A-Z

Multiple Sclerosis: friends & family experiences

Messages to carers, relatives and friends

We asked people if they had any messages or advice for others living alongside a relative or friend with Multiple Sclerosis (MS). Some people said it was difficult to give advice because it depends on the level of disability the person with MS has and because people have their own particular ways of approaching it. Ann said it’s important to ‘support them in the way they want you to’:

 

Ann suggests focusing on the positive and getting information from reliable sources. The most important thing is how the person with MS wants to deal with it, because it is their diagnosis.

Text only
Read below

Ann suggests focusing on the positive and getting information from reliable sources. The most important thing is how the person with MS wants to deal with it, because it is their diagnosis.

Age at interview: 55
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
Is there anything you could say to other people who might be in your situation, some kind of summary or message?

Crikey it’s very hard because I have a particular way of coping with things and my daughter is different from anybody else’s daughter or son. I would say focus on what you can do that’s positive, find out as much information as you can but make sure you’re getting that information from a reliable scientific source or from close friends and family whose opinions you value and who’s judgements you value. Try not to get sucked into some of the things online because I know we all do, we all go on line and type in, in Google but try not get sucked in and if there is anything that comes up that you think oh I’m not sure about that, make a note of it and check it over with your MS nurse if you’ve got one or your GP if you’ve got a good GP, our GP’s were brilliant as well very, very sympathetic, known my daughter since she was a baby and everything so I would say that’s how to go with that and let your family and friends sort of support you. But I think you have to keep that front as well how does your family member want to deal with the issue and you come after that, your needs come after that. It’s about supporting them in the way that they want you to do it. It’s their diagnosis, it has an impact on everybody else but it’s got to be about what they need to support them. And again that would depend on their age and the circumstances. But I think that’s it, yeah.
A lot of people gave very clear messages about what they thought was important. Many advised learning as much as possible about MS and getting information about what help or support is available.
 

Robin says it is vital to get information about resources that can help you. He thinks they are lucky to have much more help than when his wife’s mother had MS 30 years ago.

Robin says it is vital to get information about resources that can help you. He thinks they are lucky to have much more help than when his wife’s mother had MS 30 years ago.

Age at interview: 72
Sex: Male
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
I think the business of getting as much information as you possibly can is absolutely vital if you don’t get information, you can’t take any action and if you can’t take any action you become a prisoner of your own caring situation. It’s difficult enough being a carer, nobody pretends it’s easy why do we do it, we do it because we love the person we’re caring for I think or perhaps in extreme cases you feel a sense of bounden duty I don’t know. But unless you do what I suggest in terms of getting in touch with social services, appropriate medical advice magazines that deal with the subject and MS Therapy Centres and MS nurses you won’t know what resources are ready for you to use and what opportunities are open to you. Now when I compare it with the way it was 30 years ago for my wife’s mother, practically nothing of what’s now available was available then so we’re very lucky really, very lucky indeed.
 

Christine says she has never felt alone in dealing with MS because there are many sources of information and help.

Christine says she has never felt alone in dealing with MS because there are many sources of information and help.

Age at interview: 50
Sex: Female
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
Just find as much information as possible. Read everything that there is. Try and talk to someone who has it, who has MS. Talk to, definitely a friend who supports somebody with MS. Just try not to worry too much and there is so much that is being done for MS sufferers and they will live a long time. MS sufferers do live a long time and they are lucid and just ride out the fact that occasionally, they will be tetchy because it is very frustrating if you are, one year, you could walk and the next year you find that you can’t or you can’t use your hands in the same way. Writing may be difficult but I, people who have MS are definitely in much better shape than they were twenty years ago. There is so much which is done for it and it is and it is a disease or an illness which people are finding ways in which to cope with it. People do cope better with MS than they ever have before. It has so much support and there’s so many people who are willing to help you out. I mean you don’t, I with this I’ve never felt that I was actually alone dealing it, never, not for one day. There’s always been somebody who has it or somebody who knows somebody who has it and there are so much you can, so much so many places you can go to find information and so much help you can get, so much help.
Several people stressed the importance of having a life of your own and looking after yourself, so that you could continue to support the person with MS.
 

A GP thinks that family members need to prioritise their health and emotional needs more and that health professionals need to do more to support them.

A GP thinks that family members need to prioritise their health and emotional needs more and that health professionals need to do more to support them.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
Caring is incredibly hard work both physically and emotionally and I think it’s sometimes very difficult for carers to say, ‘Stop, look at me, I’ve got my own health needs’. Because they are so aware that the person they are looking after has so many more health needs. And I think we need to sometimes as health professionals focus more on the carer and ask them how they are doing, how they are getting on, how they are coping and if there is anything they need to help them. And similarly I think carers maybe need to prioritise their needs sometimes which is difficult for them to do but it is very important that they stay healthy and well and as cheerful as they can be while they are looking after the person with MS.
Eric added that you shouldn’t forget that your relative with MS is an individual and also needs to have a life of their own. Several people said that enabling their relative or friend to live life as fully as possible was very important.

