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.

@AvrielFinch thank you. Sometimes I need to hear this from those of you wise enough to have navigated a similar path. Also, to lighten the mood I do hope I did not insult any readers of Celia Imrie fiction!!!

But why would they have to? What would happen if you ALL said "I'm busy". "It's too far". "I'll see you next Friday".

It's not as simple as that though. Someone with capacity can still make unwise decisions, or refuse to acknowledge that the way they choose to live depends on their child doing x, y and probably z as well for them.You can't just put someone in a home, or make them have carers if they don't want to.

It's different with children. You're meant to protect them and SS would have words if you didn't! Whereas elderly parents can be merrily driving around in lethal cars (no toddler does that!) refusing to stop driving. They have their own money and can spend it how they like. Even if that's on scams instead of carers!

@EmotionalBlackmail I know. That is my point. They are adults and make their own decisions, wise or unwise.

Sometimes you have to be angry with them and tell them exactly what their decisions are doing. I had to with my Nan. She now loves her carers and wouldn’t be without them

Hi op,

sending hugs…

it isn’t easy to age and « need » someone, a stranger to do stuff for you.
It is really to your do to decide what he wants to do. Of course, that would mean on HIS time and not just putting his load on you without a prior agreement but if he wants to … which I think he is (hence he doesn’t say no), then there is hardly anything you can do.

however, as you leave far. It is a concern that they would need 4h to be reached…that someone would come around every 2/3 weeks. It is just not workable that way.

Good luck 🌺

DH not do

You sound wonderful ❤️ ex carer here too. You are my kind of shift buddy!

@BlueLegume mine went through a phase of obsessing about me doing her ironing for her. She wanted me there every week, from 2-3 hours away, doing jobs including the ironing.

I barely iron anything of my own so wasn't about to start doing her entirely unnecessary ironing!

not really much point in doing that. The PiL still needs to agree and can still refuse them entry

There needs to be more carers like you two! I was also like this, and as a social worker now it’s pretty frustrating that some home carers lack these skills.

God this is so, so selfish. Why do elderly parents do this? I suppose it could be a decline in cognitive function, meaning they're not making good decisions, because it just makes no sense. I am so determined to buy in as much support as I can when I'm older so that I am not a burden in anyway to my children. Spend quality time together hopefully, but I don't want them to be my carer.

God this is so, so selfish. Why do elderly parents do this?

Mine, I think it's because she wants to save all the money she possibly can to give to me and DB as inheritance. I keep telling her it's not money I need it's time and space to be able to live my own life and maintain my own health, but she doesn't seem to hear it. I've given up on my business partly because the constant crises make me too flaky to be reliable, and I am taking a job, which also has the benefit of being able to say I am at work and I cannot do anything like my DB does.

I can empathise my mother (87) did exactly the same. She had a spell in hospital early last year and was sent home ( too early in my opinion)with the support of rehabilitation carers supplied by the N.H.S. At first she accepted them , really because she was too ill and frail to do anything herself. When she felt better adult social care got her a care package now this new care company was a completely different kettle of fish. She resented them in the house wouldn't let them wash her, dress her or do anything saying 'my daughter does that' I didn't. We tried a different care company she was the same. In the end we had to cancel them .To be honest I thought why are we paying nearly a thousand pounds a month. So now Family visit as much as possible and we just manage it's not ideal but a lot better than the grief I got with the carers .I know it's a bit different to you as Myself and other family members are close by. I have spoken to adult social care and if she doesn't want them there's nothing we can do.

@SierraSapphire cognitive decline…if that was the case I would happily drop everything. I have had 62 years of our mother’s awful behaviour. Everyone is now seeing her for what she has always been not the ‘isn’t your Mum fabulous’ narcissist. That said they can all scarper and we are stuck trying to navigate the fact she refuses any external help. I actually had a really early memory this week of making a pot of tea with my sister and us carrying up and leaving it outside her bedroom in the hope she might wake up a bit nicer. We were far from being in an abusive situation but definitely coercive behaviour to get her own way.

I had this experience with a friend of my elderly mother who had undiagnosed Alzheimer's. Her sons lived abroad and were next to useless. I finally stopped helping once my own beloved Mum had Cancer and my time (also working ft) was taken up with her. The sons had to step in at last and got some limited support as she was determined to stay in her home. My lovely Mum died, this lady had a series of falls (all preventable if she'd agreed to the support needed) and she broke her hip. She never came home again and died in a home miles from all her friends, so they couldn't visit. The moral of this? Know your limits and put your foot down now. These people are adults and have the right to make their decisions. Don't let their selfishness destroy your life. My mantra now is 'set boundaries' and I'm all the better for it.

This is so hard. I’m in a situation where my both 80-something parents have deteriorated rapidly. I want them to be able to stay home as long as possible and I’ve have found a private care company and they are visiting to assess. Hoping for a few hrs a day initially. My mum thinks she doesn’t need it but we are ploughing ahead. They have the funds and I’ve said to her that it’s to help dad if something happens to her (as she’s been really ill recently). Dad is open to this but appreciate this might be difficult in your situation. Your husband needs to have these conversations with them and I think be quite firm. I tried the treading on eggshells ‘you might want to think about…..’ but eventually had to take control. We’re about 60 mins away but daily visits are not possible as work a 6 day week. Good luck.

