Mother in denial and no idea what to do

[ScottishScouser]

I'll outline the bare facts:

1. 80 year old mum lives in Liverpool I live 345 miles away. I left home in 1993 and never lived back in Liverpool and have always been at least 2 hours away. I know its sacrilegious to some people but I can't stand Liverpool and have no intention of ever living there again - nor would DH
2. Dad died in 2007
3. I'm an only child
4. Only other family is my 80 year old uncle
5. I visit her once every 6-8 weeks or so and stay with her for a week.

Mum has been doing ok but has mobility issues but in the last year has gone downhill a lot. She had a crisis last October when she had sepsis but has recovered. Yesterday my uncle found her covered in shite, screaming in pain and half naked - she was admitted to hospital and is apparently now chatting away with the nurses as she's been rehydrated. she'd had an upset stomach so we thing the dehydration had caused delirium. I am not going to see her until I talk to a doctor so I have all the facts. I drove last night from home to hers.

Apparently she is likely to be confirmed as still having capacity. This is despite her lying to me on the phone for the week telling me everything was ok when clearly it wasn't. Every time I put a care package in place for her, she cancels it which she can as she so far has had capacity.

If I can't enact my PoA then she's going to come home and in six months we will be back where we are today with the next crisis. I've spoken to her cleaner which mum insists is only needed once a fortnight and she's going to come in weekly - I am paying the other weeks.

I just don't know what to do. In six months time I know I'll be back here with the same story.

All I can suggest is to try and get her GP to talk to her and tell her she needs an assessment from social services and she needs to do what they say or hospital consultant. Her GP can listen to your concerns about your Mum but unless your Mum agrees they can’t tell you anything. People of that generation often take the doctor’s word as gospel.

The other thing I suggest is counselling for you to help you deal with it. You can’t change her behaviour only your reaction to it. It’s shit but she is an adult with capacity to make ridiculously decisions but knowing that doesn’t make it any easier.

I agree with the previous poster. Very sadly, if your mother is in denial and/or lying - and is deemed to have capacity - there is little you can realistically do except await the next crisis. There could be many more hospital admissions and realistically-unsafe discharges home until help is accepted or forced.

However, the same would be true whether you lived 345 miles away or 3.45 minutes around the corner. If she needs help but refuses it then there is little that you can do. You could write to her GP with your concerns and ask if they can get her in for a check - e.g. for cognitive decline, or a UTI (which can cause horrendous delirium, as I'm sure you know). But if she refuses then they probably can't do much either.

Please don't beat yourself up. You're not a bad daughter. You sound very caring. But you have a right to your life. It is not your fault if your mother is making poor and unwise choices. But I know how hard it is and how wretched it must make you feel. But none of that is on you.

If you haven't already come across it, I really recommend The Cockroach Cafe threads on MN - a place for all who are trying to juggle their own lives with elderly (and often challenging) relatives: 🪳 Cockroach Café Spring 2024 🪳 🪳 | Mumsnet - it's a safe space with plenty of good humour, wise advice and people who listen and understand.

You can't set yourself on fire to keep another person warm. Make sure that you look after yourself. You can offer all the things that you can arrange from where you are, but if your mum cancels or refuses to engage then it's perfectly OK just to say "That's your choice mum" and leave it at that. Until the next crisis.

Every good wish to you. x

Capacity isn't fixed. If she's deemed to have capacity then she gets to make her own choices. And that's what they are. Her own choices. No need to be guilty about the choices of another adult.

That must have been an upsetting experience for your uncle to find her like that. Hopefully, he'll be inclined to persuade her that things can't go on as they have been. Would she be more likely to listen to him - as a peer - rather than you, as her daughter?

You sound like you are doing a great job. Where you are at now was always going to happen at some stage. It's just so hard on both of you when you enter these major phases of decline and unpredictability
Your DM's situation could plateau for a bit or take another deep dive.
While you are on the 'ground' maybe you could ensure there is a key safe, you have phone numbers for neighbours, you could consider declutterring to prevent falls.

Soon enough you /she will be needing (or more) SW intervention.
You may need to do her banking with her consent. Personally, I would try to find out while she has some capacity the state of her affairs so you know what help you can afford to bring on board. Have you got Attendance Allowance?

she has capacity, and you can't enact you LPA without her permission, so it is what it is, and all you can do is live with it, sorry.

I hope you've had some more information from the hospital.

It does sound as if a pendant alarm would be useful and/or setting up Alexa for her so that she could call for help if she's fallen, plus a keysafe as a pp said. That won't help if she's really delirious or confused though.

But there's the thing. If she chooses to go home, that's OK. If she falls and dies, professionals have decided that she accepts that risk. You haven't done anything wrong.

Thanks everyone. She has a fall alarm and a key safe already. She takes the fall alarm off when she gets a shower because she thinks the water will break it!!!!!! (do we have a head banging emoji)

I'm back home now as we forgot to pack our medications we packed in so much of a hurry when we got the news. Mine are mainly painkillers so I could have coped (or raided mums spares) but DH is diabetic and needs his.

Whilst I was there I discovered:

1. She hadn't paid her water bill for months - but to be fair she never did even when younger. "Why should I pay for something that comes out of the sky for free". She only ever used to pay on the red reminder in the days before monthly billing, meters and direct debits.

