What happens in this situation?

[Tweedledonkey]

Hi is there anyone who has experience of this situation, and could you tell me what happens? I’m new to all this and could do with a step by step guide.

I’m in England and have two parents living together, who are married. I have POA for both but this is not currently activated. I’m an only child, there are no other family or friends around. I work (often away) and have a young family myself.

One Parent With Dementia (PWD). One Parent Carer (PC). They have shared bank account and own a small property in joint names. Not much in savings. PWD could not realistically live independently and PC is currently with them 24/7. PWD and PC are not particularly receptive to the idea of outside care and certainly are not receptive the idea of care homes at all. If the PC sadly passes away, what happens?

Financially, how do things work, I assume the PWD just continues using the shared bank account and I activate the LPOA, and the house is already in joint names so nothing happens there.

in terms of care of PWD, what happens? Do I contact social services? Or GP?

Anyone who has been through this, I’d love to hear how things panned out so I know what to do.

Thank you.

PoW for finance, for health and welfare, or both?

How advanced is the dementia?

Do they have wills?

Financially, how do things work, I assume the PWD just continues using the shared bank account and I activate the LPOA, and the house is already in joint names so nothing happens there.

Yes (assuming no complicated will saying otherwise) joint assest pass to the survivor. Is the PWD able to use the account safely? If not you'd need to notify the bank and take over immediately.

The finance PoA can be activated before it's needed, so I'd recommend getting that set up now. It can take a while.to get it registered on the bank's system.

In terms of care of PWD, what happens? Do I contact social services? Or GP?

I'd contact both, but what happens next depends on the PWD's capacity. If they have capacity they can refuse both residential care amd visiting carers. If not, then you'd either organise residential care yourself (if self funding) or in conjunction with social services.(if LA funded). I assume they would be self funded.as they own a house

Yes, LPOA for financial and health. I’m currently trying to work out what to do about wills as they don’t have one and don’t think they need one…

PWD has capacity but PC currently does everything - all admin and house stuff (cooking, cleaning etc) so the PWD could realistically not live alone or use the bank account etc themselves. PWD is not left alone at all at the moment but is still capable of expressing an opinion and having a conversation.

Right now you could explore if PWD is eligible for attendance allowance. It is to help pay for the additional care that someone needs if they can't manage for themselves. It isn't means tested and would give them a small extra income each week. They might be more amenable to outside care/ help ( even if just a cleaner) if they think that they are getting a benefit that is specifically to pay for this.

I'd also advise you to think clearly about what you are willing and able to do for them and what you can't manage, before it happens as it is easy to get sucked in to doing more and more and it can become unsustainable. If you have clear boundaries ahead of time it helps .

Thank you, yes, I think attendance allowance is a good idea. Currently, I have altered my working hours to spend one week day every week with the PWD, but realistically I don’t know how to fit in any more as I am either working or taking kids to various out of school activities.

… and if I cut down any more work hours, we couldn’t pay our own bills/ mortgage etc.

I'd strongly encourage them to do wills while still able. Intestacy can easily add 6 months to a year, and thousands of pounds, to the probate process.

I would suggest they change their ownership from joint tenants to tenants in common and write a will that leaves their half to you rather than each other.

Following with interest, as I'm largely in the same position. In my case, PWD sounds a little less far advanced, as they are still able to be alone for periods of time, but they no longer really cook or do any sort of admin, and won't go out alone. (Technically they're actually PWMCI, as the D is undiagnosed, but I'm pretty certain they're really PWD.) I work full time and don't live that near, so only see them every few weeks. Outwardly they are doing OK, but I think that PC effectively masks the true situation, and that PWD would be entirely incapable of living alone. Like you, I have both PoA but currently only registered not activated. My current concern is that PC is just beginning to show signs of becoming less capable - nothing significant yet, but memory noticeably worse in the last year.

Hi tobyj, yes, it sounds like you are in a similar situation. I think PC is struggling a lot more that they let on here too, and I was hoping there might be some advice here on Mumsnet on how this all pans out if they can’t cope (or if they actually weren’t around any more). I’m assuming I would initially have to take a big chunk of unpaid leave and move in with PWD until things were sorted? But HOW it gets sorted is the thing I’m wondering about - I don’t know the processes I’d have to follow…

I've been involved to an extent in arranging care for the other side of the family, so have at least a bit of experience. With my parents, if it continues to be a steady decline, I imagine that eventually a point will be reached where they'll accept that some bought-in care is necessary, at which point I'll probably get involved in helping them arrange this (they would be self-funding at least initially, so it's basically just a case of researching local care agencies). And that my involvement would gradually increase so that my 'every month or two' visit becomes 'every two or three weeks' - which would be challenging but doable.