Me too.

A similar thing happened with my Mum. My Dad used to care for her but then he passed away from cancer. My Mum then basically forced my brother to move in and take his place. I have my own health issues but did as much as I could, mainly keeping her company in the afternoons so he could get out for a break. We had carers for personal care but she didn’t like the carers because they were making her wash and dress at times that didn’t suit her, apparently, so they were cancelled. I think the problem is that the carers would to some extent tell Mum what to do, whereas with my brother Mum was always the boss. She was the parent so we ‘kids’ had to do what she told us to, that was her point of view. It was about her wanting to keep control over her own life, but she didn’t seem to consider or care how that was impacting my brother’s life at all. I think that selfishness is a part of cognitive decline, but the nurses when she was in hospital said that it is very common for the elderly to simply not be able to understand anyone else’s needs anymore, they just become completely self absorbed, they can’t help it. No one really understands how tough it is to deal with unless they’ve been through it. If she was still her usual self looking after her would’ve been a joy, but my Mum wasn’t my Mum anymore, she was more like a particularly difficult teenager. What she wanted wasn’t what she needed. She was refusing to eat properly or get any exercise and kept on getting up in the night while my brother was asleep so she too had a number of falls. Medication was an issue too as although my brother monitored her tablets she kept on worrying for more painkillers and then getting up in the night to take more, but she got the boxes mixed up. When we discovered this we tried to work out exactly what she’d been taking but it was all kinds of things. We had to lock away her medication to stop her overdosing, which went down like a lead balloon. She ended up in hospital then a nursing home simply because she refused to accept the help she needed. She had gotten to the point where she needed 24/7 care from qualified nursing staff, which we couldn’t provide at home. She died soon after. We were with her, but she wasn’t at home in her own bed, and I will always feel sorry for that. OP and everyone else on here going through this has my heartfelt sympathy xx

To be honest I will resist having carers as long as possible although I will not ask my children to step in.

To be honest I will resist having carers as long as possible although I will not ask my children to step in.

My Dad wanted to cancel his carers. We said that if he didn't have carers then the alternative was that he would have to go in a home because we just couldn't cope.

He kept the carers and they were brilliant. Absolute unsung heroes.

I feel the same, but I think the selfishness is part of the cognitive decline, I don’t think it’s their fault at all. As I said above my Mum was probably the most caring and considerate person you could meet, but when she got older and her body and mind started to get frail she became increasingly selfish, a different person. She never wanted to be a burden on anyone, but in the end she couldn’t help it.

People choose to have children, by doing so they sign up for the selfish toddler phase and the stroppy teen phase. Nobody chooses to be born and by default to sign up for being a carer to elderly selfish parents. That's the difference.

To be honest I will resist having carers as long as possible although I will not ask my children to step in**

I think this is what my DM thinks, that she doesn't ask much of me. which to some degree is true, when things are going okay it's maybe a weekly visit, possibly a trip to a medical appointment. plus daily calls (which themselves can be energy sapping), but the issue is there are situations that she can't cope with that then becomes an emergency for me and it doesn't really matter what else I'm doing - just got home from chemo? – rush round - have an important funding bid to get in? Nope, you're not finishing that this afternoon. And it's the constant worry and guilt, if I can't get hold of her, is she lying on the floor injured, or has she just left her phone upstairs? She has a need for something basic doing and I could do it, but I want to go to the gym. And each time we have an A&E trip, often overnight, it takes me a couple of weeks to recover. And the constant guilt that she is on her own and has nobody except for me, and DD to some extent, to listen to her.

We were in the same situation with my DF, she was just about coping with him, although she wanted him to go into respite care, then she broke her hip and because there was no care set up (I had been begging them to do this for a long time because I could see it was going to become my crisis at some point,) for the two weeks it took to set up carers I was going into my DF three times a day, visiting my DM in hospital, and trying to run my business all around this. It was around this time that my consultant thought my cancer probably developed. I've noted on other threads there seems to be quite a large crossover between the elderly parents thread and the cancer thread.

It's interesting the thing about cognitive decline and only being able to see your viewpoint and not others, although I think neither of my parents ever really saw me for who I was they both wanted me to be completely different. All those unresolved childhood issues also play into what's going on now. My DM often complains about my DF"s behaviour towards her, but it doesn't seem to occur to her how damaging it might have been to two small children, but I don't think she's ever acknowledged that or her role in it. If you grew up in a dysfunctional household as a child who felt responsible for the emotions of your parents, then it's probably harder to cope with this later on as well because you've been conditioned into it.

I've always said to my DD that I am going to move into more suitable accommodation earlier, where it's self-contained and you only own flat or bungalow but you've got a warden on site,one of my DM's friends lives in one of these in town and she loves it. But who knows what I will actually do when the time comes?