What if I can't find the additional carers the Occupational Therapist has requested for my mother?

MarySpindleberry

New member
May 10, 2024
9
0
My mother is in very late stage of dementia. She's been bed bound for about a year, cannot speak or comprehend, cannot move herself, is double incontinent, cannot eat but has syringes of juice and complan and fruit smoothy drinks. She's on patch painkillers and liquid antibiotics. After a recent stay in hospital (went in for a hip xray but got an lung infection that kept her in for a week) the GP has written that no more hospital admissions and she's had a DNR in place for a while now.
In all her quality of life is so abysmal I wouldn't allow my pets to suffer it if they were in her position!. It is also heartbreaking and bewildering for my father (senile) to see my mother, his wife of 69 years suffering like this.
The occupational therapist has just called. She said as Mum's "grade 4 pressure sore is not healing she now needs Roller Cushions to position her on alternating sides so the ulcer isn’t touching any surface for parts of the day".
She said this means we need an extra carer coming to help the live-in turn Mum at 7.30am and 10pm as the length between re positioning would otherwise be too long with Roller cushions.
At the moment as well as the live-in housekeeper (who isn't qualified to change or clean mum), Mum has two carers who visit at 9am, 11.30am, 2pm and 6.30pm to feed, change and wash her. She has an NHS motion bed (forgotten it's proper name) and has two district nurses who dress my mother's bed sore daily.
The live-in housekeeper's job is to housekeep and prepare meals for my 94 year old father and to keep him from trying to "help" my mother. She does help feed my mother with drinks.
My question is that the Occupational Therapist has asked that we get a carer for 7am and 10am to move my mother with the live-in helping. But the live-in's hours start at 9am and she finishes at 9pm so we would need another 2 carers and unfortunately the OT has given no advice or info on where we might find or fund these extras that would only be needed for, at most 10minutes each visit to move my mother slightly.
It was nigh on impossible to find the carers we currently have and funding them all is currently over £12,000 pcm so at this rate it's a struggle to pay for "normal" household bills, food for my father who needs his money to pay for hopefully many more years for him not to be left in the lurch when he needs more care.
So far I've phoned goodness knows how many carers from a list the Adult SS gave me - none of whom can help so what now?
I'm overwhelmed with it all and can't face phoning any more to just to hear rejection.
What happens if I simply can't find carers because there are none? Is there any other methods the Occupational Therapist can use to help my mother's bed sore. It won't heal - the GP has already said her body is too frail to mend any infections now.
We thought we were at the stage of getting the end of life hospice carer in last week but Mum perked up slightly so the lady won't be moving in just yet. I wish she was.
Any any any advice would be so comforting to hear in this ghastly ghastly cruel mess.
Thank you.
 

Sonya1

Registered User
Nov 26, 2022
234
0
What a difficult and heartbreaking situation for you all... may I ask is it imperative that your Mum remains at home? The (excellent) nursing home my father is in would cost around half of what you currently pay out each month, and I assume (hope) your Dad's live in housekeeper doesn't charge you anywhere near that much! I suggest that you look into applying for Continuing Health Care (CHC) funding for your Mum too, because this can be granted, if eligible, in any setting. In brief, it is not means tested in any way and eligibility is determined on nursing need, complexity of need and so on. If it is thought, and confirmed by your GP, that your dear Mum may be at 'end of life' (ie. anticipated to pass withing 6 months or so) then application for this funding can be fast tracked. Ultimately if you were successful, then the NHS would fund all of your Mum's care costs, as well as being responsible for sourcing and overseeing all necessary staffing and so on. Assessment is normally across 12 domains, including things like skin integrity, nutrition, social and emotional needs, mobility, behaviour, cognition, toileting etc. I myself phoned the superb helpline staff on here, they talked me through many things and sent me all the information which helped us so much with the process. Definitely worth a try, because so much more monies could be left for your Dad to manage when the time comes . Hope this is helpful, I have rambled rather I'm afraid!
 

MarySpindleberry

New member
May 10, 2024
9
0
Thanks so much Sonya1. Yes, the agency that supplied the housekeeper arranged the CHC assessment a few months ago - unfortunately my mother wasn't eligible but having dissected the outcome my sibling found errors and discrepancies and sent in an appeal. Yesterday she was given a date for a telephone hearing. But reading so many stories of how difficult it is to get I don't hold much hope for it at all.

It is really important that my mother is allowed to stay in her own home with her husband, my father. They haven't been apart for those 69 years (apart from the hospital stay a few weeks ago which almost finished them both off). It is their wishes and me and my siblings, their GP and everyone think that is best for them.

I guess I need to ask the OT further questions and for any alternatives. When I heard her request I went into blank panic mode as I know from finding the current carers years ago that where they live (small rural village) carers are like hens teeth. And I did think all was as "good" as it could be and that next stage would be the end of life lady moving in but, no, brand new nightmare.
 

