MS, options for care.
Discussion
Not sure if this is a post looking for help or to vent, but here we go.
My sister has MS, it's progressing quite rapidly as she's now wheelchair bound at 42. She's been getting a lot of nerve pain, enough to stop her sleeping. It's mainly in her face and has been prescribed diazepam.
She lives alone (her husband drank himself to death about 4 years ago, he was 43 at the time), so last night my wife spent 2.5 hours attempting to lift my sister off the bathroom floor where she'd fallen, it appears that the diazepam has removed even more of the limited control she had previously.
I'm currently sat on an oil rig in the North Sea 2 weeks through a 3 week trip so there's not a whole lot I can do from here. I've taken a little time out to get my s
t together.
Looking realistically at options I don't think she can continue to live alone for much longer, I think a care home is about the only option left. I work offshore for half the year and my wife travels a fair bit for work
My sister doesn't have any sort of home help, I'm not sure if it would be feasible? Would they be able to wash her etc in her own home?
She doesn't want to go into care as my mum also had MS and it was fairly unpleasant all round when she went from assisted living to the care home as she ended up in her room alone for most of the time. I think my sister is approaching the stage my mum was at when she left assisted living.
So. Questions.
My sister is going for an operation to numb the nerves in her face, does this mean she can stop some of the other stuff and possibly regain a little control?
I reckon that hiring a home help to get her up in the mornings and to bed at night would cost in the region of £1500 a month, I can afford this for a while. Would this affect the possibility of the council providing one?
She was talking about trying to get medical cannabis to stop some of the symptoms, but they won't prescribe and it's expensive. I suggested just buying cannabis and making brownies. I take it that the end result would be much the same? If I was stuck in the house myself all day I think I'd rather be stoned.
Any other suggestions?
My sister has MS, it's progressing quite rapidly as she's now wheelchair bound at 42. She's been getting a lot of nerve pain, enough to stop her sleeping. It's mainly in her face and has been prescribed diazepam.
She lives alone (her husband drank himself to death about 4 years ago, he was 43 at the time), so last night my wife spent 2.5 hours attempting to lift my sister off the bathroom floor where she'd fallen, it appears that the diazepam has removed even more of the limited control she had previously.
I'm currently sat on an oil rig in the North Sea 2 weeks through a 3 week trip so there's not a whole lot I can do from here. I've taken a little time out to get my s
t together.Looking realistically at options I don't think she can continue to live alone for much longer, I think a care home is about the only option left. I work offshore for half the year and my wife travels a fair bit for work
My sister doesn't have any sort of home help, I'm not sure if it would be feasible? Would they be able to wash her etc in her own home?
She doesn't want to go into care as my mum also had MS and it was fairly unpleasant all round when she went from assisted living to the care home as she ended up in her room alone for most of the time. I think my sister is approaching the stage my mum was at when she left assisted living.
So. Questions.
My sister is going for an operation to numb the nerves in her face, does this mean she can stop some of the other stuff and possibly regain a little control?
I reckon that hiring a home help to get her up in the mornings and to bed at night would cost in the region of £1500 a month, I can afford this for a while. Would this affect the possibility of the council providing one?
She was talking about trying to get medical cannabis to stop some of the symptoms, but they won't prescribe and it's expensive. I suggested just buying cannabis and making brownies. I take it that the end result would be much the same? If I was stuck in the house myself all day I think I'd rather be stoned.
Any other suggestions?
I would try speaking with these people
You should also speak to the council community care team and arrange an assessment. You don't need to take them up on a care package, but your sister going into a home from being quite independent is a large step to make..
I have no thoughts on self-medicating with cannabis, but research it thoroughly before making a decision.
You should also speak to the council community care team and arrange an assessment. You don't need to take them up on a care package, but your sister going into a home from being quite independent is a large step to make..
I have no thoughts on self-medicating with cannabis, but research it thoroughly before making a decision.
Hey. I'm gonna introduce me then take you on a little tour of Meece Towers (which should possibly more properly be called the Meecehole, but hey).
Yo. I'm Raf. I'm 31, Quite Disabled and I live on my own. (Apologies for the silly sporting photo, there aren't any sensible ones anywhere easy to find and I can't be bothered hunting.) These two are two of the team of personal care assistants who make that possible.
I use a powerchair to get around, and a hoist to move from chair to bed to loo to armchair to… you get the idea.
So, occasionally, does my cat.
The house is a purpose-built bungalow in an area of ?1990s housing that replaced the slums in Hulme. There's a gentle ramp from street level up to the front door, although most people don't notice that's there. Electric door opener, controlled either by a switch on my armrest or a big one mounted on the wall near the door, lets you in.
