Mum and Incontinence

[Upset1]

Name changed

My mum lives alone and has dementia. She will not go into a care home.

I do everything even though I live 30 miles away. Buy food, laundry, sort bills, take her to medical appointments. Various friends call in almost every day and I go down 2 0r 3 times a week. She went into a care home after a hospital stay following a fall but said she wanted to come home and the social worker felt she could do that.

Today, there was faeces in the living room and in the bathroom at the side of the loo.

She noticed it in the living room and became upset thinking someone had come into the house. I cleaned it up and told her it was dog dirt which someone had walked into the house. She is very upset and says she will not go to bed tonight in case someone breaks in to do it again.

I know she is hinting to stay with me but I have a small house, we don't get on and it just can't happen. I asked her to think about a home for the hundredth time and she said she would but I know she won't.

What does this pooing mean? Is it another step down? Is it a one off? Will it go away or will it get worse.

Should I tell the social worker? My life would be so much easier if she went into a home but I don't want her dragged off against her will.

I’m sorry, it’s such a horrible disease.

I’d contact adult social services and see if she could get some carers to go on a few times a day, to assist with personal hygiene, medication, food and drink, they may also help her into bed.

If she is deemed to have capacity and does not wish to go into a nursing home, no one can make her at this stage.

As for the poo, had she had an accident of some kind and gotten it on her clothing or not made it in time or actually gone to the toilet on the floor do you think… Either way she needs more assistance at home if she wants to stay there

It’s so sad ☹️. I would doubt it will just go away again - any sign of any physical illness that might have caused it??
It is truly heartbreaking but it is unlikely that she is suddenly going to happily agree to go into a care home. She sounds like she doesn’t have the capacity to make that decision. I fear social services may have to be involved and you are going to have to insist on some help at the very least. This may involve you becoming unavailable to do the care yourself. It sounds like it’s not sustainable long term. Dementia is an awful thing.

I mean had she just stepped in it from the bathroom?

My aunt had dementia and it never got that bad regarding toileting, thank goodness. It can go that way though, it affects people in different ways.

I’m really sorry to say this but unfortunately this only gets worse.
My MIL developed Alzheimer’s, we tried keeping her at home but eventually like your mum she forgot the process of toileting and she’d take the faeces out of the loo and put it on the windowsill. Eventually she started to wrap it up and put it all over the house or throw it out of the window.
It was around this time that she forgot how to use the phone and she started to leave the house dressed inappropriately for the weather multiple times a day walking miles to buy a newspaper.
If you spoke to her you’d never think there was anything wrong, her mobility and speech were perfect.
She went into a residential home for two years until her mobility started to decline. She then spent a further 5 years in nursing care. She had Alzheimer’s for 13 years in total.
All I can say is you need to be one step ahead with planning really as often it’s a crisis that pushes the decision to place into a home.
The fact that she’s now having difficulty with toileting really points to her needing someone with her 24/7. She likely is sound all sorts when your not around.
We found tissues rolled up with all sorts in it when clearing her house, clothing in the oven, packets of cooked meat in the bathroom cabinet, money stashed everywhere. I don’t think we realised how bad she was until she went into the home.
It’s so hard but at least you know she’ll be safe, warm, dressed appropriately etc

Thank you all for taking notice and replying. I was feeling terribly alone with it because I just don't feel that I can tell anyone who knows her. She would be so ashamed if she knew.

I;m almost sure this is the first time, although when I was changing the bed, the sheet was off and I haven't been able to find it.

She has a carer come in in the evening to give her medication. I will take advice and ask the social services for more, although I don't think they will clear up this type of mess.

I suppose I'm wishing that someone will swoop in and take charge but that's not going to happen. Today was just another step down and it has left me almost at the end of my rope but THANK YOU all for reading and offering advice and your own experiences. It has helped.

Definitely talk to social services and additional care may help but sadly this is only going in one direction.

Does your/her area provider a Dementia Navigator service or similar? Are you registered with her GP as her carer?

You might find it helpful to track down a dementia carers' organisation or group that you can join (many are online as well as face to face which might suit you better) - you meet other people who've been the same road as you and they're a mine of information.
Phone Dementia Connect - they should be able to point you in some useful directions.

she needs someone to come help with personal care, at least three times a day.
ask social services to do a care needs assessment.
does she have inco pads. ask for continence service to visit, through her GP.it will get worse. basically people go backwards; so if you have brought up children, she may be approaching a pre-school age.
eventually they have to have everything done for them, including feeding and becoming bed-bound.
sorry but this is the reality.
look on alzheimers society website. much useful information, esp the forums.
a good careworker is skilled at helping people to stay clean, while respecting their dignity. there are ways of approaching it.
can you pay for a worker, til assessment is done.
bluebird is a good agency. you need the right person. and same person, consistently. some agencies send different people every time.

