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:

Kay went to bereavement counselling after her parents died but found she was talking more about her feelings of grief about her brother’s MS than about her parents.

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Age at interview: 38

Sex: Female

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I went to bereavement counselling last year because I was finding it quite difficult. I thought, and I, I guess it was to a degree obviously about grieving for my father and to some degree my mother, even though that had been a bit of time before. I found myself talking about my brother probably 60 per cent of the time, even though he’s obviously alive. And it is a bereavement in a way because I’m grieving I guess for the brother that I don’t have any more. I’ve still got my brother, but he’s a different brother and it’s a different relationship, in some ways good, in some ways bad.

But it was quite helpful to me to actually sit down and talk about some of the things that you feel you can’t say to your friends or your family, the feelings that you might have about being almost forced into a position of, of being responsible or as a carer for a sibling. Obviously having to sort of deal with that on top of your parents dying quite, you know, within three years of each other is, is quite difficult, and, and trying not to feel resentment for your parents for leaving you with this and, “Why, why didn’t you have another child?” so I had a back-up child, a back-up sibling to help me. But, you know, you are where you are and you have to deal with what you have to deal with.

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:

Louise said it’s ‘terribly hard’ to deal with how her son’s life, and their family, has changed because of his MS.

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Age at interview: 61

Sex: Female

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Well, what I found with everybody really, everybody is affected by it, it’s a long road and who knows where the hardest part will be but I do know from talking to everybody that the beginning is very hard for everybody. That adjustment and the time when you’re trying to come to terms and readjust your outlook on life and, and it’s a grieving process as well, you know, you’re grieving.

And I think I still am grieving for the life that my son should have had in a way because he’s had to change his life so much. I mean he can’t, he was a very promising artist, he could draw wonderfully which he can’t do anymore and yet he’s finding other ways of expressing himself. But you grieve for that kind of life that he could have had and, you know, he was so popular with girls and, he’s not really had a girlfriend since his diagnosis, he’s lost that confidence, you know.

And it, it’s that, you kind of, it’s not the life you expected and it’s not the problems you expected and, when I look at other families now when they’re all healthy I think, you know, they might be complaining about one thing and another, I think, ‘You’ve got nothing to worry about.’ I know it’s a cliché but if you’ve got your health you’ve got everything and if you haven’t got your health it takes an awful lot of adjusting. Especially with such a long term thing and you don’t know what’s round the corner, you don’t know how it’s going to affect you next year. Is it going to rapidly progress or is it not, you know, you just don’t know, nobody knows, nobody can reassure you. It is terribly hard to come to terms with it. I don’t think come to terms with it is an expression you could use really, it’s just terribly hard to deal with.

Bereavement

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.

Although it was a ‘huge blow’ when her mum died, Carole felt a bit relieved because her mum had been suffering so much. But she also felt guilty for feeling relieved.

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Age at interview: 53

Sex: Female

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After, because she was in hospital quite a few years and then I’d gone away to college then and so it must have been seven or eight years after that , and just got a call from my dad one day saying, “Your mum’s died.” And I remember saying, “I didn’t know she was ill.” And she’d had, apparently, some complication. I think it was pneumonia she’d had and they didn’t treat it but again our dad hadn’t told [laughs] hadn’t told us anything about this.

So that was another huge blow, really, because, although I knew our mum was ill with MS, I didn’t know anything else was wrong and so, we hadn’t been prepared for it at all and so yeah, just to say, “Your mum’s died” was quite, quite horrid too. But that was a relief because she didn’t have any quality of life. She couldn’t, we didn’t know if she, when we went to visit her we didn’t know whether she knew us or not. She certainly didn’t do anything. You know, she just lay there all day long, day after day after day. So I tended not to go and see her that often because it was too upsetting to see her and then felt guilty that I didn’t go and see her and so it was, yeah, it was, it was very difficult.