Because it's purpose built the corridor's that bit wider than usual. I'm not sure you can tell but I've certainly chewed up less paintwork with the chair in here than happened in my previous place.
The kitchen ain't fully adapted because my hands aren't up to cooking, but I can flick the kettle on if it's been left with water in it, investigate what's in the fridge or the top drawer of the freezer and so on. One of the cupboards is entirely full of medication and supplies.
The second bedroom is small and boring but has a moderately nice bit of garden outside and that's where those personal care assistants lurk when they're not doing hands-on stuff. Single bed, comfy chair, desk, a drawer each in a chest of drawers so they can leave a few bits here if they want. The ones most similar to me will sometimes come and join me if I'm watching something we're both interested in, or if it's a really rough day they tactically hang out too.
Main bedroom, mine, is a double-sized room but contains a profiling single bed - this means being sat up, or exactly the right height for any given helper to help, (or for those that can, just the right height to stand up) is a button-press away. There are profiling beds which can lower to almost floor height, which usually do one of two jobs: preventing attempts to stand/'escape' from someone who doesn't understand that they can't, and providing an easy route back to uprightness for someone who, if they fall, can crawl or bum-shuffle but not get back up unassisted. The really interesting bit is attached to - or through - my bedroom ceiling.
That's a ceiling-track hoist. It covers a rectangular area of most of my bedroom, then joins onto a straight bit crossing the corridor, and into the bathroom which is covered completely by another rectangle.
With this sort of setup anyone can be helped to get around BY any one helper, and indeed some people do it themselves, although for obvious reasons safeguards are needed if you're doing that.
My bathroom's a wet room and contains a clos-o-mat toilet (which provides a bidet-type wash and a blow dry if you ask it to
and occasionally a surprise if you forget and knock the switch 
), a big roll-in shower area with a supportive shower chair and a fold-down bench which can be used to have a lying-down shower or to get dried and dressed on if that's preferred to doing it on the bed.
The living room is open-plan and has various things at wheelchair-user height, lots of little adjustable tables, and a supportive specialist armchair, which gets trundled into the corridor and under the hoist track to get in and out of it.
Your sister doesn't need a nursing home (I lived in one for 9 months when I became this disabled, it was st). She does need an assessment of need from the council, both in terms of equipment/environment (an occupational therapist or other staff member from what round here is the Equipment and Adaptations Team) and human support (a social worker from what's likely to be called the Physical Disabilities Team, although YMMV).
Her ability to contribute towards the cost of her care may be assessed, there is nothing to stop you from contributing extra to the kitty if you wish although I caution against running through either of your reserves too fast. It may be that the occupational therapist is happy that they can get your sister's place set up well enough to meet her needs at present and for the medium term, or it may be they suggest moving to somewhere either already adapted or adaptable. Sheltered housing for under-pension-age adults does exist, but it often turns out to be a bit restrictive in terms of, especially, having choice of who supports you (essential if you're needing a lot of it, my care package includes sleepovers so it'd be disastrous if someone wasn't reasonably compatible, agency care did not work at all well for that reason) as well as obviously being stuck with your neighbours, sometimes dubious tenancy rights etc.
If you, or your sister, would like to talk things through more, please feel free to drop me an email. She should also get in touch with the MS Society - she is far from the only one in a similar situation and they are likely to have condition-specific resources available.
All the very best.
EDIT: what the fk, why am I upside down?! The pic I uploaded was not upside down. This is very confusing. 
Yo. I'm Raf. I'm 31, Quite Disabled and I live on my own. (Apologies for the silly sporting photo, there aren't any sensible ones anywhere easy to find and I can't be bothered hunting.) These two are two of the team of personal care assistants who make that possible.
I use a powerchair to get around, and a hoist to move from chair to bed to loo to armchair to… you get the idea.
So, occasionally, does my cat.
The house is a purpose-built bungalow in an area of ?1990s housing that replaced the slums in Hulme. There's a gentle ramp from street level up to the front door, although most people don't notice that's there. Electric door opener, controlled either by a switch on my armrest or a big one mounted on the wall near the door, lets you in.
Because it's purpose built the corridor's that bit wider than usual. I'm not sure you can tell but I've certainly chewed up less paintwork with the chair in here than happened in my previous place.
The kitchen ain't fully adapted because my hands aren't up to cooking, but I can flick the kettle on if it's been left with water in it, investigate what's in the fridge or the top drawer of the freezer and so on. One of the cupboards is entirely full of medication and supplies.
