Supporting elderly parent from a distance - cognitive decline

[user14723038]

DM is 80, numerous health concerns but clear and rapid cognitive decline over the last few months. She is now frequently confused and having problems managing T1 diabetes. Her partner feels she needs supervision at all times. No carers in place, and she would be highly resistant to care arrangements, even if any were available locally and I'm not sure there are. I don't have POA or similar.

I live 4.5 hours away and have a f/t job so can't just pop over to hers, I really don't know what to do next as the situation is only going to get worse.

Any advice very welcome as this is causing me great anxiety!

Well I've been there and done that with my own mother, now deceased.
It sounds like he's saying/implying it's getting to the point where he won't be able to cope any more.
Depending on how bad she is mentally, I'd be looking to get financial and health POA organised asap because the alternative is supposed to be a nightmare.
I think you need to have a conversation with him about what's the best thing to do which is in your mothers best interests (not necessarily her wishes).
When did you last see her, a rapid decline is alarming and hard to comprehend unless you're seeing it with your own eyes. My brother simply refused to believe how bad mum had got despite me and dad telling him what she'd been doing (basically a danger to herself and falling all the time breaking bones)

@CrotchetyQuaver thank you for the reply. I discussed POA after a fall a few months ago but she's not done anything. She tends to agree to everything to avoid difficult conversations, but is suspicious of my motives and doesn't see that there is a problem anyway or is in denial. Saying yes isn't the issue, but getting it actually organised is. I would be interested to know how others managed.

Apart from that I guess she will need home care of some sort and where to begin with that...

I think it might be too late for POA if she has cognitive decline now. You have to be of sound mind before you can authorise that. The only other option would be deputyship. If you had to.

Other than that, can you put care in place? Most people are highly resistant to having carers in to start with but if she has cognitive decline, is she even capable of making that decision.

It isn't fair on her partner to do all the work and never have a break. You definately need to sort a care package. Would she be self funding or would she require public funding? Because depending on this there are different places to go to look for care.

I think she is capable of making decisions now, but I'm not sure for how much longer.

Re: care - I guess self funding as she has savings? Not that she would want to spend any of course. I think she gets attendance allowance but I might be wrong. She'll answer yes if I ask but I don't know it that's true or if she just can't be bothered discussing it so she just says yes to shut me up.

I would drive up there with the POA forms asap and try to get her to sign them. If you have them with you, you might be able to push her to make a decision. Then you can file them right away. Be clear with her that they only get used if she ‘gets hit by a bus’ or similar.

If she cant be left at all, I would also be looking at some local care homes and seeing what the waiting lists are, so you have a back up option in an emergency. (You can also compare the ones close to her home with some close to your home)

then have a chat with her partner and see what is really going on, especially on a day to day basis.

Yes, PoA is an absolute priority, can't emphasise that enough - we're having to get Deputyship, which much more hassle than PoA.

You can print the forms from the Gov.UK website.

Thank you, that is good advice. I will look into POA asap.

I don't know what to do about her needing supervised. I think this is the partner's worries but he messaged me late last night saying I need to go there and look after her. I think he's panicking because he feels that he can't go off and do his own thing. But I can't, I work full time and DM has no friends or other family locally. I can't take leave and it's a 9-hour round trip away. This is the immediate problem - any suggestions? (shame you can't hire a childminder for oldies...)

Don’t underestimate the enormous strain this will be putting on her partner. Even if he needs some time to go off and do his own thing, that’s important for his own sanity and wellbeing.

Agree with others re POA but it may be too late and takes weeks and weeks to register at the moment (EVERYONE should have POA in place not just elderly people! - I did my own recently and it took months)

With cognitive decline it’s important to try and stay at least one step ahead, see if you can organise carers a few times a week, which can then be built up as needed. A lot of people are resistant to care but if you are lucky and find good carers, the resistance might go away.

And another piece of advice, which I have found out the hard way, it’s not always best to keep the person at home as long as possible (even if you have full time care). It can make finding a suitable care home much harder in the long run.

Good luck OP and sympathy, it’s absolutely shit 🙁

On a practical note, maybe join some Facebook groups for her local area and ask if anyone can recommend any local carers? There are good people out there! Finding good carers that you can build a relationship with is a lifesaver

Are you happy to be her advocate? For the rest of her life? Whatever comes. With all the toing and froing that that entails? You have to think about your family as a whole and make decisions based on all of them ... including yourself .

And you CAN effectively hire a childminder for oldies, though is it is usually on a one to one basis and they, of course, charge accordingly. (Personal Assistant - round the clock, daytime, nightime, or a few hours here and there)

Age UK do a Befriender Service and they will sit with/take out the person whilst the partner/spouse has some downtime.

Worth enquiring.

Actually, there kind of is - have a look at the Curam Care website.

