Cockroach cafe - Spring to Summer 2026

@Scrabsqueak she sounds VERY like my DM. Always been anxious, now having to cope alone (DF is in a home) and getting forgetful (very) but getting a clean bill of health in memory screenings. The anxiety is a massive problem because it stops her getting things done and she dumps her worries on me for hours on end which uses up my capacity to actually help with the things that need sorting.

I think nobody sees the reality until they are up to their necks in it.

Nobody realises that their sweet, slightly dotty parent can turn into a pinching, scratching, biting fiend. That forgetting names can turn into forgetting people. My DM stopped knowing who I was some months ago. That your doubly incontinent parent will sometimes cry because they have used the pad and think they have been naughty. That indignity will be piled on indignity and family is made to witness it.

Instead we see cheerful segments on breakfast television where a jolly sing song makes it all better.

@ManchesterMonkey I also have a brother who's a master of the high handed response. After he went way too far at Christmas I've gone no contact. Typically his attitude would be I know you've had to drop everything 3 times this month and do a 2 hour round trip to sort an urgent major issue but that's just what a daughter should do, I had to go online and make a payment while sitting on my sofa which is far more onerous.

@GnomeDePlume the brother who feels he has to challenge everything is horribly familiar to me. I think mine feels that he has to be seen to advocate for our parents but all to often there's really nothing that can be sensibly challenged- the situation is unpleasant but the hcp are doing as much as they can. I am slightly surprised that mine has not tried to challenge mum's diagnosis, but I think it helps that he was at most of the assessment meetings and decided that the person leading those was 'very knowledgeable and clearly very intelligent' (= appeared to agree with him).
@ManchesterMonkey Good on you for pushing back with your brothers. We have 'schrodinger's admin tasks'. These are simultaneously incredibly difficult/time consuming/can't possibly be done by someone who has to work etc, and also just a couple of phone calls/a bit of paperwork/5 minute job- depending on which of us is being asked/expected to do them. I also need to urgently complete attendance allowance paperwork after Brother insisted (in front of the social worker) that he must do it because we MUST phone for a paper form, it MUST go to his house and only he can fill it in properly. Months later no phone call has been made and no form completed because apparently he can't possibly do that when he works. So now he has very graciously agreed that I can do it since it is after all just a form and a few bits of paperwork. The form looks simple but I understand that the wording used in answers can make a big difference to the outcome so the links upthread will be very useful.

Thanks @GnomeDePlume… they were dressed today & are being dressed 2-3 times a week, think they were last dressed maybe Friday? It’s so grim though, I hadn’t realised they were weeping so much her special grippy socks were soaked (do we have a gagging emoji?!)

It just feels like elder / end of life ‘care’ is appalling in this country, and the knock on effect is on everything - ambulances tied up with falling patients who should be in a home but whose wants seem to override everything else including their and those around them’s needs… bed blocking for weeks on end because there’s no suitable step down / rehab care beds available, families wrung out trying to manage both ends of the generation spectrum and struggling to cope themselves. It’s so bleak.

Then mix in the muppet siblings some of you have to deal with and…

To everyone. And probably gin too.

@ManchesterMonkey I used this https://www.ageuk.org.uk/siteassets/documents/information-guides/attendance-allowance/id205824-attendance-allowance-guidance_web.pdf to fill in with DM and she got enhanced rate including the overnight part. Sorry your siblings still being troublesome.

@NoMoreFluffsToGive I am so sorry 💐that does sound utterly grim. Is anyone coming out to dress/treat the ulcers on DMIL's legs? Is there any sort of treatment plan in place?

@ManchesterMonkey re attendance allowance, the advice we were given was to think about DM's needs on her worst days rather than on her best or average days.

@Choux DM is no longer capable of any sort of conversation with anyone or even saying a complete sentence. What little she says is sometimes a couple of words but even then they can be difficult to understand. Mostly they are just random words.

DB has got CH staff frightened to do anything in case he complains to someone. I know him, he will just waffle on in a passive aggressive way but wont actually do anything.

