Practical advice please, incontinence :(

[RasaSayangEh]

So sorry to lower the tone, am a long-time lurker on the Elderly Parents board

Parents live on the other side of the world, my dad was diagnosed with Alzheimer's 5-6 years ago. In recent weeks he has been gradually losing bladder control and lately it's become a constant issue. My mum is getting so stressed with the constant cleaning and laundry, and her main outlet is FaceTiming me in tears, so I'm trying to gather information on how other carers cope with this.

What she's done so far:

• Put dad in incontinence pants, problem is he often removes them e.g. middle of the night when wandering around, then is unprotected subsequently and ends up leaving a trail of pee somewhere in the apartment. Also once he's wet the incontinence pants e.g. in the daytime, he seems to realise he's had an "accident" and then removes them, tries to wash them or hide them in/under/behind things.
• Put a plastic mattress protector under his sheet, he says he doesn't like the sound and then wanders around finding other spots to sleep.
• Wrapped his sofa cushion in plastic, again he doesn't like it and moves to other parts of the sofa.
• Tries to prompt dad to use the loo on a regular schedule to minimise accidents (especially when out or travelling) but he resists and sulks like a toddler during potty-training "I don't need the toilet!" and then of course he ends up losing control and peeing in the incontinence pants and back to Point 1.

Is my mum going about this in the right way? Does anybody have advice or useful products to recommend?

Your poor mum. Sounds like she’s using an old fashioned plastic sheet, there are lots of waterproof mattress protectors available these days that don’t rustle or make a noise, they can also go in a dryer at low temperature, she will need to have plenty for changing the bed.

Once he’s got used to those perhaps she could try adding a disposable pads that can go down under the sheet that doesn’t rustle so with luck most of the time they will ensure the mattress protector doesn’t need washing as well as the sheets.

Thank you @AConcernedNeighbour I tried suggesting non-rustly protectors to my mum but she insists she has never seen such things where they live I suppose it could be true??

As I'm going home to visit them next month, I might buy some things here and bring them. I'm thinking (1) mattress protector (2) disposable pads for mattress (3) smaller disposable pads for sofa and other seats.

Would he tolerate a sheath? I've assisted people with using them with varying degrees of success. Alternatively, has he seen a doctor?

she insists she has never seen such things where they live

Where does she live? If you’re in UK definitely stock up before you go. We got new for all beds when we got kittens this year in case of accidents and the dreams one is nice. I also use a mat like this when my granddaughter stops over as the change in routine results in the occasional accident https://www.ageukincontinence.co.uk/catalog/product/view/id/47641/s/vivactive-washable-bed-pad-white-2000ml-single/?gad_source=1&gad_campaignid=23074460878&gbraid=0AAAAADqeUByPprqTJvOLSt5B8z2KLTfJl&gclid=Cj0KCQiAx8PKBhD1ARIsAKsmGbcN8hXQVTlDZyfARIgF2MU8JLmuL0pGJA7r9FcckpMlQtldrTd8jzoaAv_1EALw_wcB

@Mydogisagentleman I can't say for sure but my dad has been quite uncooperative with most interventions so I suspect he wouldn't accept it. My mum has taken him to the doctor several times and they've all said it isn't something acute but part of his dementia progression.

@AConcernedNeighbour Parents live in Malaysia, I feel quite certain that there will be plenty of incontinence products available there - but to save arguing with my mum, I'll buy some of your recommendations and bring them!

My dad was removing his incontinence pants during the night and we got him pyjamas that zip up the back. This really helped reduce the extra laundry from during the night.

Before you go - can you make contact with organisations in Malaysia who may be able to help and make appointments to meet them ? You will want to use your time wisely whilst you're there

There's only so much doctors can do, however a local support network is worth it's weight in gold.

Yes, it's a good idea to just take things with you that might help. Can you get your mum or someone else to get you measurements for the beds?

I empathize massively - have seen similar in my family, though at an earlier stage. The shame and embarrassment and the behaviors that stem from them are more of a problem than the actual incontinence. Good luck with whatever you try, and remember that there's only so much you can do. If practical actions are needed, would your mother be open to having someone come in to help with them (e.g. helping do loads of laundry, change beds etc.) to give her a bit of respite and support?

It’s so difficult. My mother insisted she only had a minor continence problem, ‘irritable bladder’, as she only ever used panty liners. The fact that these were totally inadequate during her last year living independently, and she nearly always came home wet to the knees, was ignored. I’d second talking to your mum about getting some support with laundry. I see there is also an Alzheimer’s disease Foundation in Malaysia too, is your mum in touch with them?

Thanks everyone! My parents are already involved with the local Alzheimer's Society, who have been generally very helpful and supportive ❤️

I think it's specifically the loss of bladder control, while still realising that he shouldn't be wetting himself, that is causing so much difficulty for my dad (and consequently my mum) as @WanderleyWagon says. So the removing of the incontinence pants when he's trying to get to the loo, the trail of pee because he's lost control on the way there, the hiding and washing, the denial, etc.