Her partner is telling you he can no longer cope. You need to relieve him somehow, either yourself or paid carers. If you don't, he will become ill too. Then you'll have 2 problems to deal with instead of one.

First up - don't go rushing over there to fill in a gap in care because her partner can't cope. That's just a temporary sticking plaster, doesn't address underlying issues and will cause more stress for you as you're at a distance and have other priorities.

Yes POA is a big one. Get onto it asap. It took mine ages to agree to it and that only happened because someone she knew had suddenly fallen ill and didn't have one set up. So leveraging what friends have done may help.

Had her partner had a carers' assessment? If he's struggling to cope he needs to get one of those done and tell SS that he's struggling. If you bail him out they won't do anything. They should be able to state whether she needs x carer visits per day or genuinely can't be left. They should also be able to organise respite care so he can have a break.

Also meant say in my previous post, attendance allowance is pitiful and not means-tested so if she has savings above a certain threshold she will have to pay for care. The whole system is a joke

it sounds as if they urgently need some help. Refer you mum and her partner to social services. This could take some time but emphasise how vulnerable they are and the high level of carer stress which is unsustainable.

get yourself down there and if it’s still appropriate (honestly, does you mum have the mental capacity to make the decision?) get POA sorted, you and her partner could have it but then you’d need to agree on decisions going forward.

you can start private carers and / or look for a PA but this will be tricky to sort financially if your mum still has capacity and doesn’t want to pay.

How we organized POA for my FIL is basically we did all the organizing, he was able to agree he trusted MIL to look after him so we bunged the forms under his nose there and then.

If you leave it to your DM to organize, nothing will happen as sorting it out is beyond her abilities.

Thank you for all your advice. I'm just in tears now, I've got nobody to talk to, I feel so on my own and with such a mountain ahead. I already work 70+ hours p/w and I'm totally overwhelmed and knackered with stupid menopause and all this on top.

@NotSuchASmugMarried I know what the partner is telling me and I have sympathy for him. But I can't afford to leave my job and the training I'm doing on top of it - there are few vacancies in my field and I'd never get back in. I can't afford to pay for carers, DM won't although she can afford to. She is a difficult person at the best of times and won't agree to paid help in the house. I have suggested it before.

@EmotionalBlackmail I have never heard of a carer's assessment, thank you. I will look at this too.

Sometimes you need to accept that you can't provide the solution they want - FIL wanted one of DILs to give up everything and move in to care for them 24 hours a day which would mean they slept on a chair in the living room with no storage space for their clothes!
You have to tell them what you can do, be that online shopping orders, help with online banking etc and then let them realise they have to accept and pay for carers. It's a roller coaster you just have to hang on and ride usually until there is a mega crisis that forces the issue.

Agree you can't force them to do anything. If your mum won't pay then you and her partner need to give her a stern talking too about the pressure it's putting her partner under. Frame it so that she is doing it for her partner, it's her partner who needs this.

Agree with a PP also, there is ususally a mega crisis that then forces people to get care. For example, if she had a fall and got taken into hospital you could just refuse to take her home until she got carers in place.

www.nhs.uk/conditions/social-care-and-support-guide/support-and-benefits-for-carers/carer-assessments/

Solidarity! Sometimes elderly relatives can have completely unrealistic expectations. I'm the breadwinner for my family, work FT and have a primary-aged child (ie can't be left in house on own). My job pays the mortgage and if I left I'd struggle to get back in as it's competitive and specialised. My Mum doesn't agree with women with children working, is about 3 hours away but thinks I should be dropping everything to drive her to appts and visiting her every weekend to sort her things out.

I don't do any of that. My priority is DH and DD. It's absolutely fine to put boundaries in place and stick to them.

You don't have to go over there and look after her.
This is what we 'scrimp and save' for all our lives. To buy in help and care as needed when older. What is she spending the non means tested attendance allowance on?
If she chooses not to engage with carers she will live with the consequences. Forcing a crisis is usually the only way.
Stay away. Your priorities lie elsewhere.

Does she have a joint account with her partner - would she get the AA paid into that then at least he'd have access to it to pay for any external help needed?

I think it might be too late for POA if she has cognitive decline now. You have to be of sound mind before you can authorise that. The only other option would be deputyship. If you had to You have to be able to understand what the PoA is, its effect and scope. It’s possible to understand that even if you think it’s still 1983 and your grandmother is coming to tea.

Capacity is assessed on a decision by decision basis.

Thank you - joint account holder is an interim idea that I'd not thought of. If she agrees of course. What is she spending AA on? Heating bills? Definitely not any kind of help.

I phoned the local social services team and registered my concerns about her and effects on her carer. They said there are big waiting lists for care, but I've got the ball rolling. Unfortunately though I think the mega crisis is what might happen.

I feel a bit less overwhelmed than I did earlier. Thank you everybody. I am very grateful for the support and different ideas, any other advice would be very welcome.