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Help - My Sister

Im not really sure where to start, i guess this is my first time reaching out to anyone

My sister was diagnosed 4 years ago, when she was my age (20) with MS and our lives have changed for the worst since. She is such a brave, caring, loving person that i cannot stand to watch her suffer.

Lately her relapses have become more more frequent and longer, i bathe her and hold her while she cries but i am struggling with her pleas for suicide and need to find a purpose in life.

I feel so helpless and overwhelmed.

Ive never had anyone to talk to and dont know anyone else that lives with MS in their lives.

Any words of encouragement or suggestions would be greatly appreciated.

Hi,

Well, first of all your sister is lucky to have a sister like you.

In our family, I’m the one with MS. I never see my sister. I did get a card from her when I was first diagnosed, and on birthdays and Christmas, but I doubt she could even tell you when my last relapse was, and I certainly can’t imagine her bathing or holding me. Not that I mean to sound bitter - for reasons I won’t go into, I wouldn’t want my sister in my life, doing those things, so I’m not complaining I’m hard-done-by - not at all.

But I suppose the point I’m making is sisters don’t have to do those things! You’re doing them because you want to, but there’s no law that says this is your duty, and that you have to sacrifice your own life and aspirations, because you were unfortunate enough to have a relative who got ill.

You need to find somebody to talk to, and not just your sister, but you need to find a purpose in life - one that does not revolve around sacrificing everything to her. You’re young - you should have plans, you should be enjoying yourself! Not feeling as if your only purpose is to look after your sick sister, and you have to do this all by yourself.

You probably won’t like what I have to say, but I think it’s time to get the professionals involved. Have you spoken to your GP - told them what you’ve just told us? You shouldn’t be coping by yourself with a suicidal person - it’s not fair on you - but actually not fair on her, either. I doubt you have the specialist skills necessary to deal with these kinds of complex needs. There ARE specialist people who do it professionally, and I think they need to be involved now.

I’m not talking about deserting or disowning your sister - I don’t mean professionals instead of you. But I think you need to enlist specialist help, so that you can have some kind of life.

I would suggest to make an appointment with your GP (for you, not your sister), and explain the situation completely.

Or, you could try ringing the free MS Helpline (probably only weekday business hours, although I’m not sure): 0808 800 8000

I’m sure they would have some idea of helpful organisations to contact.

You can’t just leave things like this. You are entitled to some kind of life, and your sister is entitled to specialist care appropriate to her needs as well! Please make a call on Monday, and do something about it!

Tina

xx

Hello Tina,

Thank you for replying so soon. I probably should have said in my first post, our step father is a GP and my sister has her own MS nurse so she is also getting the professional help she needs. She was taking Copaxone before her body started to reject it and is now on a new drug but it hasnt managed to take proper effect yet.

I am already on anti-depressants for an eating disorder and have had therapy before for that however work have put me in touch with a service we get free through them so i have just signed up to that. I tried the MS helpline earlier but didnt find it helpful, the woman didnt really speak to me and was quiet difficult to talk to.

Im sorry to hear about your sister, my sister and I have always been close from past family traumas and i would never want to desert her in her time of need. I have no grudges or annoyance for the things i do for her and find her a pleasure to be around no matter what, i just feel very low when i cant help her and i think im trying to get my head around the thought of losing my older sister.

Im planning on going travelling for a year or two after uni with my partner but im starting to struggle with the idea of leaving her for such a long time in case anything truely bad happens. I cant seem to talk to my partner about it as he has never been in a similar situation and has never been around when she is having a relapse. Lately they have just been getting worse and im struggling with accepting what is happening to her. It has got to the point where i will have to drive home from uni after a tearful phonecall and miss lectures and call into sick to work. I dont want to not be there and have no problem with going back i just have no idea how to console her when she asks me why she should even be around anymore. My niece has started to pick up that something is wrong and im also finding it difficult accepting that this is going to be her life. I keep telling my sister that she doesnt know any other way to help her accept it but i just dont truely believe it myself.