My dad has dementia and TBH tell her making stuff up does do her any favours.

I pay £250 every month for the one visit a day. It is a care agency provided by the local authority. My mum owns her house but has no savings or money apart from her pension, so I do have to subsidise almost everything which I've been doing before she became ill.

I think I may have to ask for a financial assessment and get more visits a day, although I'll pay if that doesn't come off.

I don't think she will wear pads. Today, it seemed as if she has forgotten to go to the loo and just went in the corner. It does make sense that she is reverting back but she was so upset and kept saying someone had come in and done it.

I told her someone had walked in dog dirt because I couldn't face telling her she had done it and because I didn't want her to convince herself that a stranger had sneaked in and done it. As it is, she now says she won't go to bed in case this stranger comes back!

I will try the GP and Dementia Connect. I did look on the Alzheimer Society website to see if anyone else had posted about this but I couldn't find anyone who had mentioned finding faces in the corner. Some was by the side of the loo but she may have just missed the bowl. It is the mess in the living room that is so shocking.

I am shocked and upset and, in my heart, I know this is probably the first of many more times. I drove home telling myself it might just be a one off but I know now that probably isn't the case.

Remember you must live with

Posted too soon

It will be awful but she needs care! Either you or someone needs to look after her. If she is messing herself or can't remember how to use or where the toilet is then she needs help sooner than later. Imagine how distressing it is not to know how to use or where the toilet is.

Feel for you OP. It may just be a one off for now but it may become a regular thing. You can’t live like this. You need additional support and a plan for when things get worse. My DH went in a home and it was best for everyone. He didn’t seem to mind. She may say she doesn’t want to go but it it’s probably the best thing you can do. Things can change overnight unfortunately so in my experience you need to have a plan in place.

I’m so sorry. It is awful.

*Not DH, my Dad.

I'm sorry you're going through this. My mum always used to say she didn't want to go in a home. Eventually it got to the point where she wasn't safe any more at home, my dad couldn't cope and the decision was made to move her to a nursing home. She enjoyed it there and was the happiest she'd been in a very long time there.

It may well be the case with your DM.

I sympathise. Been there with my mum.
On a slightly different note, have you sorted out financial & welfare power of attorney? If mum is reaching stage where she is forgetting basics like where the toilet is, she may have trouble convincing a solicitor she is still of sound enough mind to agree to it. Makes life going forward so much harder if you don't have this sorted out.

For us, it was mum cutting the flex on table lamps with a pair of scissors, because she forgot what the switch did, that made us realise care needed to be 24/7. Sadly mum would not accept it, from us or carers, to whom she very aggressive. Eventually she had to be sectioned for her own safety, and then went into a secure home. The whole process was awful, for us and her, but we were told it's often the way it goes for people with very long slow decline into advanced Alzheimers.

Try and look after yourself as much as you can. It can feel like a very long haul.

So sorry you are experiencing this ..your poor mum must be so confused.

I would advise you to get a social worker involved through your local adult social services.

Your mum is almost certainly entitled to some kind of care package.
There may be a dementia day care centre in her area that she can avail of perhaps one day a week.

In my experience this is only the start of 'poo' problem it will get worse .
My friends mother was smearing her faeces around all sorts of places.

I'm sorry but you really need to seek out what ever help and services are available.

I am in Uk but not England so I don't know what particular services you will get but I suggest you seek advice from an agency like Age Uk.

Good luck going forward.

Yes tell social services. Also explain the high level of care you provide and that it's unsustainable for you.

SS will do an assessment of need to determine if your mum meets criteria for residential care or if her needs can be met at home with a care package. They'll do a capacity assessment to see if your mum can make the decision herself or whether someone needs to make it on her behalf - do you have LPA for health and welfare? If so, you become decision maker when your mum is incapacitated, if not it's the local authority (Social Worker).

If your mum has capacity, she can choose where she lives, even if you and social services think she needs a care home. No one can force her. All you can do is explain that you can't do what you are currently.

Thank you everyone for your best wishes, your own experiences and suggestions for practical help.

I'm glad I posted because I think I was all set to try and convince myself that this would be a one off, it wouldn't happen again and I could ignore it.

