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Life changing relapse

Hi, this is my first post here despite caring for my mum for so many years now.

I’m 45 and Mum was diagnosed with MS 43 years ago, she tells me that very little was known about it back then and her treatment over the years has been inconsistent - the last 20 years or so she’s just plodded in with only Baclofen in her medicine pot to indicate she even has MS. 14 years ago my Dad left her and she moved in with my husband and very young family. There’s been a fairly rapid decline over the last decade, made worse by a fractured spine due to a fall 4 years ago and she is now in an electric wheelchair full time.

Last Friday I called an ambulance as she displayed the FAST symptoms indicative of a stroke. She was taken into hospital and is currently on the acute stroke unit but the team believe that she didn’t have a stroke and it’s a major MS attack. When I went in last night she was being fed by the nurses and turned 2 hourly. Both hands have curled in on themselves and neither leg has any feeling which, if things stay this way, will have a devastating impact on my ability to care for her at home due to having 4 children, a job and a smallholding full of needy livestock.

Our MS nurse has apparently resigned and not been replaced, I’m an only child (ex-nurse which probably makes things worse as my imagination is running over time) and I’m just feeling a bit lost and scared right now. Would appreciate any advice or tips anyone may have - thank you :slight_smile:

Oh what a dreadful situation for you. Does your mother have progressive MS now, or is she still in the relapsing remitting phase? (Do you know?) if she’s progressive, it could well be that she won’t get much better than where she is now. But if relapsing remitting, then a course of IV steroids might bring her back to where she was.

Whichever the outcome, I should think the time has now come that you need some help with her care. Regardless of the decision whether she’s to come back home with you immediately, or go for respite care first, or indeed full time care, Social Services should be able to advise you.

And however hard the decision is, it may well be the time now that you do need to think about full time care for her. The hospital should be able to advise as well. If her need for care is on medical grounds, then NHS Continuing Care may well kick in. This means that the NHS has a responsibility not only to place her in a suitable nursing home, but also to have it funded by the NHS rather than Social Services.

Whatever your solution, you also need to think about yourself and your family. Your needs should be equally as important as your mothers.

Sue

Thank you for your replies, sorry it’s taken a while for me to return to the forum.

I actually don’t know which stage of MS she is in currently but intend to ask the consultant she is now under. She has been transferred for rehab at the local cottage hospital and, from past experience, the communication is very good there and the doctors slightly more accessible to relatives than in the acute setting.

Mum is self funding for her care, she has a carer each morning and I put her to bed at night and deliver any care needed during the day. Still hasn’t had the use in her hands/arms return and she is being hoisted into bed/chair now whereas before she could stand on a mo lift turner.