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!

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

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.

Another toot for @CrazyGoatLady , well done

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!

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 ☺️

@CrazyGoatLady what you have set up for DGM sounds amazing, well done.

We also have DS heading into exam season and it’s the culmination of years of effort so it has to be a top priority. Even if there’s an self-centred elderly tantrum going on too.

Magical boundary dust is up on the special’s board in the cafe ✨

That sounds like a lot of strands @trainedopossum and please do frequent the cafe whenever you need some strength 💐✨

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.

@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.

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?

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.

@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.

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.

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.

@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.

That's the thing, once your sense of smell goes then all you have is taste buds so no sublety.

My opinion is that once into dementia then just accept that nutrition goes out of the window.

@AInightingale it may be worth asking if your DM can be offered soft, easy eat, food.

Following on from discussions of avance health directives for parents with dementia ... DM is 89, fairly advanced dementia, very poor quality of life. She is not for hospital or any invasive treatments etc. She has an infision every 2 years for osteoporosis and I'm wondering what to do about the next one when it comes. It would involve transporting her to a hospital an hour away, where there is no space for one of us to stay with her. She won't know what's going on and will get upset. Is it in her interests to have this treatment? Obviously a broken bone or hip would be extremely painful. But this treatment didn't prevent her breaking a hip a few years ago (before she was in a CH with walking frame). Any thoughts?

@Isitsticky
I can see no benefit in disrupting your mum's life to have this treatment.

I believe that going to medical appointments at this stage is actually detrimental. They are disturbing to the patient, who deteriorate more quickly as a result.

Happy, positive experiences are what people with advanced dementia need. Not visits to hospital, alone, where they recognise nothing and nobody.

My 93 year old mum has in her advance care plan that she is not for hospital. She used to have regular eye tests and injections into her eye for age related macular degeneration. We stopped these out patient appointments about 3 years ago as the loss of logic in her brain meant she was finding the treatment increasingly difficult. Now she doesn’t even wear her glasses.

An infusion sounds less invasive than an injection into your eye but the injection is 10 seconds of treatment. How long is the infusion? Does it require a cannula that she doesn’t touch? My mum’s GP struggled earlier this year to get a blood sample as she was ‘combative’.

it sounds like a lot of logistics and a distressing treatment for v little benefit.

@Isitsticky just this last week I declined DM being taken to hospital to be put on a drip for something to do with her heart.

I figured that the distress DM would suffer being hauled out of bed to go and spend time in an ambulance then hospital corridor was more of a risk than staying in her comfortable CH bed.

I also think it’s a case of the risks of the infusion possibly now exceeding any benefits @Isitsticky.

@Choux is right about logistics - The fact it is hour away, unfamiliar circumstances and possibly invasive / lengthy process she will have forgotten the purpose of all need to factor into whether to do it or not now.

Our Dad could not consent to treatment himself when we saw a surgeon six months ago. It was an invasive process and the surgeon sensibly said ‘given your overall health and that there’s no discomfort, you don’t have to have the procedure’ - but we travelled all the way there and ended up declining the procedure. We had a nice lunch in the hospital cafe instead, but even that was an exercise in carefully managing his frailty.

@Isitsticky it sounds like as others have said, there might not be much benefit in putting DM through more medical treatment at this stage, if not strictly necessary. And if it has not prevented a break previously, it is unlikely to be sufficiently protective to warrant putting her through it.

DGM has stated she does not want to go to hospital again, but unfortunately it seems not that simple as the carers are duty bound to call 111 if she is unwell and it's beyond their capacity to support, and to call 999 in an emergency. It would then be down to DGM to refuse medical care when the ambulance arrives and if she isn't able to articulate her wishes or there is any doubt about capacity (eg oxygen deprivation) they'll take her in anyway.

Also, if she is too ill for the carers to attend to her so they refuse to come and family can't go straight away, as the soonest one of us can be there would be between 2-4hrs, there would be no safe alternative.

Like pp, I dropped taking mum for her macular degeneration tests and injections - not only was it a major military style operation to get her up, washed, dressed and out the door on time but her dementia meant she couldn’t recognise or articulate the letters on the sight charts anyway. The person who did that test wasn’t very patient or sympathetic with mum, which put me off, everyone else was lovely. Including the doctor who said that we could opt to just have the eye scan and he’d decide whether to inject or not based on those results. But the distress of the 6-weekly visits wasn’t worth the slight benefit of the treatment given she’d long stopped reading.

@Isitsticky I’m in general agreement that you really have to decide whether the treatment would improve or maintain your DM’s quality of life, balanced against the distress a trip to the hospital would cause. A few weeks ago mum had a fall and banged her head quite hard, and as she was on blood thinners the CH was minded to call for an ambulance but rang me to check. I said no because if she had developed a brain bleed she was so frail that there’s no way she’d be well enough for surgery, so she might as well stay where she was. Same when she had a “funny turn” recently. The CH are very understanding and supportive of our desire to keep mum out of hospital but I appreciate their policies say they have to check with family when something new happens.

I think some HCPs are naive (possibly wilfully) about the impact of the practicalities of treatment.

Especially as people age, obtaining treatment isnt neutral and risk free.

If you are an otherwise fit and able person (as HCPs are), going to a hospital/clinic can be a slightly annoying distraction. A 2 hour wait is a chance to read a book, play on your phone. You dont miss your name being called.

If the person is elderly, declining physically and cognitively it becomes a huge undertaking perhaps involving family members, hospital transport, hoists, wheelchairs, long waits in extreme discomfort. Generally distressing to all concerned.

Family members may be declining treatment not to hasten decline but to slow it or at least manage it.

Here we go again. ER (elderly relative) is back in hospital after pressing her panic button because she thought there were people out to get her (it's not really spoilers in this topic to say, nope no people, is it!) But of course now she's demanding we go and "rescue" her. I grey rock the whole thing - just repeat to her that it's not a decision I have any influence over then redirect to a different topic, but her closer family are taking it really hard. They have this thing that by not obeying her wishes, they're betraying her, but at the same time she has to be safe and she's got no insight into her condition.

It would almost be easier if she was properly away with the fairies and didn't know where she was. But her cognitive impairment doesn't appear to be progressing along those lines. I do know that we as a family can't do this again, that social services might want her to go home again, but it feels completely impractical...

For context this is the 5th admission in a delusional/psychotic state..... So not our first rodeo...