Incontinence - Advice

ultimately, if your grandfather's sight is not good enough to be able to see whether something has poo on it or not, he probably does have a care need that might have gone beyond being able to look after himself in his own home anyway?

The incontinence is symptomatic of a mental deterioration, whether or not it registers as a decline into dementia that is measurable medically. Clearly, he isn't coping at home and isn't in his right mind, otherwise he would accept using incontinence items.

He wants to manage independently, that is very clear, but it is also very clear that he can't.

In my view, it is time for him to go into a home because his needs just are not manageable. You may feel it improves things. How was he when he was in hospital in terms of his mental state? Can you pitch it as "you aren't coping at the moment, so we need to try something else", leaving the door open so that you can at least trial a care home stay in which he may get used to the idea of the incontinence pads?

FIL never ever understood he had dementia. He also argued like crazy with MIL, partly as this was their original relationship dynamic, partly as she kept thinking he was doing mad things on purpose, and mainly because he couldn't remember that he might actually be the problem so it must all be her fault.

All of this vanished immediately when he went into the care home. It was so much better for everyone.

Also, we didn't have incontinence at home, but we did have a situation in which my grandma agreed not to cook, but then would burn stuff in the kitchen and cause a hazard. She seemed lucid and committed to living at home, but she really wasn't, as she just couldn't recognise the danger, admit her limitations and break the cycle. She was happy, happier in fact, in the home, despite the fact that she really fought against us denying her independence. She wasn't coping.

I have to agree with this. No one with full cognitive ability would neglect themselves so they don't eat enough and prefer to soil themselves rather than take action to control the mess from accidents.

He might be 'sharp as a tack' when you talk about how he slept and the fact that Bill next door popped round but what happens when you ask him why he isn't wearing any underwear (let alone incontinence pants) or ask him to get you tea and biscuits and watch him do it? Is he managing? The answer from what you have said has to be no.

Yeah, I agree that he isn't actually cognitively able to decide this for himself and really isn't coping at home. And likely won't.

You may find that once he is in a home, he will be calmer about accepting the pants, because the soiling is no longer about him "not coping" at home and It's a health need. His muscles and nerves cannot tell him when he needs the toilet. It cannot be overcome by him, however hard he tries and he really needs to realise this. He is trying desperately to cope and to hold on to the fantasy of being able to live in the manner in which he was able to live at home in the past, but needs to be relieved of this pressure

If your grandfather goes into a home, hard as it will be, you can spend time with him rather than cleaning up after him. If it were me, I would be stressing this. He will of course be unhappy with this. But he might be happier and more settled overall.

I'm really sorry but if he has cognitive decline to the point he is doubly incontinent, refuses basic hygiene and can't remember to eat or drink enough this has gone beyond 'cognitive decline' and into the diagnosis of dementia.

Has he had a memory clinic referral? Bearing in mind he probably doesn't recognise he has a problem so it will need to be pushed by his relatives.

I suspect that the issue is that carers can't just force the people who they are caring for to do anything they don't want to providing they have capacity, however bad the persons judgement is - they have to respect their wishes, so if he says that he doesn't want to wear underpants, they can't make him.

I have a similar problem with DM, who has carers come in in the morning to wash and dress her, give her her meds and see she has breakfast. She is reluctant to let her carers wash her and to avoid it will either try to get herself dressed before they come, or tell them she's not ready to get up yet. They'll try to persuade her to let them wash at least some bits each day, but they can't insist.

Luckily she's mainly continent and will wear pads in case of accidents

@Garlicnorth thank you for your insightful post, I found this perspective helpful as a daughter in my ongoing quest to understand. I know my DF is irrational and suffering cognitive decline but I still find it helpful to consider the ‘roots’ of how he feels.

@helpwithelderly we had 12 months or so where incontinence was added to other frailty and health crises. We tried all the products, including convene. It is so hard and your efforts are heroic but not sustainable. @PermanentTemporary has it right I think - 24 hour care is inevitable and respite in a care home is probably your next step.

I cannot understand how he can still refuse products when he sees us cleaning up. I just cannot understand it.

You're trying to rationalise something that is irrational OP, but your grandfather is almost certainly suffering from some degree of dementia. That's why it doesn't make sense. His 'old self' where he too was in his right mind, would no doubt be horrified that he's tracking his own waste around the house, watching his beloved granddaughter on her hands and knees clearing it off the floor. You can't rationalise his behaviour, because it isn't rational and neither is he.

