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Elderly parents

Incontinence - Advice

91 replies

helpwithelderly · 26/01/2025 19:33

Please can anyone offer any advice.

My grandfather is now double incontinent, he lives at home and has carers going in to help.

Family also go every day to visit.

The problem - Grandfather is refusing to use any incontinence products.

Therefore, we are cleaning up accidents several times a day. This is now becoming overwhelming for all of us as due to failing eye sight he can’t see very well and the trail that’s being left around the house, on towels, his clothing, the floor etc

We are very concerned on top of the house situation above that he is going to get very, very ill as everything is becoming contaminated despite how much we clean etc

We have tried to discuss it and he becomes very angry and upset.

Please can anyone offer advice if they have been in this situation.

OP posts:
helpwithelderly · 31/01/2025 18:06

I’m just about to re-read all the replies to this thread. Thank you to everyone who has commented and given advice.

This is a living nightmare.

Carers are going in x 4 family x 1 per day.

Social Worker visited yesterday.

Declared my Grandfather has capacity and it’s his choice whether or not he wears pads and whether or not he engages with the carers.

Today, the 3rd carer left at 3pm.

I arrived at 4pm.

Several accidents, bathroom, carpet, floor, cups, bin, clothing all covered in poo. This didn’t happen in the hour he was alone.

What the hell are we going to do.

OP posts:
PermanentTemporary · 31/01/2025 19:51

Oh God it's Friday afternoon- that's always when things kick off...

It sounds almost like a total protest against still being alive.

What's the financial position? Is there any resource to throw money at this? Equity release?

It sounds as if the only possible route other than care home is to put 24 hour care in at home. It would have to be a team though, and they would have to be incredibly skilled people.

I hate to say it, because I absolutely don't think any of you should have to, but could anyone drop their lives and move in with him for a few weeks...?

Actions to take during that time would be literally to beg the GP for a referral to the Older Adults Mental Health Team, to get back to the continence nurse and scream for help, and to ask the social worker for details on how they assessed his mental capacity.

helpwithelderly · 31/01/2025 20:36

@PermanentTemporary

It is horrendous.

We have money available.

We have discussed renting him a flat nearer to where we live so it’s easier to be available. He seemed keen but then after his hospital stay, things have deteriorated.

His house isn’t suitable for live-in carers and we don’t have the ability to live with him either.

He stayed with his daughter for a while but he just wasn’t happy there and wanted to go home then wanted to go back but his needs were too great to be left alone in her house and it would have taken 6-12 weeks to get his care package moved as it was a different area.

The social worker said he was capable of understanding the questions and giving answers so if he says no it means no. Then a lecture on abuse if you disregard the no.

Incontinence team can’t help. They have assessed and provided the equipment it’s not there problem he won’t use it! Because, he has capacity to decline.

Excellent idea re: GP and mental health team - Thank you.

We are also now all taking photographs of what we find with time and date stamps. We have a folder set-up do we can all add the images and see a timeline etc

OP posts:
PermanentTemporary · 31/01/2025 20:47

'capable of understanding the questions and giving answers'

I'm going to be charitable and assume that the assessment was better than that sounds, but that is NOT a description of a mental capacity assessment on the question of whether he can appropriately refuse to wear incontinence equipment. A mental capacity assessment is not a simple conversation.

I will say of course that the point may be moot, in that it's likely to be impossible to physically force him to wear them. But it would still be useful to understand his thought processes when he refuses. Could you ask his GP for a second opinion on his mental capacity on the basis that you as a family need to understand where hes coming from? With the referral to the Older Adults MH Team alongside that?

If he's effectively doing a dirty protest at being alive, then antidepressants or other meds for his mental state might help. It doesn't sound exactly like that though, given that he appears to be attempting to get to the toilet or somewhere less inappropriate before the accidents occur.

I'm.afraud the only option may be to make putting something in place more of a nuisance to the services than doing nothing would be for them. So bother EVERYBODY.

helpwithelderly · 31/01/2025 21:09

I think you are right @PermanentTemporary

I think we need to be borderline harassers of every single agency.

The social worker visit was a waste of time.

He had a family member with him who really did send a very clear message that he is not coping and we are not coping with the incontinence situation. He just kept saying he can’t be forced.