Many people said, ‘You’re not alone’ and talked about the importance of asking for help, whether from friends, neighbours, charities or statutory services. The key messages here were, ‘Don’t be frightened to ask for help’ and ‘Be persistent.’
 

Kay has never regretted asking for help, though it can be hard to do when you see yourself as a capable person.

Kay has never regretted asking for help, though it can be hard to do when you see yourself as a capable person.

Age at interview: 49
Sex: Female
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
Nobody need travel this alone, but you have to swallow your pride and say, “I need help” and, and find the people that are there for you. So many people will say, “Oh, you know, you know you can always call me” or, or, you know, “Don’t hesitate to give me a ring if there’s anything I can do.” And that in itself is, is helpful. But it’s not half as helpful as actually calling their bluff and asking them for help. 

And ironically, the more capable you are as a person, the harder that becomes to do. But I’ve never regretted it when I have asked for help. Because people actually see it as a compliment that you, you trust them enough to be vulnerable with them, to admit that you need the help. 

Like, you know, there was one time, I strained my back because I’d been nursing [name] and, I’d been nursing my husband and I’d overdone it. And so I needed somebody to do the driving for me for a few weeks because I was in too much pain to drive. And the person I asked to do the driving was delighted to be able to help and would have felt dreadful if I hadn’t. So, you know, they really do appreciate you being honest and open, as well as giving yourself time to recover from whatever it was that you needed help with.
 

MS Specialist Nurse gives some advice to people and their families who are living with MS.

MS Specialist Nurse gives some advice to people and their families who are living with MS.

SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
I don’t think there is any one answer to the treatment, management and living with MS. I think it’s about identifying your local support, your local services. Utilise them. Don’t be frightened of picking the phone up. It’s not just about drug treatment. It’s about therapies, it’s about complementary therapies, alternative therapies. And, you know, it’s about thinking outside the box quite often. So just keep communicating with the services that are available to you. 

Just talk to each other. You know, don’t isolate yourself. Don’t assume that it’s you that’s, you’re the only one that’s living with the MS. Your whole family is living with it. And the, the one thing that I, that I say to many people is, “Be your own best friend.” You know, if you, quite often it’s hard to sort of, to give yourself advice or step outside yourself and be your own best friend. What advice would you give to your best friend, if you’re struggling with the situation. And quite often it’s much easier to do that.
Several people said it was important to keep talking; to your partner with MS, to other people who share your experience and to health and social care professionals.
 

Carole never met another person with MS when she was caring for her mother. She thinks it would have really helped to talk to someone else about how they coped.

Carole never met another person with MS when she was caring for her mother. She thinks it would have really helped to talk to someone else about how they coped.

Age at interview: 53
Sex: Female
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
My own advice would be for people to talk to people if you can or to, you know, to people who’ve got MS or who’ve been through that, finding out how they’re coping, you know, finding out about their experiences I think is absolutely vital. I mean, I never met another person who had MS at the time. I never met anyone else who was caring for someone with, or with any illness but certainly not with MS. 

None of our family, none of our family and friends were poorly at the time and so there was not anyone else to talk to about it and I would, yeah, I think being able, being able to have that opportunity to talk to someone or to find out how other people have coped is, would have been so much help for me at the time. It would have been so much help for all of us, I think, and so you don’t feel so on your own. You don’t feel so isolated, don’t feel so scared perhaps and then having the opportunity to talk, you know, to talk through your worries as well, rather than being made just to cope on your own. It was yeah, it’s yeah, it really would have helped so much.
Some people recommended trying to hold on to particular attitudes: for example, keeping a sense of humour, trying not to worry or feel guilty about having time to yourself. Louise Z, whose son has MS, advises people not to worry too much about the future but to take one day at a time. A key message here was to keep positive and not give up hope. Alice tried to keep in this positive frame of mind, even though her friend is severely disabled, because she believes that ‘you adapt to the most difficult situations:’
 

Alice says that she and her friend have surpassed themselves in what they thought they could cope with.

Text only
Read below

Alice says that she and her friend have surpassed themselves in what they thought they could cope with.

Age at interview: 35
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
Bearing in mind the uniqueness of your circumstances and your relationship, is there anything you think you could say to somebody who might be facing anything at all similar to your experience?

I’d say it’s just getting that fine balance between kind of not being scared by the future but living your life to the full. So, you know, with any diagnosis of MS you don’t quite know the course the disease is going to take and you don’t want to necessarily be living with a shadow of a shortened life expectancy or very profound disability. But, at the same time, you have got to be quite realistic that it might happen and to not put off things that you want to do, and that might be having children or thinking about you know, sperm samples and things like that for the future, with all sorts of things, kind of embrace the legal ramifications, the living wills, the power of attorney, the directives, have those difficult conversations very early on because you never know when, if you’ll be robbed of speech at any time. 

