Where do we go from here?

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.

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.

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.

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.

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...

I would contact adult social care for advice.

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.

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.

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

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

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

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.

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?

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.

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.

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.

@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.

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.

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.

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