How to pay for carers at home??

[ChristianDior]

My query is about payment options for carers that may be required at home (DM 85 vascular dementia & v well at present but likely to deteriorate) if she is unable/no one else in the family can pay for them?

Does the local authority pay for any care provided for in the person’s home that is then repaid on the sale of the person’s home - like a deferred payment for care home fees? Even if they will be self funding/deferring any care home payment & won’t be eligible for council funded care? Does this exist?

My DF owns her own home & has a generous pension but is living off an overdraft since her cognitive decline & her adult son’s (autism, MH problems) complete enmeshment in her finances & their mutual codependency (since DF died & DM became more dependent on DB - especially so when she gave up driving & relied on him/he gave up sole use of his own car & took over hers (all at her expense).

IMO cognitively she is not making sound decisions about what & how much she’s spending (mainly on day trips out, petrol, takeaways, food & meals out) but would pass a financial capacity test (having scored 79/82 on her cognitive test at diagnosis & only her CT showing small vessel disease swinging it to a formal diagnosis). An OD is out of character for her but she denies this. She’s resistant to offers to help her budget, online banking or using her solicitor (her POA for finance) or curbing her spending. My brother is in complete denial about her ageing, has lived most his adult life with her & has tried to block moves to getting her diagnosed. He refuses to set any limits on my mother’s spending, daily long trips out, cash withdrawals eg £1000 per month & is completely unable to accept that she will need carers to help her in the future. I’ve pointed out to him that abusing a vulnerable person’s financial position even by failing to limit them when their actions may be of harm to them, is tantamount to financial abuse & this is really serious but he is completely incapable of changing his habits or behaviours. He is almost demand avoidant, avoids all responsibility, does no domestic or gardening help or helping with the mental load & basically only does tasks for her that he likes:can cope with hence the day trips out. He will take her to doctors, hair appointments etc but not supermarkets & so she gets her good at petrol stations mostly & takeaways. She puts him on a pedestal for this & has enabled him most of his life. That she allows him access to her money is the problem as she does not seem to realise it’s not sustainable. Not surprisingly she’s v defensive about this & thinks I’m trying to curb her pleasure & interfering in her private affairs.

I’ve pointed out how excessive her monthly petrol bill is for eg £850 & that my brother is using her account for his own personal (& excessive petrol use. He compulsively drives & is addicted to driving hence v high car maintenance costs all footed by my mother who seems to defend it).

So when the time comes that she needs carers coming in at home how is this paid for if she can’t afford it? This may be needed before any care needs assessment (which I’ve read can take months). She has agreed to having an OT assessment soon for handrails, pull up handles, pendant alarms & getting a key safe installed. So I need to keep her on side to ensure she agrees to all of this without causing too much conflict & argument that happens every time her finances are raised. I’m her POA for Health & feeling v anxious & concerned about this particular issue.

Otherwise she says she’ll sell her home which is too much for her now, to free up money to pay for any care at home, but she’s been saying this for over 10yrs & IMO just not capable of it. She can’t bear pple coming round, my brother hoards & she has executive dysfunction & organisation difficulties even before dementia. And everything is a huge ordeal (always has been before dementia) which is why they both cope with everyday stress with escapism & excessive spending & endless days out.

Or she says she’ll go into care - but if she’s not eligible for care & only in need of support at home surely she won’t be accepted? Especially if she can’t pay for it until on her death??

And to get a care needs assessment - if one is needed down the line - as my brother is living in the home - has mental disability & 59 - a deferred payment arrangement would have to be set up as I imagine he will have to remain in the property? To be sold on her death as he could not afford the bills there. Does this mean you don’t have the same choice of care homes that you would if you were self funding?

My concern is whilst we’ve got a POA set up for finance- she won’t resort to this until she has completely lost financial capacity & yet she may well need carers coming in to help her at home, before that happens.

I’ve got nobody else to really get this off my chest to - I live fairly close by but have several chronic health conditions/disability that make it impossible for me to offer my mother much practical support. And that I’ve expressed to her several times in the 10yr long bid to get her to downsize & get her affairs in order, that I won’t be able to provide the care that ordinarily families would be able to give. But it’s fallen on deaf ears.

Any suggestions/advice gratefully appreciated.

