Cockroach cafe - Spring to Summer 2026

[FiniteSagacity]

New thread for us all to gather and have tea, cake and something from the stronger shelf as needed.

Keeping the cockroach name in honour of those who have graduated the thread in spite of the suggested thread names!

Am so glad I’ve found this.

Sure my story resembles may of yours; elderly parents, Alzheimer’s and vascular dementia, one parent on the verge of a total breakdown due to the pressures of looking after a man who was already VERY difficult, falls, random infections and hospital stays, trying to manage their house move close to us with one parent lacking capacity (I do have PoA along with my DM) and the other the result of a 50 something abusive (coercive) marriage and unable to make a decision/take action herself.

No sibling to help as my brother suffers from psychosis and depression and in and out of hospital himself. Am also keeping his plates spinning (although have had to take a step back and rely a lot more on his metal health team as I can only do so much).

What with that, a teen with adhd and a DH with MH problems himself (attempted to kill himself 2 years ago, a lot better now but still very much keeping a close eye on him) and the effects of perimenopause I am close to breaking.

@inigomontoyahwillcox oh my goodness, that all sounds incredibly difficult.
Welcome to the thread.

@Raven08 well done on the job!

Hi everyone, been a while since I posted but always reading to remind me that I am not alone.

DG now 97 has been pulling the cord for ambulances as she feels unwell, this has started since another resident told her there were no staff there overnight, there never has been, but this seems to have put the absolute fear into her.

As always it started with stomach pains, I urged her to put a urine sample in, she never did. Then it was I'm not doing the toilet enough, I gently explained you only get out what goes in and she hardly eats, a few weeks go by of us begging her to eat better (not more as we appreciate she has little appetite), she then tells Dad she has been to the chemist and go laxatives, we both jumped into the cars and headed straight there, it wasn't thankfully, just lactulose.

Seen by a nurse, had an ecg and chest xray, all clear, started with back pain, seen by a nurse, they believe it's muscular, pain killers.

Walks to town to buy potatoes, shoulder is sore, and she is wincing, got her to the doc, she's convinced it's her lungs because it hurts when she breathes, explain it could be ribs / spine, xrays last week and it's mild osteo and a wedge fracture, no it's my lungs.

Anyway, these legs I need to see about them they are quite swollen, they are no different to how they were 10 years ago when you seen the doctor, but clearly needs to have her next ailment lined up.

We're doing her shopping, she's so annoyed she doesn't get to go but isn't fit just now, I don't know how we can get her to accept she is getting older and she can't do what she always has.

Thank you - helps to write it all down!

Oh, and the full time job - forgot about that! Which I’m constantly distracted or interrupted by calls from various health or social care professionals; dad is currently in hospital (gallbladder keeps getting infected) - medically fit to come home but am arguing with them about who is going to move his bed downstairs after they said their minor works team would do it. I’m a 10 hour round trip away from them (hence the planned move) and mum and I couldn’t do it anyway (DH can’t take time off work at the moment).

Does anyone here find the emotional support element really hard? I regularly have calls from my mum (or face to face when I drive up) who is very angry with her lot, or struggling with depression to the point that sometimes she declares to me that she’s gonna throw herself off a cliff or jump in front of a lorry (she’s been prescribed antidepressants but always finds a reason not to take them). We’ve been connected with the Admiral nurses and our assigned nurse Is a superstar, but Mum only ever opens up to me about her true feelings, saying that “she wants looking after and I’m the only person that can do that”. So when we’re with the professionals, she just clams up and isn’t upfront about how much she’s struggling, which makes it really hard to advocate for her.

Popped back in to thank you all for the sympathies over our Dad - and importantly for the sharing of useful information over time that meant I have been better able to deal with the practical stuff (especially booking the last convenient register office appointment available, the minute I heard I could book). Truly, thank you all 💐

Welcome to those new or returning to the cafe - there is no judgement here. I might be here less often for a while, but both DH and I still have other elderly relatives we monitor from a distance. I have a cousin who is NC with very unwell parents and this cafe and MN generally has helped me understand that cousin may be entirely justified. Boundaries matter.

