Hello -what are top 5 practical things I can do to help,my wife

Hi all, I just found this site and signed up today. My wife was diagnosed 2 years ago with ppms (49). She has given up work. We have applied and recieved pip and esa. I work 9 days out of 10,at home so care isn’t much of an issue at the moment.

She uses a wheelchair outdoors, but can move in the house holding on everywhere and using a stick. We’ve practiced her getting up of the floor if she trips so she can manage that herself , if needed.

I’ve had a stairlift fitted, new wood floors downstairs, accessible bathroom and kitchen. We’ve ordered a walking frame. We have a new motability scheme car on order

She is on a clinical trial for ms and medication for bladder issues. We will move to a single story house after the trial ends.

Apologies for the long post , but are there any other practical things we can look at to make sure she has the best possible quality of life?

Also are there any groups for carers?

Thanks in advance

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Hi Simon
Sorry to hear how your wife has been stricken.

I’m 59, eventually diagnosed 16 months ago with what they assume to be PPMS after 8 years of being told it was something else, something curable with a major spinal op. Am slightly more mobile than your wife but recognise the stage she’s at. You sound very well organised and with resources available to make changes in your life already. I presume the changes you are planning have been agreed in conjunction with OT’s in the local Adult Social Care team? They would not only recommend changes to the property (aids and adaptations, moving and handling) but also the provision of care and where to source approved carers locally.

As time goes on, you may need help moving her and increased support when you’re away from the house. Others on here may be able to direct you to MS specific care but realistically, care is not medical it is about movement / transfer / hygiene etc. which is not so MS specific.

A couple of useful sites:
Living Made Easy
Carers UK

Graeme

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You definitely sound well organised but as Graeme says it’s worth getting OT and social involved if not already.
Julia

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Graeme, many thanks for your reply, I’ll definitely take a look at those resources.

We haven’t had any contact with the local adult services team (in fact that was new to me from your response, so again thanks), I’ll see what they have to offer.

I see you’re a prolific poster and I’ve found the posts of yours that I’ve read so far extremely helpful. Can I thank you for that.

We’ve never had to confront anything like this before and it’s such an eye opener just how much of a difference some help and guidance can be, and just how difficult it can be to find good advice.

Simon

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Hi Simon, you have given a lot of thought about how to make things as comfortable and as easy for your wife as possible. It is clear you love her very much.

A couple of things that have proven invaluable, I have a shower chair not stool, a bit big but really solid, I really feel safe in it. Also, I have a frame around the toilet, I thought I would hate it but it has been so useful. Oh and a perching stool, it doesn’t have a back support in which means it tucks under the work surface.

Sometimes the little things can be just as useful too.
I hope the trail goes well.

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Thank you @SimonEdwards. Just trying to share it around a bit!

To echo @Rogue, bathroom speccing has to be meticulous. I’m on my 5th day back in hospital with a cellulitis infection - again (there will be post coming up about it shortly). Anyway, it has brought me back in touch with the rudimentary but impressively functional ward or single room bathroom. Following the last spell here 3 months ago, we had already agreed to convert the en-suite to a wet room.

I know your post says you have an accessible bathroom but wonder if these little bits could help:

  • washbasin at seated / wheelchair level. For diplomacy we’re having 2 sinks at different levels!
  • grab handle level with front lip of basin but below it (bowl curvature etc.) It’s surprising once on the shower chair that you shuffle around the bathroom while sat on it, and pulling yourself towards the sink is better for the sink if you’re using a grab handle than the sink itself.
  • Proper sturdy handles either side of the toilet. Bolted to the back wall and with drop down legs carrying load to the floor rather than levering against wall. My loo is currently between bath and basin and sooner or later I’ll damage them as my legs are doing less of the work.
  • Subject to weight, consider reinforcing the floor! I’ve gained a lot of weight as mobility has dropped off and sitting on the loo is more of a freefall from standing rather than a controlled descent on a bad day.
  • You don’t need a special “Doc M” loo. Standard pan & cistern are fine.
  • Take out bath & shower and replace with a wet room floor. Contractors can buy specialist formers which impose the necessary fall lines on the floor and any chippy can marry up remaining floor level with the wet room section.
  • Re-hand bathroom door to open outwards. Makes messing about with floor levels inside the room a doddle.
  • Horizontal grab handles to 3 sides (at least) to the wet room area and possibly one vertical handle too.
  • Shower chair is a chair not a stool and should have 4 castors with switchable brakes. I have good upper body control and use an unbraked chair to spin around and wash all sides and move in or out of the water flow.
  • Consider carefully the choice of screen between the wet area (shower) and rest of the room. My wife wants a tempered glass screen but although aesthetically awful, I prefer a shower curtain as when on a chair, you can move the “wall” rather than moving round it. More significantly, running into a glass screen while spinning around in the shower on an unbraked chair could have serious consequences.
  • Diplomacy. For us the wet room is a. prolonged independence for me on all aspects of washing & toileting and b. a nice shiny new en-suite as the old one is looking decidedly tired

Clearly, we’ve not cleared up all the points… :open_mouth:

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Thanks all , some good ideas there.