The thing that keeps me awake at night is the possibility that PC will suddenly die or become incapacitated (unlikely but certainly not impossible). I honestly don't know what I'd do if that happened. My best guess is that I'd take a couple of weeks of unpaid leave to go and stay with PWD to get the initial stuff sorted, and then I guess bring PWD here to live with me until I could sort out some kind of care home nearby. It would be a total nightmare though. PWD would be completely discombobulated by that situation, and I'm not sure they'd be able to be alone in my house while I was at work, so I'd either have to sort emergency day care or a very swift move to a care home (which at this stage would be utterly resisted and probably traumatic). But I don't know what other option there would be. In theory, PWD could live with me long term (until their needs increased considerably), with a carer coming in as needed during my working day, but I don't know if my sanity could survive that. This is why it scares me so much!

Both parents would probably be entitled to attendance allowance due to their health conditions so worth applying for as they could use that to get a cleaner etc to make life easier. Wills are a good idea tbh as if one parent dies and leaves everything to the other and they then need care all of the money would be used apart from the small amount you can keep (differs depending on where you live). You can contact adult services in your local council and ask for an assessment now or if things decline and they can guide you on what services are available in your area or rather the area where your parents live.

in my area for example we have a team that would be able to take your dad out places for him to socialise and allow your mum a break. We have a fall alarm service, a team that helps claim benefits & sort finances, occupational therapy for aids/adaptations, meals on wheels etc. it’s not just carers that social services can help with

I believe that all assets would transfer to PWD. They would most likely need care- quite possibly residential depending on how the dementia has progressed by that time.
The residential care would be self funded until assets of PWD are run down to £25k or thereabouts. Then partially or fully funded by LA.

AA for sure, at higher rate too. Do you have a copy of the diagnosis? You can get a Council Tax discount for Severe Mental Impairment backdated to the date of diagnosis. It is usually 25-50% discount. Your PC is entitled to a Carer's Assessment to see what help they need in their care role.

You should make the GP aware you have PoA prior to it being needed. It can take time for the paperwork to get sorted out. TBH I would trigger the financial ones too if you can, it takes forever to get banks etc to register them, but it makes helping do much easier and gives everyone a layer of legal protection.

Care wise, funding will depend on level of savings. If you haven't already, you need to have the talk with your parents about how they would prefer to be looked after, so you can start forming a plan and also DNR, but that can be done with the GP once you are registered. It is worth talking to people about care providers and homes if they are self funding, so that you have a feel for who the good providers are.

You need to be prepared for all eventualities really, but there's always something that will pop up and bite you out of the blue.

@Tweedledonkey
Is the house joint tenants or tenants in common? This matter because if PC dies first and the house is owned as joint tenants then the PWD would inherit the whole house and it could have to be sold to pay care home fees.
It may be better to switch to tenants in common and a will made leaving the PC's share to children or grandchildren.
I suggest you discuss with PC and a solicitor.

Assuming the will says surviving d so poise inherits all, then the pet will inherit everything. You then activate the poa and as it's in their best interests request immediate residential respite from adult social services if they do not have the ability to live at home. Depending on situation you will either need to sell the property to pay for care or they may qualify for nhs continuing care depending on assessment (you can owe money until house sells).

If you think this scenario is likely, your parent without dementia may wish to change their will

Thank you all, some very useful messages here. PC is looking into a lot of the things mentioned and hopefully we can get things put into place to help them both. It’s been a long road to getting a diagnosis, and PWD has had noticeable problems for around 8 years, but has only recently had a formal diagnosis. Quite a few different people have already contacted my parents since then, so it looks like the wheels are now in motion. So much more reassuring than the last few years when we all knew something was going on but couldn’t officially do anything about it due to a lack of formal diagnosis with both parents somewhat in denial. Thankfully now, they are both a lot more on board with the fact that there is a real illness and that PC is in fact a carer, not just a helpful spouse!

In a similar situation we arranged for carers to start visiting three times a week, just for half an hour to start getting my parents used to the idea and for the carers to start getting to know my parents. My PWD was very resistant to this idea, but the carers have kept trying! They also had meals on wheels for lunches.
When my PC was admitted to hospital recently we could immediately up the carers visits to every day, and increase the meals on wheels to lunch and tea.
You can ask Social Services to do a needs assessment now, depending on the area this can take a few months to happen. That means your parents will be in the system and if anything changes you can ask for a reassessment of needs.

In our case, when the PC died, the PWD went into hospital as a “social admission” until a care package was set up. I know of other cases where PWD went into short-term care until a package was set up as a PP said.

