Recent Diagnosis - Unwilling to Accept

[englishalien]

Hello,

I think my family and I need help...
My aunt has been diagnosed with mixed dementia with a score of 17/26 - and has been unwell for possibly up to 4 years prior to her diagnosis 2 weeks ago. She's mid 70s

She has, for years, refused access to her home. She is a widow with no children, and currently my father, also in his 70s - is her next of kin.

Since diagnosis she's refused further help from everyone. We have had Adult Social Care involved already from a welfare/safeguarding concern and she refused access to her property, so ASC closed their case and wouldn't persist. My father has asked her to sign LPA and she has hotly refused, repeatedly.
So we have no LPA, no support and her refusing help.

Today, she collapsed in the street and an ambulance was called. She was taken home, but when the ambulance got to her house; they managed to see what her house is like and refused to leave her there from a safeguarding perspective. She is now under observation in hospital.

We are completely at a loss as to what happens next.

If she's not allowed to return home - which she wouldn't be allowed to do under safeguarding concerns - who helps my dad sort things out to get her help? And what happens if she refuses to accept support?

Do we go down the deputyship route ASAP or attempt LPA - which I think will be refused, consistently.

She is in England.

We are a bit bewildered with what to do and where to go, next. Any advice or help would be greatly welcomed. I live a distance away but my father is close by.

 

[Sarasa]

Hi @englishalien and a warm welcome to Dementia Talking Point.
It sounds as though she probably no longer has the capacity to agree to LPA so Deputyship is probably the way to go. It's more of a faff but is doable. Maybe now that social services will be involved again you can discuss with them if your father or someone else in the family wants to be her deputy (you can have joint deputies) or if you would prefer social services to take on the role. If they do you won't have a say in what happens next or to her assets. If it is decided she no longer has capacity then she will probably end up in a care home with Deprivation of Liberty Safeguards order in place. It may be agreed she can go home with carers in place at least to see how it goes.
While she is in hospital is anyone in the family able to go to the house and make a start on sorting things out so that the place will be liveable in if she does return home?
This is a worrying time for you and your family, but you will find lots of support here.

 

[Veritas]

What a sad situation - at least she is safer now. The ambulance crew will have made it clear why she could not be left at home, and there will have to be formal assessments (including a home visit) before any decisions are made.

If your father is NOK he should be kept informed by the hospital about these assessments and plans to discharge her. She clearly isn’t going home any time soon, as arrangements will have to be made to clean up the house, and she will need some sort of care package. Your father needs to be clear about how much support he is willing to offer - he is under no obligation, legally, to provide any at all. So the sooner he and your family can think about what you can do the better - social services will push as much of what needs to be done your way as they can, so don’t let them take advantage.

It sounds like it’s much too late for an LPA, in which case your father will need to apply for deputyship - I suggest he talks to the social worker about this ASAP.

 

[englishalien]

Thank you both, I too think that Deputyship is the answer. He isn't able to deal with that so I think my sister and I will apply as joint deputies.

It's such a sad, sad situation for all concerned. I just want to do the best for my aunt and make her final weeks/months/years as pleasant for her as we can.

Question - should they tidy the house now or get an assessment by social care so that the assessor sees how bad the house is? We have photos and videos of the state and it's no wonder the ambulance staff would not leave her there. It's certainly a safeguarding issue.

Is the first step getting a social worker assigned?

We're all a bit numb, I'll be honest. The last few weeks have been a rollercoaster.

Thank you for your helpful responses

 

[Grannie G]

Hello @englishalien

I certainly wouldn`t sort your aunt`s house until it has been inspected by Social Services.

The paramedics will have put the state she was living in, in their report and social services will assess her before she leaves hospital to decide where she is fit to go.

If things are as bad as they sound your aunt is likely to be assigned to a social worker.

While she is in hospital bide your time. You will know when the time is right what the future hold for your aunt.

