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New here: A question about toileting

Evoque

Registered User
Mar 14, 2017
53
Hi everyone.

Up until recently, my Mum lived in Scotland, and in January I moved her to be near me in Sussex, so I could keep an eye on her more easily - it was clear to me and my brothers that she was not managing on her own.

One of the main problems we have to contend with is her toilet habits. Whenever we need to go anywhere, she declares she will "just spend a penny", then spends 40 mins in the toilet. What with her dementia, it becomes a real trouble because she will come out of the toilet, go and put her shoes on, then declare "I'll just nip to the loo" and it all starts again. Factor in combing hair, looking for a tissue, finding her bag/keys ... and these getting ready rituals can extend to hours. Not good when there is a doctor's appointment to get to!!!

She seems to have a fixation on wiping herself over and over again while in there. Also, she stuffs her pants with paper - toilet paper, tissues, kitchen roll - and, when that runs out (because it does, rapidly) she resorts to hankies, face flannels, even napkins.

Has anyone else seen this in a loved one, and does anyone have any idea as to how to tackle it?

I spoke to an Admiral nurse, who suggested that as it isn't causing Mum any ill health maybe we should just accept it - but this habit runs to night-time as well, and frequently Mum will sleep in her armchair, fitting in toilet visits all night, rather than actually go to bed. Also, her whole flat gets very dusty because of the fibres that come from the toilet paper. Also, it is affecting her quality of life, because she spends huge portions of the day just wiping, wiping, wiping or stuffing :-(

This is a habit that has been around for years, and just gets worse and worse.

Thanks in advance for any help!
 

father ted

Registered User
Aug 16, 2010
711
London
Hi everyone.

Up until recently, my Mum lived in Scotland, and in January I moved her to be near me in Sussex, so I could keep an eye on her more easily - it was clear to me and my brothers that she was not managing on her own.

One of the main problems we have to contend with is her toilet habits. Whenever we need to go anywhere, she declares she will "just spend a penny", then spends 40 mins in the toilet. What with her dementia, it becomes a real trouble because she will come out of the toilet, go and put her shoes on, then declare "I'll just nip to the loo" and it all starts again. Factor in combing hair, looking for a tissue, finding her bag/keys ... and these getting ready rituals can extend to hours. Not good when there is a doctor's appointment to get to!!!

She seems to have a fixation on wiping herself over and over again while in there. Also, she stuffs her pants with paper - toilet paper, tissues, kitchen roll - and, when that runs out (because it does, rapidly) she resorts to hankies, face flannels, even napkins.

Has anyone else seen this in a loved one, and does anyone have any idea as to how to tackle it?

I spoke to an Admiral nurse, who suggested that as it isn't causing Mum any ill health maybe we should just accept it - but this habit runs to night-time as well, and frequently Mum will sleep in her armchair, fitting in toilet visits all night, rather than actually go to bed. Also, her whole flat gets very dusty because of the fibres that come from the toilet paper. Also, it is affecting her quality of life, because she spends huge portions of the day just wiping, wiping, wiping or stuffing :-(

This is a habit that has been around for years, and just gets worse and worse.

Thanks in advance for any help!


What you describe sounds exhausting as well as frustrating if you need to be somewhere. My Mum has similar issues around the toilet. She goes to the toilet many times during the day (consequently many blocked toilets over time). Will spend 10 minutes in there on a quick visit but can stay in there up to an hour as she won't come out unless she feels comfortable which obviously causes problems in a house with 4 other people. As my Mum does all her own personal care I don't know how wearing pads all the time and vigorous wiping is effecting here but she doesn't complain about soreness/irritation.
Also frequently when any of us go to the loo she says 'it's my turn next' although I don't think she would have gone had we not gone, if that makes sense?
Don't think there is any answer but if it's not bothering her or you too much I agree with nurse.
 

Amy in the US

Registered User
Feb 28, 2015
4,617
USA
Evoque, hello, and welcome to Talking Point.

I'm sorry you had to find your way here, but hope you will get support, advice, and help. It's been a lifesaver for me.

I'm sorry to hear about the "going to the toilet" fixation with your mother. I imagine it's very tiresome and stressful.

While I am not sure I have any practical advice to offer, I can reassure you that yes, I have definitely heard of this before in PWDs (persons with dementia), both here on TP, elsewhere online (I think maybe in a Teepa Snow lecture), and also in my real life support groups.

I could probably do a search for you and pull up some older threads on the topic, if you would be interested.

From personal experience, I can tell you that my mother has a fixation on toilet rolls and also Kleenex/tissues. Before she went into her care home, this fixation also involved kitchen roll (we cleared a staggering amount of paper products from her home).

She takes the Kleenex out of the box and folds them into rectangles, or little squares, and they go everywhere: pockets, bureau drawers, under her pillow, in the cushions of chairs, you name it. There must be at least three open boxes of Kleenex, and at least two more unopened boxes, where she can see them, at all times. (Her room at her care home isn't very large!) It must be a certain brand, and the box must be a certain shape, or she cannot seem to "see" them, and can't get them out of the box.

