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.

You would benefit from a social worker so that they can assess her capacity to choose to remain at home, explain the risks to her etc. And then if they deem her not to have capacity then you can make the decision with a clear conscience.

Just wishing you well - this sounds so tough. Sending solidarity, and seconding what PPs have said about getting a care needs assessment for her. I hope things get better for you both.

she needs more supervision and care.
how does she get her meals.
it is becoming less safe for her to be alone there for long periods.
if you could get the right kind of careworker for her, it could make a big difference.
would she go to a day centre. if you said it was a club.
anyway you need to contact social services asap.
good luck.

You've had some good advice on how to proceed here, but on a practical note with regards to continence, if this is the first time it's happened then I'd strongly advise sending a urine sample off to the Drs just in case, urine infections can cause real problems in the elderly and of course are uncomfortable, and if ability where toileting and hygiene are a concern, infection can happen unfortunately. Though it's not a magic cure, and it may not be an issue.
Can you read the care notes she has from the carers daily visits or speak to the carers directly? They may have cleaned her/the house up before and that can help in establishing if this is a one off or part of an ongoing thing, and of course it may have happened before and your mum has cleaned herself/floor etc up and not said anything about it or forgotten it happened.
I'm sorry you're facing this, get the GP and social services and the carers involved to get as much of the picture as possible and some help in deciding how to proceed.

Also agree with getting her checked for a UTI, I'd call 111 in the morning and ask for their advice. They were really good when we had called them after DMIL developed delirium.

I can understand you feeling guilty if your DM is saying that she doesn't want to go into a home but honestly, it does sound like the best thing for her.

My DA had a hard life as a single Mum, long before benefits abs when she eventually went into a care hike she loved the fact that someone else did the cooking abs cleaning and kept telling us how lucky she was.

Try to look on it as providing the best care you can for your Mum, rather than a negative.

If you are subsidising her, have you applied for Attendance Allowance? Someone suggested Age Concern can help. You'll need things like her NI number and bank details.

Have you been through her bills so that she gets the best deal as well? Things like single person discount on her council tax and reducing her energy bills as much as you can should all help.

Thinking of you though, sounds like you've got some tough times ahead

*and

Sorry I haven’t read the whole thread but in my area a socialworker definitely did a capacity assessment on my relative. Apply for attendance allowance and also a financial assessment as if your DM had no savings the council should foot the bill for her care at home. She may well need to move into a care home for her own safety. I dreaded that with my own relative but actually it’s been a positive move, risks are reduced, they have more company and specialist staff who are kind and ensure they are safe. It means we can visit as often as we want without having to deal with all those onerous tasks you are doing currently OP. I’ve been there and it’s hard work.

She needs more care visits. And probably a care home.

It doesn't sound as if she has capacity to make the decision herself - you are describing someone who has no idea what her needs are.

My FIL did not want to go into a care home. He didn't want to go to the weekly day centre either (at the care home) but was given no option. One week MIL arranged to leave him there for respite and after a week, she decided not to have him back. Despite all his protests beforehand he was absolutely fine with the arrangement - he had forgotten.

She will not make the decision herself - I'm afraid you have to give up on that idea. The dementia won't let her, she can't see why on earth she needs to go given she can only remember the previous 5 minutes so why does she need any help? You will need to help her out by making the decisions she isn't able to make.

The paranoia is also something we experienced. Kind of a mini psychosis. You could ask for a review of meds by the GP.

Is she getting Attendance Allowance? Not means tested so worth applying for, but get help from Age UK or similar with the jargon. Would reduce your need to subsidise her.

I will ask about the UTI. It would be great if that had caused it and it wasn't a step downwards-medication would stop it.

I can see that she won't make the decision herself and pp are right-I suppose I will have to make the decision but I really don't want to have to do that. I'm living in Cloud Cuckoo land, hoping that she will but yes, as PP said, I have to let go of that idea.

Failing that, I suppose I want someone to fly in and tell me she has to go into a home and so it's taken out of my hands or , and I know this sounds bad, that she doesn't actually know where she is so she wouldn't know she was in a home. I know that both of these hopes don't cover me in glory.

Yes, I can look at the carer's notes and see if this pooing has been mentioned in there and I will.

If it is a one off, or caused by illness, I'm prepared to struggle on for a bit but if it is regular then I am am going to have to make a decision because I won't be able to cope with it. It will be the last straw for me.

Again, thank you all for support, flowers and suggestions. It has been enormously helpful,

I will ask about the UTI. It would be great if that had caused it and it wasn't a step downwards-medication would stop it. That's good, I really would call 111 today, if you can. If she does have a UTI it needs sorting quickly.

Don't worry about being responsible for the decision to place her in a care home, this is what her SW is for. Call them, tell them what's going on abs that you can no longer do her shopping, cleaning, paying bills and visits abs she needs her care needs assessing urgently. I'd recommend being there when they do this as she's likely to say that she doesn't need any help.

The SW will decide if she needs more carers or if she needs 24 hour care but I'd make sure they know things like she seems to have forgotten where the toilet is or how to use it.

OP, even if there is a UTI in play, this is only going one way, and you need to get a plan in place. My dad kept my mum at home for far longer than was really safe for either of them, because he loves her so absolutely. She got out one night, in November, and was mercifully found by a passing police car, wearing a nightie, a jumper and one sock. He was awoken by a policeman at the foot of his bed (she had of course left the door open.)

By the time we got her into a home, he was on his knees, and I was not far behind, trying to work, do kids, keep my own house running, and support him by taking her off his hands so he could get to his own medical appointments, and run his life.

