My wife has SPMS and has recently been in hospital and was discharged last Friday… the care package was hopeless from the start and i have organised private care which doesnt start till May at the earliest.
I have been lifting my wife from chair/bed to wheelchair to loo for over 2 years now and its exhausting but ive battled on.
Tonight she had a fall in the bathroom and 999 were called, they have taken her to hospital again but im struggling to help on my own and she needs 24/7 care…
What happens now when they discharge here again ? She hates hospital and i understand that but i am beyond drained having to cope by myself…
Complain to the CEO of the hospital about an “unsafe discharge”. You will speak to a PA I expect, make it clear the proper discharge procedures must be followed, that you are unable to care any more. She needs an NHS Continuing Healthcare Assessment and 24/7 residential care.
The last O/T appointment was 2 days ago and i am still trying to understand what the purpose of that was ?
Has the hoist been delivered ? Yes
Have you been trained ? No, as its a 2 person job ?
Nothing else was achieved.
Can i ask how often you use the hoist on a daily basis ?
My wife isnt overweight but needs loo visits almost hourly… a catheter isnt suitable either for some medical reason which hasnt been explained to me.
In case this is relevant for anyone, my experience with a severely overweight caree: I paid for hoist training and a lady came over and I learnt it. It was a ceiling hoist. I couldn’t have moved him on a regualr basis and I was told not to use it alone, two carers would do it together, but in emergencies I did operate it. The problem with an overweight person is getting them into the sling. He would always remain sitting in the sling in his wheelchair for hospital visits. Once an ambulance had to brake hard and he partly slipped out, as a result of which we had to call another ambulance on returning home. Carers were not allowed to put the sling on unless he was on the hospital bed.
I can’t remember the details of the lady who gave hoist training. But this was a few years ago. If anyone wants me to look for those details, I might be able to find them.
After breakfast she goes from her bed to the commode and then back again.
Prior to lunch she is hoisted from bed to wheelchair.
Late evening from wheel chair to bed.
That’s four transfers in total.
The all day sling can’t be used for the commode, but is a real boon when it comes to transferring from wheelchair to bed without the need to fit a sling whilst she is in the wheelchair, it’s not that difficult, but definitely involves plenty of huffing, puffing and tugging.
She does have a catheter, so trips to the commode are limited by the need to open her bowels, which fortunately is very rarely more than once a day.
We were told fairly recently that she is not supposed to be in her wheelchair all day (there was a lot more involved in this discussion that would take too long to explain, but it was basically an arse covering/get-out exercise by Wheelchair Services). I calculated that to move her from wheelchair to armchair and back again for meals at the table would treble the four transfers to twelve, and increase my time spent hoisting from roughly forty minutes every day to two hours.
My wife needs muliple transfers during the day and night,at least 12 where each one involves 4 lifts. Its a crazy amount and i am constantly reminded i should not be doing it by NHS staff etc… but no alternative had been put in place.
The care package that started was worse than useless, late,didnt turn up,ran out of time etc
So i am reluctant to let my wife be discharged unless something appropriate is in place…
It just seems constant lip service from the so called caring professionals
David,
has your wife had investigations into why she needs to urinate so frequently? Does she take medication for this at night? Waking and needing the toilet so often can’t be good for either you?
How are the hospital coping with her need to use the toilet so frequently? Are they hoisting her every hour?
Her level of care is too much for one person. She needs residential care until/if a suitable care package is in place. She should not have been sent home, in the first place.
Has she been assessed for Continuing health care funding?
The free reablement care service that is usually in place when first coming home from hospital doesn’t operate to any set time for appointments - the first visit can be anywhere from 7:00 a.m to 11:15 a.m. and we definitely experienced the full range of that. The last visit of the day will be before 9:00 p.m. and most people don’t want to go to bed that early. The two visits during the middle of the day were just a waste of my time, having to be there but never knowing when they would turn up. We quite quickly dispensed with all but the first visit.
There is the option when the free care ends to continue with the same care service on a paid basis, but they still won’t give a time for any appointments. We were fortunate to stumble into a very good agency, they were the only one from a good half dozen I contacted who went out of their way to fit us in and I have to say that we are very pleased with the service, no complaints in three years. If you have a branch near you (there’s not many) then check them out. Good Oaks is their name.
Definitely stand firm on a suitable package being in place for when your wife is discharged - hospitals are only interested in freeing up a bed, and S/S are only interested in saving their employers money, to further that end, they will lie, cajole and deceive.
Never EVER believe anything you are told by a hospital about what will happen after discharge unless you have it in writing.
Do you want residential care now, or a lot more help at home. Continuing Healthcare should give you the option, if your wife qualifies.
Are you worried about residential care fees?
I dont think the cause has been investigated and she isnt on any medication to help…
I understand the hospital are using pads and bed pans as far as i am aware…
Social workers are now involved so i assume an assessment will be organised for funding ?
I am learning fast about the methods they are using to save money at my healths expense…
A social worker called today asking if i could make do until a private agency i have hired starts in May… that was met with a robust NO !!!
I have coped for many years and i cannot go on any longer…
With my wife being in hospital it is a form of respite for me too… i have managed to even sit in the sunshine today undisturbed for over an hour ! Unheard of previously…
I desperately need more help at home,i have struggled for long enough…
I will investigate Continuing Healthcare and see if my wife qualifies ? Is that based on savings ?
The GP needs to refer her for tests. Also, ask for an appointment with the incontinence service. If she wore pads at night, you might get some sleep.
Continuing health care (CHC) means free care regardless of your financial situation, do some research so you are well informed. It’s not easy to get - often described as a postcode lottery. Ask for a CHC assessment before she is discharged from hospital.
My caree needs me, but if others haven’t posted links, I’ll pop back later and post some.
If your wife needs care, but doesn’t qualify for CHC, then Social Services will do a means test.
As a VERY rough guide, if your wife has over £23,000 in her own name, or you have over £46,000 she will be expected to fund all her own care until you get down to those levels. The value of the house, even if it’s in joint names, will not be considered if you are over 60.
Talk to the Carers UK helpllne for a confidential chat about finance.
That is interesting, i was aware of the £23,000 figure and my wifes savings are a fraction of that. So thats good but we are both in our mid 50s and thought the house value was only looked at when residential care was being sought ?
Yes, house value only considered for residential care.
Your wife should now have a Needs Assessment looking at how much care she needs to live at home, to live independently. Care you currently provide is still care needed. You should then be given the option of Direct Payments, which you can then use to arrange yourself. If you would prefer one person for two hours every day, rather than a series of shorter calls, that would then be your choice.
