PILs have cancelled carers and are now asking when we can visit

[StillNiceCardigan]

FIL is in his 80s and has Alzheimers and MIL is struggling to manage. We live 4 hours away and visit regularly but can't be there day to day. I'm devastated that they've cancelled the carers they had agreed to after one visit. Help me feel less angry at two 80 somethings who have just made life considerably more difficult for everyone.

I do understand your frustration, but, my DGM was cared for within our family home and I can honestly say there is a huge range of professionalism when it comes to carers. Being present when the carers are can be eye opening. More than once we had to dismiss someone after a few days.

Matching the individual with a carer is an important skill that agencies should have. My own DGM had a strong preference for younger carers and would be a lot happier and more co-operative with them.

This is your DHs place really but I’d encourage him to be present if another carer is put in place, just while each party is finding their feet and getting to know each other.

I wonder if it would help if you were to make a list on paper of all the jobs they both might need doing now and in the near future. Clearly mark the list to show things that you can help with (and how often) and things you can't. That can then be proof in black-and-white for them to refer to but also for the GP or care services as well. Take a copy for yourselves, and to forward to people involved in future care if needed.

Do they have powers of attorney set up? Your FiL's capacity to sign might be too far gone, but even sorting it for your MiL might ease some problems a bit further down the line.

Your dh needs to ring their social worker and say he's unavailable for care so the needs are going unmet.

If your parents live in the same town, did you move away?

Visit date? Never.

Not until carers come back, Dad.

Don’t fall for this one OP, it’s part of The Impossible Elder’s Script.

It may be worth enlisting involved professionals (you mentioned memory nurse and GP) and possibly adult social services to talk to them about help, clearly forewarned that no, "my son does not" from a distance of 4 hours travel. Make sure they know they have bascially refused arranged care well in advance of any visit.

What used to be called "the power of of a blue uniform" is dying out with older people today (probably no bad thing sometimes) but they may be more inclined to listen to someone not related.

I'm sympathetic to their situation but if this hump/mental block can be overcome, it does get easier to introduce things that will actually help retain their independence. Making sure everything is suggested as "this will help you and FIL stay at home safely", on repeat if needed.

My mum kept doing the same as your inlaws. Ruddy nightmare.

Finally she allowed it to get to the desperate stage and then we all had to jump and sort out a care home in 2 days as she couldnt cope.

The lack of self-awareness of the decisions parents make and how it ultimately impacts children's and gchildren's lives still amazes me. Borders on selfishness and a total lack of humility and appreciation.

I've been in your shoes. My DM with dementia would cancels DF's carer visits. Had to go down the capacity route with help from social services. I had Power of Attorney and was able to use it. Working with the care company they wouldn't vary visits unless they had spoken to me.

I also stopped rushing down whenever DM demanded. It was stressful and hard. If DH won't agree then he will have to manage his DP's on his own.

Never under estimate the pressure FIL may be putting on MIL. DM was very very difficult.

You will all just have to wait for the crisis. It'll come and I'd be telling husband not to even think about bringing them home with him at any point.

Glad you are feeling calmer after venting and your stomp round the block Op.

It is very hard, and I don’t know why, but in my experience, elderly parents can become very selfish and blinkered to other people’s needs. Sounds like you are your DH are on the same page, and that is what will get you through it.

Is this the new "did you move away from your ex, if so you should expect to travel"?

@NotSureWhatUsernameToChoose how do you know what you will be like if you ever get to that stage?

My DM lives in retirement flat. There are a number of residents there whose health has deteriorated. DM and I regularly have chats about these residents and how they should now be in a home due to their care needs. My DM can see that and talk about it rationally. If god forbid she gets to that stage not sure how rational and accepting she would be if we have to go down the care home route. Easy to say when you are not the person needing carers in the home or going into a home

Maybe just send your husband since he is retired.

It's not callous, it's the real world.

There's a limit as to how much you can do for parents when you have your own life and family, especially if you are hours away from them.

I live 3 hours drive from my elderly mother and visit for a few days once a month. She has carers 3 times a day plus a gardener and cleaners otherwise she wouldn't manage. OP and her DH look like they are in a broadly similar position there.

