Options for incontinent parent

[daydreamer45]

Hi, wondering if anyone here has any experience or knowledge of the following. My Mum is currently really struggling. She has Parkinson's and dementia and has started having bladder issues. She says she wants to go to the toilet then can't go, then wants to go 10 minutes later. She also sometimes wets herself and doesn't realise it has happened until she feels that she is wet. We have got her incontinence pants but she is stressed and anxious all the time. She lives in a house with the only bathroom upstairs and can't get there very quickly or unaided, she struggles with stairs and undressing so needs my Dad with her all the time. This is exhausting for them both and completely fills their day. There is no capacity to build a downstairs toilet and no private place for a commode. We are currently waiting for a bladder & bowel referral. Does anyone have any idea what her options may be? I don't think she will be a candidate for physio due to her dementia (struggles with simple exercise and has no concept of pelvic floor muscles) and is already on many medications. We don't really want her living upstairs permanently, it's not really possible as it means my Dad will need to be running up and down all day. Her GP has suggested a care home but surely they can't offer a 1 to 1 service where someone runs around after her all day? What do people do in this situation?

Has she been checked for a uti as the desire to go but struggling can be a symptom? Sorry you are all going through this.

I doubt a catheter would be an option as there is no clinical need of such. Can the gp refer her to the district nurse for a continence assessment or maybe her parkinsons nurse will have some experience of this situation

I'm sorry, this must be very stressful for you all. Has the GP ruled out a UTI? Has she been referred to a continence nurse? They might have further suggestions other than just exercises, or better pads etc. Do you know if she might have a prolapse or something physical that could be repaired or require a pessary ring to help? Maybe a timer and your dad could prompt her to go more often?
Could you not get a pop up changing tent for the corner of the room downstairs, and sit the commode inside that for privacy?

Definitely get her checked for a UTI. Continence teams are usually very good. They may commence some bladder training, help with pads/ incontinence knickers and provide practical advice. Lots of people have commodes in their living rooms, although I understand it may not feel very dignified. It may free your Dad up and allow her more independence. Could she transfer safely from chair to commode on her own?

Commode and a curtain?

Thank you for the prompt responses. We have done several UTI tests and she is always clear. The PD nurse has referred her to bowel & bladder but we are waiting for them to get in touch. I'm not sure either of them will go for a commode in the lounge, she sometimes starts to wee as her pants come down so it would be a difficult clean up job for my elderly Dad - he keeps the mop handy in the tiled bathroom but it's all carpet downstairs. He would also have to carry it upstairs for disposal. Unfortunately she can't get out of the chair and transfer to the toilet alone so Dad would still be needed but it's the stairs which are killing them both. I was at the house yesterday and she wanted to keep going to the toilet every 10 minutes so it's not even a case of reminding her. We have tried taking her every 2 hours but that's still at least 7 trips up and down per day and she doesn't always go then wants to try again in 10 minutes. She doesn't like going in her 'pants' but it seems to be the only logical solution to cut down the trips - I just don't want her to be sore or uncomfortable though. What happens to people who are bed bound? All of this has really made me think about my own plans for old age!!

It sounds as if the house is unsuitable and her care needs are getting increasingly significant. Suitable continence pads and more care would be helpful, where that care is provided is a discussions that needs to be had. Does your mum still have mental capacity to decide where she lives and is cared for, and is POA in place for when she doesn’t?

Well it seems quite obvious that they need to move house so they can have access to the facilities they need all on one floor, however I appreciate this isn't an easy and simple solution.

I work with an old lady who had exactly the same problem so we put her in incontinence pants and the effect was very positive - knowing she was wearing the pads took away her anxiety about accidents, which it seemed had become a large part of the problem. Once she no longer had to worrry about it, the urgency decreased and it seems even her bladder sort of relaxed so when she wants to go, she can. She wears the pants but rarely has an accident in them. The anxiety had caused a sort of self-fulfilling vicious circle, which was broken when she didn't have to worry about accidents anymore.

We had similar issues with my stepdad.
Make sure that there's no infection causing the need to go.

My stepdad now uses Sana incontinence pants from Aldi.

It really is just a case of incontinence pads and a commode. If there's no private place for the commode then it's a curtain or a divider as someone else suggested.

RE: POA - do I need this? I presumed my Dad would be able to answer on my Mum's behalf for any financial or medical decisions, I though next of kin would be able to do this. I am an only child so no other siblings to consult.

My dad (also with Parkinson's) was in a similar situation although they had a downstairs bathroom. He was going to the toilet every 15 minutes during the daytime and wearing incontinence pants though these leaked every single night.

Is there any space for a commode downstairs at your parents house? My dad had one supplied for his LA for his downstairs bedroom for the night-time toilet trips.

Other than that maybe a continence service referral? Dad had one but after 6 months of waiting he was hospitalised with sepsis, then discharged to a care home as he & mum simply couldn't cope at home any more even with carers coming in.

In the care home he's wearing heavy duty pads so on the occasions when the staff don't get to him in time, there's no leakage. I have to say he goes to the bathroom less now he's there which I think is down to being less anxious about creating washing.

Incontinence pants are only suitable for light cases as they don't absorb enough for medium to severe cases. So maybe that's a cause for distress? You'll need to supplement with pads/adult nappies/disposable pants if she'll tolerate any of the above.

