Unsure what help is available

[Frustrated1974]

DF has been released from hospital using a walker in the house and has limited use of his left hand side. He’s also been left unable to move in and out of bed independently. He has been referred for investigations into urinary incontinence and needs the loo 5+ times a night. DM is expected to deal with this at nighttime and carers come in twice a day to help him get washed and dressed. I’m doing what I can during the day to help give DM a break but I can’t at nighttime. Where do I start looking for help? What should I even be looking for? Is it reasonable for DM to be left to care for DF overnight when he’s like this?

Did he have an OT and PT assessment before discharge? He shouldn't have been sent home without discussion of care needs. I assume the twice daily carers are a result of this but if not and he has been discharged without an assessment of current needs and they've changes since his pre-admission needs, I'd contact the hospital first.

Adult social services can also arrange an assessment of updated needs. If he has more than £23,000 in savings (including half of any savings in joint names but not including the house value) he'll need to self fund but social services can help you find agencies.

If he's needing night care, he should be able to claim higher rate attendance allowance regardless of income and savings.

We have experienced similar problems recently with MIL but she lives alone. After being called through her lifeline multiple times after falls and us having to drive over and pick her up. At the last fall, I hurt my back. We then contacted our local social services and we had emergency help. Carers are now calling 4 times a day, reducing to 3 shortly. She has a commode and incontinence pants. They were very helpful

Has he had difficulties before the hospital admission and would he qualify for Attendance Allowance to help finance additional carer visits, help and adaptations. SS and OT are places to start for assessments into care needs.

But how would that money help. It wouldn’t be enough to pay a carer all night?

If you need continuous care then residential care may be needed, unless you can self fund, attendance allowance is something towards your costs though.

It offsets part of the cost. Or pays for an additional visit last thing at night or first thing in the morning. Or for a few sessions of respite care though the year. Or for a commode, a better walker, extra laundry ....

It's a lot better than not having the extra money.

Doe he claim any AA?

Exactly, it is a start. Also worth asking gp surgery for number of the local Continence service who can advise on least disruptive way of coping at night and supplies. Does he have a Blue Badge?

He should have been assessed by an occupational therapist for equipment to assist him to be independent getting in/out of bed, even if just to sit on the edge of the bed to use a urine bottle if he cannot use one lay down, to save DM having to be woken. If he hasn't you could ring the local council for one to come out to assess (the carers may be able to get an OT to visit if part of a dc2ax team rather than a private care company) or if quicker and money not an issue just buy what is required. There's anything from the cheapest, bed lever a grab rail that attaches to the bed if you think he could do this with his right arm, up to an electric bed that would help him to sit up if he could work the remote control and various options in between. In the meantime supply him with a urine bottle and ask if he can manage that without waking his wife would be my suggestion.

He had a sort of assessment which resulted in the carers for 6 weeks.

He doesn’t get attendance allowance as he hasn’t been disabled for 6 months yet. All this came about at the beginning of December and he was in hospital until a few days ago.

Hes been reviewed by the continence team and they’ve just ordered some stronger pads but said they’ll take about 3 weeks to arrive.
No blue badge as this is quite a recent thing (since December)

He has the bed bottles but is struggling to get into a position to use it and can’t use his good arm to do much as it doesn’t have much strength. I’m beginning to think he might need a hospital bed for a period of time because at least then he could adjust it electronically to help. I’m not sure if he’d be entitled to one though. In the meantime I’ll investigate a bed rail to see if that would help him.

No AA as has only been disabled since the beginning of December and he’s not entitled to it apparently

A conveen would be worth a try if he has incontinence, they are a bit like an external catheter. The continence nurses should be able to measure him and show how it works.
If it is just that he can't get to the edge of the bed to use a urinal then a bed lever may be the right thing.

Agree with mustardy a convene would be good in this situation ( if he has ‘enough’ to fit -sorry OP I know this is your DF).

The alternative if your parents are self funding is a few nights a week of night sits to give your mum a break, has the GP reviewed his PSA and checked his prostate. There may be meds that could work. Also is he up and down in the daytime as well? Or is it just the night? Maybe reduce caffeinated drinks which are bladder irritants, has he had a bladder scan to check he’s not retaining (incomplete bladder emptying).

sorry for random train of thoughts….

Agree about a conveen

It’s common for men to need to get up for a wee. Possibly start restricting fluids on the evening. Often there’s medications that can help with over active bladder too

first pint of call would be the GP - they can do the necessary referrals etc

This will be 'discharge to assess' (some areas may still call it 'intermediate care'). If he's still within the 6 weeks then I think the hospital is your first port of call. The 'assess' part should include reassessment to ensure he is managing and whether he needs continuing support after the 6 weeks.

Why is he weak on one side? Did he have a stroke?

Just asking because the Stroke Association helpline is very good, plus he ought to be having rehab at home if so.

The hospital says it’s not a stroke but he went in for an operation on his neck and was left with severe weakness on one side

I'd definitely ask the carers if they have an OT on the team as that would be the quickest way to get an assessment. It sounds like he's under Discharge to Assess or a similar scheme, used to be called home based intermediate care, in which case they should be able to help quite quickly. In my area they would bring equipment to trial with him at home to resolve the problem. This may entitle him to a hospital bed if no cheaper option works. A lot of older gentlemen cannot use a urine bottle lay down but there will be a solution which will make DMs life easier. 👍

Is he having any physio?

Is there an option to pay for some private physio? Specialist neuro rehab physio sounds the most relevant.

In the meantime, could you purchase some continence pants yourself - they sell them in Boots.

I'd be pressing them for answers on that. Have they tested for a stroke? If it's not that, have they damaged a nerve? [Edit: it's possible there's swelling around a nerve that's expected to resolve, which could affect physio needs and timing - but you need the info for planning.]