1. She owed the council tax money for several month so much they took her to court and bailiffs were involved. When I asked her about it she said it's not as though I don't have the money but I hate paying the fuckers as they don't do anything and waste a lot of what they do get on pointless stuff. Again, this is very mum and not a sign of dementia - she was like that at 50. the only issue was she had been ill when the court date was due, forgot about it - she had intended to pay when asked by the court as that was the last chance but she felt she's made her point.

1. She stopped going to her clinic for her heart condition. To be fair, her heart condition is non-reversible, she's already on the drugs for it, and any invasive treatment for it might prolong her life but would not improve it. My mother would never want to live with a reduced quality of life if there was a choice so opting out is actually the rational choice. If she didn't have capacity I'd make the same choice for her.

At the moment, she's in being treated for Pneumonia and assessed for mobility. Apparently they have no concerns what so ever with her capacity. I told them she was very good at lying through her teeth and convincing people she's ok.

She will go home
she'll have a 6 week care package in place from the hospital
Then she'll tell them she doesn't need one anymore
Then she'll cut the cleaner back to once a fortnight again
Probably September, we'll be back in the same position once things have had a chance to build up on her

😡

Most of my cleients that were age over 70 and not that independent were like your mother and their children felt just like you did

More often than not, a talk from me helped to a degree as at times they would agree then when I left they changed their minds but no all of them

Take it step by step, ie biggest concern first - get a third party to talk to them re dangers/risks and how to decrease those in order to keep her safer and where she wants and put your mind at rest

After the above, it can work or it can't as people are set in their ways and want to be independent and not dependnent

Is she friendly with any neighbours that you could get a contact number for (discreetly)? I know this wouldn't solve your mum's determination to cancel care etc but knowing someone could alert you to no washing out/curtains staying open or closed etc quickly might put your mind at ease?

OP, I do like the sound of your DM when she was younger.
I don't think she is actually lying to you about her health. She probably 100% believes she is in control and 'not at that stage yet'.

We eventually had to pack an emergency bag in our house for meds, knickers and phone chargers, toothbrushes etc. for similar occasions...
There's little more you can do other than ask to be a second signatory on her bank account so you can help with bills / direct debits going forward.
Does you DM have wifi? There are little £20 USB cameras you can set up in her hallway that would let you know if she is immobile. She might not be pleased though.

I already have ring cameras and Alexa’s in place I can drop in on her!

At least that’s one thing. And still didn’t see the latest crisis coming.

OP, hats off. You’ve implemented everything!
You can research trains and plane departures and the Caledonian sleeper and commit them to memory but things will happen at their own pace when you least expect them.
The little snippets you’ve told us about your DM suggest she is fiercely independent rather than awkward. If you don’t mind me saying, she sounds the type who will turn her face to the wall rather than put herself through a miserable care home stay. Respect to her, too.

If you feel the need to do things then I suggest start asking her practical questions like which is the ornament that she feels most attached to. Which possessions would she want to carry on through the family.

My DM had pretty awful dementia from her mid 70s and we never got to discuss my new bible which is ‘The Swedish Art of Death Cleaning’ by Margaretta Magnusson. I think my DM might have embraced that book. Talking about what might be coming next might be OK for your DM?
pS I hope I haven’t overstepped x

She is independent and yes, she would just shut down rather than care home. To be honest that is one of the reasons why if she has capacity I want her to keep it as long as possible. The minute she ends up in a care home control is taken away from her. I know she’s stockpiled enough morphine in her living room draw to take down a herd of wooly mammoths. Once she gets to her rock bottom she will use them. If she ends up with carers, blister packs and/or a carehome, this option gets removed from her. I know that sounds callous being so matter of fact but we have discussed it in length over the years.

I just wish she would accept some help to keep her safe and comfortable for as long as possible. And I feel guilty every time a crisis happens.

I just wish she would accept some help to keep her safe and comfortable for as long as possible. And I feel guilty every time a crisis happens.

I hear you. In your shoes I'd write your DM a letter, pretty much the longer version of what you wrote above and tell her that it is your biggest and only wish to keep her in her own home. And to do that, she must work with you when it comes to getting the right care and the right help. Firing them in a fortnight won't help her and just be brutally honest back.

Wishing you both well.

As painful as it is, if she has capacity then you have to allow her to live the rest of her life how she chooses. I have had plenty of patients who don’t do what the “best “ option would be that would actually allow them to stay safe and independent in their home for as long as possible…many people make choices that mean they will end up in hospital or in care sooner than they would if they accepted the offered services ,advice or equipment.I have very clearly stated to my mum all my fears , the risks involved and that I am not able to help in x,y,z situation due to distance and my own health. She does have some measures that help and luckily has very good ,supportive neighbours but she does not wish to move nearer me and wishes to stay in her ( unsuitable) home despite her health professional children’s ( ie. Me & sibling)advice!

How does your mum get her shopping? Would she agree to a ‘driver’ ( private carer ) to take her to the supermarket / see her friends/ doctors or whatever a couple of times a week ( who could then bit by bit keep on eye on things for you)