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.

Could he be refusing because he wants to go into a home? Just a thought since he was happy to wear pads in the previous care setting.

This sounds really hard. Is there a reason he's refusing to use the products? Surely it would be more comfortable and dignified for him.

Hope the social worker can offer some help.
In the meantime I would start making a daily note of exactly what is happening and how much cleaning you are doing. It's not sustainable or safe.

@BlondeMamaToBe We thought that may be the case and we have asked but he says no way.

I have personally told him he can’t look after himself properly and he needs care, whether it be carers or a home, he strongly disagrees.

We just can’t understand why, it’s horrendous.

Emails are being sent left right and centre tracking who is doing what, constant contact with the carers.

It absolutely isn’t sustainable or safe.

We can’t even eat or drink in the house despite cleaning everything as we can’t trust anything.

I'm afraid it looks like you're at the point where a home is the only option as he is a danger to himself via poor hygiene. Dealing with poor continence is an absolute nightmare and hats off to you for managing 12 months of this - you've gone above and beyond to get this far.

@AsFunAsEnglishWeather I think you’re right, but it’s so traumatic.

If we put him in a home, which is actually outside of my control as I’m a grandchild not a child, I will probably never see him again as he won’t cope and will beg and plead with me to take him home, which cannot be undone once it’s done.

I'm so sorry to hear you're going through this. It sounds exhausting.

I think the only way to get through to him is to insist he wears the pads otherwise it's definately a care home for him and once he's in, there's no coming home EVER and tell him he'll likely die in the care home and not at home in his own bed. (Sorry to be so blunt, but sometimes these elderly need some straightforward talking).

It's either pads in his own comfortable home or pads in the care home and you only get a room. Tell him to choose.

@TheoriginalMrsDarcy We’ve said this to him. We’ve said the house will be sold and it will be gone.

He just doesn’t believe he can’t care for himself.

He wants the carers go stop going.

An option is that the carers continue and we, as a family stop going every day but we are frightened of what will happen regarding the incontinence as if he says no to carers they will leave which means accidents could be left for days.

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

I’m so sorry, I know how hard it is to cope with incontinence in the elderly. Does he have dementia? Sometimes they are not aware that they need to go, or that they have been. Or they just can’t get to the toilet quickly enough. Often, they will pull the pants off, just because. It’s frustrating, unpleasant for them and you and very upsetting. It’s also hard work. Would a commode help if it’s a question of not getting there in time. If it isn’t dementia then maybe there is a physical cause? It sounds like he needs further assessment by either the gp, adult social care or the continence team. I hope for everyone’s sake a solution can be found asap.

You said he has some cognitive decline, but has this deteriorated more recently? Any other recent concerns, more confusion, saying odd things etc? He might have a UTI which can send people completely off. If you suspect that, I'd ask the GP to check a sample.

Its SO hard OP. I really do understand after trying to help my own grandparents. Are there any friends or family member he listens to? Could said friend claim to have a similar issue and confide that they have started using X underwear which are very good? Would you GF listen?

I'm sorry about the loss of your nan OP. Does your grandfather know she has passed? What would happen if someone said to him 'GF, nan would have recommended you wear those pants/pulls ups'. 'She was so proud of those lovely carpets etc.' This might not be the right approach at all if he is losing cognition, but can potentially spark something to motivate him.

It might be worth drawing straws slightly and work out who best to give him a firm talking to.

Rather than the friendly, softly, gently.

It could be a family member, it could be the care service manager, it might be a social worker or an occupational therapist.

Someone who will deliver a few home truths. Along the lines of:
you say you can look after yourself, however you’re clearly not.
Other people are having to daily clear your poo and pee off the floor, because it seems you’re incapable of using appropriate protection. Yes, being incontinent sucks but you have a choice. You can look after yourself, or you can lose your independence and your visitors. At the moment you’re on a fast track to that. Your choice. Now then, to make that choice easier what can we do to make it easier for you to use the continence products. Carees help you put them on? Different colour? Different style? Different bins?

Or do you need a catheter. That’s the next step if you can’t find a way to make pads work.

Oh I am so sorry you are going through this . I cared for an elderly relative who was always continent . But he obliged me by wearing pads just in case he didn't make it on time. We had a long in depth conversation about the issue and I told him I could not and would not cope with having to deal with regular clean ups. Nursing home would be the only option. It was a dealbreaker . He agreed but was also fully aware . Luckily it never came to that for which I am so grateful . Do you think your granddad is completely aware ? And at what point do it kick it that he is no longer competent to make decisions. I feel sorry for your family it must be awful and he is so lucky to have so many concerned people .

Right, I think the cognitive decline is quite bad now ( plus obviously people are worse about things they don't want to think about.)

The talking to etc is probably still worth doing but you need to take in that he is probably not remembering individual events, plus he can't reason in the same way. He doesn't see you cleaning and understand the reason for it, or if in the moment he does understand, he forgets - really forgets - he's genuinely not encoding memories into the brain any more.

Tbh I think he needs 24 hour care. Where this happens is another matter. Try not to catastrophise about the future - I understand why after so long dealing with this - but for his own safety I think things have to change.

No advice I'm afraid, but I am elderly, with IBS and I wear incontinence pants every day. I usually have to change them at least once a day but otherwise I couldn't cope with the frequent accidents.
Why not get a few different products to see which will work out for the best?

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!

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.

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/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.

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.

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.

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.

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.

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.