, it was a real party, and all of us gave a talk, and in my talk I said “what I’d like you all to do -” there were many, many people there because he was very popular – I said “what I’d like you all to do is if every one of you said a prayer for him, all he took with him was a suitcase that he’s going to put all these prayers in, so if every one of you said a prayer for him they will all go in that suitcase and that’s all he’s taking with him”. And they all came to me and said “what a fantastic thing to be said”. We told Leunig jokes and – So I hope my kids do that for me too, because it should be a happy occasion, not a sad one. Although it was making me sad, losing him, but – he was too young to go.
Ato Addis likes the way Australians tend to celebrate life at a funeral.
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The white man’s way of, how they approach the services, the funeral service and things. It’s almost like us [Ethiopians], where you’ve really, we don’t celebrate the life of a person. We are missing him and we want, that’s what, we are crying and crying and we want to see him. We wouldn’t have his friendship, his love, we are missing that. But with the Australian way of life it’s a life that’s been lived that’s being celebrated. And I really think that’s a very good way.
The death of a parent, spouse or friend made people more aware of growing older and their own mortality. Many participants spoke about their friends dying and how sad it was, especially losing their close friends. They also spoke about their diminishing network of friends and that it was harder to form new friendships as they aged. There was, however, a certain level of acceptance that their friends would die and an acknowledgement that “life goes on”. Having family to rely on was therefore important (see Family relationships).
The death of her parents made
Kaye reflect on her own mortality and what more she could have done with her life.
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Obviously the death of your parents is not good. That’s a very big thing. That makes you realise- I suppose your realise your mortality then because when your parents are alive you’re not the full stop. But once your parents pass you’re the full stop and you realise that this is your life. Up to that point you live life and you enjoy it and then when that happens you then think- Well I did anyway. I thought a lot more about what I had done with my life. What I could have done with my life. Possibly some regrets because I didn’t do more. Academically I mean because I think I was quite capable, but I was a bit lazy.
Richard has suffered from depression in the last few years which was brought on by losing loved ones.
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I think I’ve suffered more from depression in the last couple of years, and I think that’s a concern about mortality, I think. You know you get a bit concerned when you see your peers dropping off. We lost our son last year which is really confronting. So you know, they’ve gone but I’m still here.
Well I suppose the loss of our son last year, probably that’s been the most depressive thing that’s happened probably to both of us in the last year or so.
How do you deal with that?
Not well, no we’ve got the grandchildren I suppose, it gives a focus.
Many of
Dorothy’s friends are dying and she is aware of becoming socially isolated. She is grateful to have family she can phone at any time.
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Oh well I play snooker twice a week, and there’s only two of us left. When we started 20-odd years ago there were six. Now one by one they have died, so [my friend] and I watch each other and say “make sure you don’t get sick”, because you can’t play snooker by yourself [laughs]. And I used to have a lot of peripheral friends, when I used to go on trips, but as that wave are dying out, new ones are coming in, which is quite normal, and I just can’t be bothered remembering their names and think ‘oh it’s just not worth it’. Now I understand what’s happening, that I’m becoming a bit isolated, but I’m quite content with the way I am with the family. I know they’re there. No way would I become dependent, but I know they’re there and I can ring them up any time and talk to them.
While having friends die was sad but inevitable, losing a child was devastating. Participants who had lost one of their children found it “confronting”, that they “can’t come to terms with it” and “it’s always there”. In the past five years Dot’s husband and two daughters have died. She says it is something you never recover from.
After
Dot’s husband and two daughters passed away she is grateful to still have her son and his partner.
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I knew my husband and I knew he was dying and so we valued every day. However, it was shortly after was followed by the death of our number two daughter and that was a bit of a blow, but we had a year trying to keep her alive. Then the biggest blow was number one daughter died quite quickly and without much time to deal with the situation. So in just over five years, three have departed, so I do very much value my son and his partner.
It’s something you never recover from, it’s there all the time. You just have to take your mind away somewhere else. Even read a book, yes very sad.
