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?

Would she be better wearing pull up pants?

I think it might be time to seriously consider a care home. stuck in bed at home alone all day cannot be good for a person. a care home should have some activities (crafts / meals with other people etc) and better care than just visits.

So even if you don't move her to a care home immediately, find out which are the best ones in the neighbourhood and get her on the waiting list (good places can be full) so that you don't have to move her in a rush.

Do her bowel movements happen around the same time? Can the carer timings be changed to match? Or increased so she isn’t as long in between visits?

Sorry, I misread. I thought you’d said they go in twice a day but just seen you said 4 times

Similar situation here

Just se ding you lots of good wishes

Sorry I have no answers

It really is so tough

Which social services team is she under? I.e is it an older adults mental health team, a long term cases team or an assessment team etc?

Does she have any district nurse involvement? The district nurses might be able to recommend a different style of pad or perhaps a stool softener if she's finding the sensation itself uncomfortable.

Depending on who you get hold of first between the district nurses or social services ask for a CHC checklist to be completed if one hasn't been done recently.

Have you asked the carers if there is anything they can suggest? Are they not dealing with it on their arrival? Could they perhaps leave a commode/washing up bowl/bag etc within her reach for 'deposits'.

It is a very common thing for people in your mums situation to do unfortunately.

It is also correct that any move for older people should only be done as a last resort because it can often lead to a deterioration., if she's otherwise happy and well cared for at home and isn't needing care during the night then she's best staying where she is from the point of view of her welfare.

If her staying at home is only sustainable because of what you are providing and it's unsustainable for you to continue to do that then social services/district nurses need to review the support package.

Finally, have you had a carers assessment?

She may well deteriorate faster in a care or nursing home but -
Skin integrity can be monitored by their nurse
She can be stimulated by trained staff
Your life can become more like normal once more

Don't be put off by naysayers, others can underestimate the effect this sustained high level stress can have on family.

Best wishes.

Gosh OP I'm so sorry. That's really really hard 💐

If nappies / pull ups aren't an option, I think that you will have to consider a care home.

Even if nappies / pull ups stop the spreading of the faeces, your DM is being left in a soiled nappy until you / carer can come. That's not your fault but that's not acceptable - anything more than a few minutes isn't ok

It really not might be possible to your mum to stay at home.

@EarringsandLipstick

Gosh OP I'm so sorry. That's really really hard 💐

If nappies / pull ups aren't an option, I think that you will have to consider a care home.

Even if nappies / pull ups stop the spreading of the faeces, your DM is being left in a soiled nappy until you / carer can come. That's not your fault but that's not acceptable - anything more than a few minutes isn't ok

It really not might be possible to your mum to stay at home.

It doesn't sound like there is a problem with skin integrity at the moment though?

Unfortunately pads are also unlikely to be changed immediately in a care home.

The OPs problem isn't that her mum is unhappy, in pain or receiving poor care, just that there's poo to clear up which understandably she doesn't want to do on top of all the other stuff she has to deal with.

She needs the professionals involved with her mum to up their game and give her advice about what to do in this situation. They may e.g. include a cleaning visit in the support package or they may also agree that the balance has tipped in favour of nursing care.

Oh love, I am so sorry. As others have said there are a lot of professionals on board here - carers, district nurses and social worker - and this is the sort of thing they should be helping work out. If the social worker is not calling you back, perhaps ask for her supervisor on the grounds that you figured she must be on holiday as she has not returned your calls? Please think about your limits - it is so easy to over extend yourself and the system will happily let you do it. When my mother finally died I was so tired it has taken me more than 9 months to feel like I am coming back to myself.

Speak to the local authority and request care act assessment for your mum and carers assessment for yourself.
If your mum hasn’t been seen by mental health services yet, ask your gp to refer to them urgently, a formal diagnosis goes a long way in opening the doors to get the help you need.

That sounds like good advice @hatgirl

Good point re changing of the pads etc not being immediate in a care home either. 😕

Thanks everyone for taking the time to advise.

It sounds as if possibly the cleaning assessment might be the thing to try and push for because that is the main issue at the moment.

Would a nanny cam be worth a thought so you can see what's actually happening during the day?

