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?

Join the club - has your DH and his siblings had any discussion about finding a care home for them closer to them?

Both his siblings live in Europe so not feasible. We did mention years ago about them moving closer to us in a nice two bedroom flat but they said they’ll never leave where they are. Tbh having lived in their current home since the 1960’s it would be too disruptive now. We’re going to start with the idea of a ‘cleaner’ (carer) and see how we get on.

If they are ruled as not having capacity you can move them into appropriate care but the threshold for this is high, above forgetting things or sell by dates. We did this with my grandfather

You will have to wait for something to go badly wrong
We tried to have a conversation with my Mum and Sdad and they sat and agreed with evrything we said and then started talking about booking a cruise (they could barely manage the suprmarket at this point).
It took Sdad having a stroke in the bath and almost drowning for them to accept some (not really enough) help

We eventually persuaded my DPs into a carer, they like her so much Dad's kept her on for cleaning/home help even though my mum's in a care home now.

We’re in an odd situation whereby we have one capable parent and one who has just had a crisis and will be sent straight from hospital to a nursing home.

My capable parent has arranged home adaptations, cleaners, food deliveries, stopped driving and been good with taxis and has been first point of contact with various services for the other parent. Even then the crisis situation has taken a massive toll on all of us. I feel like an absolute shell of myself and am fearful for the day my capable parent becomes less so.its just really shit basically.

I would contact adult social care for advice.

True but so very hard to do. We've lived this year since about February feeling that we are three hours away from the next crisis as FIL is also 150 miles away. FIL refuses help too. Just don't do what we did and move them into your own home, your life is utterly taken over then. FIL really didn't want to be here but he also didn't particularly want to be back home. Eventually did go home after five months but that's not great either though he is happier in his own house. GP family member has stopped offering FIL suggestions as "you can't be reasonable with someone who is behaving unreasonably and is not a reasonable person". I am coming round to that point of view...

Yes unfortunately there is no ideal distance:
Friend 1 & 2 - live round the corner from their elderly DPs. Are used for every little thing with any requests having “pop round” in their body, and used for absolutely every technical or logistical issue
Friend 3 - lives a plane trip away. To be fair her DF has upped the cleaners hours of his own accord to provide a bit more help for him, but still does frequent flights across the coincidental
Me - lives an hour away ( if traffic is light) from aged DPs. They seem to think it’s a few minutes away and either DH or I go up at least weekly. Foolishly I write a list of chores before I go, but it’s like whackamole with new fresh hells every time I am there. Sometimes I wish I lived closer- would be easier for checking on groceries etc. but then I think I would be even less able to maintain some boundaries.

So in summary all distances are bad. It will only get better when/if they accept the level of care they need and/or go into a care home. Both of these things will require a crisis or a series thereof to happen.

I am going through very similar with my own parents, late 80's. 150 miles from me. Over the last 5 years at least. I have had many discussions about getting outside help as they have got older and frailer. They refuse out right. When mum has had falls and been in hospital, I have spoken to staff there about getting help at home for them. Mum and dad will agree at the time, but once home decide they can manage and don't need help.
The are both incredibly frail now, but just won't acknowledge they are getting so much older.

They won't have me doing online shopping for them. They do have a cleaner that comes in once a week for an hour, but they won't let them do much and the house is now becoming dirtier. Food in the fridge is going off. They don't seem to notice.

Luckily I don't get phone calls about needing anything, they are fiercely independent and think asking for anything is a sign of weakness.

It has come to the point as others have pointed out, that we have to actually wait for the crisis to happen for them to finally agree to anything. I have had to take a step back and allow them to get on with it. It's really hard to do this, but I have tried everything else.

The one thing with going through this is for me to make sure that everything is in place for me getting older and that I will not do the same to my children that my parents are doing.

I was literally coming on to say the same thing.

Your job here is to offer what you can without burning yourself out and learn to deal with the feelings of discomfort you have around their choices. For most conscientious people the second one of these is nearly harder than the first one.

Just found this thread.
It's an awful time for adult children. Especially when there's no back-up. Mum's GP suggested she was deaf instead of having dementia.. ffs.. I think we knew her best. Age UK promised everything & delivered nothing. In fairness it was Covid time. Best wishes to you, @charliehungerford it's not easy.

Thank you all for your comments and advice, It’s useful to hear about other peoples experiences. The POA is on its way and we are gradually dropping comments into the conversation about a ‘home help’ or a ‘cleaner’. We can only try to steer them down the correct path, and if they refuse help we are resigned to them having to live with consequences. It’s so sad to witness their decline. Medical science intervenes to prolong their lives, it keeps them going, but nothing helps with the distress of their mental decline and their total inability to cope.