With toilet paper, again, it must be a particular brand, and there must be at least ten unused rolls visible in the bathroom at all times, in addition to the one "in use," as well as at least one unopened package on the floor of the bathroom. She winds the toilet roll around and around and around her hand, before she wipes. (Despite this, she cannot clean herself very well, and her hands invariably become soiled.) If it is not her particular brand of toilet roll, I do not think she can recognize it as toilet roll. If she is in a public toilet or toilet that has a cover over the toilet roll, she cannot find it. She gets agitated if there is not enough toilet roll, or if she cannot find it.

Any of this sound familiar?

My only practical thought is that perhaps it is time to change or increase her care, to help with routine and to supervise her going to the toilet. If she were at day care or had a carer present or similar, perhaps she would be distracted/busy enough to help break the "toilet loop" or perhaps they could help with a toileting routine, and gently discourage some of the unnecessary trips. If someone were in the toilet with her, perhaps they could gently direct her, and shorten the length of time. I have done this with my mother, but it takes some trial and error to find the right approach. My mother recently spent a week in hospital and has been in a rehabilitation/nursing facility (not her usual care home) for some time, and I observe, when I watch (but when my mother doesn't know I'm there) that she is much quicker and more efficient with the nurses/staff members, than she is with me.

I don't know if anything here could be helpful, but in general, there is a lot of good information on the UK Alzheimer's society website: https://www.alzheimers.org.uk/info/20029/daily_living/13/toilet_problems_and_continence

You could ask for a referral to the (In)Continence Team or Nurse or service in your area. I don't know if they could help, but it cannot hurt to ask.

It is clearly a problem and, as you say, affecting her quality of life. Many of us here on TP have dealt with issues that negatively affect our PWDs and so, even though I haven't been exactly in your situation, you definitely have my sympathy.

I hope you are able to find a way forward. If you are so inclined, please do return and update us; it's a nice group of people. I personally found that dementia was a steep learning curve for me and could not have done it without the support and advice I received here.

There are other sources of advice; you might see if there are any carer's cafes or groups or something similar in your area. Someone who is a UK resident will need to advise you on how to find those, or you can try here: https://www.alzheimers.org.uk/info/20001/get_support

Best wishes to you and your family.
 

Philbo

Registered User
Feb 28, 2017
804
Kent
Hi Evoque

My wife's been diagnosed with fronto temporal dementia (FTD) since Jan 2014. Even at that early stage (think she'd been showing signs a couple of years prior), she has had a thing about tissues etc. (My wife's mum's partner had vascular dementia - both sadly now deceased - and he used to wrap everything up in tissues).

The toileting issue for us has steadily declined, particularly so in the last year to six months. It started off with her having little accidents and the panty-liners she used didn't contain the leeks. Moving on to more absorbent pads, I found that she would discard all over the place (bad enough indoors but nightmare out and about). As it's got worse, we are now using Tena Super pull-ups, which we've just managed to get the Incontinence Team (NHS) to start providing. These are pretty effective, although we still get the occasional leak.

With my wife, the problem has always been that she either forgets to wipe or no longer realises she needs to. Like your mum, she's up and down to the loo countless time. More often than not, she just goes in there, looks at the toilet, grabs a load of paper and comes out again.

My one and only consultation with our local Admiral Nurse resulted in a similar "well if she's happy, let her get on with it" response - to just about everything I was saying was an issue!

The incontinence team will only really be interested if your mum is actually incontinent. When I tried to get advice from them when I first became aware of the "not wiping" issue, they said they couldn't help.

I have been advised that the problem with dementia is the person forgets processes - so the normal act of going to the loo, for instance, is forgotten. They may still realise the need but what to do when they get there is lost.

I have found (again following advice from forums such as this) that pre-emptive toileting can help. So, when I get my wife to change her pull-ups, I encourage her to use the loo and most time, she goes. I then help her get sorted afterwards.

Good luck with your mum.

Phil
 

Risa

Registered User
Apr 13, 2015
482
Essex
Hi Evoque

Is it possible to escort your Mum to the toilet and see if she is struggling with the sequence of what to do as this could be why she takes so long/wants to go so frequently. My Mum also doesn't sit on the toilet for more than a few seconds before saying she can't go as she doesn't give herself long enough - could your Mum be doing the same thing?

Before Dad started assisting Mum she kept using towels and face cloths instead of toilet paper so Dad started hiding all the towels in the bath (behind a shower curtain) as Mum never went looking for anything - she would only use what was directly in her eye-line so perhaps hiding your Mum's towels might help?

Obsessive compulsives can be prescribed SSRIs so would it be worth exploring drug therapy with her GP/Memory Clinic to see if it helps? This obsession with the toilet does sound like it is dominating her life and spoiling things if you want to take her for outings etc :(
 

Evoque

Registered User
Mar 14, 2017
53
Hi folks.

Thank you for the replies. Sorry it's taken so long to get back to you!!! But I do appreciate the time you took to reply.

The GP tried her on tablets to control the "urge", but it made no difference at all.