This is heartbreaking but very common.

She'll be so uncomfortable after having a BM bless her. I would suggest a pull up pad kind of thing.

It does depend, some people absolutely thrive in a care home environment, but I would say largely that's the more independent residents. Of course every care home is different but yes unfortunately people in your mother's circumstances can deteriorate quickly.

I'm so sorry for what you and your mum are going through Dementia is such a heartbreaking condition.

I have to say I think this is an indication of her being distressed. She thinks no one is coming to help her and tries to sort it herself. Surely that is distressing? It isn't acceptable regularly being left in a soiled pad between care calls and it soon will lead to skin breakdown even if it hasn't yet.

In a care home we would get the person up in the day room with others and staff around so that we would immediately know if she was soiled and change her before this had a chance to happen.

The only way to manage fecal incontinence with care calls is if it happens at a regular time so that the care can be timed around it otherwise it is inevitable a person would be left in a soiled pad which really isn't OK.

I think her care is not sufficient for her needs now and you need the social worker to reassess with a view to her being placed in care.

Hi, so sorry your dealing with this. I was full time and live in carer for my MIL who had very similar issues in regards to continence and pads/pants. In our case MIL would keep them on and would literally shred them until all the wadding and padding was all over the room, we also had similar poop issues.

I wish I could say we found a solution but sadly that wasn’t the case despite asking for professional help and trying absolutely everything I could think of.

I cared for my MIL until she passed and she deteriorated a lot over that time and it was a constant game of playing catch up and trying to solve, make better or more comfortable etc each time she deteriorated that bit more, I never felt ahead of the game. My point being that I was lucky to be in a position of being able to do that. You have a job, siblings who don’t help or you can’t rely on so unfortunately there is only so much you can do, and likewise there is only so much carers visiting through the day can do too.

Your mum may (and I stress may because it’s not a given) deteriorate more in a care home, but she may also thrive in one with the additional care, company of others etc. While she may be comfortable in her familiar surroundings of her own home, ultimately she may be better off and have better care being in a care home.

If I were you I would start looking at care homes and see if you get a feel for anywhere your mum would like. You don’t have to do anything immediately or rush into it, but it’s much better to have a good/nice place in mind for when the time comes.

In a care home we would get the person up in the day room with others and staff around so that we would immediately know if she was soiled and change her before this had a chance to happen

Someone who was entirely nursed in bed like OPs mum?

Care home. My mum was the same five years ago. She is thriving in a care home with excellent care and round the clock support - I wish I had done it sooner. It’s no life in your own at home.

Can the carers check /encourage her to go to toilet when they’re there…
I’m so sorry, it’s a horrid disease .

Often in my ward we do have non ambulant people up in the day room in a recliner chair for stimulation but I admit my experience is more with ambulant people with dementia.

I still think you are surely going to get changed much more promptly in a 24hr care environment even if you are in your room especially if it's a recurrent problem as a care plan will be put in place to prevent smearing eg regular checks.

I think a care home is in her best interest. It's the kindest thing you can do for you both. You are doing an amazing job of caring for your family. They are very lucky to have you

Unfortunately my mother doesn't own her home so it's not a matter of looking at care homes

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

It makes me so angry. She has worked every single day since she was 16 so has more than contributed to her care in my opinion.

We have a disabled teenager who will strip and shred nappies and smear poo if he can. We use special vests and back fastening night clothes etc to keep him out of his pads . Check out Racketys , Seen In , Fledgelings etc. Most do adult size garments as well.
It might be a temporary fix whilst you get long term plans sorted out.

Having had a bed bound feacally incontinent mother at home , I would absolutely say this level of care is not enough.
We had carers twice a day as I physically struggled to change and clean her . On two occasions they just didn't turn up
One morning. Not a disaster for us as I could pick up the slack but if she had been on her own that would have been a very long gap, no change and no breakfast.
In 2021 it's not acceptable to leave someone sitting in a dirty nappy for hours , you would rightly be prosecuted for doing that to a child or even an incontinent dog.
Absolutely not putting this on you OP , I know what a terrible situation this is to be in , but social services should not be trying to put you off using a care home for cost reasons .