Where do we go from here?

[charliehungerford]

If anyone can give me the benefit of their experience it would be appreciated.

My FIL (90) and MIL (89) live 150 miles away from us. They have no friends or family within 100 miles. They live in a three bedroom house built in the ‘60’s which is now no longer suitable, steep stairs, large garden, no accessible shower, they won’t pay anyone to do anything (despite having plenty of funds in the bank and a healthy income). They have both deteriorated mentally and physically over the past few years, and are now showing clear signs of dementia.

We tried to encourage them to downsize with our help, into a suitable flat 15 years ago, to no avail. They are becoming more and more frail, confused and verging on dangerous. We organise weekly shopping deliveries, prescriptions, and do a 300 mile round trip when required to facilitate medical appointments. A financial POA is currently with the OPG to enable my husband and his two siblings to assist them with finances, they won’t agree to a health and welfare POA.

We have now reached the stage where we are getting numerous daily phone calls, they call when the remote control isn’t working, or they can’t find a key, or they think something (that they have mislaid) has been stolen. They keep calling to say they have no food in the house, despite them having a large delivery (£60-£70 a week). They are no longer able to understand ‘use by’ dates and regularly eat food that has gone off. They are now very suspicious of neighbours who try to help and won’t engage. My DH has always had a difficult relationship with his DF, he’s always been stubborn and a bit of a bully. My relationship with him has always been poor, but I try to put that aside and help as much as I can.

If they won’t accept help from outside the family, and family are not nearby to assist on a daily basis, what do we do? Wait for a catastrophic event to happen? I know it must be very frightening for them, but what can we do when they won’t listen to their family and ignore all our suggestions. It was a 12 month uphill battle to get them to agree to us organising their weekly Tesco delivery, up until then they’d expect neighbours to take them shopping. The situation is worrying and not sustainable. My DH and his siblings no longer feel that they are able to continue to live independently, but they wouldn’t be open to us organising any help, and they certainly wouldn’t pay for it.

Does anyone have any experience of dealing with parents like this, how do you manage/help them?

Sorry but you have to wait for the crisis. Tough but nothing else works.

We have been in a similar situation with my in-laws. DH is an only child and 200 miles away. After several panicky phone calls where FIL with dementia has wandered off or tried to get out and won't calm down MIL has finally agreed to him having two weeks respite care. DH said he couldn't keep going every time she rang and if she didn't want carers or to consider a home she had to deal with it herself. That sound's awful written down but every suggestion we came up with was ignored or refused so we had to wait for thing to get too bad.

Ask social services to do an assesment.

Yeah, sorry, I echo pp. It’s a case of waiting for the crisis to force the issue. If they won’t even acknowledge that they need help, they probably wouldn’t cooperate with a social services assessment of needs or accept any of the suggestions or offers of assistance, but it’s worth a try just to get them on their system for when the inevitable does happen.

If you have a way of contacting the neighbours, I would encourage them to report to adult social services too and to not take on too much themselves.

This stage is awful, but your DH’s family isn’t alone in experiencing this. Pop into the cockroach cafe thread for ongoing support.

Although you don’t have POA for health and welfare it doesn’t stop you passing on information. You can write to their GP with exactly what you’ve written here and you can make a safeguarding referral to their local authority.

If you stopped helping them over and above what you can manage (e.g. occastional phone calls or advice) what would they like to happen or accept?

Very common playbook for elderly people is to refuse any help outside the family (possibly due to difficulties coming to terms with how their life is changing). If you refer to Social Services, they will turn them away at the door. If you engage a cleaner, they will lay them off. Don't want to hear about home adaptations or safety features. Usually it is only a crisis such as a fall/break that requires a hospital admission that forces a change.

You/your DH could try stepping back and meeting the phone calls (persistently) with "can't talk now, do call me back this evening after work" "I can't help but let me know if you want me to phone a care agency" "You will have to phone the GP or an ambulance" "shall I book you a taxi for that appoinment?" See what happens. If they become a nuisance to neighbours then refer to Social Services. Although they probably have too much money for SS funding, SS can be quite good at signposting to decent care homes or agencies. It might be worth you having a chat to Adult social care just so they are on their radar if something happens.

