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What happens when mobility is lost? - Carers UK Forum

What happens when mobility is lost?

Share information, support and advice on all aspects of caring.
Multiple Sclerosis will very soon take the ability to walk from my wife. I can walk from our bedroom to the toilet in maybe 5 steps. It takes her 40+ shuffling movements. We both know that the MS is close to robbing her of the ability to walk.

But what happens then?

The MS Nurses have said to call 999. That's it. That is the total of the advice we have had.

The bedroom is upstairs. We have a stairlift. But ... what do we do on that day when she can't get up? Can't get out of bed? Can't use the stairlift.

No-one will tell us. We have no idea how to plan, how we need to cope.

Do you have any advice?

Thank you.
My mum, aged 87, living alone, lost her mobility in the summer of 2013. She could hobble around with a Zimmer frame until then. Mum went into hospital with urinary sepsis, but lost the use of her legs, she was too fragile all over. Now she is in a nursing home, after a prolonged stay in hospital. The biggest challenges are getting her in and out of bed, (both for using the bed pan and sitting in her recliner), bedsores (mum's skin is very fragile due to health problems) and bathing. Mum has always been very particular about hygiene, and had a rise and fall bath seat at home, but that required her to be able to stand, just for a short time. It sounds as though this would be a good time to ask Social Services to come and visit to do an up to date needs assessment for mum, an up to date Carers Assessment for you, and a referral to an occupational therapist. Much better to make plans in a non emergency situation. There are a number of people here who care for wheelchair using carees. I know they will be happy to share their experiences with you when they read your thread. Early evening can be a busy time caring for their loved ones, some usually come onto the forum as carees are sorted out for the night.
Much better to make plans in a non emergency situation
I have tried for so long to do this.

As my wife has MS, everyone says to ask the MS Nurses.
They say to call 999.
That's it.

I cannot carry her downstairs.
I cannot carry her upstairs.

I can set up the TV, her laptop and provide her with food, drink but ... yeah, using the loo, skin care, dealing with that bad day when she cannot move.

Not a single agency will help. No Social Services, no GP, no MS Nurse. No one.

I have no idea how to cope, what to do. Yes we will get through but why is there no-one who can come here and talk, listen, help? NHS? Hah. Nope.
Right then, time to take the gloves off! I am a thorn in the side of my Social Services Department. I make absolutely certain that they stick by the rules which are set by them, in their own policies; and set for them by the government. For years they tried to ignore me, they tried to punish me, but they had to give in. Social Services have a duty to assess your wife's needs, as she is disabled. They have a duty to assess your needs, as a Carer. Write to the Director of Social Services for your LA (not the local office) make a formal complaint, and ask the above to be done as a matter of URGENCY. Then Google NHS Continuing Healthcare, look at the "checklist" for this, and work out if your wife should be getting this. If you think the answer is "Yes" then ask your GP, in writing, to arrange an assessment. Send letters by Special Delivery (so you know exactly when the letters arrived) and staple the PO receipt to your letters. This shows you mean business, you'd be amazed how many difficult letters get "lost". Make sure you have an answerphone on 24/7. So many times I've been told that they rang me "but you must have been out". To which I reply they must have rung the wrong number then, as my answerphone is on 24/7. Ask for email replies rather than phone calls. Find out if there is a non council carers organisation in your area, like the Princess Royal Trust for Carers. They gave me advocacy support when I needed it. Hopefully, at least some of these will help.
Hi and welcome. There absolutely should be some support in place for when things get worse, even in an emergency situation. Please don't be offended because I know little about MS but have you been in touch with the MS Society Helpline? It's on their website. It mention talking to others with experience of coping or signposting you..at least they should be able to tell you what to do next. I pinched this from their site:
Call the helpline on 0808 800 8000.

You are entitled to a Carers Assessment and that's for you, your needs. It isn't always a simple process to get one and a lot depends on where you live but there is a legal entitlement to have one done, you just need to make a formal request-make sure you get the name of whoever you speak to though.

Is there any reason why the GP isn't helping, what do they have to say? Your wife's doctors and care team should be liasing with you. I know that the advice given by the MS nurses is the usual advice trotted out in the case of someone having a fall-don't try and pick them up. But that's in case of a fall, not if she needs to go to the loo or wants to move elsewhere in the house! they must have some ideas as to what needs to be done next, adaptations, caring support for you-which you should certainly be entitled to. I'm not sure how your wife would feel about that..hopefully she would understand that there will come a point when it will be impossible for you to manage without some outside help.

I can sense the depair in your post but you aren't on your own now. I'm sure others will think of points that I haven't considered and will chime in. :)
I would echo all the advice offered, you definitely need your local authority to assess both yours and your wife's circumstances.
Did you pay for the stairlift privately? You don't need to answer but I only ask if you did, as you may not have had a recent occupational therapy assessment done. An OT will help with aids and Adaptations and there will be an OT working as part of your local authority team. The OT can also advise on further supports as and when your wife's mobility deteriorates, at least it might reassure you to know what could be done when needed.
I was disabled in a car accident, happily after surgery I can walk properly again, but I went through a period when I could only get upstairs on all fours. My eldest son converted my garage into a wonderful bedroom for me, complete with en suite bathroom. Maybe now is the time to consider whether your current house is suitable, long term, for a wheelchair user? The Disabled Living Foundation have lots of useful information, which I used when deciding on the layout of my bathroom. It has an extra wide doorway, a higher toilet than usual, and the walls are ready for grab rails if I need them, etc. If your wife is spending longer periods in bed, she may need a "ripple" air mattress to prevent bed sores - which the NHS will provide. Your own health and age is an important part of this too. How practical is it going to be if your wife is upstairs most of the day? Will you now need separate beds? Might I suggest you write down all your concerns, and then work out the top priorities? They may well end up with different sections, housing issues, care help needed....whatever you like. However, when you see the GP, Social Services etc. you will be able to tell them very clearly what you need.
Many thanks for all the information!

I will show my wife this thread and we will make a list of things to do and then do them.
She had a fall last night and has broken her hip. So she's in hospital, will be having an operation to fix it. According to the admitting nurse she will be referred for all possible help from them. Not a way we had thought of but it's happened and now finally we might actually get some decent support.
I'm really sorry to hear that your wife has broken her hip. I hope the operation goes well. She should not be discharged until they have done full physiotherapy and occupational therapy assessments, which should include a visit to your home. Try to have a few early nights to recharge your batteries whilst she is in hospital.