 

[MartinWL]

Quite a few assumptions are being made here. Firstly do we know that she has lost capacity to decide where to live? Quite possibly that is the case but nothing in the thread says that she has been assessed as unable to decide that.
Secondly who has the right to go in this lady's house and clean and tidy it? I know it is the right thing to do, but in the absence of powers of attorney, or deputyship, and knowing that she consistently refuses entry to others, I would call it breaking and entering, or burglary if things are taken and disposed of.

I can hear already noises about best interests etc but we cannot just ride roughshod over someone's wishes and trespass in their private accommodation without the proper legal safeguards and process. If I decided that in my opinion @Grannie G was bonkers, would that give me the right to enter her house against her will and rummage through her drawers? Of course not.

There is a gap in the law here and this is an example. Whilst there needs to be a way to force people to accept care for their own safety, irrespective of capacity as defined in the 2005 Act, there isn't.

My inclination would be to try and get fast-tracked authority from the court of protection before tackling the house.

 

[englishalien]

@MartinWL you make excellent points and this is why I'm here - to understand what we need to consider.

We have not touched anything in the house, apart from to clear up and maintain the living conditions for her cat. She's managed to look after him so far so there is an ability to care, but it is deteriorating, based on the plates she fed him from and the soiled nature of the kitchen.

We understand that the hospital will help with the assessment of capacity now and will put us in touch with the social care team. At no time are we planning to run roughshod over her as we absolutely have to respect her boundaries and wishes.

@MartinWL when you say fast tracked authority, do you mean the urgent deputyship application we can make for a single decision? That is on my list to do today following sorting deputyship forms.

 

[Sarasa]

Hi @englishalien here is the link regarding fast tracking a decision https://www.gov.uk/emergency-court-of-protection
I'm glad you've been able to get into your aunt's house and make sure her cat is OK.
I wouldn't do any thing more at the moment until you have a social worker assigned and can start to decide what is best for your aunt.

 

[englishalien]

Thank you, that's the one I thought it was.
Papers underway.

I just want to be able to help her in the best way possible and ensure as little disruption to her routine, her home and how she perceives everything. I'm sure she will be frightened and confused where she is at the moment.

 

[Jaded'n'faded]

Just a bit of a warning really:

While the house remains as it is, she can't go home, and that is a Good Thing. I'm guessing that due to her attitude to everything else, she's not going to agree to a care home place, though this would seem the best plan. She may be moved to a Discharge to Assess bed as they will want her out of hospital ASAP if there is not much physically wrong with her.

I don't know what assets your aunt has but SS will want to know. If she has savings (and you're getting deputyship) SS may decide she lacks capacity (due to the state of the house, though plenty of people with full capacity live like that...) and suggest you find her a care home. If they think she does have capacity and the house has been sorted out they will send her home, probably with a few care visits per day. That won't work as she'll be alone and unsupervised a lot of the time so the wandering events will continue, another accident will happen and she'll have to move into care pretty soon.

In order to avoid the above scenario, i.e. your aunt going home then another catastrophe occurring, I'd suggest you leave the house as it is because they won't send her back there if it's in a state. I know you want to respect her wishes and independence but it's gone beyond that now and she no longer understands the care she needs. Please re-home her cat.

 

[MartinWL]

@Jaded'n'faded makes good points here. Carer visits to her home are not an option if she refuses to let them in the house. The best outcome will be that she doesn't have capacity to decide where to live, and that you get emergency Deputyship which will enable you to clean up the house and manage her finances . She should go to a care home fairly obviously.

 

[Violet Jane]

Do not clear up her house. If you do that it will give SS the impression that you are able to support your aunt, which you are not able to do because she won't give you access to her house and won't accept help from family or professional carers. SS need to see how she is living and need to carry out a capacity assessment. If your aunt is found to have capacity regarding her living arrangements and chooses to return home without help then I'm afraid that you will be back to square one and just waiting for the next crisis.

 

[englishalien]

Absolutely. We haven't touched anything in the house beyond moving two cat plates and bowls. We're feeding and sorting him out whilst we try and understand how long everything will take. I think we will need to re-home him but are holding off in case she returns home. If she does and there's no cat she will turn against dad even more than she has.