The second bedroom is small and boring but has a moderately nice bit of garden outside and that's where those personal care assistants lurk when they're not doing hands-on stuff. Single bed, comfy chair, desk, a drawer each in a chest of drawers so they can leave a few bits here if they want. The ones most similar to me will sometimes come and join me if I'm watching something we're both interested in, or if it's a really rough day they tactically hang out too.
Main bedroom, mine, is a double-sized room but contains a profiling single bed - this means being sat up, or exactly the right height for any given helper to help, (or for those that can, just the right height to stand up) is a button-press away. There are profiling beds which can lower to almost floor height, which usually do one of two jobs: preventing attempts to stand/'escape' from someone who doesn't understand that they can't, and providing an easy route back to uprightness for someone who, if they fall, can crawl or bum-shuffle but not get back up unassisted. The really interesting bit is attached to - or through - my bedroom ceiling.
That's a ceiling-track hoist. It covers a rectangular area of most of my bedroom, then joins onto a straight bit crossing the corridor, and into the bathroom which is covered completely by another rectangle. With this sort of setup anyone can be helped to get around BY any one helper, and indeed some people do it themselves, although for obvious reasons safeguards are needed if you're doing that.
My bathroom's a wet room and contains a clos-o-mat toilet (which provides a bidet-type wash and a blow dry if you ask it to
and occasionally a surprise if you forget and knock the switch ), a big roll-in shower area with a supportive shower chair and a fold-down bench which can be used to have a lying-down shower or to get dried and dressed on if that's preferred to doing it on the bed. The living room is open-plan and has various things at wheelchair-user height, lots of little adjustable tables, and a supportive specialist armchair, which gets trundled into the corridor and under the hoist track to get in and out of it.
Your sister doesn't need a nursing home (I lived in one for 9 months when I became this disabled, it was s
t). She does need an assessment of need from the council, both in terms of equipment/environment (an occupational therapist or other staff member from what round here is the Equipment and Adaptations Team) and human support (a social worker from what's likely to be called the Physical Disabilities Team, although YMMV). Her ability to contribute towards the cost of her care may be assessed, there is nothing to stop you from contributing extra to the kitty if you wish although I caution against running through either of your reserves too fast. It may be that the occupational therapist is happy that they can get your sister's place set up well enough to meet her needs at present and for the medium term, or it may be they suggest moving to somewhere either already adapted or adaptable. Sheltered housing for under-pension-age adults does exist, but it often turns out to be a bit restrictive in terms of, especially, having choice of who supports you (essential if you're needing a lot of it, my care package includes sleepovers so it'd be disastrous if someone wasn't reasonably compatible, agency care did not work at all well for that reason) as well as obviously being stuck with your neighbours, sometimes dubious tenancy rights etc.
If you, or your sister, would like to talk things through more, please feel free to drop me an email. She should also get in touch with the MS Society - she is far from the only one in a similar situation and they are likely to have condition-specific resources available.
All the very best.
EDIT: what the f
k, why am I upside down?! The pic I uploaded was not upside down. This is very confusing. Edited by FlyingMeeces on Tuesday 11th July 08:42
Thanks for the replies, my sister has been moved into hospital for the time being as the doctor that came out suggested she needed some respite care.
Hopefully this will allow her to recover enough to go back to living in her house.
She's now going through more assessments to see about getting help in the mornings and evenings at least. I'm not sure why this hasn't happened before, it may be that my sister was being belligerent rather than any failing of the care services.
I don't think her current house would be able to get the hoists etc as the ceiling height may be an issue.
My mum lived in sheltered housing for a few years that was purpose designed, hopefully that will be an option. As far as I understand it she would need to get rid of her dog which would be a sticking point.
It's hellish having gone through this with my mum until she passed in 2009 to now watch my sister go the same way.
Hopefully this will allow her to recover enough to go back to living in her house.
She's now going through more assessments to see about getting help in the mornings and evenings at least. I'm not sure why this hasn't happened before, it may be that my sister was being belligerent rather than any failing of the care services.
I don't think her current house would be able to get the hoists etc as the ceiling height may be an issue.
My mum lived in sheltered housing for a few years that was purpose designed, hopefully that will be an option. As far as I understand it she would need to get rid of her dog which would be a sticking point.
It's hellish having gone through this with my mum until she passed in 2009 to now watch my sister go the same way.
Speed addicted said:
Thanks for the replies, my sister has been moved into hospital for the time being as the doctor that came out suggested she needed some respite care.
Hopefully this will allow her to recover enough to go back to living in her house.