After my grandmother died, he was given anti-depressants, they gave him a very bad stomach and made him feel nauseas. I think we need to revisit this with the GP and try again but a different brand.

He is attempting to get to the bathroom but isn’t making it. Then tries to clean up and it doesn’t work out very well for him or he does just leave it.

The carers are stepping over it, he’s telling them to leave and they do.

Thank you for your advice, it’s been very helpful.

OP posts:
PermanentTemporary · 31/01/2025 21:17

Yes, don't be afraid to ring or call any agency you are told is going to assess him and to get and give more info.

I'm amazed that the carer who is stepping over shit hasn't escalated this - or have they? Is that why the social worker came in?

Tbh 'he told me to leave it' isn't really good enough either. Presumably if he'd fallen and was gushing blood but told them to leave it they would try a bit harder to persuade him or at least aim to negotiate a bit more, put a towel down, work towards putting a dressing on.

Don't be afraid to remind the GP about the previous gastric issues with the antidepressant, they may or may not have that on the record.

CeliaCanth · 31/01/2025 22:07

My experience is - and I know it’s only one person’s - is that carers are not good at escalating problems. My mum was having continence problems and asked the carers not to go into her bedroom, so they didn’t - unfortunately, by the time someone did, they were confronted with an overflowing commode, shitty clothing everywhere, soiled mattress and carpet etc. The smell was dreadful. When I asked why the carers hadn’t even raised this as a possible concern all they said was “…but she has capacity.”

AnSolas · 01/02/2025 00:22

Hi, This can be very hard for the family to manage.

And its best, if possible that all of the family agree to notify the Social Worker (SW) that they will no longer be providing any care as of X date and that the care plan needs to be updated to reflect this.

This puts the ownership of everything back on the SW.

What you are trying to establish is if the SW is willing to leave him in his current situation with little or no cleaning being carried out. And that the SW is will to document its "normal" for someone with capacity to live surrounded by their own waste and this is not neglect by their agency to allow this to happen.

(This is not to say that you as a family can not visit. Just that in theory you will leave the house and Grandfather (GF) exactly how he is when you entered the home. And as the SW claims its "normal" you can not be neglectful for leaving it to the SW who has put the best care package in place. )

As for accepting "no"
GF is of the age where Grandmum (GM) would have done most /all the housework so he may not actually accept that it is as his 'job' to clean up.
One or more children (if all agree) may need to do tough love (good cop/ bad cop & treat him like a three year old in a strop) by have a proper family fight with GF over his "choice" of not using pads. His children should know how far to push and yes if it can work bully him into submission by guilt. Soft and nice is not working If he has capacity (as the SW claims) then he can be subjected to a robust descussiin on why he is "choosing" to soil himself.
Pointing out that it is the carers job to dress him including the pads and that he would not like to have to clean up after someone who is choosing to not use the pads etc. He may open up a defence as to why he is not willing to use them.

Give the carers and SW notice of this so there is no "suprise" if GF is out of sorts after this happens.

As suggested GP should be contacted if the family want to get a medical assessment /opinion of his capacity to make choices. And the GP may be able to provide a different brand of meds if someone can attend the appointment and explain the hoped outcome of him using the pads and also hopefully feeling better overall.

I would also request a follow up with the nurse to have a report on how the carers can or can not manage long term if he is continuing to refuse to use any products.

You need a "wedge" to push back on to the SW so the care plan needs to be amended as the SW has confirmed that SW is aware that he is doubly incontinent and will be allowed to remain without protection and will continue to soil the floors and countertops.

I would start with getting very detailed on what is listed in the plan for the duties of the care staff.

As the house now has an obvious fall danger of wet floors and hygine risk for GF and visitors plus staff cant be in contact with waste materials and tracking it out to their next job.

Your question is how will that be managed on a day to day basis.

Taking it task by task, the first thing on the care plan has to be the obligation that the carer removes all waste matter from the floor and checks the kitchen, countertops /sink and bathroom sink etc.

Eg care plan is amended to:

First task of visit:
Clean floor by washing using mop and hygine product A stored in X place in home.
>Now the care staff are 100% moving him over wet floors how is this risk managed.
(He or they can fall.)

The Carer must details what was done in the end of visit notes so that each step is recorded.
If the carer is not provided with a document make up one which has a detail copy of the care plan for each visit during the day.