Thank you all again for taking the time to write your messages.

A social worker cannot do a formal capacity assessment. That needs to be done by a suitably qualified doctor.
If the time has passed for her to have capacity to consent to power of attorney (or the correct current term) then there are other options. The dementia support groups mentioned up thread can advise.
I'll check with DH when he's up that I'm giving correct advice- he's a consultant elderly care physician

Ignore me I'm talking rubbish! Anyone can do a capacity assessment as long as it is properly structured. Capacity is split into financial or health. Both are done slightly differently. If your mum no longer has capacity then she can go through court of protection as you can no longer try for power of attorney. It's a minefield so please get support from social services as soon as you can.

@iamnotanalcoholic70

Ignore me I'm talking rubbish! Anyone can do a capacity assessment as long as it is properly structured. Capacity is split into financial or health. Both are done slightly differently. If your mum no longer has capacity then she can go through court of protection as you can no longer try for power of attorney. It's a minefield so please get support from social services as soon as you can.

I think you mean Lasting power of attorney is split in to health (and welfare) and finance. Capacity itself is time and decision specific, so some can lose capacity to decide where care needs are met but regain it a few days later or lose capacity about how to manage their finances but not about who manages them.

You shouldn’t be paying for any care supplied by the Council. She should be paying, or, if she can’t afford it, they will pay. You need to get that financial assessment!

If she is to stay at home, you should also get Attendance Allowance for her. It’s not means tested, but do seek help from Age UK to get the jargon right and to remind you of all the ways in which she has already adapted how she does things.

She will be horrified at the thought that she has defecated inappropriately, and scared for the future. Her brain has come up with the intruder hypothesis as a less scary story to live with. You will get more of this, all sorts of weird stories so she doesn’t have to admit to herself her brain is crumbling. It’s called confabulating. It’s completely unconscious. Don’t try rational argument, it won’t work.

My MIL is in a care home and incontinent and absolutely refused to wear pads but she will wear the pull up type, unfortunately she has to buy these herself as only the pads are funded by the local council. We buy them from age concern as they are a lot cheaper than tena.

I do have power of attorney. I used a firm called Nellie Supports which have social workers all over the country. I went to a local solicitor and he recommended them saying he would be happier to draw it up if they assessed her first. They did and said she understood what she was doing, so he drew it up, sent it off and it was granted. That was about a year ago.

She has got worse. She can only recall things for 10 minutes. A few months ago, she had a fall which meant a hospital stay-it turned out to be bad bruising that she gained when climbing up to a cupboard. They then sent her to a care home while an assessment was made. The social worker had a best interests meeting and felt that she was capable of making her own mind up and if she wanted to go home, she could. So she did.

When I say I'm paying the £250 a month for the daily care visit, I do have control of her pension so it comes out of that but in reality, I'm subsidising that pension by at least that amount every month as it just isn't enough to cover bills, food, care and one off payments to get the garden done, the boiler fixed and replacing the fridge. I'm not moaning about that. I have always had to subsidise her, even when she was in her health, that's just the way it is.

I want her to go into a home. She won't go and says she will attack anyone who tries to make her. It has all being bumping along with my two or three times a week visits but if I fell under a bus, she could not stay in that house because I do the food shopping, pay the bills, do the laundry, take her to the hairdresser and medical appointments. She is not capable of going to the shop and wouldn't know how to pay a gas bill.

Yesterday's incident was so upsetting both because it happened and because she was frightened, saying it was an intruder. I lied by saying it was walked in dog dirt because she was saying she would sit up all night in case they came back.

I cannot cope if this is going to be a regular thing. I just can't. She won't wear incontinence pads or pants and anyway, I don't think it happened because she was incontinent as such.

It is interesting to learn the term, 'confabulating' and I think this is what she was doing.

After reading replies, I realise that this was probably not an 'one off' and I will have to seek help. I want her to go into a home but I want her to make the decision because as miserable as I am now, I think my conscience will make me miserable for the rest of my life if I insist she goes in when I know it would be against her wishes.

She has had a miserable life and it just seems like one more betrayal. If she decided to go in of her own accord, I would be so happy.

Once again, thank you all for helping me work this through in my mind and for giving me practical help.

Maybe you could go and visit a few homes? Take a friend or someone with you that can view the place without the emotion that you will have. Then you can slowly start to drip feed the idea to your mum and highlight the positives (the company, the lovely home cooked meals etc). It is hard. Even if she doesn’t go in the short term you won’t be rushing into the decision of where she should go if a crisis happens.