A huge mess

[madnessitellyou]

I am almost at the end of the rope with my dm.

She’s 81 and almost certainly has dementia. We’d just started applying for LOA but has declined so rapidly she’s not really got the capacity now. She can’t plan at all and is in complete denial about her current state. Df died 6 years ago and her mental health is in tatters; she almost gave up. I tried to get her to a doctor - not least because she’s also forgotten she has a pretty serious life-limiting illness that’s been completely neglected - but she absolutely refused to entertain that.

She sleeps all day and is up all night. Her car is smashed to bits because she keeps driving into things and forgetting. She’s in hospital at the moment and when she gets home (if?) we’re removing her keys. She’s won’t eat unless it’s brought to her and won’t drink either unless, again, it’s brought to her. Last weekend she was so weak she was, according to the ambulance crew, at very serious risk of arresting if they didn’t stabilise her before moving her. I’d called the emergency social work team as I had a number from the failed attempt to get care (see below) and it was the social worker that called 999.

After her last - very recent - hospital admission a care assessment deemed her as needing care but she sent them away so they discharged her.

I don’t want to be her carer. At all. I have a life of my own, a career I love and dc who need a roof over their heads. She refused to help at all when the dc were young and has throughout my life been critical and cruel towards me. I feel sick at the thought of admitting this. I should have been there when the carers first came but getting time off work is unbelievably hard (almost impossible. Please no judgment here - this is case).

She has the means to pay but we absolutely do not and without LoA I’ve no idea what I’m doing.

Help.

I think you're just going to have to be firm and insist that she has a care package in place before she is discharged from hospital.

If she dismisses the carers again then unfortunately there isn't anything you can do. But she'll soon end up in hospital again, in which case I guess it would be time to look at care homes.

@madnessitellyou I just wanted to say that it is okay to make it very clear to social services that you cannot provide any care. They deal with this all the time.
I know you have work and children but even if you didn’t, you can refuse. You are welcome to join the bad daughters in the Cockroach Cafe thread, many of us have had difficult life long relationships with our parents.

If LPA is no longer viable then I think you need to focus your efforts on finding out if you can get the deputyship to help manage her money/property - but you don’t even have to do that, if you don’t want to or don’t have the time.

if she cannot sign a lpa you need to apply to the court of protection to be her deputy which is far more expensive and has ongoing legal implications including annual filing so if she is lucid enough to sign a lpa do it today. You don’t however need an lpa to act as long as her doctors say she doesn’t have capacity, she can be discharged to a nursing home. The hospital discharge team should be going through these options including whether she qualifies for continuing care

You need to make it clear to the discharge team that she does not have mental capacity, will not accept care to live safely at home and you cannot support her. Has she had a mental health assessment while in hospital ? Is she cooperative?

You just say she has nobody to care for her and put in writing that they will be discharging her to an empty house therefore unsafe discharge. They will have to involve the court of protection and they will access all her finances and go from there. That may mean discharging her to a nursing home, but needs must.

She could sign a LoA but we cannot find anyone to witness it, because it’s quite clear she doesn’t have capacity.

@madnessitellyou can you get a ‘capacity’ assessment done? At the moment you are saying she doesn’t have capacity but the actual assessment may deem her to have capacity. If she is deemed to have capacity by a HCP then you would have no problem getting the LPA witnessed. Sympathy with you and hopefully you can get some kind good advice on here. Absolutely zero judgement so many of us in similar situations.

if there is no LPA you don’t actually have to do anything. If you are prepared to walk away from managing her finances / any inheritance, then you can tell SS that you cannot provide care, and that you are not going to pursue deputyship, then walk away and leave them to it. SS will make the decisions that need to be made.

you can continue to visit her, you just aren’t required to take on anything you do not want to.

Sounds like it’s time for her to go in a care home. Am sure it would be safer for her there.

Why would OP be walking away from any inheritance? If her DM no longer has capacity she will not be able to make a new will so any prior will stands, or intestacy rules will apply so she would inherit that way. Unless you mean all her DM’s assets would be used up by nursing home fees leaving no inheritance.

Could you ask for her to go to a place for assessment on discharge from Hospital?

I did this with an elderly relative last year. They had been in Hospital, had carers, the needs were increasing rather than easing. Became ill again. Admitted again and the Hospital were going to discharge them to their home with the same care package.

I spoke to the Discharge Team and said that I didn’t think it was suitable given that it had already broken down once, that their needs were complex and could they instead be placed somewhere for assessment. Thankfully it worked out and DRelative is now well cared for in a Care Home.

So my best advice is to make friends with the Discharge Clerk, I usually take chocolates or pens, and suggest your DM would be much better being discharged for assessment rather than home as she has dismissed the Carers once before.

I’d walk away . You haven’t enjoyed a good relationship and it sounds like she’s done nothing to prepare for her later years . Why should you now have the burden of it all for what could be a decade or more .

Very easy to say. Harder to ensure.

I’ve no idea what anyone means by walking away from managing an inheritance - there’s no will and I’m her only next of kin. Dm can afford care for quite some years if needs be. I’ve no intention of cutting her off - I just don’t want to care for her.

They have said something about a “best interests” meeting and she’s been referred to the memory clinic. Brain CT showed changes suggestive of dementia so I’m sure the diagnosis will materialise eventually.

