New to this version - Hi! Mother discharged from hospital with extra care need not recorded

New to Carers Connect
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Hi all, I’ve just joined this new forum, but was a member many years ago due to caring for my son with ASD. I now care for my elderly mother in her 90s with moderate Alzheimers and have been since my father and my husband died. A problem has occurred that I would really appreciate some advice about.

She went into hospital at the end of November not being able to walk suddenly so had a fall. She wasn’t injured, did really well and the problem was solved after 4 weeks of being there - no diagnosis though. When she went in she was totally independent with toileting and not incontinent at all, not ever, even though her walking became strange. She knew when she needed the loo, didn’t have accidents, etc. Got up at night to go to the loo which is right next to her bedroom.

However, she has come out and we discovered (because she wet the bed the morning after discharge and we weren’t prepared) that she is incontinent at night now. I strongly believe that this is because within two days of being in hospital she was put in a pad and told to pee in it. During the night for her whole stay she was told not to get out of bed (even though she could after about a week) nor was she given a commode. I complained and eventually after about two weeks the ward manager instructed the nurses to accompany her to the loo every 2 hours during the day. But she was still in a pad. This was hit and miss, and sometimes they didn’t unless she asked - and often it was too late by the time they got to her, which she recognised and was quite bothered by it. At first she retained urine because it was unnatural for her to pee in a pad at all but then she got used to it.

Unfortunately, at night they carried on stopping her getting out - and by night I mean from 7.30/8pm change of shift time until next morning at around 9am. There was no mention of this incontinence on discharge summary,or the care needs assessment by hospital OT/physio team, so it was a shock. We had no pads, pull ups or waterproof bedding. I requested an assessment and got a couple of packs of free stuff but they are not enough. So I’ve spent loads on this.

That was December 20 and she is still not getting up to go at night and so now I have to check and change her pants, nightie and robe, sheets first thing and wait for her to go to bed last thing so I can supervise her wearing fresh overnight pullups. The enablement officers do not deal with this because it isn’t in the discharge ‘care plan’ and they come to her house way after the pad has to be dealt with and much too early for late night. She couldn’t consistently do it herself because of her memory. She is dry during the day, so she isn’t actually properly incontinent as I understand it - ie her brain is still signaling - you need the loo!

Sorry if this is rambling, but I am long term caring exhausted on top of everything else, as I have no advice, even though I’ve requested an incontinence nurse to assess. I am now even more tied to the house, so ironically she is more dependent on me than she was before, but can walk around independently again. I can’t go out, and haven’t been out since 20th December.

I need to see my son graduate in two weeks in another part of the country (his father died so there’s just me) and I have no other carer for her and she now needs this personal care last thing at night and first thing in the morning. This new problem means that finding someone appropriate would be much more difficult. She will still be within the six weeks enablement time.

Any advice, words of wisdom, experience with this (I’m told it happens a lot post hospital) would be gratefully received.

Thanks for reading - sorry for length!

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@Musomum, sorry to hear that you are having trouble with this. I would suggest getting in touch with the carers helpline for further information and advice. I would suggest also that you speak to the GP and as them to refer your mum to the incontinent nurse and also speak to social services and ask for extra support as well even the GP can help with this. There a few of us on here who are in your position looking after people with wetting issues. I buy the pads and the tena pants off eBay in bulk as the stuff the NHS gives are rubbish. I would suggest that you also speak to your mp and maybe write to the local health board in a way of complaint about your mum treatment.

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Thanks for your swift reply. I told the GP, but she just said that the nurse had referred her, which turned out to be wrong! The nurse had done the assessment already and will do ‘education’ next time. Good idea to look at ebay as I think the NHS are contracted to use a particular brand by the look of it. Unfortunately, I don’t hold out much faith in my mum’s MP - I wrote to her about my mum’s removed winter fuel payment (at 94) and seeing as she is the chancellor’s sister I didn’t get very far!

I need to know if my mum would qualify for an over night sitter (one off) based on this incontinence need which would have/should have been on discharge summary as a care need I presume. I’ve been quoted £25 hour for just sitting. No medical care or hands on care overnight. Seems very expensive.

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@Musomum that does seem expensive for just sitting with nothing else’s to care for your mum. I would suggest that you try some of the care agents company and see what they can offer but definitely speak to social services and they should be providing something of help.

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Mum should have 6 weeks free Reablement Care. It sounds like the hospital caused this issue so they should be made to sort it out. I would get in touch with the CEO, of the hospital, maybe also CQC, as they regulate hospitals, make a formal complaint and ask that she goes to have some residential care to sort it out. (How many other patients are they not supporting to use the toilet at night? It’s a disgrace.
Has the time come to say it’s time for a permanent move?
Or significant extra home care?

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Yes she is receiving the enablement, one call a day. But they only help/supervise with washing and dressing in the morning. Yesterday they came at 11.15am, hours after I had to deal with the night issue pullups. They have never helped with that as it isn’t on the discharge care needs. I’ve called PALS just now and they are emailing the ward manager. They’ll get back to me next week, but I doubt they will do anything as they are saying/will say it was a safety issue and that she had to stay in bed at night. However, I know it was a staffing issue and almost policy. One person for two bays of elderly people - that’s 8 people - who may all need to go to the loo. Apparently, it’s very common and because of the age of these elderly patients I fear there is complacency.

I just don’t see why she has to pay for something which wasn’t a problem before. Incontinence is big business I’ve found out and the NHS funded pull ups don’t do the job as well. Plus she’s now confused and keeps thinking she’s wearing a pad, not pants and has twice pulled out the wet inner pad lining, put it in the nearest bin (not special one) and kept the ‘pants’ bit on.