Sonya1

Registered User
Nov 26, 2022
234
0
Thanks so much Sonya1. Yes, the agency that supplied the housekeeper arranged the CHC assessment a few months ago - unfortunately my mother wasn't eligible but having dissected the outcome my sibling found errors and discrepancies and sent in an appeal. Yesterday she was given a date for a telephone hearing. But reading so many stories of how difficult it is to get I don't hold much hope for it at all.

It is really important that my mother is allowed to stay in her own home with her husband, my father. They haven't been apart for those 69 years (apart from the hospital stay a few weeks ago which almost finished them both off). It is their wishes and me and my siblings, their GP and everyone think that is best for them.

I guess I need to ask the OT further questions and for any alternatives. When I heard her request I went into blank panic mode as I know from finding the current carers years ago that where they live (small rural village) carers are like hens teeth. And I did think all was as "good" as it could be and that next stage would be the end of life lady moving in but, no, brand new nightmare.
I'm really sorry to hear your first application was unsuccessful. Definitely reapply if you feel it's likely that your Mum's GP might support you with the 'end of life' pathway. Also if the grade 4 DTI wasn't present at the time of your first assessment, then it would now probably score very highly as a domain, especially if it needs 2 nurses calling daily. It makes me mad, that people of our parents' age are the ones who likely paid into the National Insurance/NHS right from it's inception and, because they have worked hard to provide for themselves, are seemingly punished for this by having to pay all over again when care is needed! Hopefully someone may come along with more helpful advice for you. I sympathise with the challenges caused by a rural village - we were in similar quandary when my Dad was still at home.
 

maggie6445

Registered User
Dec 29, 2023
1,802
0
My dad had a grade 4 pressure sore . The district nurse went into the care home he was in to dress and tend to it. I'd contact the OT and your GP and ask for the district nurse to do the pressure sore care . It's a medical need and they are responsible.
 

Jessbow

Registered User
Mar 1, 2013
5,879
0
Midlands
My dad had a grade 4 pressure sore . The district nurse went into the care home he was in to dress and tend to it. I'd contact the OT and your GP and ask for the district nurse to do the pressure sore care . It's a medical need and they are responsible.
They are, two go in every day to dress it.

The seem to be odd extra times- how flexible is the live in carer?
 

MarySpindleberry

New member
May 10, 2024
9
0
Thanks v much. Yes, 2 x District Nurses visit daily to dress the sore. It's on mum's sacrum. These 2 extra visits the OT has requested for 7am and 10am are because the OT wants to use some type of rollers in the bed now to reposition mum off the sore for periods of time and the 7am, 10pm is to shorten the time mum is in one position overnight. She hasn't specified anything else like what qualifications thi/these additional carers should have. But who will even want the job of 10mins at 7am, 10mins at 10pm. The live-in might be flexible- but she's from an agency so they will bound to want to supply an overnight carer which at best be £300 per night for a 20min job! I haven't slept. Was sick at 6am and I'm glad I can't phone any potential carers today as I fear I'll start crying and not stop.
Does anyone know of any other method of dealing with sores apart from using repositioning rollers (which sound like they'll cause mum's frail, osteoarthritis riddled hips more problems than help the sore). She already has a ripple electric mattress NHS bed Yes, it makes me furious that the NHS that they've diligently paid into from it's start but have, until 2022, not needed. Before all this my mother last needed to see her GP in 1964 when the last of her children was born (at home) - they have no record of her since then because my mother never wanted or needed medical help. I don't even know what type of carer to look for for this latest job - just people able to manoever a frail 5stone person or medically qualified skilled in moving etc? At least for end of life care we have been referred by the GP to an "care at home" end of life charity and the lady who will move in at the time has visited to see mum and introduced herself to dad.
 

Blissy

Registered User
Jan 29, 2023
174
0
This is an awful situation for you to be in and appalling that in what should be a caring society the elderly, who have as you say, paid into the NHS all these years cannot get the help they now need. The more I read on this forum the more I dispare. I hope you find some help soon.
 

MarySpindleberry

New member
May 10, 2024
9
0
An update and hopefully a solution. My sister told the live-in what the Occupational Therapist had suggested and the live-in said that she thinks the OT is a being a bit unrealistic and that it would be unhelpful to both parents to disrupt their good routine now - especially since Mum is so comfortable, sleeps and eats as well as can be expected and is happy when awake and they all go to bed at 9pm (so don't want more people coming in at 10pm waking everyone up again) and my father really needs his time to himself at 7am to spend pottering or sitting with mum without even more people invading their home in the early hours. The live-in is in her 70s and very experienced. She checks on Mum several times during the night even though she officially clocks off at 9pm. She's reassured us that she will ask the OT to show her and the other two carers how to reposition Mum with the rollers and between them all they will be able to cope with moving Mum more often than at present (not difficult as Mum is tiny, put up a fight, and is very light) without the need for more people. Feeling very fortunate to have such wonderful carers! Hope the OT will be satisfied. Onwards, I hope it's all calm again for a good long while!