Dementia is a fearful disease, it will devour everything and everyone it touches, and there is no finding equilibrium, as every solution or support you find only lasts until the next crisis.

Mum is now safe and very well cared for in a home that does wonders. She will never accept this, she will never stop asking to come "really really home" . If her brilliant mind still worked, she would understand that she was killing dad, but it doesn't, and it never will. Even though she had exactly the same with her own parents.

I am so sorry, there are no easy wins, now.

It's horrible isn't it MrsBert? My DMIL still asks to come home at every visit. Sadly she has no idea where that is abs when she was home she didn't recognise it and thought she was on holiday even though she'd lived there for over 50 years.

Just to echo some of the comments here already. Start preparing for the next stage. Talk to social services. Getting her into a care home/more care in may need various hoops to jump through. You may limited on what homes would take her if she's funded by the LA and not all homes are the same. Dementia makes change very hard. Encourage her to be in a safe environment by her own choices if at all possible.

We don't dare take mum back to their home, for fear of her response if she knows it is their home. God it is awful. My poor poor dad.

Op you have had lots of good advice here. On the financial side apart from attendance allowance your mum might be entitled to pension credit which is a top up for people on a low pension. Also possibly council tax reduction if she becomes entitled to pension credit then she will get full council tax reduction. Citizen advice can help with all this. They have very good website as well

Yes, I have had excellent advice and I intend to take it.

People have been very generous with detailing their own experiences and giving sensible advice about what to do next.

It has all been running around in my head, my blood pressure reached a crisis point (I've been put on medication and it is coming under control) and although I knew something has to be done, this thread with its specific advice to me has started a change of thought line.

Yes, it is a dreadful disease. Before this began, I was in the ignorant luxury of thinking that it was just someone going a bit dotty. I now know, like so many of you, that it is a terrible, terrible thing.

I would never, ever in a million years have thought that it would lead my mum, who was super strict about cleanliness, to messing in the front room. I think if she was aware that she had done that, she would rather be dead so it makes sense, as a PP pointed out, that she would say it was an intruder because, as frightening as that story is, it's better than accepting the truth.

Thank you all again. I am very very grateful for the advice and experiences. When I wrote my first post, I was very upset but I can I have to DO something and that there are things to do.

I'm accepting that sitting and waiting for it all to either get better or get so bad that someone does it for me is not helpful to me or mum.

Thank you all individually and collectively.

I'm sorry OP it's a terrible disease. She does not understand what's happening and is not intentionally making anything up. As you know it's incredibly distressing for her.

In the beginning when this happened with my mum my sister would tell her she had done it and it just causes upset. I don't think she understood what was really happening when she was pooing and we would find it in drawers, behind the bed etc. We would be cleaning and still smelling it and trying to ensure we had every speck etc.

In the early days with incontinence pants she would take them off. She was early 60's and very physically able. We did have her go missing a couple of times like a pp and that was her sneaking out as she was upset while someone was in the house and I lost her once on the school run. Heart stopping moments. The first time she was found by police and had gotten quite far in the cold night without coat etc.

We've managed because there are three of us and my dad and my youngest sister basically gave up her life to look after mum at home as my dad can't do any of that side but he does what he can. I only live a few minutes drive away as does my other sister. We still find it hard even though we have all this.

You do need help, it's a lot to manage. Please make sure that social services know everything. Our involvement with them in the early years was essentially the police advising them of my mother going missing and then calling us a long while later and asking if we were managing or not and we said yes. No follow up or checking in over the months or years that followed. If you say you aren't or are finding it difficult and want or need help they will need to look at services and let them know everything that's going on.

We do now have an agency providing double handed care visits four times a day as she was hospitalised and came out bed bound so the hospital team set everything up and brought social services in. Mum pays for the care but it is arranged by the authority as we hope that if any issues we can go to them.

We have PoA and know she has sufficient funds right now to pay for her care which is nearly 2.5k per month but her capital will fall quickly so she will need reassessing at some point. Social services should assess your mum and advise if her income needs maximising such as pension credit if the right age. They should also take into account her expenses so you need to list all her rent utilities etc. Local authorities work differently but some have a full council tax exemption for someone living alone who is severely mentally impaired and others have a reduction. Disability Related Expenditure should also be allowed for eg is there so much more washing because of her incontinence, do clothes and other things, need replacing more often etc. You might change flooring because of frequent accidents, if staying at home install a chair lift, need a cleaner or to buy meals on wheels things like that.
Wishing you all the best.

Sorry I got interrupted while writing my previous post and didn't see you had posted again. It's a lot. Applying for Personal independence payment (replaced DLA for some) has made a massive difference to her income and paying for all the extras. She was under state pension age though at the time.

If she owns her own house, perhaps you could consider a lifetime mortgage. It would reduce our eliminate your inheritance, but you'd likely have to sell the house to pay for her care anyway.
More importantly, do you have a POA in place? If not, sort that out now while she still has some capacity.

I've been in your shoes with MIL ❤️

More importantly, do you have a POA in place? If not, sort that out now while she still has some capacity. The OP has said she has

I wish you all the best….it’s something you wouldn’t wish on your worst enemy. But putting plans in place and reducing risks is the only way…you have to do that in their best interest even in the face of non cooperation. In her right mind your mother wouldn’t want you to have to deal with all this.

@GuyFawkesAppreciationClub

More importantly, do you have a POA in place? If not, sort that out now while she still has some capacity. The OP has said she has

Good. (I missed that)

Good. (I missed that). It is good isn't it. We've had to use it with 2 DPs so far abs both times it has been invaluable.

Don't worry about missing that bit either, I seem to manage to miss bits all of the time!