Incontinence - Advice

[helpwithelderly]

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.

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.

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.

@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 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

He has some cognitive decline.

However, he isn’t drinking or eating enough which adds to the confusion. But when he’s well fed and watered he is as sharp as a razor.

He does have urgency as the accidents are in or around the same area.

He will not accept a commode.

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.

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 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.

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.

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.

He was doubly incontinent before he displayed cognitive decline.

He refuses food and drink offered and/or prepared by the carers but will accept it from family. He isn’t forgetting.

He had an MRI and various memory tests before his hospital discharge.

His has a history of mental illness so not washing is something although deeply unpleasant we are used to.

He has never socialised with anyone outside of relatives. He has no friends.

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?

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?

He was ok in hospital when he felt so unwell, then as he started getting better be became very, very difficult with us but compliant with the staff.

His mental state was better than it is now.

I saw him yesterday and suggested a lovely private respite home, he wasn’t keen, but that’s to be expected.

The carers think that he has capacity to make his own decisions and if he rejects their care, then that’s his choice.

He wants to die.

The carers are saying he has capacity to decline.

We have a social worker coming in the next two weeks.

I really feel for you. It is obvious how much you care and how hard you are trying to make sure your grandfather is safe and well cared for. It must be very sad to watch and feel that you can't make things better.
I hope that you have someone to talk to about things and to make sure that you are ok too.

Hey OP. I’m sorry you’re going through this. You sound like a wonderful and caring granddaughter.

I would suggesting arranging an appointment with a continence nurse. If nothing else he may confide in him/her a bit more about the rationale as to why he isn’t willing to make use of any incontinence products

He is very, very special to me and we are very close.

When he was admitted to hospital, he was very, very ill and I hoped for him, he would pass away peacefully, but he didn’t.

This thread has helped me actually. As I don’t share anything about him with anyone in real life as I don’t want to be disrespectful.

He has seen the continence nurse and has been given all the necessary equipment. He just won’t use it.

@helpwithelderly we had similar circumstances and I really feel for you. If the person is quite intelligent they seem able to continue to pass assessments and avoid the [insert label] that can unlock help. Anyone spending up to half an hour with them thinks they have capacity.

Social Worker may try upping care visits first (maximum in area was 4 x 2 carers a day) or talk about extra care (I spoke to a few and they will not accept double incontinent and high fall risks) before saying care home.

The multi-disciplinary team in hospital observed over a few days and were very clear with family that the medical advice was 24 hour supervision. Social worker still sent home. In the end we had to force respite and make the hard decision ourselves because we could no longer cope with the level of propping up or watch the slow motion car crash.

You've both been through such a lot. It must be hard for your grandfather, having recently lost his wife. It must be awful for you to feel so helpless.
This forum is great and there are so many knowledgeable people. I'm glad you've been able to talk about things on here- I understand they are not things you'd feel comfortable discussing with people who know your grandfather as you wouldn't want to break his confidence.

Does he have male or female carers? My FIL (who was doubly incontinent) wouldn't cooperate with the female carers about personal care (though he was fine with meals etc.) but the male carers could get him to comply with using the pants, pads etc.

I guess my point is that this time last year I hoped the care assessments would be a bigger help than they were.

I’m hopeful for you and your DGF, glad you at least have a date for a care assessment in the near future - also glad you have found somewhere good for respite if it goes that way.

@helpwithelderly

I meant just from an eyesight perspective - if he cannot see to clean up, this is probably something that requires more care than he has at the moment.

You sound really caring. I hope that you get the help you need for him.