We know not to touch the house in terms of social care viewing the state of it.

In all honesty I would appreciate a discussion with the ward nurse (she couldn't give dad much time today, has asked him to go back Monday) so I can understand. Asking a 70+ year old man to comprehend this stuff when he's been stunned by what's happened is hard.

What I do know at the moment is that she is in an elderly/dementia ward. Thus, I don't believe they're looking to push her out just yet. But next week may be a different story.

 

[Palerider]

Absolutely. We haven't touched anything in the house beyond moving two cat plates and bowls. We're feeding and sorting him out whilst we try and understand how long everything will take. I think we will need to re-home him but are holding off in case she returns home. If she does and there's no cat she will turn against dad even more than she has.

We know not to touch the house in terms of social care viewing the state of it.

In all honesty I would appreciate a discussion with the ward nurse (she couldn't give dad much time today, has asked him to go back Monday) so I can understand. Asking a 70+ year old man to comprehend this stuff when he's been stunned by what's happened is hard.

What I do know at the moment is that she is in an elderly/dementia ward. Thus, I don't believe they're looking to push her out just yet. But next week may be a different story.

I wouldn't worry about the state of the house that's not actually directly important, what is important is the state your aunt was in and the documented evidence by the healthcare teams -that is powerful in making the next set of decisions i.e. safeguarding /vulnerable adult. Although your aunts house may be in dissaray that could be by choice and not by any cogntive impairment so best not to go down that route unless you have evidence a priori

Don't rely on the hospital to find appropriate care and in the first instance refuse what they offer because after the pandemic they have set up certain pathways and I am sure from your first post till now you would want more say in what happens next.

Its down to you the family to decide if your aunt can go home with your support or if there is a need for a care home.

You need to be prepared for what the hospital tell you, their assessment is not completely comprehensive and only on the basis of the expertise they can provide at the time which usually lacks any pyschological/psychiatry support in terms of best interests and suitable placement, so you will probably have to think on your feet about what happens next, so be prepared and start searching for care homes you think are appropriate and be ready to recommend these in the first instance as an alternative if you find that you agree with that decision

 

[englishalien]

This forum is so helpful. It feels like you're all helping me finely balance the scales with your answers and advice. I appreciate this

There's a lot of red flags from the state of the home that suggest she cannot look after herself. Things that are relatively recent (by this I mean 6-12 months) and things like rotting food (eggs from October left on the side). The shower doesn't look to have been used in a very long time. She hasn't washed any bedding for what looks like years. Her clothes in the last few months have been soiled and not clean.

We believe this began when her husband died (almost four years ago), but it is hard to know until we can gain proper access to the property (as in, be able to move the piles of paperwork etc).

I am doing Deputyship and emergency forms this weekend. It looks like a bit of a minefield. If anyone has any helpful websites to look at whilst I'm doing both, I'd be very grateful for links. Joint and severally means that my sister and I can make decisions together and individually, is that correct?

If the court deems her as lacking mental capacity, does that mean I can gain access to sort out her subscriptions, council tax, utilities? That's a big concern of mine at the moment - I think she's got food subscriptions set up from before her husband died that she's still receiving for two.

I can't believe I'm writing all of this in a newly diagnosed thread. Two weeks ago seems like two years right now.

 

[Palerider]

This forum is so helpful. It feels like you're all helping me finely balance the scales with your answers and advice. I appreciate this

There's a lot of red flags from the state of the home that suggest she cannot look after herself. Things that are relatively recent (by this I mean 6-12 months) and things like rotting food (eggs from October left on the side). The shower doesn't look to have been used in a very long time. She hasn't washed any bedding for what looks like years. Her clothes in the last few months have been soiled and not clean.

We believe this began when her husband died (almost four years ago), but it is hard to know until we can gain proper access to the property (as in, be able to move the piles of paperwork etc).

I am doing Deputyship and emergency forms this weekend. It looks like a bit of a minefield. If anyone has any helpful websites to look at whilst I'm doing both, I'd be very grateful for links. Joint and severally means that my sister and I can make decisions together and individually, is that correct?

