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.
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.
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.
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!
Do you have Power of Attorney or Guardianship?
It is perfectly in order for mum to make a significant financial contribution towards both the running of the home and the care that you provide.
Difficult subject. Mum does make a contribution towards general expenses, food etc, especially since heating costs and water usage have increased significantly. But because she has savings she has to pay £100 per week for her agency care to the County Council. I couldn’t expect her to pay any more as she only has her pension and it would mean dipping into her savings. When mum’s social worker spoke to me about direct payments she told me that this could be used to pay a family member, but not a family member who lives under the same roof as mum. This seems a little unfair as there are no other family members who help out in any way. I have two brothers but they live miles away.
You are entitled to her savings to pay you, as you are saving her approximately £1,000 a week in care home fees!!
The £100 a week for Social Services should come out of her savings, that is how it is calculated.
Every penny that you are entitled to that you don’t take, will be divided three ways, between you and your brothers, when she dies IF there is anything left. They don’t help care, have no right to a share of her savings now.
You are seriously being unfair to yourselves not to take a significant contribution for being on call 24/7.
An old person in residential care who does not have savings has all their pension taken away except for about £25 personal spending, or “pocket money”.
I had to sell Mum’s house to pay her care home fees which are approx £900 a week now. That was her only asset as she had hardly any savings.
IF there is anything left when Mum dies (and the rate her house sale money is going is alarming!) the money is to be split 3 ways between her children. I have always done the bulk of everything and am POA, one brother pops in to see her probably once a week (apart from lockdown obviously) and the other brother washed his hands of her when she was diagnosed with alzheimers over 3 years ago and has had no contact, not even a card, since that day.
Ah I see. I know how you feel. I have two brothers and although they are quite good in that they allow us a couple of weeks’ holiday a year, they’re so far away that they can’t do anything practical. They do ring mum if I remind them but they seem to feel now that she’s ‘mine’ to deal with. When I consulted a financial adviser about mum’s few savings after selling the house and what to do with them, the topic came up about any money left on her death. I do have POA. The financial adviser gave me an old fashioned look and said something about old people wanting to be ‘fair’ to all their children - in other words, that the money should be split three ways equally. I hadn’t suggested anything else. To be fair to my two brothers, I’m sure they’re assuming that I’m using mum’s savings as and when necessary (I’m doing my best not to) and probably if I said to them I think I should have something for looking after her, they would probably go ‘yeah whatever’ but I’m only guessing. I understand completely how you feel too. Sorry not to have replied before, but have been at sixes and sevens with mum with a water infection and not very well at all.