Sarah x

Hello,

Thank you for the additional information - I hope you’re feeling a bit better this morning - perhaps just from airing your feelings on here?

Without knowing either of you, it’s difficult for me to tell how realistic your fears about your sister are, and how much they are coloured by your own depression. Most people do NOT die of MS. It would be reckless of me to promise it can’t ever happen - after all, there are always exceptions. But it’s not a normal outcome - especially after just four years. It would be very rare indeed.

So I wonder how realistic your assessment of your sister’s prospects is, or whether depression is making you dwell on scenarios that are very, very unlikely?

You should not be missing lectures or work over this. I’m not telling you off - it’s just that you need to strike a balance that doesn’t see your own future jeopardized. How much work or study can you miss, before it starts to have an impact on your prospects? I’m not talking just money, here, but the passport to a career and life of your choice, that you would find personally rewarding. You can’t let that go down the pan! And if your sister is everything you’ve said she is, I’m sure she’d be absolutely gutted if that were to happen, and she thought it was because of her. I think one way to help your sister is to have the best life possible, so that although she won’t be able to do all those things herself, she’ll have the next best thing - she’ll know someone close to her is out there doing them - someone she can be proud of. It certainly won’t be helping her if she feels that she is a burden, and that you have messed up your life for her sake - she would want to know you’re doing well!

An aspect of depression you may not know about is that it can create a strange sort of sense of self-importance, but in a negative way, i. e. believing you are in some way responsible for everything, but ONLY the bad stuff! You are NOT responsible for not being able to do the impossible (make your sister better), and your sister is NOT reliant wholly on you, so that every time you work or study, you’re somehow letting her down. Her situation is much better than I originally envisaged, with a doctor actually in the family, and she’s seeing an MS nurse, so she’s not struggling along with nothing, and totally dependent on you - she has other lines of support. Is there a husband/partner around too, or is she a single mum?

I hope the work counselling service is of some help. They must be quite a sizeable/reputable employer to offer that. Perhaps the counsellor can help you strike the right balance, of being a support to your sister, whilst not sacrificing your own ambitions. You cannot put the rest of your life on hold, and spend it within a five-mile radius of her, in case anything “truly bad” happens. If you want to travel one day, you need to be able to do that with a clear conscience. It isn’t wrong. It’s unrealistic for a young person to have to spend their whole life just a phone-call away, in case anything happens. As we grow older, we all have to face that something might happen to someone while we’re not there. If it’s not sick sisters, it’s ageing parents. It’s a fact of life you can’t always be there for everybody, all the time, “just in case” - nobody can! And normally, our relatives wouldn’t want it. My dad would have been horrified if I’d quit my job or sold my house to be with him in his final months (he lived 100 miles away). He’d have been totally against anything so drastic! I did, of course, spend what time I could with him at weekends and holidays, and the medical staff were very good about letting me know when to expect the worst, so that I could be there in time - they have experience of these things!

But all this may be totally irrelevant. MS reduces life expectancy only very slightly - most people will have a normal or near-normal lifespan. In general, it is quality, not quantity, that’s worst affected. Not that that’s very good news either, but it may help keep things in perspective for you.

Tina

xx

1 Like

My sister gas secondary progresive ms, this is so difficult, she wont accept it, my mum is 84 and struggling but we both do all we can, always there for her but she just screams at us, we stay calm and try comforting, but we get shouting and abuse all the time, still calm but so upsetting

hi RARA

whatever you do don’t miss out on travelling.

this is the time for you to do it before mortgages get in the way.

talk to your step dad about it and enlist any help offered.

have a fabulous time on your travels.

carole x

Space

your sister can’t help her temper there is a medical cause with a medical name but my memory isn’t working today.

however you need outside help for your own and your mum’s sake.

please ask your gp to put you in touch with the right people.

carole x