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!

Sounds very familiar . We've just had this . She was admitted to hospital and lied to the staff there that she not having it anymore so that they would release her , which they did with 4x carers visits a day for 6 weeks .
Once home refused all help , as wanted the family to step up .
Now mostly housebound , hardly ever getting dressed and not keeping herself clean & tidy .
Meanwhile whilst she has ' capacity ' ss not doing anything as she hasn't yet had her officially dementia test and it's likely months away before she gets her appointment .

@roundaboutthehillsareshining this issue with equating not obeying her wishes = betrayal is exactly what I have with DF. But at this stage of life, it's often much more about needs than wishes and wants, as well as the capacity of loved ones to care, support, manage.

Darn it !

Girding my loins for this afternoon’s visit to the care home. Started reading an email from them about respiratory illnesses and restrictions on visits and got a bit excited. Sadly it’s only rookiedog that gets the free pass and he quite likes going because of all the attention he gets.

@GoldMoon @roundaboutthehillsareshining I can completely sympathise with you. One of the most unpleasant and difficult symptoms of DMs cognitive decline is her delusions/hallucinations, which usually involve her being totally convinced that 'they' are trying to get to her and will do her serious harm. Each time it happens, someone goes to 'rescue' her and she stays with family for a while. Currently she is with Brother and he is convinced that the delusions are 'just' anxiety so she will be fine with some medication and/or company. I know that Mum plays down/denies hallucinations etc that are not so frightening that she feels she needs 'rescuing' (eg. she'll sometimes call and tell me at the time but later claim she was 'joking' or that I misunderstood). We are awaiting the outcome of her formal assessment but she and B have done their best to down play these symptoms and make it appear that they never happen if she's got company so it's an anxiety issue and not a symptom of cognitive decline. I suspect that she does experience symptoms when she's with B but pretends not to.
Because DM's decline isn't the 'typical' (is there such a thing?) alzheimers journey of increasing memory problems, not knowing who people are etc, B refuses to believe that there is a real problem and won't even consider looking at proper paid care options (either for now, or to understand the options if/when things progress). They have told social services/GP etc that no help is needed as 'family will look after her'. I feel like we are currently in the calm before the storm, in that for now she seems OK on her own when B is at work and he/his DP seem reasonably happy to have her with them so there are no crises. But I know it's only a matter of time before either she starts to have frightening delusions in the day time and we will go back to daily calls to 'rescue' her, or B (or more likely, and understandably, his DP) decides he wants some space from her. I live several hours away, but when DM has had previous spates of calling to be 'saved' I have dropped everything to rush over as she is clearly terrified. Sometimes she believes she has fallen and needs medical attention. There is never so much as a bruise and she is someone who bruises incredibly easily so I am sure that this is confabulation but of course I never feel I can ignore this as it may be true. I don't know what I will do if/when this starts happening in the day time when B is not with her- I know he won't pick up the phone if he's at work and I don't like to think of her terrified but equally I don't feel I have the energy for another spate of cancelling work/not being their for my family/driving for hours every day.

Trundling on here in the madness. Visit to care home tonight included DM telling me that the man wearing a urine bag on his leg is wearing it because he’d been shot in the leg three times. They chased him all the way to the home shooting at him apparently. And that the letter on her NHS medical records, that I have access to through my own NHS app that says she had her hearing tested and needs hearing aids is ‘all lies’. She’s happy enough and I’m used to these mixed dementia ramblings but sometimes am hit with a stomach punch of grief and deep ache for the mother I’ve already lost. Knowing this could likely go on for another decade is a heavy feeling.

My stepfather doesn't like savoury things like sausages and burgers any more. Only sweet things. Taste and smell do change with some dementia.

There is a big link between diabetes, insulin resistance and dementia.

https://www.alzheimersresearchuk.org/dementia-information/dementia-risk/diabetes-and-dementia-risk/

When DAunt's dementia was progressing rapidly she was existing solely on vanilla ice cream and the occasional bit of milk chocolate until her swallowing became more impaired.

When I lost my smell for 9 months due to Covid and my taste for a while I could only really taste sour and sweet at first. As my smell returned my taste range increased. It was really strange not being able to taste the spice in curry sauces at all, they just tasted vaguely sour. It was hard to be interested in food when it tasted bland and smelt of nothing.

Hi, I’m hoping for some advice from you guys. Mum has dementia, she’s probably approaching moderate dementia. She has other health problems but is pretty mobile. She lives with Dad who has his own health problems (bad heart) and isn’t very mobile, he rarely leaves the house. Their relationship has completely broken down, they basically can’t stand one another. Mum is stubborn and has lost all common sense and he’s constantly trying to stop her doing dangerous or daft things, but he does it angrily, not kindly. I know he’s at the end of his tether. Recently he grabbed her arm to stop her doing something and bruised her. I know they need to be separated but how? Mum can’t shop/plan/cook/do any finances at all/deal with any mail/take or organise meds/or even use a Tv or phone without his help. I don’t know if she is at the care home stage yet. It seems social workers want to keep people at home even if they’re bed bound these days.