When she did die and, although it was a relief, I then had all these guilt feelings thinking I didn’t do more for her and that I shouldn’t be glad that she’s died and all that. So but again, no one talked things over with us and yeah, it was, it was horrible too, then. It was, it was a help that, you know, it was better that she wasn’t there suffering. I mean from what I know now, that’s very unusual the way her progression, you know, was so, so fast but it’s, it’s yeah, it was, it was scary.

Anita said that when her mum died she went through a complex grieving process and had to reconsider her own identity.

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Age at interview: 37

Sex: Female

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When my mum eventually died when I was about 26 there was an incredibly complex grieving process for me because I’d lost my mum and I’d lost my role actually in life. And I spent a lot of time sort of reflecting on it. But my whole purpose, everything, about who I was as a person had been around my mum. That was my first thought in the morning, it was with me all day, it was what I did. And, you know, suddenly that, that wasn’t there. I was her advocate when she wasn’t getting the right care, you know, I was setting up meetings with social services, I was writing letters to directors of social services because I was appalled at the care that she was getting. That she didn’t have the right equipment. Now I’d go along and speak on her behalf. I had her best interests and drove, you know, everything. And she used to say to me, “I’d be lost without you.” And I always used to say, “Well then you’ll never be lost because you’ll always have me.” But, that was true, was she didn’t have, you know, I was that one person in her life that was, you know, looking after her.

So when she died I really didn’t know what it meant to live my life without thinking about my mum. And I felt incredibly guilty I also felt a sense of grief for the fact that I hadn’t really lived and I still feel some of that now. I feel quite angry, I feel like I, you know, I haven’t got a family now. I think that I probably would have done if, you know, if I’d have had the opportunity to have what I would call a more normal life and get married and have parents that come to that wedding and I feel that I would have a family.

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.

When her husband died, Sarah got a lot of support from her mother and from the school where she worked as a teacher. After six months off work, going back to teaching was her ‘sanity saver.’

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Age at interview: 59

Sex: Female

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I was able to take time off work because the practicalities of coping with the death were pretty straight forward. Most things could be done by friends or relatives that was okay. The emptiness of the house, I couldn’t come in here, this room was completely, no I lived my life not coming into this room. And the practicalities of getting through the days were okay I could do all that and not having him here in some ways not having had him here for seven weeks made it a lot easier because I had evolved some sort of routine although it was with an eye to things will go back to the way they were.

The winter was a long hard winter. I was lucky that my mother was alive, she was close both physically and to me as a person and she was marvellous. School were very understanding, I took the full six months that I was allowed to and after a couple of false decisions that perhaps I could go back to work I waited until I knew I could. Two weeks before the end of the spring term I went back to school and I said I will do the two weeks even if it is the most uncomfortable two weeks of my life I will do it because I knew that once I’d done those two weeks I could then have three weeks holiday, it was a small bite. The kids were fantastic school, going back to school was again my sanity saver.

I picked myself up but that six months I saw as a time to let everything unravel. I’m a great believer that stress is responsible for so much, this is why I think my husband’s MS erupted. His mother died in a dramatic way, as I say from heart disease, we were on holiday with her in Scotland and she had a heart attack in the night and the short version of what happened was that my son, I took my son out for a walk and while we were out the doctor arrived and he and my husband tried to save his mum, had another heart attack and she died. And he felt that he’d let her down, that he could have saved her. And that stress and the previous sort of nine months I am sure is what’s responsible for triggering the failure in the weak part of the system.

I was quite determined that I was going to see how far I would unravel. I’d spent all these years coping and trying to do what I had to do and I realised that this was an opportunity to actually let everything go, see how far, and it wasn’t down, it wasn’t a depression it was just see what happens if you stop doing everything you’ve done and see where you finish up. And actually I finished up very much where I wanted to be which was picking up the threads of a life which had been over busy, incredibly stressfully busy, some days I used to count up how many hours I’d been awake and I’d get to 17, 18 sometimes 19 hours a day, not enough hours in the day to have a sleep and certainly rest was not something that I knew about. Fortunately I don’t have many illnesses but I thought that was my one chance to actually let my body and my brain pick up again.