The zip-up PJs would be great @Wemdubz but Malaysia is a very hot country (even with air-con at night it'd be very uncomfortable to sleep in full PJs).

I've tried and tried to get my mum on board with getting a helper in (in fact some people at the Alzheimer's Society suggested it too), but she's incredibly stubborn about not wanting people coming into the apartment. Will work on her some more when I'm there.

@RasaSayangEh ah yes, do understand the full length pyjamas would be too hot. We also got these ones with a rear zip for summer but appreciate they may still not be suitable for Malaysia.

The lack of cooperation is the main difficulty. For someone I know, I think it was one of final straws (among a few other factors) that led to their elderly relative moving into a home. The elderly relative was peeing everywhere and anywhere, it didn’t matter what pads etc were in use , he just removed them. The friend was cleaning up constantly and carpets and furniture were being ruined. Sorry, not recommending any solutions, just recognising how hard it is.

You can get waterproof quilts and pillows
if it looks like he’s going to be at home for sometime
I’d replace carpets with vinyl flooring
and again you can get some nice waterproof armchairs
tbh your best off looking at options to make it easy to clean and nice for your mum to live in

my dad was a nightmare then we changed flooring and got the waterproof bed and bedding clean up was a fraction of the time and no smell as everything disinfected and sanitised

My mum would hide used incontinence pants or wash them (this is not good with disposable ones!), but I found reusable ones that she accepted better and though she would hide them still, at least she wore them and their carer just did a sweep round all the usual places when she came (and dad checked the easy places like her pants drawer which then only contained the reusable incontinence pants).
There are blankets which seem like totally normal fleece throws but which are waterproof and might be acceptable to your dad on the sofa.
My poor dad was so overwhelmed coping with mum and ashamed of her incontinence he just didn't have any headspace to try anything more than once, so I think going equipped with as many options as possible and being the one to fight it out with your dad is the way to go

I actually cried reading this post. I have nothing to add that will help you unfortunately , but I could have written it word for word. I feel so sad for my dear patient mum, who is in the thick of it right now. I wish I could do more to help her. Makes me feel a whole lot worse when he yells at her, when all she is doing is trying to look after him. Massive, massive hugs

As pp said you can get washable incontinence underwear that my dad had. Your dad might not notice that it is different from normal underwear if you get his accustomed style eg y fronts if he’s used to those. It’s so hard with elderly parents as problems come in phases but there’s no clue how long each phase might last.

If your Dad is wandering at night then there are alarms that can alert the partner that the person with dementia has got out of bed. They vibrate, or make a very low noise, so don't startle anyone. DMIL had one as DFIL was wandering at night, and was a risk to himself plus DMIL couldn't sleep properly from worrying. Just an idea.

Nothing to add to the good suggestions you've already had as regards the actual incontinence. But regarding cleanup, I have found that the spray you get to sanitise cat litter trays is amazing for removing the smell of urine. Ordinary household cleaner just doesn't cut the mustard.

Have a look at Vira-care they do a good range of washable incontinence underware.
I think they are called Kylie pads, they are large pink quilted washable type pads that are brilliant for putting in beds, on chairs, car seats etc, they are substantial and last forever.
i know how hard it is you solve one problem and two more crop up.
don’t forget to take care of yourself.
good luck.

Thanks again everyone and to all who have gone through this with their own loved ones

I've ordered several of the recommended products to take with me and will also take my mum shopping while I'm there for the larger items.

Fortunately it's all hard flooring in their apartment (hot country) so no carpets were harmed in this production, although half the sofa is doomed, we'll probably need to buy a whole lot of extra mop heads and the washing machine has never seen so much use in its life.

We have discussed the question of when to put my dad into a home, but my mum says (and I believe she is right) that once we do that, it'll mean a very steep decline of whatever's left of his mind. So it's a difficult balancing act between his health/needs and hers.

Providing appropriate care is not easy, I understand your mother’s concern but remind her she mustn’t lose herself while trying to provide the best possible care for her husband. Maybe she’ll accept help coming in if you can persuade her it will help your father remain at home as long as possible.

Do remember to tell her, and your father too if he’s still able to understand, how very normal incontinence is. Removing some of the shame helps reduce the amount of denial which should make it easier to manage.

Hope your trip goes well and you’re able to provide practical support for your parents.

I find these very useful.

Washable Bed Protector/Pad with Tucks - Pack of 2
https://amzn.eu/d/cjSFFIG

They will absorb and retain a huge amount so not only useful on beds but also on the sofa. They sell chair pads which would be useful in chairs or in the car. I would also recommend 1tog duvets (so easy to wash and dry quickly) and single bed if possible to cut down the weight of laundry.
I have a severely disabled adult son with continence issues and we are kitted out with all of the above. Also sanitising washing liquid and final rinse products.
It must be such a struggle for your elderly Mum. When I cleared my parents’ house it was heartbreaking to find so many carpet/upholstery cleaning products and air fresheners. They had been struggling and covering up the issues for a long time before admitting they needed help.