It's time to accept that he cannot be cared for safely in his own home any more. He is going to get his food contaminated with faeces, if it isn't already, which will lead to a severe bacterial infection and chronic diahorrea/sickness. He needs to be in a care home, where his continence issues are dealt with 24/7 by professional carers.

Has he had a cognitive assessment? This could easily be the start of dementia which was hidden when your grandma was around.

Getting a diagnosis would be very useful as at the moment if he says he doesn't want pads no one pushes it.

With a diagnosis you can assess capacity and it's unlikely staff would agree he is making an informed choice to sit in shit.

What a difficult situation.

I would say that in this particular instance, he does not appear to have capacity to make appropriate decisions on his personal care. He does not appear able to identify the issue, acknowledge it is happening, describe the consequences to both him and others and how it could be fixed. These are all considerations when professionals judge “capacity”. It is a very fluid thing, and he could be perfectly capable in other areas of life eg managing his own finances.

whether this lack of capacity for this situation is because of cognitive decline or denial and stubbornness or a treatable illness is something to explore with doctors I think.

Can you request a visit from a continence nurse?

He may talk to a healthcare professional about why he is refusing to use his products. They will be able to offer advice to you all too.

he needs to be in a home.
respite then permanent
there are many , many people in a home that are ‘waiting’ go home ( their houses have all been long sold)
it’s a wonder he’s not got food poisoning with all that around.
he can look after himself what ever fantasy he is giving you.

My guess is cognitive dissonance. There is shame in incontinence. I have to use the pants all the time and I loathe them, despite having successfully worked through the issues related to appearance, etc.

Point is I'm therapied up to the eyeballs, have all my mental faculties and am clearly aware my bouffy paper pants are a health need. I still hate it! Most people habitually avoid introspection. Most people fight against having ongoing 'health needs'. Men in particular are very pride-bound; it's very hard for them to entertain even the thought of being impaired in some way.

I imagine he wore the pants in hospital because they're a health need, and he was a patient so temporarily unwell. His illness was dealt with, he's home on his own turf and thus has no health needs. Can't think of himself as impaired, let alone in such a 'shameful' way, so simply blocks all that right out.

I have no idea how to overcome this. One thing that might help would be some sort of group for people with incontinence, but as far as I know there are none ... and how would you get them to even attend such a group? I'm afraid I agree that this might be the trigger for him to move into a care setting.

I'm sorry, it must be so difficult for you. As a last-ditch effort, is there a Man With Authority who could give him a very strong talking-to? He's being very irresponsible, and there's a slight chance that being told to take responsibility for his needs could work if it comes from a source he won't deny.

Something else to consider, while carers are there to do personal care they aren't general house cleaners so won't be getting the Vax out and shampooing the carpets, the house will very quickly become a hazard to their health as well, a care company have to make sure the house they are attending isn't causing harm to their staff so you might find the carers stop coming and the company referring him back to Social Services.

You/family can't go on like this, you need to inform social services and prepare for moving him to a care home.

Constantly cleaning up after him, as kind as caring as it is, isn't a long term solution.

We’ve had the same issue with an elderly neighbour and have had to give up helping her. The social worker said she had capacity to decide and as she is a homeowner who has very forcefully said she doesn’t want to go in a home, they’ve left her to it. If your GF is deemed to still have capacity and is paying for home care, social workers are very reluctant to intervene. They know the house funds will soon be spent and they’d then be another burden on the state. It has been so frustrating for us. If he doesn’t have carers 4x a day, they will normally suggest this.

You say he doesn't wear any underwear yet he has carers - are they not doing an early morning visit to help him get dressed properly? He isn't capable of dressing himself properly if he isn't wearing underwear let alone incontinence products. Sounds like he needs more help.

With cognitive decline he might not be able to remember to use them (as it sounds like he's forgotten what even underwear is) or remember how to put them on. Then when family mention them, he feels embarrassed that he has forgotten about them / doesn't know how to use them so he says 'no I don't want to use those. I'm fine'. If the carers help him get dressed and put them in him you might find he is compliant like in hospital.

But it does sound like he is nearing the end of being able to live safely at home. Has he been diagnosed with dementia? Does he still have capacity to make decisions about his care? Does a family member have power of attorney? If you have POA and he is diagnosed you can get his capacity assessed and if he no longer has capacity you can start to make decisions in his best interests for him. If you haven't got POA and a diagnosis try to start the wheels in motion as it can take a while to set up.

Would he try a conveen?
It's a bit like a condom but very sticky that attaches to a catheter bag, they stay on for 3 days and then carers could change them.
I worry for his skin if he's sat in urine for long periods in the day!