Norma says that she felt so bad when her son died that she wanted to die but she had to carry on and be strong to support her other son.

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Age at interview: 70

Sex: Female

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So Shane was taken ill on the 5 December 2003 and strangely enough on the 6 November I was going on a cruise so it was midnight when his breathing, his lungs collapsed, you could see it was pneumonia because I know about pneumonia, don’t even know how I know about it, however. So I called the ambulance they took him in and he was given x-rays, they help him with his breathing because his breathing was really laboured and from the time he went into hospital until he passed away I didn’t leave all the family were there, you know, and he passed away.

It was a sad time but I know I had to carry on and be strong for [name]. When it was the funeral it was, I find that, I find that really, really, really, really so burdensome. I don’t know the reason until this day why they usually take the coffin back to the house but I can tell you that was the worst thing that could ever happen to me. However, I know I had to be strong for my, for the children especially [name] and I remember when we were at the, at the internment [name] said to me, ‘Mummy if you don’t cry I won’t cry.’ I said, ‘No I won’t cry.’ Oh, I tell you I just wanted to die, I felt really bad. But we carried on because we’re a very close family.

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:

Alice and her friend with MS decided to hold a party to bring together all the people who were close to him and say the things that often only get said after someone dies. It is one of the best things she has ever done.

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Alice and her friend with MS decided to hold a party to bring together all the people who were close to him and say the things that often only get said after someone dies. It is one of the best things she has ever done.

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Age at interview: 35

Sex: Female

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Can you say a bit more about counsellors and what they’ve provided for you?

I’ve had a bit of short term counselling but only very sporadic and well, I’ve had to seek out everything definitely. I’ve had, you know, I’ve had a few bits of counselling here and there and it has been great. But most of the time, you really just need to look inside yourself and you really want to find the support inside yourself because at three in the morning, when you’re feeling utterly, you know, so bleak about everything or, no one can really understand it. It’s not the same as a parent dying. It’s not the same as a child with a terminal illness. It’s, and it’s not as if I can say he’s my partner, he’s my ex-partner, and nobody knows how to define him. He’s my best friend slash ex-partner. There’s no word for it.

And about two years ago, I said to him, “We could have a marriage, a blessing or a party.” And which one does he want. “Or, nothing at all.” I gave him four options. Which one does he want to do? And he blinked to a party and I did this question about seventeen times and he wanted a party. So I hired a hall, photographer, got loads of food, got drinks and our families came along. So it was like a living funeral I suppose, to use that horrible American expression, but my God, it’s one of the best things I’ve ever done. Honestly recommend to anyone whose, knows that they’re going to lose someone, this living funeral, a party. It was just the best and okay, he slept through most of it but he was there. He’s in all the photos. I got to say everything I wanted to say with him being there. There were flowers everywhere in his various favourite colour, everything that you’d want to do at a wake or something like that we, basically, did while he was there. And got beautiful photographs, drank champagne and ate chocolate and it was just it was just so brilliant and I think I got that idea from a website about terminal diseases and I’ve got this happy memory now. We’ve all got this really happy memory. You know, and just him knowing that he wanted a party, he got a party and it was amazing and it was the strangest party [laughs] in the world but, you know, we made it into something fun and important and, you know, he could be involved with. So that was a lovely thing to do from something that I had read. So but, yeah, I don’t know. I’m kind of saving up the fact that I’ll probably need a bit more counselling later on. I’m trying to do everything I can to minimise the pain that I know is going to be horrendous. So, that was one technique that I thought would be useful and then I think, hopefully, for all of us, for his parents as well.

Very, very brilliant time. I think they thought I was mad when I came up with the idea [laughs] but I think it was very, very therapeutic.

For everybody.

For everybody.

But, no, I think I’m saving up my counselling hours. But, you know, I think I’ve coped with it reasonably well but that’s because he’s been so brilliant and I don’t think that’s typical.

(Also see ‘Talking about end of life’).

Last reviewed March 2020.
Last updated July 2018.

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