If the court deems her as lacking mental capacity, does that mean I can gain access to sort out her subscriptions, council tax, utilities? That's a big concern of mine at the moment - I think she's got food subscriptions set up from before her husband died that she's still receiving for two.

I can't believe I'm writing all of this in a newly diagnosed thread. Two weeks ago seems like two years right now.

I think in the circumstances although you would need to seek some legal advice the Court of Protection would be willing to deem you Deputy of her estate and all that includes which would enable you to decide how her money is spent on her care -if that worries you as well as resolving her financial affairs that clearly she has not done. Unless there is some obvious objection the CoP should grant you this but it will cost a fee for court admin costs

 

[MartinWL]

If the court deems her as lacking mental capacity, does that mean I can gain access to sort out her subscriptions, council tax, utilities? That's a big concern of mine at the moment - I think she's got food subscriptions set up from before her husband died that she's still receiving for two.

If and when you get deputyship then subject to any special conditions you will be able to make all financial decisions including cancellation of subscriptions etc. And you can sort out her house. I think you need specific authorisation to sell the house, which you will need to do to raise funds for her care I expect. Alternatively you could rent it out if that will enable care costs to be paid for her foreseeable lifetime. Apart from health decisions such as medication and treatment you should be able to manage everything including her poor pet cat!

 

[canary]

If you want to sell the house, or rent it out, you have to ask for specific permission to do it and every time the court has to make a decision it will cost in court fees. So, if you think you will have to do these things - or even may have to - then I would request the authority to do this in your initial application (COP1)

I did not rent mums home out, but I should imagine that it is particularly difficult under deputyship as you have to account for every penny and also be able to justify all your decisions to the Office of Public Guardians when you return your annual financial report.

 

[cobden 28]

Just a bit of a warning really:

While the house remains as it is, she can't go home, and that is a Good Thing. I'm guessing that due to her attitude to everything else, she's not going to agree to a care home place, though this would seem the best plan. She may be moved to a Discharge to Assess bed as they will want her out of hospital ASAP if there is not much physically wrong with her.

I don't know what assets your aunt has but SS will want to know. If she has savings (and you're getting deputyship) SS may decide she lacks capacity (due to the state of the house, though plenty of people with full capacity live like that...) and suggest you find her a care home. If they think she does have capacity and the house has been sorted out they will send her home, probably with a few care visits per day. That won't work as she'll be alone and unsupervised a lot of the time so the wandering events will continue, another accident will happen and she'll have to move into care pretty soon.

In order to avoid the above scenario, i.e. your aunt going home then another catastrophe occurring, I'd suggest you leave the house as it is because they won't send her back there if it's in a state. I know you want to respect her wishes and independence but it's gone beyond that now and she no longer understands the care she needs. Please re-home her cat.

Re the cat, are you able to take on the cat yourself, ie to take it into your home and adopt it? at least that way the cat will have someone familiar to it (you) in a new and strange environment (your home) which will be less unsettling all round.

 

[MartinWL]

I did not rent mums home out, but I should imagine that it is particularly difficult under deputyship as you have to account for every penny and also be able to justify all your decisions to the Office of Public Guardians when you return your annual financial report.

I own and rent out a property myself, so have experience here. Certainly you do need to keep good records of expenses and income, but all landlords have to do that anyway because they are needed when the time comes to do a self assessment tax return. HMRC would take a dim view of guesswork so you should have the receipts etc. for tax reasons.

However renting out a property isn't just sitting in an armchair counting money. There is work involved, which tends to come in fits and starts rather than a regular workload. If the boiler fails it is your urgent problem. If there are problems with the tenant it is your problem. When a tenant leaves there is often a lot to do to prepare the property for someone new even if it has been well cared for. If it needs decorating you have to drop other things to focus on getting that done swiftly because a property earns nothing whilst empty. You can get help with these jobs from an estate agent of course but they will charge for it and don't expect them to go to the best value tradespeople. So renting out a property for a PWD is possible but be aware that it involves that horrible four-letter word "work".