He thinks being 'challenging' makes him look intelligent. He wants the CH nurse to argue back, show evidence or something. They wont because DM is quiet, not bothering anyone.

So DM is left to continue in misery.

@bigdogpaws , thanks for that. Universal ‘jiggler’ on way from Amazon now!😂 MIL has been assessed twice by social services in the last year, last time being about 3 months ago. She is deemed to have full capacity. She has always been a worrier, and now she is on her own all the time she spends far too much time in her own head making up scenarios. It’s very hit and miss if she listens to me or not, and often forgets what we’ve discussed. I don’t think it’s dementia as she is 88 and it seems a bit late to come on ( although I could well be wrong about that). I think her life is just overwhelming her, this is the first time she has ever been alone and had to make decisions. Plus, she is getting old and doesn’t have the concentration or memory capacity she once had.

@NoMoreFluffsToGive , that sounds so hard and triggering for you.
Ulcerated legs can take so long to heal if the person isn’t v mobile.
It’s amazing the state some hospitals appear willing to send people home in. I hope you can get some proper rest at night.

hi all, sending positive thoughts to everyone in this grim situation…

I’m struggling today. MiL has been sent home from hospital as “medically optimised” and because she wants to be home despite severe heart failure, various other medical issues meaning she has a very high risk of falls and limited life expectancy. She’s still refusing to sleep in her bed (now downstairs) which means her legs, which are pretty much ulcerated from the knees down, are just… grim. I won’t go into details but it is utterly, utterly grim. It’s sent me spiralling back to when I was a kid and my mum was dying of cancer from a tumour that had breached the surface of her face and the sheer enormous guilt of finding it awful and just wanting to run, run away and keep running.

I have come home from her place having sorted some things out for her and was immediately met with demands for help / attention from my teenagers & husband, and I just wanted to throw up and then hide. And I have to function at work the rest of the week while waking up at all hours because I’m on high alert for the next call/text/email from her to say she’s fallen and could we go around and pick her up. It’s all a bit nightmarish.

Attendance allowance: not sure if it’s still the case but a few years ago it was best to call up to get a form sent as then when you got attendance allowance awarded they backdated it to when you asked for the form as long as you sent it back within 6 weeks.

Help filling it in - for my first parent’s application I had an appointment at Age UK to help me put the right things in the application. Citizen’s Advice seem to do similar.

https://www.citizensadvice.org.uk/benefits/sick-or-disabled-people-and-carers/attendance-allowance/claiming-attendance-allowance/help-with-attendance-allowance-form/

Back from my family weekend in Berlin.

no one died e.g., I didn’t kill Germany-based Corporate Golden Boy brother. It was all terribly civilised and middle class polite.

Now back to it. Social worker called this AM. Obviously, she called me. Not the Flake in Nottingham, not the Corporate Golden Boy. Me. Because I’ve been sorting every fucking thing out.

Yes, we want the care package to continue. Social worker was super helpful. Mum’s income is so low that it will probably be free. Mum needs to apply for attendance allowance.

i think there’s a Sibling Expectation that I go through the attendance allowance form with mum, which I will do to ensure it’s actually done.

Does anyone have any tips on making a strong application? If it gets rejected can we immediately apply again? Or do we have to wait?

Flake is at Mum’s doing three days of medical appointments this week as I put my foot down and said NO. I’ve messaged Flake to say get hydration tablets and rearrange the carer. No response. I’m not doing either of these tasks.

i got a really high handed response from Corporate Golden Boy in reply to my update. Not even ‘thanks for the update’ ‘that’s good news’ or ‘let me know if you need any help with the form’.

FUCKING RUDE.

It’s such a weird dynamic, he’s so used to being in control over the corporate world that he seems to resent my messages and me being project manager - because that’s ostensibly what I am - but won’t actually do the project management or be gracious enough to ackonowkdge it.

It’s not like we’re competing for the bonus round at the end of the year! But in his highly competitive brain I’m competing for his Golden Child status.

