After reading so many helpful threads on here I figured I would be stupid not to join in
I am caring 24/7 in our bungalow for my 62 yr old wife who has SPMS now after about 10 years of RRMS. Things are an ever-changing challenge and after a downturn in capacity in the last year or so, we have admitted that we can no longer cope/ ‘do the ostrich’ - and instead have looked to ‘turn on’ all the available help we can find (GP, MS Nurse, Meds, OT etc)
The current big issue is how to progress with installing in our bungalow a flat-access wet room and a change to the current tiny separate toilet (poor wife got trapped in it (after a fall) for nearly 4 hours until ambulance attended last week)…The OT has assessed and approved in principle the wetroom, but the toilet issue has been kind of ‘shrugged off’ by her. And whilst we are probably going to have to fund or part fund (though not well off!) we are not sure if it is worth waiting for the OT / council waiting list/ ‘process’, or if we would be better served in (somehow) doing it ourselves.
Anyway, I will be back with more questions and seeking your wisdom in time.
Take care all and please look after yourselves!
I think different councils work in different ways. I did a maternity cover job at our local council a few years ago involved in facilitating disabled facilities such as wet rooms etc. (I had worked as an architect for many years so was rather over-qualified for the roie!) There we’d do all the necessary work at the same time. It would make sense to do the toilet at the same time as the wet room. Restrict builders disturbance to the one time!
Why did the OT shrug off any work to the WC? Does the door need rehanging outwards, or door widening, or raised WC, or grab rails? Or structural alterations to walls? Is it that it is not feasibly possible, or did she just think your wife didn’t need any alterations?
The OTs called the shots on what work should be done (well, what they will pay for under the grant). I think you are best finding out why the OT didn’t include the WC as your first move. It may be they need to get a technical person to look at the layout and house structure to see what alterations are possible (that was the type of work I did for the council). If your council is anything like the one I worked for, then communications with the clients were not great so clients often were kept unecessarily in the dark! We’d have gone bust as an architeect’s practice if we’d had such poor communications with clients!
If she has decided it isn’t necessary (but you think it is) then try to get them to give you a price for the work from the contractor who will do the wet room for you.
Also try to get them to give you a rough idea of the time wait. Currently in many parts of the UK builders are overworked and have long waiting lists so it might not be quicker than waiting for the council. The councils do usually do a cursory check that the work is to a suitable standard before paying the contractor so that can be reassuring to those with previous poor experience with builders.
The Toilet fall highlighted the oversight on the OTs part (I think she felt a commode would do) - we would need to either cram a new toilet into the proposed small wetroom, or they would have to remove a wall or rotate the toilet somehow?, or combine the toilet room with the wetroom via the dividing hallway…Typical 1960s build bungalow!
Its all new to us so we are kind of trying to work it out as we go!
The OT reply was simply “Unfortunately, I have sent the recommendation over for authorisation. I think you can discuss this with the housing team when they are ready to process the application at that point.”
I was kind of expecting that she would review and represent the situation as it now stands?
So the toilet fall happened after the OT’s visit?
Yes discuss it with the housing team. Toilets were often included in the wet rooms that we did where there was space. Hopefully they will figure out a solution for you both.
Hi CaterinaW here This is my first posting although I have had the dreaded MS for 2
8 years. Up until last few years I have been reasonably mobile but RRMS now SPMS. we have just spent most of our savings having our bungalow converted to make things easier for me and husband. we have learnt alot in the process so happy to share. One of our 2 bedrooms is bigger and I have a wet room, wash and dry toilet and sink that can be moved up and down. We extended the house by about 12 feet to achieve this It was a big job. happy to answer any questions
Hi all. Sorry for long time replying - been very hectic!
The OT in this case revisited and reviewed and will be setting up a new case altogether (noting that its actually a revision). So we are back to square one waiting for some updates.
In frustration we removed our small shower enclosure doors and their associated lower rail to try and lower the access for the wife to ‘have another go’ but her leg gave out and she fell trying to get in - resulting in a twisted and swollen ankle to make her already weak leg worse! Subsequently we had to postpone a first assessment with the neurological rehab physio by two weeks. And this time In the absence of the awaited Eagle ‘inflatable floor/sitting up’ machine, I used a cheapish used bath lift in the same way (to get her up to sitting position from floor).
And in the absence of the awaited transfer sheet (for moving person to better floor space for sitting up machine) I got a cheap hammock made of parachute nylon…yet to be proven!
The list of ‘referrals’ that have gone nowhere is lengthening…including continence, wheelchair, falls team…
My wife has basically become house bound by all this and neither of us are going anywhere…
Stay well out there good people