What you might be able to do is get the GP to log them as unable to cope with any computer/website/text message system so they can phone up for appointments, prescriptions etc. (also prescriptions can be delivered).

My sister's PILs were like this, they passed away within a few weeks of each other after MIL's multiple health issues came to a head and PIL had a slip/fall which he couldn't recover from. Totally inaccessible cottage, hoarded rubbish, 10 year old food packets etc. They had no interference from outside, as they wanted, so I guess they had that satisfaction! But it was hard for BIL and his family. In the end, if they have capacity, you can't force them to look after themselves. And if they don't have capacity it's still quite complicated to get them into a safe place.

Yep, been there unfortunately- like my DF, they are too proud to admit they need help and like a PP in his case only a crisis convinced him he needed help. And he didn’t want to spend money on getting more help (didn’t qualify for any funding).

For my DF, he already had a cleaner and a gardener but once he recognised he needed more help, he had a carer paid for by him that came for an hour per day. This cost about £1k per month. Carer unpacked weekly delivered shopping (he liked going shopping with neighbour as it got him out of the house so persuading him to accept this was hard but he kept buying food that he was unable to cook). Carer threw out outdated food, you can specify what you want the carer to do.

DF found every opportunity to criticise carer, was convinced he was being robbed (he wasn’t) but it was made clear that it was that or a care home as me and DB live a long way away and couldn’t keep dropping everything to sort him out. An interim step might be sheltered housing but that wouldn’t have worked for him - and he would still have needed a carer.

he lasted about a year of this and is now in a home. It’s a lot calmer now. Getting old is shit

Op unfortunately you just have to step right back and wait for the crisis to happen. Similar situation with my elderly stubborn father so solidarity x

Yep. You do nothing. This is the life they chose. PIL lived with a similar selfish ‘cross that bridge’ mentality which ended up with them constantly on the phone as they deteriorated. One passed, the other now in care. Very stressful and mostly avoidable. It left a very poor legacy.
Ask for an assessment and hold your nerve. Do not bail them out or you will be left to it.

Wait for the crisis. It won’t be pretty. The wait for care is unpleasant too, especially as you’re the one doing the pushing as the NHS and SS won’t do much.

I’m so sorry for you. What often happens is one of them falls, the other one can’t manage at home, SS assess them and they’re both put into care. If you’re lucky.

The key is to ram home to all the officials eg medics and SS how demented they are. Then tell SS 500 times you can’t provide unpaid dementia nursing care 24/7 for the next 15 years for two people cos …you live 100 miles away.

SS should accept that. Then repeat a further 500 times.

I don’t think yr PIL will cope with a carer at home from the sounds of where they are with dementia paranoia.

POA wise, given you haven’t got it, if PIL argue about being put into care, a SW sections them. Then you get a DOLS in the care home, ditto. But PIL might not kick off - my DM was appalling about everything for years but skipped into a care home.

You step back and wait for it to tip over. Which it will.

And yes, the years of strain and misery caused by PIL decisions do affect your bond. And your health.

My friend is a social worker and said similar - do the referral even if you are convinced social care will be refused immediately as it means they exist on the system as does a concern over their safety, she said it makes things easier for them when the crisis occurs.

Having issues is crap, esp at 63, mid stage Parkinson’s, I take what help is offered tho

You have to wait for the catastrophe.

That's what happened my folks.
Thet both ended up going into care together.
My DM died six months later.
My DF - any day now.

Thank you all for your comments. Very useful. As many of you have reiterated, there is only so much you can do if they won’t engage with the necessary support services. All their children told them that they needed, with our help, to plan for the future as they don’t have family around (all three children grew up in the city they currently live in but moved away for work 30 plus years ago, so their isolation was not unexpected). We tried to reason with them in their 70’s, but they were stubborn and wouldn’t listen. We told them that they would have to live with their poor choices, but were ignored. I’m not watching my DH run himself into an early grave with the stress of it all. There is only so much you can do when they chose not to engage. It is frustrating though when they deny they need help but phone us five times a day to sort stuff out.

