The mourning after

The mourning after

Bereavement is a universal experience, but also a deeply personal one. Some find talking about their grief helps, others try to keep busy and carry on as best as they can. Anne Dempsey meets four people touched by death, who coped with or counsel in its aftermath in different ways.

Jane McKenna: 'It matters to us that something good and enduring will happen as a result of our girls' lives'

A poem written by Jane McKenna's daughter Lynn, before she died in 2001

Psychologist Dr Susan Delaney

Noeleen Perle: 'I was completely dazed... Looking back, I think I let in only what I was able to let in'

Tom Inglis: 'Grieving people find it very difficult to engage in standard forms of greeting and conversation'

Bereavement Pin

How to live your life after the death of someone very close is one of the greatest challenges anyone will have to face. In spite of the fact that death is all around us – and that in the time you take to read this article, people will have died changing many lives around them forever – death remains extraordinary to those it leaves behind, and somewhat unknown to those who have not yet been personally touched by it.

What helps at this time? In the past, societal acknowledgment of the significance of death had an outward sign. People wore black, women eschewed bright jewellery in favour of jet black. This month, recognising that a visual symbol of loss can be helpful, the Irish Hospice Foundation (IHF) launches a bereavement pin.

Designed by jeweller Alan Ardiff, the small circular black-and-silver piece symbolises the circle of life. Its silver heart encircled by 12 silver dots represents our connections with those we love and the supportive role of time, family, friends and community.

Thirty thousand people are newly bereaved in Ireland every year and for each one, 10 others close to them are affected.

Psychologist Dr Susan Delaney IHF's bereavement services manager

'Bereavement is so extraordinary. You get catapulted into a foreign country where there are no signposts. People can be very surprised at how death affects them, and they say to me, 'Why does nobody tell you?', rather like what women say after having a baby. It's very hidden. Then there's the isolation. You're sitting on a bus, and nobody knows what has happened to you, like a dirty secret.

"Grief is exhausting. It takes up so much time in your body and your head. I say to people, 'Expect to feel exhausted and expect your concentration to be shot.' People forget conversations, they forget what they are doing. So we can talk about sadness but an equally frequent emotion is irritability due to trying to hold it all together. Grief is a full-time job on top of a full-time job.

"The word 'bereaved' is linked in meaning with the word 'robbed', which seems to fit as death usually takes something from us that we did not give willingly. "Death is not always a surprise, but it is always a shock. Everything changes. Everything you thought you knew and believed in can be up for grabs.

"Losing someone close can also place you in an unhelpful spotlight. People ask you how you are, often trying to sit grief into the model we use for flu. So the expectation is you begin being a little sick and then you get worse, and then you begin to get better. Grief isn't like that. It flip flops, one day you're fine the next you're anything but, but the expectation is that it's something you get 'better' from.

"Part of grieving is to put one foot in front of the other, over and over again. People deal with death as they deal with life. Some will want to talk out their feelings, others like to keep busy and get on with it. Those who seek out a quiet time to be with themselves probably find they get to existential questions about meaning and what is the point of it all.

"I think one of the things that helps when you lose someone very close is having access to some information so you know that while grief is individual, there is a road map. Expect it to affect you physically, emotionally, spiritually, sexually.

"I don't think there is adequate information about bereavement. We have recently produced a series of 12 leaflets about understanding grief – simple, easily read. Most people go for help to their natural network – family, friends, colleagues. Who is the pal you can call in the middle of the night to cry with? Who is the practical friend to help out when the fuse has blown? Who will distract you and take you out for a jar? It's a question of finding the right job for the right person.

"Good support groups will also help. There are some useful books. Above all, I would say be kind and gentle with yourself. If you had broken your leg, you wouldn't be out running a marathon. Don't allow others to put pressure on you to be a certain way."

Jane McKenna Lost two daughters

'Our youngest daughter Laura died unexpectedly in 1999 at age four when undergoing heart surgery. Our elder daughter Lynn died two years later at 15 having put up a brave fight against leukaemia.

"I spent about 18 months surviving our children's death. Then the idea of a child hospice came from somewhere as a thought. With my husband, Brendan, we set up the Laura Lynn Children's Hospice Fund and have been campaigning ever since for a children's hospice in Ireland.

"We have raised €4.5m and merged with the Children's Sunshine Home, which provides home support and respite services. Laura Lynn House, an eight-bed facility with family apartments, is due to open this year. It's hugely about respite, not only for the child but for the family too. It's to give parents and carers of children who are very ill the night's sleep we all take for granted, giving them some choices, a holiday, a couple of breaks per year, as well as palliative care for children near the end of life.