I think it’s reasonable not to want to care for your elderly DM wirh Dementia. It’s not easy and I suspect anyone suggesting that you do it have no real experience of caring for a person with dementia.

OK. In discussions with the hospital you need to keep talking about "unsafe discharge". Talk about the practical difficulties - won't/ can't get food / hydration for her self, can't remember things.

In my case my relative was insistent they would do online shopping for groceries and this was part of the discharge plan I was opposing (having only found out about the proposed discharge by accident as my relative allegedly had capacity (they didn't). Once involved I told the OT that relative hadn't successfully done online shopping for about 3 months. OT then tested relatives ability and lo and behold they couldn't do it and it was removed from the plan.

Also ask staff directly if they are sure she has capacity to agree to whatever unsafe plan they have put in place.

Capacity testing has four components

1. ability to understand the information being given
2. ability to retain the information
3. ability to weigh the consequences of the information/ decision being made
4. ability to communicate the decision.

My DBRo and I have pushed back on specific aspects of this with staff (he is legally trained, and I'm a doctor, we both assess capacity professionally). All the training says to "assume capacity" and in my experience many staff take that at face value. It's certainly much easier to get a frail elderly person out of hospital if they have "agreed" to the unsafe discharge plan than involve their bolshy articulate relatives who hold PoA and will argue for a much more complex/ expensive (but safer) plan.

Often those with failing brains fall down very early - in my relatives case they couldn't / wouldn't understand the information being given - they kept saying that all the facts we were giving about how unsafe they were at home were lies or had never happened, or didn't pose a risk. When this happened I asked staff if they really believed my relative had the ability understand the information being given as they were discounting it as being untrue even though we all knew it was true?

It then became apparent that relative couldn't actually remember the first of three pieces of information provided. So again, I asked if staff member was satisfied they fulfilled the requirement to retain information.

Getting a dementia diagnosis has helped enormously in getting people to take my concerns seriously.

Oh and no-one can force you to care.

Say to staff that you are not prepared to go round and do x, y and z. So what is their solution to your Mother getting food/ the house cleaned etc.

Have they asked her how this is going to happen? Does her plan seem sensible (and capacious).

Good advice as above. Please don’t take her keys from her - that could be deemed to be coercive and could put her in an unsafe position.

If they do insist on a discharge to home ask the staff for the email address of the person leading the discharge planning and say you want this as you are going email to formally record that you are opposed to it as an unsafe discharge and that you don't believe your DMother has capacity to make the decision. That you are fearful the decisions being made put her at risk and you want this all to be recorded.

On one hand it's difficult to put NHS/ SW staff under so much pressure - they need to get patients out to clear beds - but on the other hand lots of these patients end up on a predicable carousel of admission - discharge because people don't make the discharge plan robust.

I have seen it all play out recently with a friends family. The elderly person spent the night on the floor after the discharge plan the family had vehemently opposed was put in place and ended up back in hospital with all the consequences of lying on a cold, hard floor all night. He is now in residential care. Discharge team hadn't initially wanted to put this in place as it would have had to be LA funded as he has minimal resources. So cheaper to be at home at risk than safe.

My relative has thrived in residential care. It doesn't need to be a bad experience. Yes, they miss being at home and going out and about freely. But they enjoy good food, company, on hand tech support, friends visiting as the home is easily accessible, loads of activities on tap. Much much less television gets watched. And they do even now manage to read the odd article in a magazine (mostly to keep up conversationally with the other residents over dinner, I think!)

@PinterandPirandello I think the op was talking about removing the car keys and I absolutely agree with them that they should do so.

It would be horrific if someone whose car is "smashed to bits" were to return to the road without an assessment saying she is safe to do so. If OP feels it is necessary she could organise a driving assessment and say she will return the keys once that is passed.

https://www.bbc.co.uk/news/articles/cwy71z3xp9po

Apologies, didn’t read properly and thought it was house keys.

OP, just wanted to say that I was in the same situation as you until three months ago. My mother got a dementia diagnosis in Nov 2024, after some years of increasingly odd behaviour. We had a difficult relationship throughout our lives - she did her best for me which I acknowledge and appreciate but she also had behavioural and emotional issues of her own which she did not deal with, which impacted me throughout and I’m now trying to deal with the fallout, through therapy.

I did not want to physically care for her either and neither did she want me to. In my case it would also have meant moving countries. I found a carer for her and they managed well in my mom’s house for as long as possible. She declined suddenly, had to be hospitalized and I moved her into a care home. The care home then took all the fear and responsibility away from me and I was able to continue to live and earn (needed to pay for care as it’s private in my mother’s home country) and I was at peace with it.

I came here to also say that it’s incredibly difficult to look after someone with dementia, as it’s a condition that suddenly worsens and becomes unmanageable. It’s also very hard to witness it happening to anyone, especially a parent. I wish you the best of luck and hope you can put her into a care home for both your sakes.

After a capacity assessment I'd also look into whether her life-limiting illness would qualify your DM for Continuing Health care.

@madnessitellyou I was in your position and out of obligation and duty, allowed myself to be steamrolled into a discharge. I wish beyond anything i had refused to take on the respondibility. Hospital discharge dept., social workers etc will promise the world to you and as soon as the patient is home they row back, leaving you to do everything.
I can hobestly say, without exaggeration, that it has ruined my life. Please dont be me.

Oh I definitely mean car keys! For her own and everyone else’s safety.

Lots of useful points on this thread, thank you.