Cockroach cafe - Spring to Summer 2026

So she’s willing to cut her nose off to spite her face? she could be enjoying herself there but is being miserable to guilt trip your DH.

Do you think she will be any less miserable home alone in between carer visits? No she will still be waiting for your DH to visit and if she’s home you will also have all the stress of organising her carers, shopping, bills etc.

Someone wrote on this thread just yesterday that what elderly people want isn’t really to go home. It’s to go home AND BE WELL AGAIN. Which is an impossible ask so they will be unhappy wherever they are. She is safest and has best social options where she is in the care home.

We are back from our holiday and straight into MIL guilt tripping DH. She's just sitting around waiting for him to visit and not engaging in anything in the care home. DH is now contemplating whether she should come out and go back to her flat with more care in place as she is seemingly getting no benefit from the care home. The idea absolutely horrifies me to be honest.

@bigdogpaws and that younger relative should not be castigated, accused of being selfish, for not breaking their own back to facilitate the elderly person's decisions.

I often find myself wondering what DM would want if she could see herself now. Doubly incontinent, sleeping 95% of the time, unable to feed herself, not knowing what is going on.

And the answer is I dont know.

DM always suffered terribly with FOMO. She would stay until the lights went on at the end of a party, long outstaying her welcome. Helping to clear up when that help wasnt wanted. Some of it was a need to be useful, to be seen as helpful, to sing for her supper.

Poor mum, she got it wrong so often. She would be overhelpful, some people would take advantage. Then she would fall out with them for not appreciating her enough. It was a repeated theme.

Is her still keeping going now FOMO?

My DM frequently reminds me that no one can force her to do anything she doesn't want to and all decisions are hers to make. Which of course is true whilst she has capacity. What's difficult to get our elderly relatives to understand is that we also have the right to make our own decisions and not be forced to do things we don't want to. Unfortunately too often there's an expectation that a younger relative will forgo what they want to do in order to facilitate their elderly relative's choices. It's a tough one.

@BestIsWest sorry wrong B, @bigdogpaws that was for you. Whoops

@SweetChilliGirl she is of sound mind, you say. So if she truly thinks it's the best thing for her to go home nobody can stop her.
I suspect it's "just talk", like when we say, "I want to kill so and so". It's a way of expressing her (quite understandable) disgruntlement at her current situation.

If she gets a care company to assess her needs and arranges a contract, sorts out a taxi home, rings the GP surgery and books DN appointments to change the catheter, maybe she really meant it.

Otherwise, either she didn't mean it that much, or she would struggle once home.

You can sympathise with her without saying you think it's in any way a good idea!
Even if she did get herself home, IME what care in your own home looks like has its downsides. I would not blame you if you reminded her of them...

Live in carer - what if you don't get on? House share with (initially) a stranger.
Carers coming in? Timings are off, rotas wonky, why is Michael doing a breakfast or bedtime slot when I only want personal care from women?
Endless microwave meals. Sweet but gormless youngsters who can literally not even boil an egg. Food in fridge not being thrown out in a timely manner. And at night, you're on your own. And you have to do online shopping, sort a cleaner to come in, fix the house.

Care homes ain't perfect but you get cooked meals and get to see people who aren't your carers, and usually they have regular GP visits so you can get seen rather than phoned.

As you may realise I have considerable sympathy with your situation ♥️

Good advice. Thank you.

@SweetChilliGirl, you can't make her stay but if you don't help her and refuse to engage with any attempt to suck you in and make it your problem then in all likelihood it will be complex beyond her ability to get herself home. She will probably give your details out as someone to contact, you can just say that you don't believe it's in her best interests to go back home and therefore you will not be doing anything to enable that.

Thank you all - you are all talking absolute sense. The problem is though, now she has capacity again (she didn't for a while) I can't make her stay somewhere she doesn't want to be

@Sortingmyself- that’s the frustration isn’t it, you do so much and the one time you put yourself first it feels likely it’s all forgotten. It’s like having toddlers except they grow up and generally become self sufficient.

@SweetChilliGirl I can only echo what everyone else is saying. Managing carers for elderly people in their own home is basically running two households and being the first point of contact and escalation for the carers, plus every fall etc. becomes an emergency with nobody on the ground to take control NB that would be you that would have to do it. DF had a few episodes of delirium along with more slow developing dementia and DH and I think a lot of it was because he wasn’t eating and drinking properly as he wouldn’t let the carers do their job.

