Elderly Mother - Showing signs of Dementia - What to do?

Pollycat

Tammer said:

Hi, I thought I'd update on things.  My mum has been discharged from hospital today after 5 and a half months.   She gets 4 or 5 care visits per 24 hours!    

A question - she has not used her virgin media services for 5.5 months as she was in hospital but has been paying £65 a month or so.  Do you think I would be successful in asking them to refund part of the charges as they can see from the data that nothing was used?

You can only ask and the worst that can happen is they refuse.

Tammer

Hi all. 
I hope to make this forum post a history of my dealing with my mum's dementia, the social care system and the impact on family finances so please forgive me if I ramble a little.
I tried Virgin Media but the call centre (Indian possibly) couldn't understand that there were a few issues and that the services hadn't been used as my mum is in hospital and the TV box isn't working as a result.  I will have to write in.
On Friday, my mum fell over for the 3rd time or so since coming out of hospital and the carer called an ambulance and she was admitted to hospital again and is still there.   They are investigating the reasons for the decline - apparently a 5 month stay previously with endless hours of doctor and psychiatrist time wasn't enough to reach a diagnosis.  They are now pursuing this in earnest.

I think the most likely scenario is that my mum will have to go into a care home with medical supervision.   This, in life, appears to be the most opposite thing to moneysaving that exists in the uk - worse even than divorce!

A thing I've found is that there is very little online that tells you what happens next and how you pay for care.  There are many articles that tell you you have to pay for care if you have, say, over £20k in assets and that a married partner won't be thrown out of the house to pay for care.  Nowhere does it tell you how you pay for care on day 1, week 1, month 1 when you've not been able to liquidate any assets. The closest I found was an FT.com article.  If anyone has any useful info on the practicalities of paying for full time care - e.g. can you effectively transfer ownership of their house to the council to pay for care?  And what happens to other properties at that point?
If anyone has any experience of this and would be able to share that would be appreciated. 

BrassicWoman

in my experience, the council let you run a deficit while benefits and assets get sorted. Focus on the right care home for now, working the the hospital social team, and worry about money later.

Silvertabby

This was some time ago, so costs will be higher now...  A friend needed to find a care home for her m.i.l before her property could be sold.  Council homes charged £500 per week, with all monies to be recovered once the house had been sold, regardless of how long it took.  The (far nicer!) private homes were £800 per week, of which the Council would pay £500 and the family the rest.  From day 1.  Then, once the house had been sold, the Council debt would be recoverable first, so the family would only have been repaid if there was enough money left. 

noclaf

To the OP, apologies if this will cover old ground, haven't read every single post but will set out my own experiences and hope it helps.

I am a carer for one parent with dementia and other parent is in full-time nursing care. Both have had mental illness in the past, one very severe for most of my life resulting in being detained and sectioned for treatment on numerous occasions. I also work full time so know all too well the struggle and the stress of balancing one's own needs and wellbeing with sorting out parents care needs.

Does your mother receive any of the the following and if not, worth checking if she might be eligible or can at least be assessed for elligibility:

1.Tax exemption/disregard - I checked on the gov website then called my LA and was sent forms to complete. My mum receives a full tax disregard and I receive 50% discount as a carer.

2. Attendance allowance ( lower or higher rate). I applied to LA for this too, my mum receives lower rate.

3. If she goes into care, your mother might be elligible for Funded Nursing Contribution (FNC) or possibly NHS Continuing care (CHC) but I am not too clued up on this area or how you request to be assessed etc. I don't think dementia itself necessarily qualifies for either but again worth checking as every individual has different and unique care needs and there will be a criteria used to assess.

4. Does your mother have a social worker or assigned case worker from your local authority? I think usually the GP has to instigate this to put your mother on the LA's radar but again not 100% on this.

I had to fight and struggle for many years to get carers for my mum and if it wasn't for the help of her GP who escalated her case I would still be struggling, possibly I wasn't looking/asking the right people but it isn't easy because the information provided online is confusing, contradictory and a minefield, there is also an element of postcode lottery in terms of how organised different local authorities (LA's) are with dealing with care needs. My mother has in-house carers (she pays) arranged via the LA but eventually will need a nursing home or possibly a residential home as dementia is progressive and unfortunately things only get worse. I live with my mother so still have some 'oversight' on things but this is not easy and as mentioned once the condition progresses there will be a point where she will need a nursing home.