Thanks good idea. He & my DM have been resistant to numerous attempts to broach this & his threats of self harm unfortunately terrify my DM into submission every time it is raised. This has been the pattern for years & any attempt to try to support him into independent living have fallen at the first hurdle because my DM is not able to see it through. Despite suggestions she seek & gain support from the MH team &/or Social Services to help him make this transition (& learn that his thoughts of self harm are in response to the threat but can be managed & worked through) she has not been capable of addressing it. So it is a doubly stressful prospect ahead hence my anxiety at how my DM’s finances are being mismanaged when she is going to need them as her condition progresses. I will ensure that the OT & social services are involved with my DB & that he attends all meetings re my mums care. He is currently under the MH team who I can also contact.

If DM has less than about £17k in savings, her care will be paid for or provided by the local authority, following a care assessment. The care provider will also do an assessment to ensure they can meet her needs. She is likely to get a maximum of 4 visits a day but possibly less. Her home is not taken into account. If she goes into a care home ALL her assets will be taken into account. She can defer selling her home but interest is charged on the growing debt and a setting up fee is charged. Its horrible. My MIL has just been diagnosed and its heartbreaking. With dementia a carehome is often needed to stop sufferers wandering.

@AmusedGoose this is informative thankyou - didn’t know about interest & fees although it is a loan so makes sense. I’m sorry to hear your MIL has been diagnosed too. Have you gone through or are you going through the assessment process atm?

Hi OP, I fund private carers for DH who has Lewy Bodies dementia. it is expensive (to state the obvious), but the two I use have developed a very close bond with DH and this stability has been very useful in retaining as much normality as possible. I I used the UKCIL website which was recommended to me by the LA. I found it useful and contracting direct with people reduces the costs.

@Cyclebabble this is a great suggestion thank you I would never have known about them were it not for this thread so will definitejy get in touch with them. And yes anything that can help with the cost burden is only too appreciated. It’s all such a new & daunting world to navigate. And we’re not even going through a fraction of the uncertainty our poor loved ones are having to go through.
That must be comforting to know your DH’s carers are invested in their relationship with him & that they help things run as smoothly as is possible. Continuity & familiarity must make a huge difference & I imagine quite rare to find when the majority I imagine )?) are employed by agencies. So it’s heartening to hear of a positive experience & that there are good ones out there. Thanks again & best to you & your DH.

So as I’d suspected my brother has been using my mum’s account without her consent or knowledge & been withdrawing approx £500 per month for his own use (as evidenced from her bank statements. Likely to have been going on for years. In addition to buying all his food & petrol on her card (which is excessive average £700 per month) & her paying for all their outings etc. I’m in the process of getting a 3rd Party Mandate with her bank & trying to get her to meet with her LPA for Finance which she’s resisting. Being her solicitor, she’s embarrassed & seeing them represents to her having lost her caoacity - even though she hasn’t (it’s likely fluctuating). She believes she can manage & make savings - when it’s not her that is spending excessively herself. But she isn’t able to see from her bank statement (which she doesn’t check only the final balance) the fraudulent transactions & 3rd Party Access will not permit me to set up online banking - where it’s much easier to see & I could print out statements for her this way.

She believes that my brother has stopped doing it now & is completely blind to addictions on his part (which she has paid debts for in the past). When with me she’s able to rationalise & see what’s going on but any time back with him & she flip flops back to what he has kind of brainwashed her into believing - that she’ll “lose autonomy” if she agrees to online banking or others being involved & is understandably trying to hold on to what independence & control she has left. The reality is she’s been my brother’s puppet for years & though believes she had any autonomy in reality hasnt - deferring to him for all decisions & him pulling her strings without her knowing not to mention becoming very dependent on him emotionally - as he is with her. Codependent enmeshment & love.

Anyone had experience of having a solicitor as LPA? Being removed & formal means decisions my mum would allow me to make with her are harder to do not to mention the cost. Me becoming her POA (she has asked if I can) is fraught by getting anyone to vouch for her caoacity - she’s become so isolated & hasn’t seen any friends for 2 yrs - most have since passed away. She does not want a neighbour to as she’s very private & wouldn’t want it being repeated locally (v gossipy) & anyone in a professional caoacity eg her GP or solictor have said they’d need her to do a caoacity assessment first which she is refusing point blank.