You can get a screen that s teens off a corner of a room. Could you get one of those and keep a commode behind the screen? One of my Aunties had to have this as nowhere a toilet could be put downstairs. It worked quite well. Also instead of those dreadful incontinence pads get the disposable knickers. They fit better. Then it's just a change of the knickers and wet wipes. Clean knickers on. Shower in evening.

www.wayfair.co.uk/Etta-Avenue--Alasdair-Enchanted-in-Marble-Room-Divider-BSHW1234-L250-K~ARGV0123.html?refid=GX666875634657-ARGV0123_28107792&device=m&ptid=293946777986&targetid=aud-1648725145179:pla-293946777986&network=g&ireid=50968660&PiID%5B%5D=28107792&gad_source=1&gclid=Cj0KCQiAwvKtBhDrARIsAJj-kTircdwSGJ-asaxL87CyH2t6BUR0MCx2-qQ-d4JDwJn21laQQTe49rUaAhNFEALw_wcB

This is the screen I mean. You can get bigger ones too.

Yes, having joint POA with your father would be very useful for the future. However, your Mother might no longer have the capacity to agree to the POA, someone other than one of the attorneys needs to witness your Mothers signature and confirm that she has sufficient capacity to understand.

You might be too late to get POA for your Mother but if you don’t have it for your Father, get it done as soon as possible, otherwise you could end up not being able to make financial or medical decisions for either parent

I don’t think your Father can deal with your Mothers financial matters ( other than those in joint names) with our POA either, being next of kin won’t be enough for banks to let him access her accounts.

Even medical issues can be a problem without POA, when my Mother was on end of life care, I was only able to insist on no further treatment or hospital admissions because I had POA, being next of kin was not sufficient for her doctor or the hospital. I had to show copies of the POA.

Regarding the incontinence issues, even in a care home, it’s likely that your Mother will wear full incontinence pads or pants as the staff will not have time to take her constantly to the bathroom. I don’t know the make of the ones my Mother wore when she was in a care home but they seemed to be very effective at stopping leaks.

IMO, everyone over 18 should donate power of attorney to someone that they know and trust. We never know when we might be rendered unable to make decisions for our self - when we’re younger that might be temporary but unforeseen things happen and having it in place gives protection. DH and I are mid 40s and have it for each other (health and finance) and we’ll be talking to dc about it as he turns 18.

Legally, NOK doesn’t mean a lot at all. This explains it fairly well.

https://continuing-healthcare.co.uk/continuing-healthcare-guidance/why-should-a-lpa-be-in-place/#:~:text=It's%20important%20to%20note%20from,Power%20of%20Attorney%20in%20place.

It seems like a horrible step, but pads are the way to go. Trying to keep clean and cut down UTIs gets harder and harder as continence becomes more of a problem. However, it's also good to keep using a commode as long as possible (because it encourages movement and some independence, which is good for both Parkinsons and dementia) so it would be great if you could find a workaround to the privacy issue... Maybe a clothes rail with a sheet or curtain hung over it? And perhaps a pile of old towels next to it to throw on the floor in case of accidents. It sounds so undignified I know but it's a case of just 'making do' quite often.
It's so hard I know when you're dealing with ever-changing/growing care needs.

Pads are easier to change than knickers, which need you to take off tights/trousers and shoes and then put them on again.

I’ve had another thought! I spent five years supporting my fiercely independent Mum with dementia so have tried lots of tricks to keep her at home. She did end up in a care home during the first lockdown as she ended up in hospital after a fall and the hospital doctors said she was unsafe at home - I knew this but had tried to delay things!

I used doggy pee pads on the floor near the toilet pedestal to catch most of the urine accidents when Mum was in a rush and struggled to get her clothes off in time. On a carpet like in a living room they do not slip as much as they do on a hard floor so after we sectioned off a corner of the hall for a commode and screen ( a beautiful 1920s art deco free standing folding one) we were able to protect the carpet quite well. She was able to use the stairs so overnight used the bathroom and one of my first jobs each morning was to check the floor! We were able to block the front door and direct people round to the side door so we created a private area in the hall.

Not ideal but it kept Mum at home for her final year or so.

It sounds like she's may have a dip in her dementia however a UTI can also mimic a decline in Alzheimer's.
Her living situation seems unsuitable as the bathroom is upstairs.
I would definitely recommend a commode. She may have a hard time adjusting to having it downstairs and forgetting it is there ect.
Get a plastic box/ draw set with pads, wipes ect.

I disagree. I'm pretty well fully incontinent and find these work 95% of the time: https://www.ageukincontinence.co.uk/vivactive-pants-maxi-medium-2200ml-10-pack.html

I get a delivery of 20 packs every six weeks.

At night I put one of these in my bed, as the pants can leak from the sides of the legs while I'm sleeping. Also good for sitting on if needed:

Is she drinking enough water? My DM displays delirium symptoms when she doesn’t drink enough water. We buy her those little bottles of water. Easier for her drink and we can keep an eye on how much she’s drinking.

Also you can get a commode that looks like a normal chair. We thought two for my DM. Lloyd Loom style, so fit in nicely with her Victorian house decor.

Just seen my bed bad link didn't paste. It's these:
https://www.ageukincontinence.co.uk/incontinence-shop/incontinence-bed-and-chair-protection/bed-pads/vivactive-bed-pads-maxi-60x90cm-2600ml-10-pack.html