Cockroach cafe - Spring to Summer 2026

@GnomeDePlume’s post reminds me of a phase early in mum’s dementia journey where she would often say cafe and restaurant food was too salty and make me send it back for her. Or she would just refuse to eat it and wait for her dessert.

I used to taste it - often it was soup that was just well seasoned and flavoursome with herbs and a usual amount of salt and pepper ie it wasn’t the food that was the problem, it was her tastebuds.

She's still on a 'normal' diet @GnomeDePlume but perhaps that will need to change. She just picks at food. What a miserable condition it is, every pleasure gone.

My mum's sense of smell has gone completely. There can be something so rotten in the fridge that you gag as soon as you open it and she can't detect it at all.

@AInightingale

Struggling with swallowing does seem to come with dementia. Some of it is physical: the reflex action not working as well. Some of it is coordination/memory, chewing something then forgetting to swallow it.

Is your DM on a soft food diet?

Something I have also seen is that DM's tastes have changed. I would say that most of what she eats are sweet things: jelly, icecream, sponge. Easy to swallow and also sweet.

One of the things which I think has gone or doesnt work so well for my DM is her sense of smell. I think this leaves savoury food tasting salty/sour/bitter. Only sweet things taste nice.

Hi, I went to see my mum yesterday in her care home. She was eating a chocolate button from the ignored Easter egg I finally opened (with the heat in there it was very, very soft) but seemed to be in pain swallowing even it, putting her hand on her upper right chest. She doesn't really verbalise feelings or sensations now. This is a new thing, does this come with advancing dementia? She eats bugger all as it is.

My parents are separated and divorced a long time. I met my father's partner in the local village last week and he's not well in hospital. He is receiving treatment. I don't know what his condition is like to be honest. I am unwell with a headcold and don't want to visit him and pass it on. Not only that but my work is demanding and intense and I just don't have the time.

My mother is not right with her talking any more. She will never require about me. Every day when I am at home my mother asks me
'did you hear from X?'. (My fathers partner). The only thing my mother is hinting at with her question is
'did you hear from x.....does she have bad news....is the man dead.....is there a funeral to go to'

There was another morning when the first thing out of my mother's mouth was - 'did you hear from her....any bad news?'

I am just disgusted and sick to my stomach with the way she is talking. How she is not able to swing anything positive. How she's not able to think it ask - 'i wonder if he's home from the hospital....I wonder if he's better'.

Is that type of talk normal from aging parents?

@trainedopossum that sounds like a lot, particularly from such a distance. Is there anyone in the US that can help with any of it ? I particularly recognise the feeling of having a thousand and one things to do and DM wasting hours of time with inconsequential nonsense, but unfortunately her way of reaching out and communicating.
I also did the skulking- I had found a nice little park nearby with free parking for 15 minutes. I would bring my pack lunch and decompress there after each visit, although an hour rather than an ocean away. The intensity of your visits must be hard.
DH used to walk rookiedog up the hill near them after he had been, but he would deliberately move the car away even though it was very close, so they couldn’t catch him when he came back for more chores.

As I type I’m hiding out in mum’s car on an errand. I’ve come out in a rash from the stress

@trainedopossum Oh my, I recognise the "hiding in the car" trope.
I used to do that. I'd go out, sit in the car, have a couple of fags, eat a large bar of chocolate, then reset and go back into the house.

From the car, I could see if my elderly relative had decided to escape through the side door. She didn't usually........... but I was able to intercept her if she did (generally wearing a nightdress with her fur coat on top, and carrying an overnight bag).

I never got a rash from the stress but I gained a lot of weight and had plenty of asthma attacks, which the fags didn't help.

I've given up smoking now, thankfully.

Hello 👋 hope it’s okay to join. I’ve dipped in here before and I appreciate the supportive atmosphere.

We’re in okay shape compared to what a lot of you are up against but it is still so stressful! As I type I’m hiding out in mum’s car on an errand. I’ve come out in a rash from the stress.

My mum is 85 and lives on her own in a rather isolated resort town in the US which is very quiet in the winter. They had a lot of bad weather this year and she surprised everyone by deciding to move to a retirement community (independent living with the option to access more support when necessary).

