Everyone grieves and deals with bereavement in different ways and most people feel many different emotions at various times and stages, including anger, guilt, sadness and despair. When a death has been sudden and unexpected, feelings of shock, disbelief and sadness can feel overwhelming and it is sometimes hard to imagine ever feeling ‘normal’ again.
Donor families we talked to described how difficult the first few days and months had been as they struggled to make some sort of sense out of the suddenness of their relative’s death. Some talked to those who’d seen their relative just before the emergency situation. Others went back to the hospital to talk to doctors or nurses about how the unexpected illness could have led to their relative’s death. For many, seeing their loved one’s room and belongings was distressing when they came back home from the hospital, often only days after their relative had been admitted.
Eunice said she and her husband went back to work the day after their daughter, Kirstie’s, death because it was the only way they could cope. Jackie (Interview 21) made herself go shopping the next day and face other people because she felt that the longer she left it, the harder it would be. At this very raw time, donor families advised others to take each day at a time and not to be afraid of the different emotions they might feel.
Seeing other people going about their normal life could be difficult, and seeing anyone who vaguely reminded them of their relative heartbreaking. In the early days of bereavement, Liz said she looked at other couples and people older than her husband and it felt very unfair. Those who had lost children said they were sometimes choked with emotion when they saw a child of a similar age to their own or with similar features. Memories came flooding back in and they sometimes found their feelings of grief and sadness difficult to deal with.
Some people described how difficult they’d found life without their relative soon after they’d died and how important it had been to have lots of support when they’d felt shocked, numb, depressed or angry. Everyone in the family dealt with their grief differently but sharing their feelings and stories about their relative had often helped.
Helping children through their grieving was paramount for parents and several advised others to involve children in all important decisions, to be honest with them and answer their questions. A few people had memory boxes in which they encouraged their children to put their loved one’s treasured possessions, letters, photographs and other valuable memories. Some adults also valued having memory boxes for themselves. Several said they would have liked more support, including counselling, for their children (see ‘Support and where to get help’
). Liz (Interview 17) bought a dog for her four children and said it gave them something positive to focus on at a very difficult time.
Some women we talked to said talking about their relative helped them cope but their partner or husband had found it difficult to talk. Jackie’s (Interview 21) husband became depressed and she wished he’d been able to talk to other bereaved men. Haydn coped very much alone. He busied himself with work and getting reports for his son’s inquest.
Some people we interviewed felt that, while more distant friends and family had been able to get on with their lives fairly quickly, their daily lives had changed forever and this was difficult to get used to. They advised friends and relatives to be there for the person, to continue visiting, listening to them and allowing them to cry.
Some of those interviewed had benefitted greatly from talking to people who had been through something similar, often other donor families. Others had sought bereavement counselling because they’d wanted to talk to someone professional and outside the family (see ‘Support and where to get help’
). Many people needed to know that their feelings were normal and counselling helped to reassure them. Mick and Natalie (Interview 30) said that when their son first died, they found themselves doing ‘silly things’ and were very forgetful. Talking to a bereavement counsellor helped them realise that their feelings and reactions were very normal.
With time, many people were able to focus more on the positive times they’d shared with their relative. Thinking about how he or she would have wanted them to live and be happy had helped them start getting on with life again. Knowing that someone else had a better quality of life because of the gift their relative had given also helped, including letters from recipients. Being able to accept the death of the loved one was important and sometimes counselling had helped them reach this point.
Many donor families we talked to said that, although time had helped them to come to terms with life without their relative, it hadn’t been ‘a healer’. The pain would always be there but they had learnt to live a different life. Their relative was and always would be a huge part of their lives. Talking about them and keeping their memory alive was crucial and supportive. Some people became involved in promoting organ donation and this, too, was a positive way of talking about the gift their relative had made.
For most people we interviewed, the anniversary of their relative’s death or special days, such as birthdays, Christmas, Mother’s Day and Father’s Day, were difficult and emotional. Some people did things as a family to celebrate the life of their relative, including letting off balloons. Others visited the cemetery or talked with those closest to them.