And also, I think the one thing that I’ve learnt more anything is that you do adapt to the most difficult and challenging situations. I think I was a lot more frightened on the first diagnosis. I mean I was absolutely terrified and now life is kind of okay. It’s enormously difficult but it’s okay and we still continue to have fun. You find enjoyment and pleasure in the most extraordinary situations and there are ways of managing extremely kind of complex situations and you do find strength within yourself that you don’t think you will have. You know, as human beings we have this unbelievable ability to adapt and I think that he and maybe I’ve kind of surpassed ourselves in what we thought we were capable of coping with and that goes for I think everyone who’s living with a kind of partner with a terminal condition or a friend or a, I don’t know, or perhaps living with the condition themselves or someone who’s lost a family member, or whatever it is. People, you know, find a way usually to cope.
People acknowledged that it can be very hard living alongside someone with MS, depending partly on what type of MS they have and on their level of disability. Sarah Z said it will ‘try your resources to the limit’ and she can’t imagine how people cope without a network of friends. Mike acknowledged that looking after his partner was ‘sometimes a thankless task’, but it was important to remember that she did appreciate all that he did for her. Sarah, a young carer said, it was ‘not as bleak as people think’:
 

Mully says you can’t turn the clock back so just ‘do the best you can and don’t be frightened.’

Mully says you can’t turn the clock back so just ‘do the best you can and don’t be frightened.’

Age at interview: 63
Sex: Female
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
Hang in. Do the very best you can and don’t be frightened of it. Any disease of any sort is going to hit everybody. We’re all going to die and it’s not going to be wonderful. The lucky ones are the ones who have the spontaneous heart attacks. The rest of us dribble. We dribble away and we just have to accept that, no magic numbers and just get on with it because it’s not going to go away. You can’t, you can’t go to bed and think tomorrow’s going to be back to, you know, move round the clock because tomorrow is just going to be one more day down the line. So you might as well be happy and enjoy it and have a laugh, be kind, be really, really kind and be generous and it doesn’t really, it doesn’t hurt at all to tell a joke while you’re cleaning a suprapubic catheter.
 

Sarah thinks that caring for her mum has given her a different outlook on life and that you can get a lot more out of caring than you have to give.

Sarah thinks that caring for her mum has given her a different outlook on life and that you can get a lot more out of caring than you have to give.

Age at interview: 17
Sex: Female
SHOW TEXT VERSION
EMBED CODE
PRINT TRANSCRIPT
It’s not as bleak as a lot of people think. Like I’ve said repeatedly, the, the closeness of our family, and the friendships you develop as well, whether, whoever they’re with, age, illness, health does not matter. People have such a, a broader view on life. People aren’t as materialistic. The, the friends you will get through being involved with charities and things like that, 99.9% of the time you could not meet people with better hearts or minds, because it really, like, I go to my young carers’ group and the friends that I’ve got there, you know, you don’t mention about caring, you’re just there for fun. You’ve it’s been a good release for me, but at the same time it, it’s also meant that I, it’s an avenue where I could help others and things like that. 

And I just, I wouldn’t change it for anything, I really wouldn’t. I genuinely mean that. Like a lot of people say, “Oh of course you would”, you know, “you wouldn’t say that with your mum or ...” But, no, it’s made me a better person. I’m sure it has. It’s made me, mum and dad closer. And it’s meant the friendships that I’ve developed are more meaningful. It’s meant that the career path I’ve gone down is more substantial. Like I wouldn’t have had any idea otherwise, I’m sure I wouldn’t. And it just, it’s just given me a completely different outlook on life to what I think I would have had. So I certainly think that you get a lot more out of it than you necessarily have to give.
 

Ray advised learning to ‘understand the illness and work with it.’

Text only
Read below

Ray advised learning to ‘understand the illness and work with it.’

Age at interview: 17
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
I think you need from, well certainly from, from our point of view is to understand the illness and don’t work against the illness, work with it. If someone’s having a day and they feel tired, let them rest. Don’t push the boundaries and, and you’ll, you will fall into a, a way of perhaps understanding and working with the illness and ultimately I don’t think, I know people that, that I would class them as put their head in the sand. And if you put your head in the sand you don’t understand the illness, you don’t work with it, to me you’ve got mega-problems. You’ve got to look to the future and say, “Right, what can we do that will empower us to give us a better a better way of living and stuff like that. i.e. you know, do you need aids or stuff like that, or do you need a certain medication? Whatever it is. And, and, and, and talk, talk things through. Talk how people are feeling. What, what drags you down, what lifts you up and things like that. And try and keep positive and, as I say work with the illness. And I think that somewhere along the line you will get something out of it. You’ll understand it and it’ll make your quality of life better as well. I think so anyway.
Several people offered practical advice such as buying specialist equipment at the right time, getting legal advice on funding for care home fees, or just the need to plan everyday activities (see ‘Being a ‘carer’’, ‘Adaptations, aids and equipment for MS’ and ‘Getting help with care needs for MS’).

‘Be prepared for the worst,’ Dave said, ‘rejoice when you get something better.’

Last reviewed March 2020.

donate
Previous Page
Next Page