What do you think of the care home? If you think it’s ok and there’s no genuine cause for complaint, I would keep her there for now. If her physical state is due to improve, then perhaps you could review again if that happens.

Also my understanding though CH were able to access some funding for incontinence pads.

Thanks @Choux. That was my understanding too - that govt are tight as a duck's ass when it comes to granting this - but I input her details into an AI program and she was scored quite highly, and it said that such cases can be successful on appeal. Are you going to?

My 93 year old mum got turned down a few weeks ago mainly as she has no ‘primary illness’. Dementia is not a primary illness. My mum was graded as having the highest needs possible on cognition and communication, the second highest on mobility, she is doubly incontinent, 5 st 10, has had two falls in the last month but still feeds herself. She doesn’t qualify.

You should get the assessment but don’t get your hopes up.

Just called in to see DM to make her lunch. and apparently DB is not speaking to me because I criticised him on the phone (I did not despite him beingcrap at providing support. I did raise my voice to him in frustration at him expecting me to do everything). It is all my fault according to her. I feel absolutely shit after all I’ve done, it’s nice to be appreciated.

Hi. Don't really post on this thread much, but has anyone on here any experience of applying for/being granted/turned down for CHC in a nursing home where the dementia is becoming advanced? I mean things like two-person assistance to get to bed, shower, get dressed, double incontinence, risk of falls and limited mobility, deafness and failure to communicate (though still speaking a little), no interest in food and needs prompting to eat anything, almost complete memory loss, extreme frailty, very low body weight. (5 stone at this point.) Is it a complete waste of time - do applicants need to be bedbound. spoonfed etc?

She is bedbound and has a catheter but says she wants to go home.

@SweetChilliGirl this came up in my very first chat with a social worker who came to assess mum. She said that vulnerable elderly people who say they want to go home really mean they want their life to go back to how it was before they became infirm. They are often not capable of seeing that if they returned to their house they wouldn’t suddenly be sprightly and active again. They would be on their own with 4x daily care visits and have all the usual stresses about house cleaning and maintenance, shopping, gardening, bills etc. Which would then become your stresses instead to manage from a distance of 150 miles.

She is currently safe and has access to 24hour care. It’s a much less bad option than being at home, where she’d still be miserable and resentful that she’s old and ill and in pain. If she’s no longer in need of nursing care then maybe a different care home would suit her better? Maybe if she felt she had a choice in which one she’d be less resentful?

@SweetChilliGirl to add another voice of bitter experience.

My DM 'wanted to go home' earlier in her care home career. What I gradually came to realise was that the home she wanted was an idealised version of her childhood home. If she had somehow been taken back to her bungalow she would have been horrified.

@SweetChilliGirl Unless you have other friends/family living closer to your aunt who have agreed to give you a lot of help I think your aunt being home will involve far more for you that you would expect. That's not intended to be any way unpleasant to you, just from experience of underestimating the needs of an elderly relative. As the BroonOneAndTheWhiteOne says, if she's bed-bound and unhappy in the care home I suspect she would not be happy in her own home with just visiting carers and would call on you a lot. Even 'just' organising carers etc is a very time consuming job and (assuming she can't pay for live-in carers) they will only call at set times so she will call you when she wants anything outside those times and it's very difficult not to feel compelled to go and deal with it (or at least drop everything to find someone who can).

Are you kidding?

Your time would no longer be yours if she came home.

You'd get phone calls all day, every day, all night sometimes.

You'd have to deal with all the queries generated by these calls.

I recommend that you do not get sucked into the shitshow which would inevitably result if your aunt came home.

@Sortingmyself look how a stranger reads your email. You feel guilty even if you have done so much and you say you know nothing is enough. Need to look after yourself.

I think support to some extent would be manageable if it showed to make the difference but cannot see it. It almost feels like they are bitter of bring old and less able to do things and despise me for being younger.

Beware the phone calls and admin. Carers need paying, instructing, they phone up about things like there's a light bulb needs changing. What about cleaning, house maintenance, gardening, food shopping? Before you know it you could be managing a team of people who call you about every little decision.

It wouldn't involve much of my time on a day to day basis as I live 150 miles away 😬
She would have to buy in some care visits I suppose, to deal with the catheter etc .

The cruelty of dementia is the regression into childish behaviour: selfishness, temper etc without the promise that they will grow out if it.

@SweetChilliGirl she is safe and cared for 24/7. How would coming home look? I bet it would involve a lot of your time and effort and she'd still be unhappy because she is bed bound with catheter.