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Mother constantly needing the toilet ... help please! - Carers UK Forum

Mother constantly needing the toilet ... help please!

Share your ideas about the practical side of caring.
Hi, I'm new to this forum so I hope I'm following all the guidelines! I'd be grateful to hear any other carer's experience with this. My mother is 89 and has dementia. She was diagnosed with Alzheimer's about 3 years ago. Up until now she has been very sweet natured, but all that seems to have changed suddenly in the last 2 weeks. She started by getting up at least 6 times a night to go to the toilet. Her balance and mobility are so poor (she has arthritis and uses a frame) that she needs someone to go with her. I have a pager which alerts me when she gets out of bed. This became so tiring that my husband (who himself is 74) and I sleep separately and he takes the first half of the night and I take the second. It is relentless. Now, this week, she has started begging to go to the toilet every 30 minutes during the day. If I try and reason with her, she begs and pleads and then starts screaming at me and stamping her feet. I simply cannot get up half the night and then spend my days taking mum to the toilet literally every 30 minutes. I can't believe this is happening. It got so bad today that I have put her in her nightie and a cardigan, put her frame in reach, and told her she will have to go on her own. Of course, I have the pager with me so I do know when she's getting out of her riser/recliner and I do keep an eye.

Is this common? Who else has been through it, and what did you do? How did you cope? I have a telephone appt with the GP in half an hour. I'm pretty sure it's not a UTI but of course it could be so we will check for that. It breaks my heart to see her shuffling around in the daytime in her nightie and socks. Suddenly, she looks quite mad.
My wife has been a frequent nocturnal toilet visitor for quite some time, when she had a fall and spent 3 months in hospital she was fitted with an Intra Urethral catheter (and since then she has changed to a Supra Pubic catheter).

I have to admit that when she went into hospital having fallen, (she has MS which was getting worse at the time and she's not walked since) I was wondering how this was going to resolve itself as I disappear into oblivion once my head hits the pillow: a). she would have weed herself by the time she'd woken me, and, b). I certainly didn't want to be getting up hourly to escort her to the toilet.

With the catheter in place, all I have to do now is empty the bag in the morning. I don't know how a catheter will mix with a dementia sufferer, I can definitely anticipate problems, but speak to her GP about it. It's not fair on anyone to have to do what you are doing.
Ayjay wrote:
Thu Jun 25, 2020 5:08 pm
My wife has been a frequent nocturnal toilet visitor for quite some time, when she had a fall and spent 3 months in hospital she was fitted with an Intra Urethral catheter (and since then she has changed to a Supra Pubic catheter).

I have to admit that when she went into hospital having fallen, (she has MS which was getting worse at the time and she's not walked since) I was wondering how this was going to resolve itself as I disappear into oblivion once my head hits the pillow: a). she would have weed herself by the time she'd woken me, and, b). I certainly didn't want to be getting up hourly to escort her to the toilet.

With the catheter in place, all I have to do now is empty the bag in the morning. I don't know how a catheter will mix with a dementia sufferer, I can definitely anticipate problems, but speak to her GP about it. It's not fair on anyone to have to do what you are doing.
Thank you, Ayjay. I had wondered about a catheter as a solution, but with all that's going on and the lack of sleep, it had gone out of my head again. When I speak to the doctor next (to get results of wee test) I will ask what she thinks. I wish you all the very best with caring for your wife.
Oh jeez .... obviously a common problem!
This is my 96 year old Mum to an absolute T. I have probably posted about it on here before. She has alzheimers and poor mobility too and uses a frame. She is totally obsessed with needing “a wee”. I can arrive at her care home and that’s the first thing she says. She has an en suite so in we go. She does nothing. We come out, she literally sits on her chair and immediately says “I must do a wee”. I tell her she has just been but she tells me she hasn’t. In we go again and she might do a tiny dribble and that’s after she literally wriggles about and forces herself to go. This might be repeated many more times in the hour or so I am there and she exhausts herself getting up and down, pulling clothes down, washing hands etc.

I have tried everything, as have the staff. They say it’s a very common problem. We had the continence nurse in and she did a bladder scan and no problems there. She said there was no point Mum wearing small pads because she was not incontinent but I had tried those with her as reassurance, so we ditched those.

The staff say she is in and out of bed all night and they go and help her because she has a sensor on her bed as she had several falls when trying to get to the loo herself.

Mum has had countless urine tests to check for a UTI. The staff regularly check her urine if she has a bad few days.

She does get cross if I or the staff tell her she has just been. It’s the dementia and I don’t think there is anything positive anybody can do. I really sympathise with you!