Over the years it would have been nice to be the Golden Child at certain points in my life, but fuck me, if it turned me into an entitled dickhead who is unable to work out the family dynamics and PROCESS them to make for ordered, helpful, sensible and strategic decision making over what’s best for our mother thsn I’ll stick with being a rebel .

@Scrabsqueak Just on a practical note, if you want to get some air in to the house when you next visit it's relatively simple to open locked windows from the inside (if they are the standard UPVC type). There are videos online- I had to do it when we moved in to a house and the previous owner had forgotten to leave us the keys. Not a long term solution but could give you some relief if the place is too hot when you are there.
Have you spoken to anyone about her cognitive abilities? Is it normal for her to not tell you about medical discussions (or be unclear about what they were) and get overly worried about small issues (eg. worrying that the key box will rust immediately)? Looking back, one of the first signs that there was something more than just age related slowing down with mum was when she started giving us confusing/conflicting accounts of what she'd been told in medical appointments, and when she started to get very worried about things that were very unlikely to happen. I've realised now that some of the seemingly very complicated 'rules' about her medication other things she's been asked to do to help manage medical conditions were actually her misunderstanding what she was told.

@GnomeDePlume how would your brother respond to a suggestion to try the lorazepam once just to see if it helps calm her? Perhaps at a time you are both there so can see the effect it has on her?

Is she actually conversing with anyone at any point during the day or is she either asleep or gently whimpering? If there is no engagement with visitors then ensuring she has no distress by giving her the lorazepam isn’t reducing her engagement with people but IS maximising her comfort.

Do you think the care home nursing team would have stern words with your brother that ‘she needs it’ at some point or are they going to let him decide everything up to the end?

She's not actually being given it. This is all part of the 'not yet, not yet' issue which DB and CH are stuck in.

DB because he isnt ready and CH because DM's distress isnt disturbing anyone but her.

I’m in awe of you all on here. You are all dealing with so much, and still with so much love and also humour.
My MIL is definitely slipping in some ways. I think the recent heatwave really took it out of her. She cannot open any windows in her house beyond one upstairs as my BIL locked them all and I cannot find the keys. She will not allow the back door to be opened as she says the mice get in(lesser of two evils to me). The heat has made her miserable, the house is like a furnace as she will not turn the heating off.
She tells me she has developed blotches on her arms, which don’t hurt or itch but bother her, so she phoned her GP who refuses to visit, so she called 111, but says medic who called seemed more concerned about her bowel incontinence. This is news to me! What else she might not be sharing with me I dread to think. I’ve a feeling she was going to phone 111 again last night after I spoke to her because she is so worried about these blotches. Although, I often hear if she does, I didn’t at the weekend so unless she tells me I am none the wiser.
The protective cover off her key box has apparently vanished and the carer agency phoned me to tell me she has phoned them three times about this but they cannot do anything about it as obviously not their responsibility. I am trying to phone adult social services about this today (it happened on Saturday) but cannot get through atm. The key is still protected but she thinks the box will rust and fall off in a matter of hours.
I am booked to visit again on 22nd, I try to go once per month, it’s an 800 mile round trip and takes me a 20 hour day so I really can’t go more often.( or I won’t, I need a life too). But I still feel guilty which I know is my own fault. At least I am not having to battle anyone else, but I wish BIL was still there, when he died it knocked the last of the stuffing out of her and turned her into this wee dependant old lady, who still has a core of steel which makes her refuse to give up her house and move nearer to me and her GC. She still thinks somehow, we will uproot our lives and go and live near her, in the most often consistently voted shittest town in UK! (Bit of giveaway there🙂). This will not happen, but she talks about it constantly although I don’t really think she believes it.
I know she is not a problem for me to solve, but a considerable amount of brainpower goes towards thinking how to make things better for her, most of which she just dismisses.
I do realise I shouldn’t always try to solve things and should just listen and agree, but it is hard.

Did the lorazepam help your mother @GnomeDePlume?
It should have calmed her distress, but needs to be given several times a day.
It's like midazolam but not quite so strong.

