Toileting issues and anxiety

[applro]

Hi everyone,
My first post. My mum has Alzheimers and I believe she is around 8 years in. She is now approaching the more severe stage. She has been having issues with toileting for the last few months in that she has started to struggle to remember where to go at times and also what to do. Most distressing though is the distress that doing a poo now causes her. She feels like she is dirty and it's awful and is quite distressed each time she does one. She seems to think she is the only person who does poos.
I don't live with my Mum, my Dad is her carer, but he is still getting used to helping her with things like the toilet and she is often reluctant to accept his help. She has only had a couple of accidents so far and i think this is more related to not knowing where to go or being too embarassed to ask for help.
Is her anxiety and disgust/horror at doing a poo something anyone else has experienced with a loved one? If so, can anyone offer advice on how this can be approached and also whether this is a common phase of the Alzheimers condition that is likely to pass after some time? Could it also be an indicator that full incontinence is now approaching.
Thanks for any help that can be offered.

 

[carol4444]

Really sorry to hear your mum is having such problems. I will keep an eye on this post to see how other people manage. I always thought that I would draw the line at such personal care and this week I noticed, to my horror, a huge poo lying in a roasting dish on mum's dressing table. I went out into the garage for a quiet five minutes to talk myself into disposing of it. What worries me is that my mum may have decided to dispose if it later but I'm pretty sure she wouldn't have surrendered the roasting tin so it would have been washed up and wiped up with a tea towel. The tea towel could then have been used by the carer to wipe up all the dishes. What to do? I think I'm going to have to start taking a back seat and let the carers start to take over as I feel way out of my depth.


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[LYN T]

My OH started to say 'it's horrible' whenever he had a poo. He even seemed to feel better when he started to go in his protection I don't know if Pete was disturbed because I stayed with him while he was going? Unfortunately if I didn't he would put the poo in the wash basin-you can probably understand why I had to stay

I found it better to just sort of agree with him (who wouldn't) and say something along the lines of 'I'm sorry you feel like that' and reassure by saying 'but there's no problem, better out than in' or, 'we all have to go, so don't worry'. Or, 'you will feel better once you go, but take your time'. The biggest problem arose when he would stand to wee but then poo when he was standing up! Sorry folks I know it's coming up to dinner time.

Love

Lyn T XX

 

[Emily M]

Before we suspected my mother had Alzheimer’s she got quite obsessed about having constipation and there being something wrong with her bowels. She was checked out and nothing was found to be wrong. That was possibly some of the very first signs of the Alzheimer’s. She started taking Senokot and was probably overdosing with the inevitable consequences. Then she started getting memory problems and a diagnosis was made.

The bowel problem has been awful. It was considered very likely that she has IBS which didn’t help. She did get used to wearing the special pants, but was very reluctant to let anyone help her and tried cleaning up herself preferring to put “things” in the sink rather than the toilet. Trying to wash the pads down the toilet was another problem. When really confused she didn’t know which room was the toilet. Unfortunately the incontinence is one of the awful consequences of this disease. I am sure the sufferer often feels embarrassment, confusion and anger at what is happening.

I am sorry to say things do get worse. With this in mind would your mother be prepared to wear incontinence pants? Some of them are quite pretty now and they are very much like pull up nappies. Are Social Services involved in your mother's care or is your father doing it all? It is worth getting advice from the experts and she should be entitled to a carer visiting to give your father a break.

I am so sorry to tell you this and don’t want to depress you too much but the incontinence problem was one of the main reasons my mother went into a care home. My step-father was finding it increasingly difficult to cope. At first he changed the flooring in her bedroom to laminate which helped, but when things happen in the middle of the night and mess is in the bed or walked around the house it is very difficult to control. In the end he was washing the bedding every day. When I was staying there, one night I had to clear up 3 times. She is now in an excellent care home with wonderful staff who can provide care 24 hours a day.

 

[susy]

I have heard before about people with dementia pooing then stashing the poo away. It seems that they have a poo then pick it up (maybe even poo into their hand?) then either wrap it up and put it in the wardrobe or hide it in a pocket or something else that seems outrageous to us. My guess is that early on we learn that making a toileting "mistake" brings shame so this comes in to play here. Maybe as we all have a fear of the wrong things (mobile phones, watch, make up, hair brush, tooth brush etc etc) going down the toilet that this comes into play also. It's a confusing time. Things shouldn't go down the loo..... Erm I've now got this in my hand, what shall I do with it???
Anyway, it isn't unheard of and this is my explanation, not researched and not scientific in any way, of why it happens. Hopefully it's a short lived phase.