I’ve been spending a lot of time here as she has become so isolated. If I’m not here for high days and holy days she will say she’s making plans but I find she’s just sitting at home on her own. She has given up all her clubs and activities and can’t really plan anything. She won’t (but truly can’t) plan her shopping or cook a meal. She’s very very sociable and chatty and has family and friends but she really only wants me. We’ve always been close but it’s also a difficult relationship.

She is a sweet lady and everyone loves her but I also get the demanding and manipulative side. DH and I call it The (Mum’s name) Show.

This move has come on very suddenly and I’m madly packing, cleaning, making appointments to get her house on the market and preparing to go back home to London soon. It’s too many strands for me to make sense of.

I feel like I have little to complain about, it’s going as well as can be expected. I am finding it very emotional helping her sort through her stuff and I’m not up to all her weird diversions mid-stream, like if I’m trying to do something complicated and she wants to tell me a long story, like how instead of using the estate agent she’s been dealing with for a year she thinks she’ll tell her neighbours that she’s selling and probably one of their friends will want to buy her house privately 🫠 I’m also wondering if at any point she’ll decide she has changed her mind and is staying put. She has form for this kind of thing.

Anyway thanks for this place to share (and vent) and good luck and 💐💐💐💐💐💐💐 to you all. If you have read this to the end bless you and thank you ☺️

Thank you everyone😊

@rookiemere it's taken a lot of detailed instructions to get it all working and I sometimes have to check/prompt/remind especially if there's new ones. And the agency we use is also not cheap. But by and large, they are good, and as grudgingly as DGM will admit it, they are the reason she's able to remain at home.

If DF wants to reverse everything when he's well again, that's up to him. But if he does, he's on his own with the consequences!

Another toot for @CrazyGoatLady , well done

You're doing really well @CrazyGoatLady and standing your ground.
I hope your DF doesn't rescind all the arrangements you've put in place when he recovers enough to deal with his mother.

Well done @CrazyGoatLady. I’ve had a similar battle over carers with DM but they are a lifesaver.

I should also say sorry to hear about your DF and his DW. You’re absolutely right to prioritise your efforts to make life as simple as it can be for everyone.

@CrazyGoatLady well done you ! That’s amazing progress.

I can’t believe how proactive you have managed to make the carers become. That’s my one slight bug bear with the care home, because DM is hard to understand ( and they don’t seem to make much effort and she saves it all up for me because she knows I can decipher her instructions ) I still seem to be required to navigate and direct things, but it’s still a huge improvement on how it was before.

Hi cafe buddies. Haven't been about for a while but checking back in. I hope we're all surviving.

DF has been having urgent cancer treatment and his wife also hasn't been well. I have effectively taken on managing most aspects of DGM's life, but with the net result that things run a lot smoother these days. She's now been home for 7 weeks, has home carers 3x per day, monthly district nurse, heart failure team visit and GP visit. Carers now manage all her meds, so no more forgotten doses, missed repeat prescriptions or DGM being unable to do her eye drops or skin creams. I've gone from having to visit every week or fortnight and run myself ragged sorting loads of stuff out to going once every 3-4 weeks with the odd extra if I need to take her for outpatient appointments. Carers book her hair, nails, podiatrist, etc and write her shopping lists for me to do online.

The snag? DGM hates it and complains about EVERYTHING. The care is too expensive. Too many visits and she "gets no peace". She says the carers "snoop" on her (in reality they log everything on an app which family can view and she gave permission for, so we can see if she refuses medications or tries to cancel visits because "family are coming at the weekend"!) I don't give into her doing manipulative things like cancelling care visits to force me into going there and running round after her and I just say no and weather the rage. I feel bad saying it but it's so much easier to manage without DF involved, because although they'd argue dreadfully, he'd always give in. But now, he knows if he interferes, I'll hand it all right back over to him in a heartbeat and he can't manage it, so he has no choice. DGM also has no choice, because it's either the current setup or residential care, which she says would be the only thing worse than what she has aside from hospital. So she has to accept it.

I just say she can be as mean to me as she likes, as long as she doesn't mess with a system that's working to keep her safe, clean, fed and out of hospital. It's no longer just about her any more, I've a parent who is sicker than she is at the moment, a department full of anxious staff going through a consultation period at work, and a ND teenage DS about to sit exams, so she can wheesht!

