Keeps removing soiled pad - faeces everywhere

[MrsWorriedMother]

Hi, I apologise if this is a long one but am desperate for some advice.

My mother hasn't had an official diagnosis yet. She has declined so quickly in the passed couple of months.

To cut a long story short, she is totally bed bound. Two carers go in four times a day. She totally forgets they are coming and denies they have ever been. Her memory literally seems to be deteriorating by the day, altho she still knows who I am.

I work full time and live about 45 minutes away. I go over about twice to three times a week. I also have a family to look after and an alcoholic sister with learning difficulties and a scizophrenic brother. I know that's not totally relevant but I just can't go over anymore. I'm exhausted.

My mum is fairly settled. She never tries to get out of bed and is happy enough. She doesn't get distressed. She has physios and OTs that go in to help her out of bed but otherwise she's happy enough where she is.

The problem is that every time she does a pop, she takes her pad off and scoops poo up with her hands and throws it down the side of the bed, smearing the walls with faces.

I clean the walls with bleach but next time I go a few days later it is the same story.

I have put notices on the wall that the carers will change her but she just says that's not true and that no carers come in.

I have been in touch with a couple of care homes and they have said if she is settled and not upset then she is best off in her own home as she will deteriorate really quickly in a care home. Do you agree with this? I guess she will still be doing the pad thing in a care home.

She does have an assigned social worker but she is no help at all and doesn't return my emails or calls.

Has anyone come across this before and what helped?

I really believe that the social worker is pushing against residential care because of money.

Double up carer visits 4 x a day are usually the tipping point for social services. If someone needs more than that then that often that tips the balance tips in favour of 24 resi/nursing care. It sounds like your mum is at that tipping point, with it only being maintained at home because of the additional support you are currently providing.

It will be less about money and more about paperwork and lack of placements. At the moment there are so many restrictions around moving people into care homes and care homes being under restrictions to admit if they have any positive covid cases. If someone is otherwise happy and managing at home other than poo smearing which is being managed by family and carers when it happens then they will be low on the priority list.

It's highly likely that her pad will be changed more quickly in a care home but a lot of people seem to be missing that the issue isn't that she is sitting in a dirty pad but that that she is taking the poo out so that she isn't. This will probably still happen in a care home, unless there is someone hovering over her 24 hours a day to intervene immediately to stop her, which there won't be.

For what it's worth, in this situation as a social worker if family were coming to me with the same concerns as OP I probably would be agreeing to look at nursing care unless family desperately wanted her to stay at home because they felt that's where she would be happiest, in which case I would look at how we could try and make that happen.

But I would also be asking for a CHC checklist too from the district nurses.

I do sympathise entirely, i had something similar with my DM who would remove her pad and basically play with the faeces. ☹️.
The care home (and later nursing home) basically sorted it out with regular changes so her skin was fine. I think also it may have been a passing phase, similar to toddler's fascination with poo that they grow out of. Of course, it's quite likely she just forgot about it!
I think it may be time to push for a care home. To add to what the PP who works in a care home said, my mum was also non-ambulant and in fact had a DOLS order (deprivation of liberty) so she was kept in a recliner lounge chair with a seatbelt as she would try and get out and then just fall over. But she was taken to the day room every day for the company and to be part of the things going on around her.
The home was quite good but not perfect, i did have to ask them to take her out of her room every day, after I visited one day and found her stuck in her room with her back to the open door. And she was very sociable and still loved company even if she did have dementia.

are the carers trained to sit mum out in the chair in-between calls provided she is safe thru could ask for it to be on care plan.if equipment is available perhaps transfer her ti commode on each visit so she then doesn't have to think she has ti mess the bed. u can also get adult nappes that stick at side so may work. not an expert but work in homecare and many can leave like this.it maybe that the care calls need increasing do they have time to transfer to chair or commode

Ask her GP if there is a local incontinence nurse/advisor.

When you say pads, do you mean she's literally sitting on a flat incontinence pad; or is she wearing adult size nappies ?

www.ageukincontinence.co.uk/advice/introduction

pull ups would probably work better than pads and if you could put some kind of pants over the top so she cant get to it

Sorry have been at work so haven't replied.
Just wanted to say thanks for all the advice.

So sorry you are going through this. It does seem to be quite common. I know my mum gets distressed when she poos and has forgotten what it is and doesn't understand what has happened. She puts her hands in it too. She is in a care home and I came on to agree that pads don't always get changed immediately there either. My mum has never been able to use her call bell and so could be left for hours until staff come around. I thought being in a nursing home the residents would be together in the lounge doing activities but so far she has spent most of her time in her room. This may be because she is currently in the nursing suite and we are in the process of making it a permanent placement. Overall though I feel she is safer in the carehome home rather than staying in her own home. I feel for you as it can be a battle with LA. The reason my Mum got in is because she was in hospital and we said no way could she be cared for at home. Before that we were having private carers as the LA was taking so long to get involved. Does it happen at a similar time? Could the visit times be tweaked or extended? I found with mum Mum when she was at home that getting her onto the toilet for a good 20 minutes in the morning/evening helped but you've said your mum is in bed so possibly this isn't an option. So difficult as laying in bed with a pad it's hard to have a proper clear out and this adds to the problem. Best wishes

I really believe that the social worker is pushing against residential care because of money

I think the SW is probably pressured into keeping as many at home as they can. Has your DM had a recent Care Needs Assessment?

Unfortunately, whilst you are propping up the situation, social services will let it continue. It is cheaper. Sadly there are millions of people living like your mum, I saw it frequently as a district nurse.
I would give them a weeks notice that you will no longer be involved in practical care nor visiting as frequently. Things will soon change when carers are faced with it and hopefully report.
Whether deterioration in a care home would happen or not, she is nearing the end of her life and I would be prioritising comfort and quality now over quantity of years.

very true words @cptartapp