Advice/support welcome!

Hello all, I have had ms for around 25 years (now secondary progressive) and my symptoms seem to be galloping away creating lots of fast growing problems, like pain, lack of mobility, vision to name but a few. I suppose what I need advice about is forward planning. Am I being naive thinking that forward planning is even possible? I am lucky, I have got a wheelchair, wet room etc, but my concern is that as my mobility, energy, thinking etc seem to be flying out the window so quickly how do I plan to reduce the burden from my wife and reduce the stress on my (sort of!) grown up kids? At what point should I think about perhaps going into a care home, while I still am functioning or when the decision is taken from me? Any thoughts would be welcome, magic bullets especially so! Thanks for reading, keep well all, gorry

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Talk to your wife - im sure she doesnt view you as a burden. Do you have respite breaks? that would give you both a break.

Tough question. In my opinion you should speak with your wife, family, friends and health professionals. There will be no hard and fast answers but you will gather feelings an opinions that will expand your views and options. Try to think what you might advise if you were helping a family member or friend.

Good luck


excellent post - not much wrong with your thinking!

There is a level of disability beyond which I would find things intolerable - I don’t want to go into a care home - I think I would end it all.

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Hi gorry, when I read your post, I found myself saying ``Oh crikey!`

Is this how you see your future…possibly in a care home? Does your wife agree or even know what you are thinking?

I can relate to you in many ways. I have had PPMS for 23 years. I have no mobility, no weight bearing ability, need carers/hubby for all personal care, transfer using ceiling hoists, have an SPC, which district nurses change at home, every 4 weeks, I sleep/rest in a hospital profiling bed as I cannot sit up on my own, need turning in bed as I cant do it.

My progression was really fast…within 2 years I needed a wheelchair.

I do sometimes feel a burden but I have 2 great carers coming in twice a day to get me up and ready and to put me back to bed.

I have 47 hours of care a week, which includes 2 sleepovers. This gives my hubby a break from caring for me.

He has said he doesnt see me as a burden at all, but I do feel that way if he is doing something and I need his help. He can snap at me, but says he doesnt mean to.

We have talked about me going into a care home and he really doesnt want that. But if I were to lose him, things might go that way.

My carers have said they believe I should have more care at home. ie and not in a care home as they wouldnt want their mum in a care home…you have little choice about anything.

I feel you are panicking about this and need to take a deep breath and talk to your wife. Do you have any outside care coming in now? Would you think about it? You can have a care assessment from Social Services.

I pay for my care with Direct Payments and pay ÂŁ40 a week towards it.

If you would like to ask me about anything, please do. I would like to help if I can.