Sending you all good wishes and magical boundary dust!

Thanks @Seeingadistance We did hear from SIL today that she is conscious and complaining bitterly about being in hospital. She had a cut on her scalp and they had to shave part of her head to stitch it which she is pissed off about as she was always very proud of her hair. Otherwise no injuries which is good news.

I hope you've heard how your MIL is now. It must be such a worry with her being so far away.

The loss of cognitive ability is sad. No matter the 'quality' of the relationship the grieving for the person starts when they are still alive.

I felt this when my DF died. He was ill (cancer) for the last months of his life. The illness changed his personality hugely. I lost a lot of my relationship with him during that time and I grieved that. By the time he died I was glad it was over.

Thanks @GnomeDePlume she has been having a load of blood tests recently. LPAs were set up several years ago (I have had to use the H&W one it when she was delirious on morphine following a broken leg and do a lot of her finances already). I've never had an easy relationship with her but still sad to see this happening.

@ElderlyDilemmas IME the diagnosis of dementia is really a process of elimination so blood tests to check there arent other things going on which can have similar symptoms: infection, heart etc. After that there is an interview process.

Do you have LPAs in place? If not, do them now. I have had two situations now where I have had to decline treatment on DM's behalf. The health LPA makes this possible. Otherwise DM would have been dragged from her comfortable CH bed for treatments which will not improve the quality of her life.

DM's diagnosis was also linked to her capacity assessment which means the health LPA comes into use.

My DM's dementia/health progression from independent living to bedbound, double incontinence, 95% asleep, no longer knowing family has taken about 15 months.

Hi everyone, I haven't posted for a while. Thanks for the support last time I posted - and here is what has happened since.

So my stepfather (he and my mum live with me) had been becoming more and more frail, and was becoming very erratic with driving. His moods, memory and behaviour were becoming very difficult to manage, and in the end, my Mum and I spoke to his GP and managed to get him to go along. He was referred to Memory Clinic and from there to Old Age Psychiatry. He was diagnosed with Lewy Body Dementia and started on Memantine, which helped with his moods and evened out his temper/verbal aggression.

Whilst all this was going on, he was scammed by bitcoin scammers and lost something in the region of £4700. He was utterly fixed that it was a genuine deal, even when I showed him that the address was for a Claire's Accessories in Geneva on Google maps. I managed to shut that one down, block all the scammers, changed his email abd closed the bitcoin account. We now have LPOA which should stop this happening again.

Since then, the physical symptoms of Lewy Body have ramped up. We saw the GP 2 weeks ago and got a referral to community physio/OT, as he's had 6 falls since New Year's day (including one requiring a trauma scan in hospital but he was unharmed apart from skin tears). He's seeing the frailty team next week.

The Age UK falls monitor team are bringing out a fall/GPS/pacemaker safe/waterproof fall alarm pendent next month so we are getting one. My mum is now allowed to apply for free respite and 4 hours of sitting service a week.

When I took him to hospital after his last fall, he was wheeled out of x-ray and I had a moment where I did not recognise him. He is suddenly so, so old.

Anyway, nothing really that I can gain from this post other than knowing that other people are out there, doing similar things, having similar experiences and maybe some of the things we have done will help someone else work out what they need to do. It is very strange being in the sandwich generation - none of my peers have a parent with dementia.

Thanks Again,

Lynn

I am getting more and more worried about DM's short term memory. You tell
her something, she's forgotten a day or so later when it's mentioned again, then forgets again. Every time I speak to her on the phone she texts me a bit later to tell me the same thing as if we haven't spoken. She is struggling with anything new (medication etc), when we look at her online GP record ypu can see she has had discussions with the GP but she can barely remember she's been. On Tues she told me she was meeting the social prescriber yesterday. When she rang I asked how that had gone and she said "she was nice but I can't remember whether I saw her or spoke on the phone". Her last GP visit ended with a note that she is clearly confused and forgetful. But she had a memory clinic appointment in Sept and only scored mild cognitive decline, had another memory test at the GP last month and scored 27/30. How do they actually diagnose dementia? Would she need a brain scan for Alzheimers? Would a diagnosis change anything? She's managing at home with admin support and occasional odd jobs from us at the moment.