5. Do you have poa or deputyship for your mother? I've got it for one parent and about to embark on it for the other. There are costs involved (that can be reimbursed from your parents estate/finances) but overall advice I've received is it's worth getting esp if you need to deal with LA and mother's finances and property. Without either can't do much.

6. I've spoken to Age UK on a few occasions for advice and found them very useful/helpful esp for legal contacts with experience dealing with dementia, applying for POA etc

You are doing a great job and understand how hard it is but with time will get easier once things can be put in place. Hope above helps and best of luck. If I missed anything obvious hopefully others can chime in.

Tammer

Hi,
Thanks for the reply.  I still need to complete the Attendance Allowance application.  I have PoA.  
My mum is still in hospital. It is not safe for her to go home.  The consultant says that she is not capable of making decisions about where she should go on leaving hospital.   My mum says she does not want to go into a care home but, realistically, there is no other option.  I will try to concisely summarise the position but it may sound quite matter of fact but it is really upsetting and stressful in reality.

The social worker has highlighted that the PoA does not give me the right to place my mum in a care home as this would be "deprivation of liberty" and against the human rights act.   For her to go into a care home, I would need to put in place "guardianship" through the courts.    I have contacted a solicitor who, in summary, says that this is a waste of time and money as she saw a previous case where this was the position until the mother set fire to her house at which point it seemed to go away.

Does anyone know what happens in this situation? It can't be too unusual.  I am minded to refuse to go for guardianship but that means my mum is stuck in hospital, which she is anyway as it is not safe for her to go home.
Thanks.
T

Skibunny40

I thought the point of getting PoA was that it avoided having to get guardianship when the individual lacks capacity, the PoA kicks in automatically once you have a medical professional confirming your mum doesn't have capacity. You have this? Guardianship is only granted when the individual lacks capacity, so if the social worker thinks you'd be successful in being granted guardianship, then the PoA  would also be valid - negating the need for guardianship. I've never heard of anyone having as many problems with this as you're having.

elsien

No idea where guardianship comes into anything, as that's a Mental Health Act provision and nothing to do with deprivation of liberty.
If mum goes to a care home, a deprivation of liberty authorisation would need to be applied by the care home through the local authority if she lacks capacity around her care and support needs, regardless of whether she was objecting or not. That's just a safeguard for anyone deprived of their liberty, and it's not a bad thing; it's a mechanism to show that the restrictions are proportionate and in mum's best interests. As an aside, if mum lacks capacity to agree to stay in hospital then a DOLS request should already have been made by the hospital, so that's one question to ask them.

Whether someone can be moved to a care home in their best interests depends on the level of their objections and whether lesser restrictive options such as a return home or a move to housing with care have been fully considered and ruled out in a best interests process with you as the decision maker if you have health/welfare power of attorney. So if you haven't already done so, request that the relevant professionals sit down with you for a formal best interests process and go through the pros and cons of the various options thoroughly. Including mum's care needs and why these can't be managed at home with support. 
If mum is strenuously objecting to going then the hospital should be taking this to the court of protection for an urgent decision. They won't want to do this but then you need to be asking how they plan to physically get her to a care home without force or lying to her. Which is where her level of objection comes into play. The social worker is being disingenuous on putting all the onus on you: the hospital is the managing authority in charge of her care at the moment so their legal team should be involved if there are concerns about her objections and her human rights.

If mum does go to a care home and is on a DoLS (and from everything you have said then she should be) she has the right to go to the court of protection to challenge the decision. This is not a quick process, and it is entirely possible that the final outcome is that mum is better off in residential care. But they would ask why the other alternatives haven't been considered which is why you need to properly talk them through now. 

elsien

Sorry, just realised I'm thinking England and Wales,  Scotland is different. Remind me again where you and mum are based? 

Tammer

Hi, yes I am based in Scotland.  I think you are right. I don't think I will progress the guardianship and instead will put the onus back to the hospital and social work team. 

Just one point to add - the Power of Attorney document would normally address the Deprivation of Liberty point (if recent) but this one was done in 2015 and doesn't cover that off.