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Big hello to one and all - Carers UK Forum

Big hello to one and all

Tell us a bit about yourself here.
Hi everyone Iv been a member for a while now but haven’t felt the need up until this point to post anything, however I occasionally read the forums posts just to see what’s going on, however at the moment I’m really stressed my wife had MS and her mobility has taken a sudden turn for the worse and is now much more reliant upon me. I know everyone is always saying your not a lone and I know quite a few Carers but this still doesn’t stop the feeling and thought of am I the only one. Btw I’m 47 yrs old and my wife 46. Apologies for need a bit of a ramble, J.
Welcome to the forum John - glad you've finally posted, if for no other reason than a problem shared is a problem halved :D

If you've been lurking then I'm sure you've seen that we have quite a few members caring for a loved one with MS so hopefully they will be along later to add their two pennyworth :)
Hi John, how is this affecting daily life? It sounds like this latest development is having a real effect on you. Can you pinpoint the worst way this affects you. Is it the way you feel about it, or the impact on you and what you have to do now which you didn't before?
Does she now need a wheelchair inside and out, or can she walk with difficulty? Does she have a mobility scooter so you can get out and about? I had a serious car accident (which wrote a Range Rover off!) and went from being able to walk 15 miles a day, to not even being able to walk 15 steps pain free, so I sympathise with your wife.
Yes, indeed, welcome. It often takes an 'illness event' (or whatever!) to trigger actual posting here, and it sounds like this is now the case with you, in respect of your wife.

I know MS is a 'fluctuating' condition, but is there reason to suppose that her new decline in mobility is likely to be permanent, or could she go into remission at some point? I appreciate it can progress very 'erratically' according to each individual, and can be more, or less, aggressive according to each individual.

I ask because if it is, sadly, a now 'permanent' state, a 'new normal' so to speak, then I think maybe it is timely to start thinking ahead to what impact it will have on both your lives.

Are you able to work currently? ie, is your wife's care needs such that you can still earn a living, or has she deteriorated to a point where that is, or will become shortly, not possible, as in, she will need increased level of care?

If that is so, then you are, or will be, facing a very major decision. Many posts on here concern carers who have, up until now, been able to keep their professional lives going, and their wages/salary coming in - but when their caree's care needs increase above a threshold, then that may not be 'easily possible'.

Giving up paid work to become a 'full time' carer - or, at the least, one that can qualify for carers allowance, which has a severe limitiation on how much you can then earn, or how many hours you can work (ie, outside of caring) - is SUCH a dramatic, impactful and often, grimly, irreversible decision, that great caution is needed before undertaking it. Often, we read here, the pressure to care is SO great that giving up work seems the 'obvious' thing to do - only for time to demonstrate the dangers and problems of that.

There is, however, no easy answer when care needs increase, so really the first step is a 'council of war' with your wife to thrash out the (limited) options, and decide which will be the 'least worse' for you as a couple (and with children???)

Above all, though, please don't make a hasty, kneejerk or 'emotionally driven 'instant' decision about giving up work, before thinking through the implciations very, very thoroughly (including, by the way, future eligibility for pensions!!!)
Thanks for yo your replies, my wife's health seemed to have deteriorated quickly over the last month or so, for a few years now she was managing to transfer herself from her chair independently, now she relies on me to help her move around with the help of a molift, were also in the process of having a hoist fitted, we live in an adapted bungalow and she uses a power wheel chair, I guess I'm just feeling the extra responsibility and the reality is hitting home, please believe me I'm not complaining I know things could be much worse.
I never thought for a moment you were complaining, but I know how sad it is when you can see a marked downturn in the condition of someone you love. . So, so sad.
I'm sure you feel that "it was never supposed to be like this" many times, grieving for plans which can now never happen. Maybe it's time for another "Needs Assessment" from Social Services, and Carers Assessment for you? What would help you feel OK about taking a few hours off for yourself?
Hi John,
I agree with the other posters, a problem shared is a problem halved. No one will think you are moaning, you are just stating how it is.
It's definitely time to have your wife's needs assessment updated to take account of her increased needs and your carer's assessment as you are having to give more support than before.