Welcome newcomers! My load has recently become lighter after DPs moved into a care home very close to me a couple of weeks ago. Honestly I feel like I am finally getting my life back and in fact my relationship with my DPs as an adult DD rather than admin, maintenance and shopping gopher.

I am slightly annoyed by foreign cousin calling the task of clearing out their house “an overwhelming task, that will feel like a second job for a while” after I sent some nice photos I had found. Thankfully copilot drafted the polite version of no it’s a lot easier than driving an hour each way, not knowing what I will find when I get there with both DPs having a form of dementia , running two households including paying bills, organising cleaners, gardeners, home hairdresser, organising food shops and trying to clear fridge of mouldy food and taking them to all medical appointments and increasingly getting muddled phone calls day and night from DM who is practically incomprehensible now, so spoiling any nights out and trips away.Oh and not being entirely sure if they are eating properly, washing themselves or clothes at all ( care home has confirmed that no is the likely answer to all 3).

I mean after all that, working through some paperwork and old photos is a breeze, as I don’t particularly want to go inside the house again we used a house clearance company for the rest of it. But I know she meant well and unless you’ve actually been through it you can’t imagine how it is.

A quick question please? Has anyone any experience of applying for CHC please? I dont know if DM would be eligible. Reading through the checklist I think DM scores at top level on a number of counts.

I suggested it before to DB but just got batted away with some waffle about incontinence pads.

Is this something we need to apply for via GP or something I need to kick off?

We aren’t at that stage yet but from my limited research it sounds as if it’s very much a postcode lottery as to whether you get it or not. It also sounds as if most are turned down at first and you have to battle. There was an article the other week about it.

https://www.dailymail.co.uk/money/article-15374535/How-YOU-loved-ones-care-fees-paid-NHS-without-selling-home-Lorraine-got-200-000-living-nightmare-experts-reveal-exact-form-words-use.html

put it into archive.ph to read it

The care home applied for it for DM when she was discharged from hospital and moved to palliative care and got it. They told me after it was done, which was surprising, but welcome. I think once you're on a palliative pathway you should be eligible. Having said that, it covers less than 2/3 of the fees - CH gets around the fact that it is supposed to completely cover care by saying that the remainder is for 'hospitality' rather than care 🤔 Also, it will be reviewed after 12 weeks and can be revoked. My cousin told me that happened with her mum.

The discharge team applied for it for my DF. There is info online about checklist which is the first part of it, if you reach a certain score threshold you go forward to the full assessment. DF scraped through the checklist stage (scored the exact minimum you need to progress). I was involved as was the discharge home he was in by then. I did my research beforehand and did feel it was a fair assessment to be honest, Dad scored the max on a couple of things but nothing on several and the lowest on others. So he didn't get through the full assessment. I also attended this with his care home staff and pushed hard where I felt it was justified and they did take my views seriously but again it was a case of only having high scores in a couple of categories which wasn't enough. He does get funded nursing care and the top rate of attendance allowance though which makes a dent in the nursing home fees, I think about £400 a week off them.

@inigomontoyahwillcox the emotional bit? Aargh God yes. Actual practical stuff (examples cut for length!) yeah fine whatever, what goes around, comes around and so on.

The emotional stuff has got better but it's still a problem that bubbles under.

You said the result of a 50 something abusive (coercive) marriage and unable to make a decision/take action herself
And that soo rang a bell! The marriage wasn't abusive in this case but they both, through no faults of their own, came from unhappy families and didn't learn how to manage emotions and focus on what matters. Couldn't learn from each other, see :/

Her leg ulcer news is relatively good today. Perhaps stuffing protein down her with the aid of incessant nagging from afar is helping ? Fingers crossed eh.

