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

Another chipping in to say have experience of this. It is like watching a slow motion car crash - you know it's going to happen, you even know how to prevent or at least lessen the crisis but the elderly parents will not accept support from outside agencies until they hit that wall at full speed.

Please do not condemn those families who step away from personal care of elderly frail parents. Yes to those who haven't experienced this situation it must sound hard hearted and callous to say you have to leave them as they wish. Unless you are able and willing to resign from your job / retire early and move in, you can not provide the level of input required to support 2 elderly, physically frail parents in accommodation unsuitable for the physically frail. You don't have to hang around on the 'Elderly Parents' board before you read about someone trying to do just that.

Your DH is not doing yourself or his parents any favours here - he is going to have to get tougher.

As a sell we started off with cleaners for parents who didn't want "carers" often it was more we wanted someone going in regular with our phone number to let us know what was going on etc and also taking some of the big jobs off the less ill parent - so washing loads/drying, bed changing etc. As things progressed they were less adverse to some more personal help with food/drinks/chat/sitting with ill parent to give other parent chance to go to Dr/barber/shops themselves.

Gardening/maintenance help is also another useful guise

You would be very lucky to find one, most have been closed down due to council cuts local to me.

I think you need to make it clear to your own DH, OP, that you will not be visiting them, even on a scheduled visit, if they don't have carers in place. You still work and need actual breaks; you're not there to provided medical and physical and caring support for people who are refusing the sensible options and relying on people who don't live there.

Tell him you'll be staying with or seeing only your parents on the 17th if his parents don't bring the carers back in. He'll have to sort it with them if they refuse. You can't be responsible for his mother's ridiculous decision (which is probably about spending the money, so be ready for that).

Sympathies, I'm in a stand-off with my DM at the moment and it feels bloody awful, but she has repeatedly refused carers even when I was going through chemotherapy she expected me to carry on looking after her. I spent all afternoon at hers yesterday and cancelled work and my evening plans as she had fallen. She was checked over in hospital overnight, they discharged her, and she's in quite a lot of pain, but my car was written off at the weekend and I start a new job on Monday and have to buy a new car and have a lot of stuff to wrap up (and I had planned some nice things which have now all gone) so she just can't be my priority. As people have said, I have to keep telling myself that this was her choice to not have anyone around. I've been trying to persuade her for five years now to get support, as we went through the same crisis with my DF, which I think was what made me ill. When the paramedics were there yesterday she was telling them that I was her carer, and I was just sitting there in the background saying no I'm not! It's exhausting, but the solidarity on this thread and others is useful!

I worked in elderly care, and I can't tell you how many times I turned up to a client to be told "no, go away, we don't need help" and you'd spend so long negotiating that you had barely any time to actually care for them.

When my Dad became terminally ill, we started very very gently with a cleaner once a week for just an hour. "I don't need help" was met with "Dad, I'm too tired to clean my own house let alone yours as well, if you can't support me when I'm trying to help you......". Then when he'd got used to that, the district nurse started going in and then when he needed carers he was very accepting.

It takes baby steps, a whole LOT of patience, and sadly it usually is when a crisis hits that you'll be able to say "it's accept help or go into a home, your choice but ignoring it isn't an option anymore".

Elderly, disabled people do not have the right to cancel carers and then expect family to pick up the slack, especially family who live hours away. That is not right or fair. It is selfish, and I say that as a woman in my 60s with a progressive disability.

Your dh needs to grow a pair and lay down some clear boundaries. If he won't do that, then lay down your own boundaries with him. Tell dh that you won't participate at all in their care until they reinstate carers.

I strongly suspect that in the back of PIL's minds and dh's mind they are assuming you will ride to the rescue because isn't that what women are for? Refuse to play the part and they will have to make other plans.

Hi OP,
Do you or your partner have power of attorney in place for health and finances? If not ask your parents in law if it can be put in place so that you can help make decisions when needed.

You need to tell your MIL that if she wants FIL to be able to stay at home for the foreseeable then she will need to accept help (due to his Alzheimer's) if she/they cannot accept help the time will come sooner that it will not be safe for him to stay at home.

Once your parents in law agree to have carers (and with your power of attorney) the carers should be told that they are not to be cancelled by your in laws. My relative was very opposed to carers and was always saying he didn't want them but as his wife had dementia and he was not able to look after her (or himself) then he had to have them. The line was "if you want x to live here at home then you have to have carers" and the carers knew to try to diffuse the situation when they were told that they were not wanted.

