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!

@GnomeDePlume Even if you haven't been especially close to your DM, from your posts it's always been clear that you want what's best for her and have shown great compassion. It sounds like your DB, similar to mine, has been closer to her but unable to differentiate between what's actually in her best interests and what makes him feel better.

I think in many ways caring for elderly relatives is like looking after teenagers/toddlers in that what is actually in their best interests is often not what makes you most popular with them in the moment, or what's easiest for you to do.

Thank you everyone. 💐I always feel down after visiting DM and for some reason this week was particularly bad. A sense of this is going to go on forever.

Anyway, a new day and I'm feeling brighter.

Onwards, onwards.

@GnomeDePlume I don’t blame you for feeling disheartened, it has gone on for such a long time.
My friend was phoned from her DMs care home when we were out for wine before Christmas about preparing for EOL and she is also still existing. It seems so unkind to allow people to suffer like this, it’s clear they aren’t going to get better so why not let them slip away.
Anyway you’re in a good mood today so I will try not to dwell. Wish me luck for DM visit today, copilot has given me a script to follow so I don’t get drawn into the emotions, I hope it works.

@rookiemere good luck for today. I know the tense feeling before a visit, the feeling of 'which DM am I going to get today'. The fear that the visit is going to be miserable for all concerned.

One of the tragedies of dementia is that it strips away so much of what makes us social animals.

We arent supposed to live this long.

Thankfully an ok visit- it’s always the same when I gird my loins in advance and had a nice few minutes stroking the care home cat to lower my stress levels.DMs antibiotics must have kicked in as she was back to usual levels of cantankerousness and even asked how my job was going.

I suppose the flip side of dementia is that DF has changed from a fairly demanding belligerent character to a Werthers type grandfather. He is delighted when I arrive, delighted to be outside and we have the same conversation every time about how pleased he is that DS is doing well at university.

The only slight tricky bit was DM asking for her nail file. She clearly wanted me to file them for her, but for some reason I am really anti doing things like that so I said I would ask the care home lady to do it as I know there’s someone to do nails.

Difficult few days, MIL got whisked into hospital following a malicious phone call to the police saying she was at risk of death. Nasty landlord denying it of course but may have egged on toxic neighbour to do it. Hospital says no medical issues, can tell she's well cared for and no need for her to be there but social services are blocking her return home. Thankfully BIL is high up in dementia care albeit elsewhere and pushing all he can but every day she's there is a risk of mobility loss and hospital infection. We have OT visit soon accompanied by the social worker so hopefully she'll be back by end of the week.

@Stressybetty that sounds horrible for all concerned. I hope you are able to 'spring' your DM soon.

@rookiemere I am glad your visit went ok. Totally with you on not doing nail filing. I dont do feet, at all. Dont even do my own.

DM finally had blood test results which show she is at a very low ebb (not a surprise). GP wanted her to go to hospital for treatment. DB and I both said a resounding 'no' so DM receiving less intensive treatment in the CH.

I suspect the GP was just going off what Dr Google told him as it is a long time since he has seen her in person. So only making a clinical judgement rather than considering the person as a whole.

Given the GP backed down on hospital quite quickly I think he was happy enough with DB and I being responsible for declining treatment on DM's behalf.

Gnome, it doesn't sound like your mother's GP has any common sense.

It's fortunate that he backed down so easily, though. I'm surprised that your brother agreed with you about declining a hospital admission. Do you think this means that he's realised that the end is getting closer?

@rookiemere ugh, I'm another one who can't deal with nails.

I don't mind doing my own, and having lost nearly ten stone, I don't have to go to the chiropodist anymore.
I couldn't reach down to my feet before

But other people's nails make me feel ill.

@TheBroonOneAndTheWhiteOne yes, DB accepts that the end is near.

I think the thing he doesnt get is that DM is going to die of something. At some point one of her failing organs is going to tip over into stopping completely.

My strong opinion is that I would rather that happen in the calm environment of the CH where there is plenty of staff. The worst possible thing would be for DM to have a heart attack or stroke waiting in a corridor in A&E to be admitted for treatment.

The GP is a waste of clean shorts (to quote Bart Simpson).

@GnomeDePlume your mum's GP sounds like my mum's. During COVID they refused to see dad face to face and despite his complex co-morbidies and deafness insisted on phone appointments. Even after assuming his knee pain was his arthritis when it was severe joint infection with a higher fatality rate than COVID. In the end it took 2 consultant letters following admissions saying face to face appointments were necessary. The second said "I do not expect to see Mr X on my ward again because you have failed to give appropriate treatment"!

@countrygirl99 ouch! That GP must have felt that!

@GnomeDePlume you'd have thought so but they still made it hard work until he died. Still rubbish to this day. Once mum actually gets to see her GP they are good but they insist on trying to phone mum directly to make appointments despite knowing that she doesn't answer the phone (not only deaf but dementia means she doesn't recognise the noise as the phone) and, on the rare occasions she does answer, her Alzheimer's means she forgets all about it and doesn't let anyone know to make sure she goes.

Having spent some quite considerable time with my parents on elderly care/frailty wards and in A&E in the last year I am absolutely sure you are doing the right thing declining hospital treatment. I saw so many patients who clearly had some sort of dementia (or at least cognitive decline) being left to their own devices when they clearly needed assistance or at least someone to speak to them. The staff on these wards are simply too busy to give them the time they need. Since there's no treatment she can be given in hospital that will actually make her 'better' again I can't see how anyone could disagree with the decision to let her stay where she is comfortable and well cared for. My DF didn't have any cognitive problems but found the hospital ward unpleasant. If I'd somehow know how close to the end he was (he had a chronic condition but with treatment he was not expected to be close to the end) I would have campaigned for him to spend the time at home. A&E was another matter all together. Last time I was there with mum (after a 'fall' which I am sure was only in her mind, but B insisted she needed an ambulance to A&E) there was a patient alone and attached to a drip who clearly had dementia. She was calling for help and kept trying to climb off the bed and pull it out- when I alerted the staff I was told they knew all about her and didn't have time to keep going to her. I totally understand how difficult it must be for the staff but the poor woman was clearly scared.

We are a bit worried about MIL who lives in Malaysia. SIL just phoned to say that the carer found her lying on the floor unconscious and there was a lot of blood. An ambulance has been called so she is on her way to hospital and SIL will meet her there. Poor DH isn't really sure what to hope for. She's extremely elderly by Malaysian standards where life expectancy is lower than Europe, she's 91. She has breast cancer that she and the family have decided not to treat, mostly because there's a high risk that she wouldn't survive an operation. If she were to pass away from this fall it would probably be her preferred way to go over a slow decline from cancer. It was about 3 am out there when SIL phoned so I'm not sure when we will next hear from her.

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.

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

@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.

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.

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.

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

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.

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!

@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.

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.