I am drafting another week's meal plan in case it's needed.
It's an interesting exercise, as stuff has to come from Waitrose (where the online shop is done), not involve stuff which goes manky in the fridge in two minutes, and crucially, be very simple to put together.
Roughly the older the carer, the more capable and game they are. Youngsters tho...

I am not judging here, I was exceptionally gormless and lacking in common sense as a teenager!

But again, my ER grumbles but doesn't take any initiative, like zimmering into the kitchen (which she absolutely can) and bossing them around a bit talking them through what to do. She's meant to take more exercise anyway so it would be win-win...

@Raven08 well done on the job.

@GnomeDePlume I got laughed at by the ward staff when I suggested DGM apply for CHC, but if DM is palliative it's worth applying for Fast Track. Age UK may be able to advise?

@inigomontoyahwillcox the emotional support element is hard. Despite having trained as a psychologist, I hate emotionally supporting family and I don't want emotional support from them either. Parentified child trauma I guess! It's hard because they often do just want us there and looking after them, but we can't give up our own lives, neglect our own families, etc. I was the main focal point of my DM's life as she was a single parent from when I was 6, but I do think she is struggling with knowing that as she ages she won't be the main focus of mine and she has to share me with DH, DC and the demands from DF's side of the family.

Anyway, that was a long winded way of saying yes, I get it, being the emotional support as well as everything else is bloody tough.

I'm in bed with an IBD flare up at the moment and have been off work. The last few weeks have caught up I guess. Seen the GP and he's given me some prednisone. Hopefully it'll calm down in a few days.

Yep mum definitely doesn't know what day it is. Or even what time of year. Took her to Tesco yesterday evening and got the comment "it's getting dark already. Nights are really starting to draw in now".

Thanks @MysterOfwomanYand @CrazyGoatLady- wasn’t prepared for the job of “parenting” my parents. I so get her anger and frustration, it’s very annoying it’s come at a time where there’s no longer any recourse to hold my father responsible for his actions over the years now he has dementia - I mean, what’s the point!

Thanks all for the information on CHC. I went through the check list and about the only thing DM is able to do for herself is breath.

This all started because the nurse at the CH said that DB needed to sort pads for DM as she had been using ones from the 'common stock' and it was now her turn to provide some. Sounded like BS to me.

But then again I have noticed that carers take a communal approach to things like body wash. DM gets through it like she's drinking it. Apparently carers will 'borrow' from another resident if one doesnt have toiletries.

My mum had a CHC assessment last week. This was an automatic consequence of her having her needs reassessed by social services because her previous residential care home said her needs had increased and she needed to move to a nursing home. She moved to the nursing home about six weeks ago.

We - myself, a nurse from her new nursing home, her social worker and the CHC lady who met mum before the meeting - used the decision support tool and everyone provided feedback. Mum was graded as needing the highest level of support there is for Cognition and Communication and the second highest level there is for mobility. But as she has no primary illnesses, no challenging behaviours and can still feed herself she doesn’t rate highly enough to get CHC funding.

I agree she has no primary illnesses so wasn’t surprised by the outcome but the cynic in me does not think self funders get a fair crack at the whip when social services aka council employed staff are part of the decision making process. I think where there are two elderly people with very similar needs one of whom is self funding and one of whom has no savings and is currently being paid for by the council, the person with no funds of their own is likely to be prioritised for NHS funded CHC as it saves the council from having to fund that person’s care. We know that councils are seeing their social care bills grow and I think social services will do whatever they can to try to keep their costs within the budget given by the council. One obvious way of doing this is for council staff to grade self funders slightly lower on their needs and council funded people slightly higher to give the people the council are funding a disproportionate share of the CHC funding. It’s similar to how the council only pays £800 a week for the care home places they use for people without savings but as a self funder you have to pay £1,500 plus. Self funders subsidise the council funded places.