She's now going through more assessments to see about getting help in the mornings and evenings at least. I'm not sure why this hasn't happened before, it may be that my sister was being belligerent rather than any failing of the care services.
I don't think her current house would be able to get the hoists etc as the ceiling height may be an issue.
My mum lived in sheltered housing for a few years that was purpose designed, hopefully that will be an option. As far as I understand it she would need to get rid of her dog which would be a sticking point.
It's hellish having gone through this with my mum until she passed in 2009 to now watch my sister go the same way.
Most local authorities are so desperately cash-strapped that you need to push a bit before you get anything, even assessment. Hopefully this will allow her to recover enough to go back to living in her house.
She's now going through more assessments to see about getting help in the mornings and evenings at least. I'm not sure why this hasn't happened before, it may be that my sister was being belligerent rather than any failing of the care services.
I don't think her current house would be able to get the hoists etc as the ceiling height may be an issue.
My mum lived in sheltered housing for a few years that was purpose designed, hopefully that will be an option. As far as I understand it she would need to get rid of her dog which would be a sticking point.
It's hellish having gone through this with my mum until she passed in 2009 to now watch my sister go the same way.
You can get lots of different kinds of track hoist, including several that are supported by posts which brace against the walls and don't involve the ceiling at all - a few examples here. I've had a couple of holidays on a narrowboat with a track hoist!
There are also mobile hoists, which look and work exactly like engine hoists, and which include folding models that are small and light enough to go in the boot or back seat of a car. Unlike track hoists, where it is merely unwise, it is absolutely impossible for the user to use a mobile hoist alone, but they're amazingly useful for the flexibility, can with care be used to help someone into a car even, and great for quickly and safely getting someone off the floor if they've fallen without needing to involve a load of extra pairs of hands.
I'm so sorry, it must be very rough. Can only imagine how your sister must be feeling.
The trend towards younger adults being supported in their own homes should work in her favour - she has every right. Later on, if she needs someone there all the time, there are ways to achieve that too. There are some major false economies in some sheltered/group setups, in my place you could tick the box for 'care always available' on the outside but the reality was that it was so understaffed that I'd have had more and better care if I'd been sat alone in my own place receiving three hour-long 'calls' a day from the council. It did not come close to round the clock care and at one point I went weeks without a shower because the nursing home rules said they had to use two members of staff for hoisting (in the community it's pretty much universally done with one, as long as there's a track hoist) and they were just that understaffed. I went for months without going out other than into an ambulance.
If it comes to it, the Cinnamon Trust may be able to help with dog arrangements, although I definitely know at least one person in sheltered housing with a dog.
Speed addicted said:
I'm not sure why this hasn't happened before, it may be that my sister was being belligerent rather than any failing of the care services.
What you'll find is that many people in this situation get along by following the mantra 'we'll wait and see'. They wait until a crisis arises and a decision cannot be avoided, then they feel the pressure and have to act in haste.If your sister owns the house, get a valuation and look for more suitable accommodation. Maybe look at getting the dog fostered nearby or looked after by a friend / relative. It's all about opening up your options and then choosing the most suitable for your sister's situation.
The energy spent now, will be recouped later..
In leicestershire I've found that the combination of Social Services/occupational therapy etc to be very good. I don't remember which came first but one easily led to another.
Although they are certainly short of money I get 2 visits a day (1 in morning and 1 at tea time), an electric plus manual wheelchairs, an elecrically adjustable bed, a foot lifter to enable me to get into bed, ramps to enable access to the housem and a host of other little things.
None of this is means tested and so doesn't cost me a penny.
The point is that although it may be difficult to know where to start, there is help out there.
As for washing and showering, agencies will happily do this. I haven't taken advantage of this although there's a couple of the better looking careers that I m tempted to ask
Incifdentally, I have ms as well.
I don't know about cannabis, although I do know people who swear by it, or the operation, sorry.
Although they are certainly short of money I get 2 visits a day (1 in morning and 1 at tea time), an electric plus manual wheelchairs, an elecrically adjustable bed, a foot lifter to enable me to get into bed, ramps to enable access to the housem and a host of other little things.
None of this is means tested and so doesn't cost me a penny.
The point is that although it may be difficult to know where to start, there is help out there.
As for washing and showering, agencies will happily do this. I haven't taken advantage of this although there's a couple of the better looking careers that I m tempted to ask
Incifdentally, I have ms as well.
I don't know about cannabis, although I do know people who swear by it, or the operation, sorry.
Edited by stuartmmcfc on Tuesday 11th July 09:56
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