What a mess. All agencies have pointed to reporting a Safeguarding concern to Social Services which I feel I have no choice but to do. To give them sufficient information about her finances & relationship with my brother, both she & he will know it’s me who will have reported them & I fear the repercussions & loss of contact with them altogether. I’m going to try to get her to her LPA first & if no luck will go down that route.

I don’t know if I’m hoping for too much from her LPA - the box is ticked that she doesn’t have to have lost caoacity for them to help her. And I have stressed her vulnerability & surely he has a statutory duty to safeguard? I just hope he doesn’t say he can only carry out actions that she requests - she says she does want to get her finances back in order but doesn’t know or isnt able to process what it would entail to achieve that. In which case I hope he doesn’t say she needs to have a capacity test so he is ok to step in more. Which she will refuse. I’m also concerned he will need to check her being happy to proceed as her LpA cost wise which may well likely result in her saying she doesn’t want/need his help. Despite the certificate being registered etc & set up 5 yrs ago approx. I have a telephone appointment with him but only in several weeks due to his availability.

It’s making it so much harder them not being a family member who can tread that line more intimately with her.

Apologues for the rant. Any suggestions appreciated.

Regrettably yes I do have experience in getting an LPA removed. In my case it was our son who took this out without DH's knowledge. He has form for stealing money from both of us and was effectively looking to exploit DH's dementia. All depends on cognitive ability. We used a solicitor who in turn appointed a senior consultant to assess DH. He assessed DH was still capable of making a decision and therefore an application was made to remove the LPA. Note though that the original LPA applicants are notified and allowed to object- so you may have a battle. The entire process was long winded and took three months- but the declaration that the original LPA was invalid was somewhat quicker.

Our legal advice was that if the Consultant found DH was not capable of making a decision then we would need to go to court to look to gain Guardianship- which is much more expensive potentially and more complex.

The other key worry for DH is that we would be highlighting that our DS had lied and therefore there is a potential for the Police to become involved and Social Services. This did not happen to us, but is I think a risk. The last place we wanted to be whilst dealing with dementia was going through court for fraud.

@Cyclebabblethanks for replying & sorry you’ve gone through this as well & from a family member too. I hadn’t considered trying to remove DM’s LPA as an option. I trust them & may need their help for more complex financial decisions down the line. But getting her to him is the problem. For me to become an additional LPA, she doesn’t have anyone who can act as a certificate provider bar her GP or solicitor who both have said a capacity assessment will be required which she is refusing point blank. As an aside it’s amazing how easy an LPA is to set up though & I can see how open to abuse it is, as you unfortunately discovered. Yes police & court proceedings really are not ideal at what is an already difficult time. May I ask if you were able to protect your DH from any further financial exploitation?

Thanks. I agree that LPAs are very easy to set up and then very difficult to remove. All you can really do is to try and persuade her to speak to a Solicitor and Doctor, at the very least to remove the LPA taken out. The challenge is that a bank or building society will not look beyond the LPA, they will act on it and if this has involved a substantial withdrawal or transfer of funds then they will see this as a civil matter.. Of course, there is an obligation to demonstrate that using the LPA is in the interests of the donor, but this can be difficult to challenge and by the time you have done so, money may well be long gone.

We were quite successful in limiting the cash that was taken from DH. However, DS still visits and from time to time he has used DH's card (which he still has and uses) to buy things for his house and to buy things he likes. When challenged he simply says Dad says that was okay didn't you Dad? Dad cannot remember. Roughly this has involved card payments of c£5k. When he goes out now with DS we turn off the card (his bank allows temporary suspension), through the App online and we give him cash. None of this comes back of course, but it limits the exposure.

Visits have got less as DS realises the level of gain he can get is limited. No birthday present or card this year and nothing for Father's Day last year.

I fear he will also try and present a new will. However our solicitors are wise to this and well prepared.

All in all the situation is very distressing, but I would stress the importance of dealing with things now rather than later.

@Cyclebabbleits so difficult to try to police while facilitating autonomy & independence etc esp when they’re loved & trusted family members that the PWD can’t believe has exploited them.
It sounds like your DH is as protected as much as he possibly can be which is what I’d like for my DM. Will try & get her to her LPA who I don’t want to remove & see if failing that she’ll allow a capacity test to let me be one. Not likely atm but will keep trying! Thanks for your insights they’re much appreciated.