It already feels unfair that dementia itself is not a primary illness. Add to that the way the council as a bulk buyer of care home places negotiates / demands a lower price than self funders pay and the niggling feeling that the council prioritises the elderly people it pays for to receive CHC funding and I feel like the system is a bit rigged against self funding families. I have only been on this dementia care home journey with one relative but social services are experts in how to make the care industry work best for their employer.

@Chouxthis is similar to my experience of applying for CHC for my mum (refused). I did agree with the assessment in the end but interesting your points about council wishing to save money, I hadn't thought of that. I remember the assessment highlighting that my mums needs could be fulfilled by a carer or skilled family member, and medical care was generally not needed, which is true. (A GP comes in when needed, and there are nurses on the staff who I think supervise medication).

For me, DM was discharged to the care home from hospital, and in the following days, the CH manager said to me 'you know your mum's got CHC funding, don't you?' I didn't even know what it was! She is a self funder, but i can well see that the council may find ways to prioritise council funded people.

Separately the CH are now asking me to top up mum's cash funds, without any more information about what for. Is that normal?

@Choux similar here, DF scored highest on mobility (he is hoist transferred, cannot bear weight on his legs at all), some score on skin (he has very fragile skin / eczema and needs active management to prevent ulceration), food allergies but controlled by diet, but he is compos mentis, compliant, healthy weight, can just about feed himself and is medically stable (takes oral meds for BP etc like many his age) he doesn't score much in most of the categories. If he deteriorates I would request another assessment.

Do you mean her spending money which they use for podiatry, hairdressing, any toiletries they source etc? I never see how that is spent but they don’t ask for £100 too frequently so I just pay it.

or do you mean a third party top up to the CHC funds the care home is now getting for your mum?

Back from regular visit to MIL (800 mile round trip, made gentler by direct flights). District Nurse came while I was there and definitely delivered some tough love. MiL seemed to take it on board, not changing anything mind, but did say she was right! Also told DN 'Scrab takes good care of me'. Didn't look at me at all, but said it in my presence, which was affirming as she can be quite negative.
Have moved no further in increasing carer time, getting rails or a fall alarm just think positive, Scrab, I won't fall) or having fire safety check, but...take the small
wins!

I know this is minor compared to what a lot of you are dealing with, but dealing with my mum's finances when she can't fully do it herself but won't stop trying is Doing My Head In. She agreed for me to take over with LPA (I had to anyway for Dad as he was going into the carehome) but every time I do anything to try and save her money or make life easier (which she says she wants, she is worried about how much Dad's CH is costing) I am quizzed endlessly by text, then a letter will come to her house and she will read it out to me and I deal with it but she puts it back in the pile and then finds it two weeks later, forgets it has been dealt with and the panicky texts start up again. Literally all I have done is make Dad a separate current account (they only had joint before) to protect her money from his care fees, all savings are separate, and switch her gas and electric (they had never switched and this should save her a substantial amount) but the grief I am getting for weeks now. She has a good pension herself and even with Dad's going on his fees she has more than enough for her own needs and I get that it's worrying but aaargh.

@ElderlyDilemmas oh I hear ya.

A not completely dissimilar situation was why things weren't so harmonious on the last visit.

I tend to go down fortnightly (I know, I have it easy) and go through paperwork then. Paper is good because I can write the outcome on the paper in big clear writing and file it out of the way.
Emails you can't do that quite.

Leg leaking again tho :( :(

So mil has had a cognitive assesment by a nurse visiting at home ( it was very low ) and then a Dr in surgery ( still low ) and has been referred to the memory clinic for formal testing but if course it will take months for an appointment .
In the meantime she is lying about her self care . It's obvious she is not keeping herself clean or at the very least maybe a wash but no bathing or showering , hair washing , nail cutting etc but will say she is doing all of those but she clearly is not .
House is still acceptable in cleanliness .
Until she gets her appointment at the hospital , do we just let her slide into lack of self care or is there anything more official that can be done .
She refuses any help and will lie about things as mentioned above .