Regarding the catheter, when Mum was in hospital for several weeks last year she had one and that did make life easier for her but her dementia wasn’t so bad then. I think now she would forget if she had a catheter in and still insist on going to the loo as it’s all in the mind.
Oh Penny thank you so much for replying. It's so good to know I'm not alone! We've since had the urine test result and mum does actually have a UTI which is a first for her. So she's on antibiotics which I'm sure must have kicked in by now, but it's actually 3.25am here and I've given up on trying to get some sleep and I'm just sitting downstairs waiting for the pager to go off every 20 minutes. At least my husband is getting some sleep so he can do the day shift! She says she has back ache. I'm not surprised, since she's been in and out of bed like a jack in the box every night, and up and down to the toilet every 30 mins in the daytime. I cannot understand why she's not exhausted. Well, she must be, but obviously the dementia is stopping her sleeping. I've given her painkillers hoping that would have a sedative effect but no joy. And yes, just like you, if I try and reason with her (I don't know why I haven't given up on that one) I just get an angry response. This is an utter nightmare. Thankfully, husband and I both have a huge sense of humour that we have sworn not to lose even when things get as bad as they can be. But that's difficult when you've had 2 hours sleep in the last 24 hours. We do have some help coming - 3 nights a week we've been awarded a sitter so that's 3 precious nights of uninterrupted sleep starting Monday. I had been wondering how a nursing home would cope with a problem like this. I'm sure it must be common for falls to occur. They simply don't have enough staff to cope. You're quite right - it's an obsession, all in the head. My mother used to have OCD quite seriously before the dementia kicked in and that is all forgotten, but the obsessiveness is now expressing itself in other ways obviously. Anyway, I wish you all the very best with your mum and talking to you in the early hours has lightened my load a little, so thank you again.
Rachel_200612345 wrote:
Sun Jun 28, 2020 3:37 am
Oh Penny thank you so much for replying. It's so good to know I'm not alone! We've since had the urine test result and mum does actually have a UTI which is a first for her. So she's on antibiotics which I'm sure must have kicked in by now, but it's actually 3.25am here and I've given up on trying to get some sleep and I'm just sitting downstairs waiting for the pager to go off every 20 minutes. At least my husband is getting some sleep so he can do the day shift! She says she has back ache. I'm not surprised, since she's been in and out of bed like a jack in the box every night, and up and down to the toilet every 30 mins in the daytime. I cannot understand why she's not exhausted. Well, she must be, but obviously the dementia is stopping her sleeping. I've given her painkillers hoping that would have a sedative effect but no joy. And yes, just like you, if I try and reason with her (I don't know why I haven't given up on that one) I just get an angry response. This is an utter nightmare. Thankfully, husband and I both have a huge sense of humour that we have sworn not to lose even when things get as bad as they can be. But that's difficult when you've had 2 hours sleep in the last 24 hours. We do have some help coming - 3 nights a week we've been awarded a sitter so that's 3 precious nights of uninterrupted sleep starting Monday. I had been wondering how a nursing home would cope with a problem like this. I'm sure it must be common for falls to occur. They simply don't have enough staff to cope. You're quite right - it's an obsession, all in the head. My mother used to have OCD quite seriously before the dementia kicked in and that is all forgotten, but the obsessiveness is now expressing itself in other ways obviously. Anyway, I wish you all the very best with your mum and talking to you in the early hours has lightened my load a little, so thank you again.
Oh good Rachel. I thought after I posted maybe my post didn’t help you much so I am pleased it helped a bit!

Before my Mum went into care I looked after her for 10 years and every weekend she came to our house to stay. She could still manage the stairs then. She would be in and out of bed all night going to the loo. Once she fell outside her bedroom door and smashed her head against a plug socket on the wall. She somehow managed to smash it to pieces but luckily for her didn’t cut her head open just ended up with a massive egg sized bruise!

The staff at Mum’s home are great and just keep taking her to the loo in the night. I told the Manager how kind they are and she said she would expect nothing less from them as that’s what they are paid to do and they prefer working night shifts.

Have you considered a care home for your Mum? Even for a respite break for yourself and your OH.
Sounds like a great care home you've found for your mum. That must be such a comfort. I've been looking after mum for about the same time as you have yours. Dad died in 2008 and the dementia kicked in about 2012. Mum was living on her own over in West Wales, just over an hour away, and I ended up spending half the week with her and half at home. Alongside long periods of her staying with us whenever she needed - hip replacements, falls ... So in the end it seemed easier to have her here with us. In many ways it has been, until recently. Yes I'm thinking about a residential home for mum, and some respite care as soon as that is practical in the current situation. She's kind of gone beyond the care we can give her now, and we are at that stage in our lives when if there are things we want to do, then we need to get on and do them before we're too old! Thanks for listening. It does make a difference!
Was mum living in her own property, or rented property, prior to moving in with you?