There’d be no need for you to take unpaid leave, nor disrupt your children’s lives. And my advice is that you need to make sure that you make your boundaries clear when the time comes. You are not in a position to provide care. You can explain that your priority is your children. Other solutions will be found, truly.

Re. the bank account - the sort code and account number stayed the same and the direct debts to Octopus, TV Licensing etc continued as they had before.

The Tell Us Once service via the register office was brilliant. They advised HMRC, DWP, DVLA etc of PC’s death.

Don’t forget to do little stuff as well, like cancel/postpone the newspapers, milk delivery, the window cleaner. Stop any magazine subscriptions, coffee subscriptions, Sky Sports, Prime etc that belonged to PC but are not wanted by PWD. It may be worth asking PC about this stuff soon, so you have a list.

It’s a tough time but you can do it step by step.

Thanks everyone, very helpful advice.
As we stand now, PC is 24/7 carer and PWD is increasingly having aggressive delusions but then reverting to being able to hold a normal conversation at other times (which they do in conversations with the GP etc).
PC does not get a minute to themselves apart from my weekly visit, and PWD follows the PC around the house..
They have no savings so can’t use a private carer/housekeeper/companion. PC is struggling to entertain PWD as they are stuck in the house together and unable to afford days out. Even if they get Attendance Allowance, this would maybe fund one visit from a professional for a couple of hours per week.
Where do they go from here? PC is meeting the physical care needs so I imagine any assessment would deem them both not eligible for any social service help. In any case, they have no idea how/where to access that help, and PWD is very resistant to anyone but myself and PC coming into the house.
I fear all this will push PC to breaking point.

PC is meeting the physical care needs so I imagine any assessment would deem them both not eligible for any social service help.

Don't assume. There may well be eligibility for respite even if not for daily care visits. If residential care would be LA funded, it's in social services' interests to prevent carer breakdown.

I'm in this situation too OP. I think it's so sensible of you to ask in advance.

In my family, if the PC died first, the PWD wouldn't last very long. The dementia gets much much worse if the PC is not there and the decline would be very fast I think if the PC was gone. I think maybe three weeks at the most.

This is one of the many sad case I come across where the PWD and PC need intervention and help. In your case there are many problems to be faced. First is that they won’t be deemed in need enough of Social Services to call. They will come if the couple ask for help but not otherwise. Which leads to the next issue of them refusing care from outsiders. What usually happens is a crisis that leads to doctor or hospital visit.

if you have time I would contact one of the local charities who provide companionship for carers. They are very tactful with their approach and you may have to fib to get them through the door for the first visit. Help the Aged were a life saver when I was in your position.

I really don’t think they should be troubled with a Will or Change house deeds. I know lots of people who have lost a partner when there are limited assets all held in joint names. Probate was not needed and the Estate wound up quickly.

i don’t know if you can persuade them to add you to their Savings and Bank Accounts, but this helped enormously. I took them to the bank with me and it was a very easy process. Once the POA came into force I changed their address to mine.

I am sorry you are going through this. After 6 years of doing this I have became and amateur expert. I am happy to give you the benefit of my experience if you need it.

I was told by a colleague whose daughter was a Social Worker dealing with older people on no account bring your PWD into your home. If you do, Social Work will not have to help because YOU are. I told this to a friend whose father was in hospital but the father insisted my friend would care for him as they weren't going to discharge him without a care package. I suggested to my friend to dig in their heels and get outside care arranged but they relented to the father and now have the responsibility of the father's care

Thank you Granpepper.
On a similar note to what you have outlined, if PWD is seen to be living with PC, would PC just be expected to carry on caring full time indefinitely? Even at the detriment of their mental and physical health?

Well, the PWD is entitled to a care needs assessment but, when my father's was done, they pushed for me to do more than I could. They didn't tell me I was also entitled to a Carers Assessment and, even when I found out about those and said I wanted one, I didn't receive it. I was far too polite until it dawned on me I would have to be firm as they were taking advantage of me - my own health was suffering and they didn't actually care. Your PC is entitled to a Carers Assessment and I suggest you push until this is done and also arrange to attend so you can advocate for the PWD and the PC. The Assessments are not joint btw. The PC is entitled to one in their own right examining their needs as discrete from the PWD. In short, and I was living in an entirely different town from my father, I would say it isn't so much about PWD living with PC, although that would be taken into account I expect, it's anyone Social Work identifies they can push or guilt trip to do things. I lived in a completely different town to my father but they still expected me to do things even when I told them in tears on the phone after a while my health was significantly suffering due to the pressure. I did eventually put in an official complaint which was fully upheld. If there is a Carers Centre in your local town, it might be an idea to contact them. You can usually get a face to face appointment. I wish I'd known a lot earlier than I did. Other options are online - carers.org. Good luck