Second task:
Cleaning of waste from kitchen by
a) cleaning kitchen sinks and
b) wipe down of counters,
c) wipe down fridge,
d) wipe cabinets doors,
e) wipe door handles,
f) wipe light switches
e) wash dishes.
Washing liquid, cloth and other hygine product stored in Y place in home.

Same type of cleaning would be needed for each room he uses.

Note the counters and food storage is at high risk of cross contaminated if he makes any use of the kitchen in between visits.
How will the SW arrange for this be managed....

Again Carer details what was cleaned in the notes.

The SW needs to confirm that the provider is willing to provide this service and that additional time is provided to the care staff to ensure that they have time to carry out the tasks.

If this is not happening on each visit the good/ last carer of the day gets left with the blame and cleanup.
Over time the good ones who clean will get fed up with poor carers and/or the ones who just cant spend the extra time and leave.

Then as the urine will break down his skin the staff will have to strip him to wash him and change all his clothing on every visit plus apply a barrier cream and check his skin for damage etc etc
Ask his GP or the nurse on best pratice

As before this needs to be detailed into the care plan and time allocated for this.

Third task:
Wash body by showering or by basin and change all clothing.
Soap, towels and wash cloth stored X
Top, slax underware and socks stored X
Pads stored X
Shower chair provided and stored X

Again at the end of the visit the carer need to be recording this in details in the notes.
And where there is a refusal what additional steps were taken other than to just accept the no and leave him as is.

An important thing would be for the carers to record when they stay over the time as frequent overstays means additional time is needed.

Next how will the SW instruct how are the care staff to manage the soiled personal items and the bedding changed daily the morning and after he naps plus any furniture he has been using in between visits. Plus the cleaning materials.

What time will be provded to do the extra laundry and changing the bedding etc.

Then have every other task listed and allocated a reasonable time so that the care staff can provide the level of care needed for each visit.
And again the carer must document each individual task as done or not.

As the family are aware that he is not eating / drinking request that the carers be given time to see GF eating and drinking and that what he is eating be documented. Plus the counters and other surfaces may not be clean once the carer leaves so he should not be left to eat food once they have left, and water should if possible be in a sealed container
Task no __
prepare breakfast.
2 toasted slice of bread with butter and jam, 1 boiled egg, tea with milk 1 spoon of sugar
Task no__
Transfer to bed/chair
Task no __
Fill beaker with water and leave beside bed/chair

I suspect that the SW may be unwilling / unable to allocate the time needed to safely manage GF. However this is what needs to be documented so that failures can be documented.

But the hard part would be to get the care plan in place and then step back from it week by week and only record the results.

Bonbon21 · 01/02/2025 08:14

AnSolas... Excellent post.... I hope the OP follows through with this as far as she can.
Having done that the family need to step back. SW cannot possibly think this situation is acceptable, capacity or not.

hotnotgrot · 01/02/2025 10:35

@AnSolas

Whilst I agree in theory from the family's perspective, this is 💯 why no one wants to be a carer today.

I mean, bloody hell, those poor carers.

Also, this is also why there will never be sufficient money for elderly care.

FiniteSagacity · 01/02/2025 11:03

@helpwithelderly we were able to get a copy of the existing care plan (written by hospital social worker) from the care manager at the agency - who was also tearing her hair out as the maximum visiting care package allowed wasn’t enough to stop us calling every other day and it documented that ‘family will do domestic tasks’. In our case, no one in the family was able to visit every single day - let alone multiple times a day.

@hotnotgrot is right that this isn’t fair on the carers either, they don’t get enough time and our experience was social worker wanted to reduce the spend.

It was useful for us to see the care plan document - it set out the risks that the care was supposed to be mitigating: falls risk, skin risk, nutrition and hydration but also self neglect and hygiene at least to the extent of wiping surfaces and washing up.

@AnSolas has given great advice if you are able to take the longer view and negotiate with existing agencies - but it sounds like a crisis to me - self-neglect is over the safe-guarding threshold.

I suggest phoning the council adult safe-guarding line often - maybe every day, including out of hours. Describe what you’ve found each time and mention carer burnout.

Just to caution that you mentioned a flat nearer family - we tried this - it was a whole new circle of hell dealing with a whole new area. Plus a financial nightmare.

