incontinence solutions !!!!!

[Keepingwithitjustabout]

NC for privacy.

DF and DM moved in with us post lockdown1.
DF has advanced Parkinsons. Now has undiagnosed dementia (awaiting that and so many things NHS).

Anyways. Never thought I'd ever talk so much about wee. OMG. We've been through having a commode, not being able to get up to the loo in the night, not remembering he can't get up in the night and getting stuck, suddenly being able to get up and go to the toilet in the night in the dark without telling my mum and falling, a thing called a 'convene' that I wouldn't wish on anyone (basically its a condom with a tube to a bag for wee - which my DF repeatedly pulled off in the night).

We only have one bedroom for them currently ( converting extra room but won't be ready for a few months and things going downhill fast) - so getting carers in the night is going to make my DMs life even more hell (even though she is already his carer and he won't let her sleep :-( )

We are now trying adult nappies and pads in the night. This is not fun! Anyway the NHS do provide these but - they only give you 2litre capacity ones. (this sounds a lot - it isn't - because of course they leak out after one wee). Age Uk sell ones that are 4 litres and very absorbent.

The district nurse has just been on the phone and says that incontinence products 'should be changed after every wee' ! My dad goes six times a night. Every time you change these things its a massive operation. My DM can't do this. She was very 'computer says no' about this and my DM has been in tears (so have I TBH)

So my question is - what the hell do they do in care homes or for people who live alone? Does anyone knw whethert the care home is getting their loved one up six times a night to change an incontinence pad (I am guessing this is a big fat no). What about all the lone elderly people - those on state care packages aren't getting visits during the night are they (I have seen on many forums that you only get four visits a day - 24 hours - paid for).

Anyway I wanted a rant.
They are very lucky that they can afford care and to buy the +++++ pads themselves, but if/when we have carers in the night my mum won't have anywhere to sleep.

Maybe chat with the gp? 6 times a night is a lot. Otherwise maybe ask about a catheter?

Firstly you don't change after every wee... the average big wee is about 350-400mls... so a pad is designed to absorb several. I doubt an elderly gentleman wees this much in one go anyway.

Catheters are not given to manage incontinence

I suggest you find the best fit pad (trial and error ) and buy an absorbent washable sheet and mattress protector.

I feel for you. Been there. Xx

The problem is if he's lying on wet he'll get pressure sores.

I combined - so a Kylie underneath and then pup pads (much cheaper but less capacity - about 1.5l). A quick side roll and whip out the pup pad and put in a new one, once you're changing all the time imo it's much easier to go smaller.

Six night wakings means you need night care. It would be a waking night shift with 6 wakings.

My mum has Parkinsonism and has similar issues
We are currently dealing with the incontinence nurse who has sent samples of different pads to help.
It’s very difficult, currently my mum does change them herself but I do have to mop the bathroom floor every day as there are spillages
The nurse told me this week it’s not good to have too high a pad as they can draw out other body moisture ie sweat and dehydrate you
You are better to have lower volume and change more often. My mum gets 3 pads a day from the nhs, they are applying for 4 but it’s an approval process and is the max she can get, it’s not enough we also buy them from boots. The nurse doesn’t understand my mum like your dad is up multiple times through the night going the toilet and needs more pads
I also worry about the smell if she doesn’t change pads as often
I wouldn’t wish this on anyone so I hope you find a solution op 💐

I echo the puppy pads, my mums can’t get in bed anymore so had forgotten
We had 2x waterproof mattress protector, sheet then a washable incontinence pad and used puppy pads on the floor where she hit in bed as often wet the floor getting out if bed when she managed a deep sleep
Puppy pads are great and better value

He seems to be going an awful lot of times. It can't be good for him having such a disturbed night's sleep. Not good for those around him either.
There are medications that can be prescribed to reduce nighttime urination. Maybe you GP can help or can refer him to a urologist.
It is also worth checking all the side effects any medication he takes in case it is acting as a diuretic.

No. Care homes and hospital wards do not change people 6 times a night. My experience is that people get one pad check/ change in the night. Fresh pad before bed, one in the night and new one in the morning should do most people.

Incontinence is one of the top triggers for care home admission after insomnia.
You can see why really can't you.

Thank you all!

Yes we have mattress protector, and washable bed pad he sleeps on, and quilt protector etc.

Parkinson's affects ability to empty bladder meaning urge to go and not a great deal coming out in the day and more seeing in the night than there should be. We are loading the daily liquid intake to the morning, Parkinson's nurse is constantly reviewing the meds for this - he was on clonazepam for restless legs but has this week swapped to melatonin.

He doesn't recognize my mum needs to sleep now (tbh he hasn't for a long time). - he get up and puts the radio on and tries to talk to her if she's woken when he (tries to) gets up for the loo. When we talk a out it in the day he says 'but I don't mind being woken up'. In the night he's telling her that she's waking herself up and 'needs therapy'!