"I'm an optimistic person. I believe in the glass half full. I have amazed myself at what I've done in the last few years. Standing up talking to people, I would be shaking. I've become more confident over the years and people have been amazingly generous and kind.

"Children's hospice is a wonderful thing. It's about putting life into a child's day, not days into a child's life. It is also in memory of our girls. It matters to us that something good and enduring will happen as a result of their lives. If the idea of the hospice hadn't come, I hope I'd be doing some good. You have two choices. You either survive or you don't. If you're alive and have your health, well then you've no alternative but to live as well as you can."

Noeleen Perle Lost her husband

'Christy and I were married 52 years when he died very unexpectedly in January last year. He had health problems, but there was no notion that anything would happen. We were together as usual that night. Christy went up to bed, and when I came up, he was still awake and his eyes followed me as I tidied the room. Then he seemed to sigh and turn over. He died in his sleep that night.

"I was completely dazed. Everything seemed unreal. Looking back, I think I let in only what I was able to let in. At times I still can't believe it. I look out the kitchen window and expect to see Christy coming up the path with fuel, coming in saying, 'Now we're all right for tonight.'

"Christy was a very quiet person, but 20 years ago we both joined the Summerhill Active Retirement Association which had just started. It's now the Third Age Foundation. Christy began to have a wonderful retirement. We discovered he had a great talent for drama, and for such a quiet man, he loved being on the stage.

"We also trained as volunteers with Senior Help Line, a listening service for older people by older people. It was good being volunteers together. Christy would come home from his rota and I would have the fire going, a glass of whiskey on the hearth, the two armchairs on either side, and we would talk about how he got on.

"We had eight children with seven still living. Having the family near, knowing we are close is a great comfort. I see them all constantly.

"Many people find tears are helpful but I don't. I don't like to cry. It just upsets me. I prefer to keep busy, to keep going, to look out instead of in, and to ask God's help each day."

tOM iNGLIS lOST HIS SON AND WIFE

'Our second child Luke died tragically in an accident. When a child dies it tends to either bring a couple closer together or drives them apart. Fortunately it brought Aileen [MacKeogh, an artist] and I closer together because we were able to talk about it. Grief is an opportunity to recreate your life.

"As well as supporting each other, each of us did what helped us individually. Aileen did a series of drawings of sculptures based around the contradiction of home being the solid castle and at the same time how vulnerable it was to tragedy. I wrote about Luke's death. I wanted to have a record of exactly what happened in years to come. The coroner's verdict hearing recorded only the facts and left out all the emotion. I wanted to shout out that you have not in any way acknowledged this huge trauma in our lives. There was no counselling at all at that time.

"Aileen died three years ago from breast cancer aged 52. We met when she was 16 and I was 18, and our lives were completely entwined. She was the love of my life. After death, you are still bonded. But you've got to try to straighten up and live your own life. I'm writing about Aileen now and in doing so I'm effectively burying her and giving the burden to others to share.

"Death is the biggest thing that happens in our lives. It comes and takes our loved ones away. It tears us apart emotionally. The feeling of loss is enormous. The pain is intense. Like all pain, grief is a deeply personal experience. Nobody else really knows how much you are suffering.

"The grief pin is important to me as it invites people to talk in a different way about what happens in everyday life. Grieving people find it very difficult to engage in standard forms of greeting and conversation. Our hearts are broken. We want to scream at the world: don't you realise that we are struggling right now to find some meaning in our lives?

"I am not suggesting that we return to the culture of death that existed in the past, when there were strict rules and regulations. We have moved, quite rightly, from a culture of death to a culture of life. But a culture of life that ignores death is deadly. We cannot live rich, meaningful lives unless we embrace death.

"A grief pin may not only be a sign to relate gently to those who are sad. It may be an encouragement to talk to each other about our feelings and emotions, an essential ingredient in slowing down and taking time to care and love."

bEREAVEMENT pIN

The IHF will distribute the Bereavement Pin, free of charge, to hospices and bereavement groups countrywide. It will also be available to the public from the IHF and the Kilkenny shop in Dublin's Nassau Street at a cost of €20.

The IHF is inviting the public to take part in a Forum on End of Life in Ireland by making submissions as individuals, groups or organisations. This National Conversation will take place during 2009. Information on submissions on www.hospice-foundation.ie. Submissions can be emailed to submissions@endoflife.ie or posted to Paul Murray, the Irish Hospice Foundation, 32 Nassau Street, Dublin 2. Telephone 01-6793188.

Newly published leaflets on grief (titles include 'The grieving family', 'When someone you care about is bereaved' and'Understanding grief') are available from the above address.

March 29, 2009