Participants who had lost their spouse or partner spoke about how difficult it was to be on their own, particularly in the beginning. It was hard coming home to an empty house, not having anyone to talk to or to check they are okay. Some people felt angry at their spouse for not being there when they needed them. People who had socialised as a couple found their social circle diminished, which left them even more isolated (see Social isolation).
Sabihe went through all the stages of grief when her husband died. She was glad she had her children with her so she did not have to grieve alone.
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Then again, having been a nurse – he [my husband] had two congenital problems that were under control – his heart and his blood – so it wasn’t total shock when he got cancer, and was given only a few months. He had liver cancer. So I still – you go through all the emotions of sadness. I’m not a person who ever says “why me?” I always say “why not me?” I’m strong, I’ve been a nurse, I know I can cope. Why not me? So that never, ever came into my head, why did it happen to me? It happened to me, it’s happened. But I go through anger, I still sometimes cry and swear at him, swear at whoever runs this world, and I miss him. So you go through different emotions, and then you go back again, start from loss, grief. But then, you know, it only comes and goes. Things like the children are, my children are amazing, they’re awesome kids. My daughter arrange – because it’s about – when he died was 15th of January, so she organized, we all went to her house, we had something to eat and a plate of sort of – he was very, he loved Leunig, you know the cartoonist? So we played a lot of his jokes on the television, with all these new gadgets, and then we said some prayers and then we went to dinner. So not being on my own at times like that, it’s a great help. It’s only when you’re left to grieve on your own, that’s when it becomes a problem. But that night, we celebrated. Okay, he’s gone, we miss him, but we have each other. So that was an amazing thing. I think that’s what happens to older people here: they don’t have that support, that human touch, they’re left – once their husband die – they’re left, their children don’t give a damn.
When his wife died
Brian E found it hard to come home to an empty house.
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Yeah, pretty hard actually it was [when my wife died]. I went into not depression but repercussions and I think that comes up in a few interviews – why didn’t I do this? And, you know, I made mistakes and all those sorts of things. So they always come through and I think it does with probably thousands of other people too. It’s not a place to go. It was difficult in the fact that – well as a lot of people point out, they’re lonely. It’s great – you know, go down to the shops – not great, but I mean it’s normal. That whether their partner is there or not, they’re going down to the shops to do their shopping and go somewhere and whatever, the pictures or something, which I never went to anyhow. But when you come home and you put the key in the lock – and I remember this vividly – you put the key in the lock and open the door and, “Oh guess who I saw” and then all of a sudden it hits you – there’s nobody sitting in the lounge, you know. It’s difficult. And then when it gets dark time, it’s a difficult time.
Well to tell you the truth, I did hit a very down point when [my wife] passed away, very down. As I said earlier on in the interview, I didn’t go through the part where I spoke to a lot of people and they said they were lonely. I did feel lonely, but I didn’t feel depressed lonely. I mean I think that once you get up in the morning and obviously you’re the only one there and you lock up and turn the lights off and you’re the only one there. But on a day-to-day basis, I didn’t go deep into that. One day I think I must have got rid of everything. I just locked up the house. It was during an afternoon. I shut all the blinds, turned everything off and then cried all night. So really I’m fairly well.
Some participants were the primary carer for their spouse before they died. It was a very difficult time, physically and emotionally. For those who nursed their partner at home, having home care and ambulance transfer services eased the burden during such a difficult time.
Brian X cared for his wife for two and a half years before she died. He had to learn how to run the household and found he automatically stepped up and did what needed to be done.
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It was a very, very traumatic time to lose your partner after 33 years and I nursed her for two and a half years after she had surgery and chemotherapy and radiotherapy.
It was just something that’s, you know, a labour of love to do it. I’d never ironed anything. I must have when I was in the Army years and years ago but I’d never ironed anything. I couldn’t boil water but when you find you’ve got to do all those sort of things for your partner, you step up to the plate and make sure it happens. It’s just something that you do automatically as the partner that’s surviving.