The PILs did have support in place to cope in the intervening period between visits (carers). It seems that one of them (MIL?) cancelled the carers and now they are trying to to shift it all onto the shoulders of OP and her DH.

That's why they need to back off. Just speak on the phone regularly but don't go before the next planned visit. They need to realise that they can't do this and that they DO need the carers.

This isn't even about the OP and her husband having a decent quality of life and not burning out (important though that is).

It's about the PILs having adequate care and support. They cannot be adequately supported by people who live 4 hours away. Having local carers is necessary. If OP and her husband attempt to take on the burden themselves, then even with their best efforts, the PILs will inevitably be failed and poorly cared for. It would be a terrible choice from everyone's point of view.

I think this is really common, as people in their 80s and 90s push back at the lack of independence they perceive as coming with carers. My BF has just had the same battle with her own 92-year-old dad, who eventually reluctantly agreed to move into a full-time care facility, but it took a lot of blood, sweat and tears (literally, as he had several really bad falls at home before he agreed to move) to get there. Hopefully they'll see sense eventually, but I think you just have to hang in there until then. Good luck.

Yup.

I had a friend whose partner had terminal cancer. They'd reached the stage that hoists were needed.

Carer knocked and entered: "Hello! I'm the bum wiper!" She was told to go.

This, not your problem.

Spoken by somebody who hasn't been in a similar position with ageing parents.

OP, I’d get the carers reinstated for one visit a day, get them to document it eg door not answered, door answered but admittance refused etc. Social services might see they’ve been cancelled and use that to say well you haven’t tried everything.

And, as an ex carer, no one should feel bad about stepping away from elderly parents and leaving it to paid professionals. They get to go home and do other things with their weekend. You (relatives) get to go home and spend all weekend worrying about them. Not once did I see any judgement from carers/nurses etc re the fact we were doing things that the families could have done. Leave your visits to be cups of tea, news about the rest of the family and reminiscing, looking at photos, complaining about the PM, complaining about that bloody woman three doors down etc. The professionals can do everything else.

PLUS, very importantly, it’s much easier to have your personal care done by someone who has deliberately chosen to do that job and has no personal relationship with you other than as a carer.

It's incredibly tiring. My dad was a nightmare, everytime something went wrong he would refuse the carers or the day centre. Turned out my sibling had previously been threatening him with a certain type of nurse and a care home. It was horrible but all came to a head when i went away on my for a week. My parents realised they couldn't do it by themselves and we managed to negotiate some middle ground and I promised him he wouldn't be sent to a home unless it was absolutely necessary. Thankfully I managed to keep that promise.

I wish you luck finding that acceptable middle ground.

I miss my dad but I don't miss the stress of carers and medical staff.

I feel your pain, OP: my MIL refused all assistance when looking after PIL but phoned DP several times most days begging her (my partner is female) to go home to help. They lived a flight away...

Why can't your DH go and live with them for a fortnight? I'd suggest that. You can have a nice quiet fortnight at home and he can grow a backbone while he's with his parents and get something sorted out.

It's really important to find the right carer and I've seen a number of elderly people struggle to find someone they can get on with. Our late next door neighbour went through several before finding the right one. It's not realistic to expect an elderly and cognitively impaired person to cope with, say, someone who speaks poor and heavily accented English, or a very quiet client to have to deal with a carer/ cleaner who has local radio blaring while she works. Your husband could help with this process and help them find someone they're happy with. Much easier to introduce a carer while he's there to act as an interface.

My df is 93, he has a carer every morning for 30 minutes who helps with his medication.
He refuses to allow any physical help.
Nobody lives nearby so we at least know he’s alive everyday.
He complained bitterly initially but it’s been a year now and I think he would miss it.
Trying to get him to allow a cleaner is something else.
I also have his carer bill emailed to him as then he doesn’t look ( he rarely checks emails) otherwise he gets het up at the cost, which he can easily afford.

Yep. I have done personal care through to end of life over a number of years. It's a literal labour of love. That still doesn't stop me from recommending people use carers - everyone's situation is different, and what works for one family is not going to be the same for someone else.