I’m hoping someone has power of attorney and wishing you strength.

AnSolas · 01/02/2025 11:47

hotnotgrot · 01/02/2025 10:35

@AnSolas

Whilst I agree in theory from the family's perspective, this is 💯 why no one wants to be a carer today.

I mean, bloody hell, those poor carers.

Also, this is also why there will never be sufficient money for elderly care.

Yes the carers have a problem in that the failure to take account of what is needed to provide safe care could open them up to a charge of neglect or even be named as a factor in the GF death.

Its not helped if the SW is supporting and agreeing with GF that he has the right to refuse to use the pads. Which can happen.

And he is 100% better off if he can stay at home which is the cheapest provision option but that is conditional on him accepting the need for a pad.

The carers are going to provide key points in creating a detailed care plan. They will be able to say what needs to be done and how long each task takes etc. So a meeting with a carer and staff who write the plan can be very helpful.

This is why the carer documenting everything and raising concerns and requesting the extra time and staff needed to wash GF and the house is a key issue.

If detailed and documnted the provider of the staff cant say that they were not aware of the level of care needed and they have a duty of care for their staff and other "customers". So a professional provider saying this will not work/ is not working carries more weight than the family.

The SW telling the family that capacity means the first carer can walk out of the home leaving GF in soiled clothing and waste on the floor. Same with second shift. This gets transferred around other surfaces. So after what period of time can the staff refuse to deal with the waste on the floor or be assured that GF's skin has not broken down etc.

Its likely that the provider have meeting with the nurses and other care in the community teams.
So asking who the provider think need to be involved can help.
In home physio re movement to bathroom wet floors and an assessment of the home by the Occupation team would all feed in to create reports which create a workable plan.
So total time needed for safe care 1.5h currently authorised 1h. He is still soiled for 3h+ 4 times a day with a fall risk for him and all staff plus waste management.

Then have a meeting with the SW, the provider, any other professional involved. Each will take a position to protect their role which can lead to a better outcome overall.

hotnotgrot · 01/02/2025 17:28

@AnSolas

Of course he is better off staying at home, but is it cheaper for everyone else to be funding this? It is a relevant consideration. Presumably only if he actually uses the pads, otherwise his need is care home level if you want him to be clean and not spreading faeces everywhere?

AnSolas · 01/02/2025 21:22

hotnotgrot · 01/02/2025 17:28

@AnSolas

Of course he is better off staying at home, but is it cheaper for everyone else to be funding this? It is a relevant consideration. Presumably only if he actually uses the pads, otherwise his need is care home level if you want him to be clean and not spreading faeces everywhere?

I think we agree.

The options are his home or a care home.

The SW is saying GF can be managed at home without pads.

Most reasonable people will agree it can only be home care with pads.

He should not be managed at home with the expectation the care staff themselves are put at risk by the living conditions which will quickly develop if staff are told to accept instructions from GF not to clean GF or the home.
The SW is saying No pads and no cleaning is OK when stating that GF has capacity.

In the short term the carers could provide care but it has to be managed at such a high level that most providers will not want responsibility if GF is saying no cleaning as the home will end up as the not fit for human habitation.

If there are no pads the SW needs to start looking for a care home placement.

TheoriginalMrsDarcy · 02/02/2025 03:27

I've found in my opinion social workers to be tick box worker bees. They don't actually know the patient and generally give an assessment based upon a quick chat. Sometimes, the chat is merely over the telephone with the patient.

You need to stress to them there is self neglect, he's not looking after himself, not eating, not cleaning etc... As previous posters have said, you need to get everyone involved. Document and photograph everything, email his GP surgery and social care team with the most disgusting photos of self neglect as that will shock them and hopefully make them sit up and act. Tell them the carers are putting their health at risk of e-coli etc...

Ive found carers don't do anything and they don't report back with anything either. (Probably not all carers are like this but this is what we have experienced). They were supposed to help father in-law out of bed, bathe prepare some breakfast/meals etc... None of that. In and out within 2 minutes. I'm not even sure what they did or supposed to do.

Have a look at this website, see if this helps...

https://www.mind.org.uk/information-support/legal-rights/nearest-relative/sectioning-and-guardianships/

Good luck

hotnotgrot · 02/02/2025 08:11

@AnSolas

That makes total sense. I agree with you

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