I'm trying to tell her that we need to stop being angry with him and be more 'water off a ducks back' now as it's isn't his fault, but really I'm so worried about the world of shit we are going to see soon. She is so tired and can't really see any more; and any idea about pressure sores, nappy rash, and faecal incontinence.

We just can't do the home thing yet - I think he would hate it beyond measure.

Tis shit

Ask for a referral to the incontinence nurse, if you can. In my local authority there is an overnight care service which comes out once a night plus you can ring them in emergencies. The vast majority of their work is incontinence care. However, I also know that we are an outlier and nowhere else in Scotland provides this service - they just give pads etc and run an emergency service. The incontinence team has suggested that a lot of the overnight calls could be avoided if the person was treated properly to address the issue, rather than just being given pads and told to get on with it. I don’t know how that relates to Parkinson’s, though.

One thing I do know is that the lack of sleep he’s getting will make him more confused and appear more demented - it’s a vicious circle! I really feel for your mum as well. Is she getting any support as a carer? There’s a carer’s allowance, and the council has a duty of care towards her as well as him. Do you get any respite?

Parkinson's does have a related form of dementia so that may explain why he is insensitive etc
There are meds for it that possibly help a bit so might be worth asking about those if you haven't already.

What about a respite break in a care home? Would he maybe agree to that? I suppose with Covid that may be less possible but it's a way for your mum to get a break and some sleep.

Oh sorry just read OP again and I see you are waiting on the dementia diagnosis already

I was bizarrely fascinated by this and had a quick Google and it looks like the average number of pads used per 24hrs is 6 in total definitely not 6 in a night.
Many incontinence services only provide enough for 4 per day as that is the number expected to be used so I think it's safe to say that the nurse had very unrealistic expectations and can safely be ignored.

I just think if he went in for respite care he'd never come out.

We have a care needs assessment on Monday so we will see what they say.

My mum is flagged as a carer but really what can they do - nonsupport groups running and no escape really.

I could spend a full time week on admin for them. They can afford care but their generation see the prices and don't feel they justify it. Even if they do know they aren't going to luverever and now is the time to spend it.

Plus, unfortunately, these things mean people have Les and less care for those around them. I find myself being very short with him when he's demanding to know where his newspaper is and I'm dealing with somethong else (like my own life, work, children). Then I feel guilty and annoyed

I used to be the Bowel and Bladder link nurse on an Older Adult mental health ward. (Scotland so may be slightly different procedures in your area).

I would expect to complete a fluid intake/output for 4 days and that he'd be prescribed appropriate sized pads. The best type are inserts (large sanitary style pads) worn with close fitting underwear. These have the least chance of leaking but come with the risk of your dad pulling them out. We only ever had adult slips (nappies) prescribed at end of life due to the risk of leakage from movement and that they need to be accurately measured for fit, plus skin damage that may occur.

The norm would be 4-6 pads/inserts per day and if a clean pad is put on at bedtime it should be expected to last maybe 10pm-6am. Unfortunately I have nursed lots of patients with dementia who pass lots of urine overnight and would need to be checked for how wet they were 4 hourly as a minimum and usually assisted to change into a fresh pad.

I would hope that the melatonin will help with sleep so that in turn your mum gets some sleep. Carer stress and pressure in Parkinson's and dementia is high. Has your dad been referred to a Community Mental Health Team? He would certainly be 'picked up' by the CMHT in my area and the nurses would help in identifying assistance, liaise with psychiatry for a dementia diagnosis etc.

They can afford care but their generation see the prices and don't feel they justify it. I think it may be something that happens to all of us - once you retire, you spend less on certain items, and prices get "frozen" at what they were when you were working and spending more. I can't believe how much I've just spent on a pair of boots, and I have to accept I can't get a silk shirt for £30.

@Keepingwithitjustabout i have no advice i'm afraid. What a hard tiring situation you all find yourselves in. Don't feel guilty you are doing all you can in a stressful situation

Is there anything you can do at all to help your mum's sleeping accomodation? Even a new sofa with a bed that pulls out so at least she is separated and can maybe set an alarm to check on him two times in the night?

@JazzTheDog thanks for that practical advice. (my DM lost it on the phone with the community nursing yesterday and didn't take in anything they were saying)

She has silled out a very detailed liquid intake and output diary for them last week yes, inconitinence service is merged with community nursing here.

I think given what you;ve said she wasn't ready to hear that actually the implications of using the really absorbent slips are massive adn mean we are in a new place. I will talk to her about trying the pads - and if as you say taht maybe they leak less than she thinks. He wakes thinking they have leaked as well,

I'm in a very similar position OP. And it sucks. Big time.