I have taken Mum to a urologist, but getting her out of her flat to the appointment was a challenge, and I had to shout at her to stop faffing about with her pants/tights and hurry up, because we had to be there at a certain time. The long and the short of it is that the urologist gave her an ultrasound scan, and as she had a totally empty bladder, he couldn't see if there was a physical problem at all (poor sphincter muscles; "twitchy" bladder, etc) so she has an appointment next month that will ascertain that for sure.

If it turns out to be no physical problem, I will definitely ask about SSRIs.

What Mum does when she goes to the loo is, well, afterwards, she wipes. Then wipes again. Then again. Then again again ...and so on.
Then when she's finished that, she pads her underwear with toilet paper.
Then, of course, that kind of thing just sort of bunches up and is uncomfortable, so she spends ages readjusting it.

I have suspected for some time that it is an obsession, and of course with Alzheimer's there's not much you can do about that, but maybe SSRIs might calm the compulsion to do all this.

My brother thinks I should just let her get on with it, as it "isn't doing any harm", but it IS doing harm. The fibres from the toilet paper leave a fine dust all over the house; the carpets get covered in bits of toilet paper; the cost of this would be astronomical if I allowed her to use all the rolls she wanted (more than six a day); and Mum would eventually spend all of her time in the toilet, wiping, padding, adjusting, flushing, wiping and padding again.

It is so stressful :-(
 

hillymilly

Registered User
Nov 29, 2012
19
Paignton
I know exactly how you feel Evoque! My mum pads herself up with toilet tissue inside her Tena pads. I mentioned about this on another thread somewhere. And the dust does get everywhere, doesn't it. Mum also has boxes of tissues, half used toilet rolls and small packets of handy andy's all over her room. We must all be keeping the paper tissue industry going!

Sent from my SM-G900F using Talking Point mobile app
 

LadyA

Registered User
Oct 19, 2009
13,563
Ireland
Evoque, it may not be a bladder problem, as such, but the feeling of needing the loo may be genuine.
Once women are past menopause, with the drop in eostrogen, the walls of the vagina start to thin. Vaginal atrophy, very common in older women, is a major factor in repeated UTIs, and can cause that feeling of constantly needing the loo, and eventually, can lead to urine incontinence.
 

Tin

Registered User
May 18, 2014
4,825
UK
My mum had these"oops moments" before dementia and she would deal with it by wearing small pads, so a physical problem dealt with. Then Dementia took hold and it became a mental issue, she stopped using the pads and started loading her knickers with folded pieces of tissue or toilet paper and was continually wiping herself which caused some dryness, itchy and sore areas - so red and painful looking that then became infected. I had to stop her from rubbing so much by pulling her hand away from the area.

A cream was prescribed and all well. But it started happening again a few weeks ago again cream and anti biotics prescribed. Now I am not letting mum use toilet paper on her own until I have put a small amount of oil on it or I wipe, wash and dry her. I have a bidet and this would be perfect to wash mum after each toilet or pad change, but she will not use it - "foreign rubbish".
 

jb2

Registered User
Sep 21, 2012
15
Toilet worries

My mum hardly goes to the toilet all day,
But goes more through the night.

All through the day I ask her to go to the toilet.
She says she does not need to, or she will say she has used the toilet.

I am worried

Can someone advise please

Many thanks
Junie
 

Novice

Registered User
May 8, 2017
40
Hi June. Sorry I can not help with this one. Mine is more a fathered problem can not get Mum out of the toilet, although there are only three of us in the house! More fun if you are using a public convenience and there is only one cubicle. Half an hour later - massive queue:eek:
My problem shared elsewhere is that Mum is not using the toilet during these long periods but tearing the toilet paper into minute pieces. When asked why, she says so it will go down the toilet. When she does clean herself up, she then tries to clean the paper so she can save it and reuse it next time. I would love to know what goes on in the head of PWD to make them do things, but I just get on with cleaning Mum and the toilet floor!
Anyone got any ideas? Someone has suggested trying a bin in front that she can see.
 

Dave66

Registered User
Sep 13, 2014
78
Hi Evoque and welcome to Talking Point

On a bad day, my Mam can visit the toilet almost every 20 minutes on the dot around the clock. I'm obviously not an expert, but I've worked out that most of the time when this happens, erm, I'll have to put this straight, she hasn't had a good number two. I think Mam can "feel" that she needs the loo, but is unable to go easily.

For good or bad, I now try to make sure that Mam has some liquorice allsorts, fig biscuits, raisins and on days when I'm not happy with the results of her number 2, then I will give her something like Lactulose.

Once Mam has had a good visit, the regularity of her toilet visits returns to normal, just requiring a wee every few hours.

Mam also has an on/off relationship with folding and unfolding tissues and hankies repeatedly throughout the day, this has been going on for a few years now. I guess we're lucky, we have to tell Mam to wipe herself when she's been to the loo, but most of the time now, she has to be shown or we have to do it for her.

Good luck with your Alzheimer's journey, you will find that things can change overnight, but you are not alone now you've found Talking Point.