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!