 

[applro]

Thanks all for your responses. We have started to consider aids such as incontinence pants and I talked to a continence nurse yesterday who advised that we need a GP referral to use their service. Unfortunately my Dad is quite reluctant to move forward with things and so it's taking a long time to get things in place.
Lyn T, I was interested to hear that your OH became less distressed about pooing once he was going in the pants. Did this resolve the distress completely?
I think I'm coming to the opinion that the anxiety and distress is perhaps best managed by the approach of any carers present. The more support and reassurance offered with toileting, the less distress it will cause. While, particular conversations may not be retained in my Mum's memory, the emotions she associates with toileting may become more positive if she is receiving a good level of support.

 

[LYN T]

Lyn T, I was interested to hear that your OH became less distressed about pooing once he was going in the pants. Did this resolve the distress completely?

Pete had lost the urge/ or didn't recognise the urge to go and he didn't appear to know he had gone in the protection-so there was less distress with the actual toileting. However, then there was the distress with the cleaning. Sorry I'm not able to give you much encouragement that things will get better.

I hope you get things sorted for both of your parents sake

Love

Lyn T XX

 

[applro]

thanks Lyn. Did Pete get distressed with the cleaning?

 

[LYN T]

thanks Lyn. Did Pete get distressed with the cleaning?

I'm afraid to say that he did. Pete's Alzheimer's made him distressed/tormented with everything. When he went into a CH the Carers had some success (one in front holding his hands gently, and the other Carer cleaning him. Sometimes three Carers were needed I'm afraid.) I'm sure your idea of using Carers is worthwhile trying.

Love

Lyn T XX

 

[Pablo 2013]

Ideas on keeping hands clean?

My auntie is in a care home with very attentive staff who always take her to the loo, and she wears incontinence pants, but she has a longstanding habit of sticking her hand up her bum - could be at any time of day or night not just in the loo - and she gets very upset if you try to scrub her hands clean so this is an ongoing problem. Has anyone tried anything that works - gloves that are hard to take off, or pants that are hard to get a hand inside, for instance? My auntie is always fidgeting with her clothing so anything we try is going to be tested!
paul

 

[Long-Suffering]

My dad went through a phase of being obsessed with going to the toilet. I think it started out because he was already having trouble with getting dressed/undressed by himself, and so he would panic when he felt the need to go to the toilet because he couldn't work out how to undo his trousers. This led to a period of crying and panicking every time he needed the toilet, and we had to take him. He would let me take him for wees, but not poos. Poos were only for mum. I had to sit outside the toilet while he had a wee. Another thing which compounded the problem was that half the time he thought he wanted a wee, nothing would come out. Maybe a prostate problem the doctor said. This distressed him. He felt he HAD to pee, even if he couldn't, so we'd have to calm him down and tell him it was okay if nothing came out.

That was last year. Now he is dependent on mum to take him to the toilet all the time. He suffers from constipation and has to take prescribed laxatives every day. He doesn't seem to worry about going to the toilet so much now. I think he has got used to it. So far, he hasn't had any accidents in the sense of wetting himself, but he does sometimes pee in the wrong direction so that it goes down his leg. Then he'll start crying and shouting "f***ing hell!" over and over. During the night, he has a bucket to use when he wakes up. He manages to use it, but has recently started leaving it in odd places around the house and mum thinks he may have been emptying it in the kitchen sink.

I guess there will come a time soon when he will need to wear incontinence pants, but he is doing well so far. No bed-wetting yet either.

LS

 

[Emily M]

My auntie is in a care home with very attentive staff who always take her to the loo, and she wears incontinence pants, but she has a longstanding habit of sticking her hand up her bum - could be at any time of day or night not just in the loo - and she gets very upset if you try to scrub her hands clean so this is an ongoing problem. Has anyone tried anything that works - gloves that are hard to take off, or pants that are hard to get a hand inside, for instance? My auntie is always fidgeting with her clothing so anything we try is going to be tested!
paul

Hello Pablo

Had exactly the same experience as you. It's really awful! Mum used to wear skirts at home, but is now in a care home and I noticed last time she was wearing a pair of her trousers, not a loose fitting pair, but a pair with a front zip and waistband. I thought this was a good idea as access is not as easy! I will have to ask them how this is working out.