Ron cared for his wife in the years after her stroke. He was with her when she died and describes the sense of relief he had knowing she was not going to suffer anymore.
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I haven’t really thought about it until like, I think it was about somewhere in the period where my wife, who’d had a stroke, which I was always optimistic about, but I very soon found out that she was not going to get better. And then I suddenly remembered I was about four years older than her, and that the possibility was that I could be gone before her. And at that point I was a bit concerned, I actually prayed that she would go before me, otherwise she’d be in a lot more trouble than she was. So I guess that’s about the first time I started thinking about getting older. But I’ve never worried about it. I got through her long period of illness, and very fortunately I was with her as she died, and it was a remarkable experience. But I was so thankful that what I’d hoped had come to pass.
It struck me immediately it happened, as I said I was with her, I wouldn’t have believed it if someone had told me, but there was a sense of relief, and I thought, I don’t believe this. But when you come to think about it, I guess over all those years, you’re on edge trying to do the best you could, and she’s suffering, that it’s a natural feeling, it’s not going to happen anymore, it’s finished. But I was very calm, and not at all – I have never grieved over her because my way of thinking about it was while I feel a bit sad for myself, I’m just happy that she’s away from her suffering. So I have never grieved over her, but I keep in touch every day.
Lorna had a very set routine being a full-time carer for her husband. It took her a long time to adjust to life without him, but having hobbies helped.
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I mean when [my husband] was alive I was his full-time carer for the last three or four years.
This is your husband?
Mmmm, I mean that changed the routine of the day, but I still got up and ran the house like I was running an institution I guess, I used to get up at ten to seven every morning at ten to seven I got out of bed so that I could get my little few things done so that I could get him up and get him showered and get him dressed and fed, so I had to sort of still keep to a routine but it was a different kind of routine. Missed that when he died, I missed the orderliness of that routine every day, it was quite an adjustment, a re-adjustment.
How did you re-adjust?
Well, I had the sewing room and of course I’ve been a member of U3A [University of the Third Age] for 26 years, I still had my choir I went back to that and just got on with it. I had my moments but there you go, we had 57 years, it’s a long time to be with one person and got so used to his ways and his personality, I missed it when it ended, still get a bit emotional when I talk about him, but, yeah, because he’d been in my life from 17, that’s what you did in those days.
People coped with the death of a loved one in a variety of ways. Some examples were joining a bereavement group at church, positive thinking or keeping busy – such as getting back into hobbies, reading, writing or going travelling. People dealt with losing someone in much the same way as they faced their own serious illness (see Health conditions), they tried to find a way to cope, tried not to dwell on it and got on with life as best they could.
Writing about the death of her son and sharing it in her creative writing class was ‘an absolute release’ for
Dorothy.
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Yes. [When I wrote about my son] I made three people in the class weep. One lady cried because she’d had a still birth, and the baby had been removed and she had never held that little baby, and she was crying and crying. I was appalled, and then we found that she said “if Dorothy was brave enough to write about it, I can now talk about it”, because she was not allowed to talk about it by her husband and her family. “I don’t want to talk about that dear – you’re young, you’ll have more.” It’s extraordinary.
What did it mean to you both, Dorothy, being able to write and talk about the loss of your children, at this point in your life?
It’s an absolute release, because the first time I wrote about [my son] it was quite long, and I wrote and wrote and wrote, and then I thought ‘nobody needs to read this – this is too raw.’ So I tore it up. Would you believe that our English friend turned up at the door, and she said “what’s the matter?”, and I said “I’ve just written about [my son] dying and I’ve just torn it all up”, and she said “well do it again, and keep doing it until you feel comfortable exposing yourself by writing what you have to other people”. So I did, and it’s like a burden lifted off your back. You don’t realise – Well I never thought of it as a burden, but being able to share it was huge.
And this was just a few years ago, wasn’t it?
Two. Two and a half years. You never know what’s ahead, it’s amazing.