It is a good idea to think about the type of care that would benefit your in laws. If they can actually cope with getting up dressed, washed and especially if they can still get a meal they might benefit more from a more social/welfare visit. In this case you might be able to find a local person or small agency so the same person or small group of people visit to spend time/help/take your relatives out rather than a large agency sending lots of different carers which your in laws might find difficult. If they are still quite capable what you might find with a big agency is that people pop in and ask if anything needs doing and when your in laws say "no - we are fine" they leave. With an individual/small agency that you work closely with they will know that the first thing they need to do is go in, get the kettle on and start checking there is food, that breakfast has been eaten or start to get some ready, have a wipe round and get the washer on....

Another line to add next time they ask when you’re visiting/when you’re doing xyz is then ‘we can’t do that but I can reinstate the carers and they will’.

We were in the same position with my parents a few years ago. Dad with progressively worsening dementia, Mum pretending there wasn't a problem. I live at least 90 minutes drive away, up to 2.5 hours if the traffic is bad. I have three older teenage children, I could not be a "carer".

Few points - they might not have a social worker. Having a dementia diagnosis does not mean you automatically get allocated one. Dad's dementia was managed through the GP and mum had a "mental health" number she could call. They never ever had contact with social services at all. I know this for a fact as as we were reaching crisis point I called social services to ask what would happen to dad should mum be ill as he would not be safe on his own. They reassured me, but also sounded concerned that they were not on the social services radar at all.

A lot of people confuse "care" with "help". Of course most of us with elderly parents are happy to organise a tesco delivery, do some gardening, make sure the bills are paid. Caring is a WHOLE other ball game, you effectively have to put your entire life on hold to be there 24/7. It is a massive ask and in the OP's position where they are 4 hours away it's just not practical in any sense of the word.

Accepting carers is very difficult - some people with dementia find any break from the routine impossibly distressing, new people in and out of the house very confusing and upsetting. And you can explain it to them for the morning visit and they've forgotten an hour later. Imagine the fear/upset of thinking you have intruders in your house twice a day. It probably will have to get to some sort of crisis point where something happens and your MIL realises the situation is just not sustainable.

Wishing you strength though, it's not easy.

Well done for planning to stick to your plan as much as possible and not being drawn in to fill the gap they have created.
I’ve seen a similar situation where my grandparents cancelled the care and meal service my mum set up - with the expectation that she would make up the shortfall. Unsurprisingly, six months later she suffered complete burnout and could no longer work. She also has an illness resurface which I suspect may be linked to the stress they caused her. Long story short(ish) - you’re not selfish and you’re doing the right thing.

Solidarity from me here. It is very, very difficult.

Running around after both sets of parents, one distant, one set close (late 80's). Two fiercely independent, one totally dependent but refusing all help.

Finally got carers in to one set but only to chat, the realisation they need to let the carer physically do stuff hasn't sunk in to them yet. Other parent made the carer clean...carer has not been seen since...

As for the "how callous" comment. I'm running around precisely because I am not callous but I cannot look after everyone. Tbh, I can barely look after myself.

Plus they are not particularly grateful (this is what daughters are for) and are annoyed you're interfering. They cannot see their cognitive decline clearly and the one with dementia thinks she's perfectly capable.

I am toughening up slowly. There are blank looks when I point out we will have no-one to look after us!

My exh who is 88 has the same thing. He has various health problems but is still able to go into his office a couple of times a week.

None of our children live near him but he has an absolutely wonderful woman who 'does his cleaning and keeps his flat tidy'.

The fact that when he was very ill with food poisoning recently, she was there basically nursing him, and cooking food for him when he felt able to eat, was accepted as all part and parcel of what she does; yes because she's not a cleaner but a carer who also cleans his flat.

She really is fantastic but I think he'd rather die that admit he has a carer.

It's realistic not callous. There's only so much you can do if you live hours away.
The PIL are struggling and scared to admit they're not coping. It's enormously common. Unless you want to be chewed up and spat out by the demands of care you have to be firm and clear about what you can do.

Depending on the situation with your parents savings you can ask for help from council carers. With this, you can make contact with the local social services and ask for direct payments - this is when you are funded by the council to pay for carers you choose and you are happy with.

Your parents are obviously just not happy with random people coming to the house which is fair enough, it is very intrusive. Perhaps with someone they can grow to trust and like it might be a bit better.

It won’t be one carer. Even if you get someone privately, they’re not going to work 7 days a week.

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.

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.

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.

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.

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.

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

This, not your problem.

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.