DF88 lives with me and has a condition that comes under the Parkinson's umbrella but it's not the same thing.

He'll do one wee when I get him up at 8am and he doesn't do another until 8pm. Bed at 9pm. He wees a LOT during the night.

A year ago he had a temporary in-dwelling catheter for an unrelated problem. It was in for a month. It was interesting to see what his urine output was. During the day was 200mls. During the night it was 2000mls. He no longer has the catheter but this is still his pattern.

So what do I do at night? He can't get out of bed unaided. (He can't do anything unaided.)

To start off with he had a urine bottle by the bed and he'd wee in that. Then it wasn't enough so he had two. Then he got too shaky and he'd drop them or they'd fall on the floor. Nice surprise for me in the morning. Then he'd get too confused and think he was weeing in the bottle but he wasn't. Then more of the wees came while he was asleep and he didn't even attempt to use the bottles.

We use a waterproof mattress protect. A sheet. A disposable bed pad. (Tenna bed mats with wings). The NHS don't supply these. I get them from Amazon. I found the washable bed pads didn't hold the wee in one place and the spread was too extensive.

After dicking about like this for a couple of years, he relented and agreed to use an incontinence pad. The continence nurse gave us a few to try. They're all as awkward as each other. We settled on one and have the highest absorbency possible. We've gradually increased but now have 4 per day/24hrs which is the max we're allowed. They come 12 boxes at a time so I have store the buggers!

So. Bed time. He wears pants to keep one in place in the regular position. (Willy MUST point down.) It leaks because they lie when they say they hold 3000mls. So I put another lengthways round the back, still in the pants. I put a third lengthways across the front, still in the pants. I put two underneath him cos they're free and the bed mat isn't.

This works relatively well until he forgets my master plan and tries to get his willy out anyway. Or only half gets it out but it's left pointing up. Then he wees all over himself and the bedding.

It's a 4.5 tog duvet so it fits in the washing machine and we add blankets during the winter.

Although this means he's in a damp pad all night, it is what they're designed for and like baby nappies, they draw the moisture away from his skin (although not as well). It doesn't smell like it does when it goes everywhere. I use that cleansing foam (I'll add a link) they use in hospitals and care homes to clean him up in the mornings before getting him dressed.

He HATES the shower! So far his skin is coping ok but obvs I check it daily. We had a flurry of attention from district nurses after his hospital stint last year but they all fucked off in March when covid hit and I've not heard a dicky bird from anyone since then.

I'm not sure where I'm going with this anymore. I don't know what the solution is, for you or for me.

I might explore what was suggested up thread about medication to reduce night time urination, but I've mentioned it before and nothing was forthcoming.

Our only saving grace is that my mum died 12 years ago and was spared all of this :( I gave up work and look after him full time.

Vernacare Senset Cleansing Foam -... https://www.amazon.co.uk/dp/B01I3XU640?ref=ppxpoppmobappshare

Conti SoSoft Large Heavyweight... https://www.amazon.co.uk/dp/B00J3UMQXC?ref=ppxpoppmobappshare

Tena Bed Plus Wings - 80 x 180 cm, Pack of 20 Sheets https://www.amazon.co.uk/dp/B0099QEZT8/ref=cmswwrcppapifabt118YLRFbG17JHHB?encoding=UTF8&psc=1

@greenplum
solidarity for you. yes I think that reveres weeing habit is what we have two. I've wighed the pads and its well over 600 ml - but that's only one of them.

Thanks for those links, esp the cleansing foam.

The heating has broken this morning so that a massive spanner!

sorry my keyboard is sticking and loads of typos

Last night was a prime example of the difficulty we face. Got him in to bed at 9pm. The PSP (his neurological condition) stops him sleeping so he has 20mg of melatonin!

2am the alarm goes off. There's a mat on the floor and it sounds in my room. He's trying to get up because he has a train to catch. He doesn't! Get him back in to bed. Thankfully he's now in a hospital bed which goes low to the ground so he can't actually stand up or he'd fall over. We had years of falling over.

4am he calls me using the plug in door bell by his bed. The noisy bit is plugged in in my bedroom. He says it's time for breakfast. No it isn't. Go back to sleep.

8am I go in to get him up. Pads pulled off, Willy hanging out. Soaking wet dad, PJ top, pants, sheets, duvet cover, duvet, blanket. FFS.

This reads like dementia, but I don't know. He can be fine for weeks without doing it.

And don't even get me started on poo. That's a whole other thread!

Sorry to hijack your post again. I was just thinking about you saying your dad tries to get up in the night, forgetting that he can't. Same!

You're doing a great job. I hope you find something that makes life a little easier,

It leaks because they lie when they say they hold 3000mls They may well hold 3000ml when lying flat on a table. That's not the same as having a 12st man lying on them squeezing the urine out.