They own their home jointly but don’t have lots of savings. Dad has a small pension plus state pension and they manage ok financially but couldn’t afford to pay for care without selling the house, then where would Dad live?

Hello @Warmworm

My uncle became very abusive to my aunt when she got dementia. He was controlling and unkind and she started to be frightened of him. It was a dreadful situation and she had to be removed for her own safety. I think he'd always had this tendency towards her but once she got dementia it was magnified.
He seemed to believe that she was pretending not to know how to get dressed or washed etc. And everything she did annoyed him.

Your mother needs a safeguarding referral to social services. You're describing carer burnout, essentially (on your dad's part, I mean). Also, their relationship breakdown makes your mum vulnerable.

It sounds like she would be better off now in a care home. Your dad is entitled to stay in the house if she goes into a home, however.

But you do need a social services referral.

Thank you. I think I know this really.

I should also have said how he admits he’s at his wit’s end but has a huge distrust of any kind of “services”. Won’t even see the gp about what is clearly heart failure. Discharged himself from cardiac critical care after his heart attack. I’ve tried to persuade him to involve social services but he adamantly refuses.

I think I will ruin our relationship completely if I contact social services without his agreement. Also Mum will absolutely not want to go into a home so she’ll hate me as well. It’s awful.

@Warmworm that sounds a difficult situation. I agree with Broon on what the best solution sounds like but I understand your problem. Would your dad respond to a direct, blunt conversation about the situation? I think sometimes it’s far too easy to think there’s no way out and he may need to be told out loud that it’s ok if he can’t care for your mum any more, and that there are alternatives.

It’s very frustrating when they admit they can’t cope but won’t agree to any help or make any suggestions of their own on how to improve matters.

@Warmworm you haven't got a choice.
You need to protect your mother.
Believe me, I understand how difficult this is.
It blew my family apart when it happened to us.

But the patient with dementia cannot advocate for herself.

@Warmwormyour parents sound a lot like mine in the last year of my dad’s life - he had heart failure and also got mixed dementia (vascular and Alzheimer’s) himself in the last year or two. But the big difference to your parents is that my dad doted on my mum for 60 years although even he would sometimes get frustrated with her. Mum should probably have been in a care home but dad wouldn’t have allowed it and so they managed in a sheltered housing community looking out for them plus 4 carer visits a day and a lot of help from me to spread the increasing care needed of mum.

As soon as dad died mum needed the care home. So, what would happen to your mum if something happened to your dad tomorrow - let’s say a hospital admission? It sounds like she couldn’t cope so would need emergency care and your dad is currently struggling to cope with her at home now and needs more support. You need to find the way to get them on social services radar soon - use whatever works for your dad ie tell him it’s a way to be able to apply for attendance allowance, in case dad gets sick and someone is needed to look after your mum. once he starts engaging with them he might find them less ‘official and scary’ than he expects.

@funnelfan said “It’s very frustrating when they admit they can’t cope but won’t agree to any help or make any suggestions of their own on how to improve matters.”

This is so true, and one of the most difficult things I struggle with, with my MIL.
I try to approach issues in so many different ways, no support is accepted, then next day when we speak, she is asking me for help with the same issues. And so it goes on, no change. Which I would deal with , if I didn’t have to keep having the same conversations every single day, sometimes several times a phone call. And she has full capacity, cannot imagine how difficult it must be with cognitive decline.

You keep having the same conversations every day but you say she doesn’t have cognitive decline? Are you sure she doesn’t?

What sometimes / eventually worked with my dad was to position the help I thought they needed now as something they might need in the future so it seems less threatening and he could objectively agree it was a good idea for the future. Then I would bring the future closer and eventually say ‘shall we try it?’

So I would say things like ‘I know you feel you don’t need support to fill the weekly pill boxes for you and mum now but, at some point you might. When you reach that stage we can just ask the pharmacy to issue dosette boxes and then you won’t need to worry any more about making sure mum’s meds are put out right. Taking medications properly is really important which is why the service exists.’ Then next time I needed to order prescriptions I asked if he wanted to try the dosette boxes. The second time I asked he said yes.

I've also found that the 'here's something to think about as a possibility for some time in the future if you need it' approach is useful. My DM is very, very resistant to any change so I found this a really useful way of getting her to engage in a discussion about things that might make life easier without her just shutting down the discussion because she doesn't want change. For some smaller changes, I found that once she was willing to listen she quite quickly decided some of the ideas were probably good. I also always position any change as temporary- just something to 'try' to see how it works or to help whilst she's 'busy'. I sometimes combine the 2 ideas and suggest we try something (eg me ordering her shopping online to be delivered to her rather than a 3 hour round trip to take her to the supermarket) a few times 'just so we know how it works in case something happens and we can't do it the usual way in the future'.

