Multiple Sclerosis: friends & family experiences

MS: feelings of loss, grief and bereavement

When someone’s life plans change because of illness those who are close to them can also feel a strong sense of loss. Sometimes, the words ‘grief’ or even ‘bereavement,’ are used to describe the complex emotional reactions to the feeling that opportunities in life have been lost due to illness. 

Kay Y had been for bereavement counselling after both her parents had died within three years of each other. In her counselling sessions, she found herself talking more about the grief she felt about her brother’s MS than about her parents dying. Kay felt that after her parents’ deaths she was alone in looking after her brother and said it was helpful to talk to the counsellor:
Anita feels that living with her mum’s MS for so long has had lasting effects on the rest of her own life, impacting on her confidence, her relationships and her own lack of a family. Louise Z whose son is living an independent life with MS was, nevertheless, grieving that his life hadn’t turned out differently. She feels that he has lost the life that he ‘should have had’ and regrets the many changes he has had to cope with, including loss of his ability to draw and loss of confidence in forming new relationships:

We spoke to a few people whose relative with MS had died: Anita and Carole had both lost their mothers. Norma’s son and Sarah Z’s husband had also died. Even when a death is expected it can be a terrible shock and those who have dedicated a large part of their recent lives to caring for someone else can feel an enormous hole in their world. Sometimes another bereavement in the wider family had a big impact on the person with MS. Sarah said the death of her ‘larger than life’ uncle had created a ‘big hole’ in their life and had made her mother’s MS worse. 

Anita had been her mum’s main carer when she was a teenager. Her mum died when Anita was 26 and she felt as though her main purpose in life was gone. She also felt guilty that she hadn’t done even more to help her mum. She still feels angry that MS has taken so much of her own life away. Carole had looked after her mum as a teenager. She was shocked when her dad phoned to say that her mum had died, from pneumonia, because she didn’t know that her mum was ill.
Sarah Z’s loss of her husband was made worse because of miscommunication with hospital staff and his unexpected and traumatic death. He had been in hospital for seven weeks before he died so in some ways she thinks she was accustomed to him not being at home, yet the house felt empty after his death. She took time off work to allow herself to ‘unravel’. Norma was grief-stricken when her eldest son, who had primary progressive MS, died from pneumonia only a month after another of her sons was diagnosed with relapsing-remitting MS.
Alice was preparing herself for the eventual death of the man who had been her partner and is still her best friend. She has had some ‘sporadic’ counselling and thinks she might have more in the future. She admits that it may sound strange but from her own experience she highly recommends holding a ‘living funeral’ to celebrate a person’s life and relationships:
(Also see ‘Talking about end of life’).

Last reviewed July 2018.
Last updated July 2018.

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