Hi everyone,
Not sure what this post is saying really other than how do others cope with the not knowing what the future holds.
I’ve been with my husband 30 years but he’s 10 years older than me and we have no children and I have no other family so I’m constantly worrying about who’s going to look after me when I lose my independence and let’s face it my husband will either be gone or too old to be able to. I’d really hate having to pay £1000’s for a care home which by all accounts aren’t ideal but I’d have no choice. Home carers don’t get allocated enough time to do my daily bowel wash out and who knows what else by then. Is that my future, sat in a chair waiting on someone to come and toilet me and then probably not have time to feed me, then someone putting me to bed.
I know this is the life a lot of you already live and it breaks my heart, it really does but I couldn’t do it.
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Hi @LucyAnnie , you’ll face it, if and when that time comes. We can’t and we shouldn’t worry about the future. At least not too much. What will be, will be. All of us know what might happen. And it might not. In the meantime we have to look for those small things that do bring at least a smidgen of comfort and joy into our hearts and lives. Things are very easy to say, I know. Worrying about it is a normal thing. But don’t let it consume your every thought. Your husband might surprise you, yet. Wishing both you and your husband well in whatever the future holds for the pair of you.
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I know how you feel! What will any of us do if left on our own? It’s is a scary thought and one that has occupied my mind over the years. Lots of thinking but no answers! One thing I have wondered about but not explored is the possibility of spending money on a part time nurse/ care rather than care home fees. Having said that some care homes are OK . My aunt who had MS was in one for years and it seemed OK - pretty good. Similarly my Dad spent the last months of his 95 year life in a care home that was OK. Mind you, I think I would cringe at the thought of some of the group activities but others were entertaining and varied
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By the time you’re our age – and forgive me if I’m making assumptions about yours – all the big cards in life were played long ago – decisions about life partnerships, children, careers, finances, location, friendships – and what we’re left with is what we’re left with. Far too late now to do much about any of it. The upside of all that is that there’s no point worrying either. That’s my philosophy anyway, or what I aim for at least.
When you’ve had a MS a long time, you’re pretty good at dealing with whatever comes along and I hope we can draw some reassurance from our experience of that.
You’re quite right though, it’s still pretty terrifying, particularly for those of us (me included) who have no adult children nearby (or anywhere else).
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Thanks for taking the time to reply, I have to admit I have cried many nights over this thought.
My mum spent a month in a care home and it was horrendous. But guess it’s the luck of the draw, some are better than others.
Thank you Freshairman, I do spend too much time worrying about the future and forget to enjoy the present, in fact if I didn’t know better I’d say my husband told you to reply that 
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Thank you Alison, my mum also had ms and I know how much I did for her the last 10 years of her life, hoist out of bed, toilet, shower, feed, the works, she could do nothing for herself and I just think who’s going to be there for me if I get as bad as she was.
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Remind him to put the twenty in the post that he promised me when I wrote it @LucyAnnie 
Hi LucyAnnie
I don’t know how long you’ve had MS but there is nothing to say your MS will progress in the same way as your mum.
My younger sister has MS and was diagnosed years before I was and our symptoms/problems are not the same.
DMTs are much more effective these days in keeping relapses/progression at bay.
I do understand your worries I’m in a similar situation, married with no children.
My husband has had cancer twice and has had open heart surgery with a double bypass and valve replacement.
I had spinal surgery 18mths ago.
I’ve had family and friends die before me and I truly believe you need to live your life as best as you can , enjoying what you can now.
No one knows what tomorrow may bring.
We travel as much as we can , go to gigs and the theatre , go out for meals and treat ourselves as much as we can.
We’re spending our savings and private pensions having both worked for over 40 years each with 5/6 years until we hopefully reach state pension age.
I wish you and your husband all the very best . Take care
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Oh claret57 it looks like life as dealt both you and your husband a cruel hand. Well done for managing to carry on and enjoy your life. I admire you for that. But thank you for sharing your story, I really should try and life a bit more like you. All the best to you and your husband, hope you’re both through the worst of it.
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