I also wonder if there is some cognitive decline with your DM if you are having the same conversations repeatedly, particularly if it's in the same phone call. Looking back, I think my DM had been covering up her decline for quite a long time before she was willing to discuss seeking some help.

I appreciate the replies and I can see your points.
As an example, MIL is worried about her heating so she tracks it every day (when the radiators come on). Then she tells me about what happened that day and asks if she should call the gas company. She doesn’t want to because it will cost her £60 for a call out. I have told her to change thermostat, switch it off etc to see if it changes but she is scared to try in case she breaks it, and won’t let me try when I visit for same reason. But it worries her and she stirs it up every day by noting when the radiators go on and off. So every day she tells me what the radiators are doing and asks me what I think. And every time I repeat as above. But she will not spend the money.
It is not just me, she is constantly being assessed for medical support, and I keep being told I cannot yet make any decisions for her (like increasing carers etc) because she has full mental capacity.
I think she lives in her own head too much, and just needs constant reassurance but doesn’t trust me enough to hear it from me.
I have tried the, I know you don’t need this (eg fall alarm) right now but you might do in the future, and she just tells me not to be so negative.
TBH she has always been very similar in how she speaks since I’ve known her, (23 years) over repeating things to everyone, but now she only really has me and my daughters to talk to and she doesn’t want to worry them so just expresses her worries to me.

Can you pacify her with logic? “Yes they are coming on later/ less as it’s getting warmer now. You can forget about the heating now till Autumn.”

Or cost v benefit? “Mum it would only cost £60 for someone to come and look at it. Every day you worry about it and you could get reassurance for just £60. Isn’t that worth it for peace of mind?”

Honestly, if you feel confident, I would just secretly change the thermostat when she is in the loo and see if that fixes her worrying.

I have to say, getting bothered about the heating was one of mums symptoms of cognitive decline. She was no longer capable of understanding how thermostats work and was worried because the radiators were going off on warm days. I’d reassure her that everything was working as it should, but she kept coming back to it. Things going wrong in the house really really bothered her and caused terrible anxiety, so it was a double whammy.

Heating is one of mum's things as well. She phones British Gas because the boiler has gone off when the thermostat kicks in.

OMG I thought that it was unique to MIL!
She is sharp as a tack in lots of ways, and hasn’t mentioned it for a couple of days because I told her I could no longer have the discussion if she would neither do anything nor let me do anything. (I can’t change the thermostat because she is very clear at what it’s set at)
it’s so interesting that it’s something that indicated issues for others. I don’t suppose there is anything else I can do except continue to keep a watching eye as much as I can from the other end of the country!
How reassuring, in a grim kind of way, to know that every odd,quirky path has been trodden by others.

Heating is an issue here too. Its werid how its such a common thing to crop up. DM has exceptional complicated modern electrical heaters too, I hate them.

Oh god, heating/gas/electricity. Not sure it's cognitive decline as much as not understanding because it was always something Dad took care of. Mum has the timer set to be on from 7am to 11pm then turns it off with the thermostat if she goes out (just turns till she hears a click). She is usually out for a few hours a day. Needless to say her bills are huge (they had never switched supplier) so I decided to switch them for her, but it took me 6 weeks of explaining over and over how it was now possible to get both gas and electric from the same company (thanks Mrs Thatcher), that it wouldn't affect her BG servicing contract, that it could save a lot of money, for the change to be accepted. I would like to change the timer now the weather is warmer but not sure I can take the grief. As well as heating on all day every day she uses fan heaters to "top up" and goes around barefoot even in winter, they've always been a shoes off house and she thinks socks/slippers are a slipping/tripping hazard. Then she worries about money.

I remember heating woes. When mum was living alone after dad went into care, and had earlyish dementia, she had the flat boiling hot even when she was out. I asked on MN about any devices that would limit the thermostat settings so that her money wouldn't run out and got accused of abuse!

Mum has the thermostat set to 28/29°c. It's in the very small, well insulated living room where she also has an electric heater. She puts the electric heater on max then panics because the boiler has gone off (she checks it frequently during the day). She definitely used to understand and only puts the electric heater on because she likes the flame effect.
She also has 2 freezers, a large one and a smaller one which are constantly switched on even though only the big has anything in it and even that would fit easily in the small one. The smaller one was bought for dad to keep his fishing bait in. It's never been used for food. Dad died 4 years ago and had given up fishing several years earlier.
Mum can't understand why her fuel bills didn't have when dad died.