It sounds like DH and his siblings need to have a discussion about this. The right thing to do is to refer them to social services, if the ILs choose not to implement the recommendations at least they are on the radar.
Also means when you get the calls DH can say “ Someone who is able to be there in person would be able to help with that. Happy to set the ball rolling to get a carer in place for you like social services recommended.”
The reality is more nuanced and deeply awful. Living closer just means you are expected to do more so you need to let go of the resentment that they didn’t move. Could DH and his siblings arrange a rota to visit them ? They might open up a bit more if they are able to talk in person.

Usually though nothing happens until crisis point is reached. DH went up on Sunday as DF was sounding very confused on the phone and managed to get him admitted. I am hoping he gets the dementia diagnosis and a care plan is put in place - we’re in Scotland though so it’s free when they are at home which gets rid of one of the big barriers.

Thank you for your advice. The three of them have had a talk about the way forward and I’ve made contact with a care agency in their area, they have more than enough funds to pay for help, it’s going to be difficult to convince them that they need it, but if they want to continue to live independently they’ll have to agree to a few visits a week from a carer/cleaner to help them.

@charliehungerford my advice would be to start small. Encourage them to get a cleaner in once a week “to reduce the burden on them” and then take it from there. Try not to mention the carer word or they will push back. I found an agency that will do things like check fridge contents and take them out to the shops - of course they blocked me increasing the ladies hours to allow her to do this.

There will be a gap between what your DH thinks they need and what they are prepared to accept. If possible try not to angst and that and view getting any support in as a win.

Sadly I can only echo what others have said. Any Care Agency will commence with a telephone call to them. They will refuse care and that will be it. A crisis will occur, usually a fall and they will be admitted to hospital, At that stage the Hospital social worker will get involved and make a decision on their behalf.

It is horrible to have to wait for the crisis but it is the only way.

Yes, that is what we are concerned about. We can only try to reason with them. They would prefer my DH to ‘pop down’ to help, just a 300 mile/six hour round trip which is not possible.

People always say this. I found it impossible to get anyone to help. Only child, live 220 miles away, work full time. I’ve recently been through this, it’s so difficult. DM died in Dec 23, in hospital with vascular dementia, 84. DF died in April this year in hospital having fallen a few times and with dementia, 92. Nearly broke me.

Contact their GP in writing, giving a full explanation of their circumstances. Copy to their local Social Services.

Find out if their Gp can refer to an Old Age Psychiatry Team if possible for diagnosis. This type of team have great experience in engaging with reluctant clients.

Imo, is is cruel to ignore phone calls. However, it is completely appropriate to set boundaries,e g after 7 pm ,and to divert them to other agencies. Tape a note to their phone to phone after 7 pm . If an emergency tell them to phone 999. Keep pushing back. They will feel better if their anxiety is contained.

You all have a life to lead. So difficult for everyone.

Sadly it was only after my step father falling and injuring himself and my mum quite badly that social services got involved (after refusing my mum support initially).

I think to be fair, social services are so under resourced that nothing will happen until it has reached crisis levels.

Have you tried speaking to Age Uk or a similar organisation about support that might be available locally?

Social Services may agree to do an assessment but as your PILs have funds to provide their own care that will be the end of their involvement. And it is likely they will either refuse to implement any SS suggestions, or won't even let them through the door. After SS assessed my mother and then discovered she had her own funding, their closed her case. So you can try SS but it is unlikely to lead anywhere.

You won't be able to reason with them as dementia is impervious to logic. And they won't remember what you said anyway.

So yes, you will probably have to wait for a crisis like a fall or illness lands one of them in hospital.

When the POA is registered and available to use, your DH will be able to organise paid help for them. They may turn them away, but it gives you more leverage.