Caring for someone with a terminal illness

Bereavement and grieving

Carers who have built their daily routines around caring for a patient found that when the patient died they were left with ‘time on their hands’. Susan found she couldn’t get used to having free time after caring for her mother. She decided to make an effort to re-engage with friends and to take up tennis, which she loves but had been unable to do while caring for her mother. Janet worked freelance from home and found it difficult not having a set structure to her day; she found it depressing being at home alone and had to make a point of calling friends and finding tasks to occupy her. Carers spoke of missing the regular visits of the nurses and others who helped them care for the patient. Jacqui commented that suddenly there were no medical machines making a noise in the home.
 
People experienced the grief of their loss in many ways. Lynne recalled how when her mother was alive she always told her to ‘stop crying’, so since her mother’s death Lynne has done her grieving in private. Mary described the pain of losing her husband as like someone kept sticking a knife in her back and the pain would not go away. John (Interview 10) recalled that when his wife died he cried more than he had ever done.
 
Many carers spoke of their on-going grief. Dick found that the solitude of being out on his motorbike was useful; he could get angry or upset and ‘rant’ inside his helmet and no-one would know. For Heather there is a comfort in continuing to live in the home she shared with her husband, but Mary found it extremely difficult to manage the household as her husband had always taken care of that. Although Roger (Interview 30) is aware that he has to face many different emotional hurdles since his wife died, such as birthdays, Christmas and the anniversary of her death, sometimes there are things that catch him unawares, like her scent on clothing in the wardrobe. John (Interview 12) finds every time something nice happens he is aware that his son Tim is not there to enjoy it with the family.
Carers can experience loneliness after the death. Sue and the family phone her mum every day as she gets lonely, especially at the weekend, but Sue recognises that the family must try to get on with their lives.
Some carers viewed the patient’s death as a release from their disease. Despite a terrible feeling of loss, Cassie remembers a sense of relief that her dad was no longer in pain. Ruth feels she did a lot of her grieving while her mother was dying with stomach cancer.
 
For carers who are currently caring for a patient with a terminal disease, there can be a sense of grief as they look to a future without their loved one. Una described several ‘mini-bereavements’ as her husband’s health started to decline, and a sadness that he cannot be part of the family’s plans for the future.
 
Counselling proved helpful to many carers, offering emotional support and practical advice. Mary found counselling helped her prepare for her husband’s death and be strong. Hospices have a bereavement service and John (Interview 10) and his family were contacted by the service after his wife’s death; he found the counselling very helpful as he was able to express his feelings. David (Interview 35) also found counselling helped him, simply by ‘touching base’ and talking to someone with experience in bereavement. Counselling helped Emma cope with her distress at not being present at the moment of her mother’s death. Heather had counselling six months after her husband died; she found it useful just to talk to someone. Roger (Interview 30) had done a brief counselling course himself and feels that confronting his feelings by talking about his wife helps him to cope and to keep her memory alive.
 
Maggie went for three counselling sessions at the local hospice after her husband died, but found the style of counselling unhelpful; she plans to contact her own doctor if she wants further counselling later on. Although Roger (Interview 32) feels bereavement support is a wonderful service, and he went to two counselling sessions, he didn’t feel he was benefitting. Lynne was unable to go to counselling at the hospice as they only offered sessions during normal working hours and she could not afford to take the time off work. Jacqui did not take up the offer of bereavement counselling as she has no regrets about her life with her husband, and she sees grieving as a process she has to go through.
Many carers talked of how friends supported them in their time of grief. Although David (Interview 08)’s mother received a phone call from the Macmillan nurse after his father’s death, most of the support for his mother came from the family. Dick’s friends all rallied round after his wife’s death. One friend in particular rang Dick every night and visited regularly, allowing him to talk as much as he wanted. Jacqui’s daughters took her away just after her husband’s death. Heather took up swimming when her husband was ill and the new friends she made have been a lifeline since his death.
 
Sharing memories can give solace. Dick has grown closer to his step-son as they have talked about their lives with Di. Dick has also become close to Di’s family in America and Canada who have been supportive since she died. David (Interview 35) and his sons created memory boxes after Fiona died, which his sons find a great comfort when they are missing their mother. Georgina has a happy memory captured in a photograph of her mother in a bubble bath at the hospice. Janet organised a concert as a memorial to her partner, which she found therapeutic.
 
Deciding when to go back to work after bereavement can be difficult. David (Interview 35) was unsure when he should return to work and send the children back to school. His best advice came from his GP who said, ‘Try it and see what it is like’. Returning to work and family routines can seem like getting back to normality or a distraction from the grief.
 
Faith can be a support for carers both during their time of caring and after death (see ‘Ways of coping or finding solace’). John (Interview 10), who now works for the hospital chaplaincy, found faith had been a great comfort to him and to his wife.
 
Although Maggie says she is ‘getting there’ and is planning a career change, she feels as though she is living someone else’s life now. Many spoke of how the experience of death has changed their attitude to life. Poppy thinks about her dad every day. She no longer worries about the everyday small things but is trying to do things that would make her dad proud.


Last reviewed July 2014.

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