@Isitsticky - Jellydrops https://www.jellydrops.com/

They're like a kind of dissolvable jelly sweet, a bit like a slightly solider runner's gel, that contain water, electrolytes and vitamins, look like sweets and are easy to swallow. They're great for older people who don't understand they need to drink or find drinking a bit of a challenge, as they provide hydration while looking fun and appealing.

What are these jellydrops a couple of you have mentioned?

DM also getting frequently upset in her care home as her Alzheimers progresses. The staff called in the Dementia Service to advise (?) They've already increased her antidepressant. Obvs not much the DS woman could suggest but was going to talk to their psychiatrist. Surely the CH have seen this many times before? It's not that unusual a symptom. Lorazepam etc have previously been dismissed due to falls risk but I wonder if they'll go down that route now as DM never moves voluntarily now anyway.

Yes, the elderly lady I used to be PoA for (not the ER of most of my posts....) did very well on Jellydrops. She didn't have a sweet tooth before her dementia progressed, but was absolutely hooked on the little jelly sweets and it did improve her hydration and overall health. They're bright, colourful and look appealing, and she also felt she was allowed a bit of control by having (more or less) free access to them. She used to offer them to visitors and the staff as a special treat.

This sounds very difficult. Surely at this stage anything that eases the distress should be done. It sounds like at some level there's a feeling that if she's showing some activity/reactions she's still 'there' whereas if that's medicated away she won't be and they are just not ready to let go yet. The more I experience and read about dementia the more determined I am to write very clear instructions for my DC/caregivers about my preferences if I develop dementia.

@Goldmoon He has indicated that 'if' mum becomes incontinent they 'might' have to look at visiting carers a couple of times a day. But he refuses to discuss it properly and clearly isn't facing the reality that even if she used incontinence pants etc she can't be left in soiled pads for long without causing problems, and between now and full incontinence there are likely to be lots of toileting accidents. There is lots that I doubt he has considered- including the impact on his child's life if/when mum stops being able to be left alone for long, or starts doing very odd things, or leaves dangerous medication etc around. I have to hope that he will read more about the disease and start to consider these things for himself. Unfortunately mum isn't really able to properly think through the real implications and is just happy that her lovely son will look after her. Brother never plans anything properly but has been used to our parents acting as his safety net when things (usually predictably) go wrong.
@Choux Thanks for the info about extra care. I feel fairly sure that at some stage residential care will be needed. I would have liked to use this time when she is relatively well to look around and decide where would be the best fit for her, perhaps easing her in to the idea with a few weeks' respite at some point. But I can see that we'll end up having to move her when there's a crisis and limited options.
@GnomeDePlume I think we've seen some of the stepped decline already and it seems to baffle Brother. At the moment he is trying to find the right mobile phone for mum because she is finding the phone that she has used for years increasingly difficult. His conclusion is that the phone must be old and developing faults, since she was fine with it a few months ago. Of course, every type of phone she tries is actually harder for her (although she is desperately trying to pretend she 'just needs to get used to' the latest one and keeping the old one as well 'until she gets the hang of it'). He won't accept that the thought process involved in switching a phone on, then pressing a button to make a call, then remembering which end to speak in to etc is just too much. As I remember you saying often, he is trying to solve 'yesterday's problem'. I can only hope that the diagnosis will make him actually read about the conditions and what they mean. At the moment if I try to tell him mum can't do something he acts as though I am trying to prevent her from doing it, rather than just observing what's happening.

Turns out the 'heavy duty antipsychotic' DM was prescribed was Lorazepam. The nurse who told DB she 'wouldnt give it to her own mum' is a bossy, contrarian, know it all. Thankfully now left.

Everyone keeps saying 'not yet, not yet' to medicate DM. Just how much misery does DM have to suffer? The problem is that she is quietly distressed rather than loudly distressed. If she was being noisy I have no doubt she would have been medicated by now.

@bigdogpaws such an awful situation for you. As you know, your DB is a fool. He can see the possibility of a free home and this has blinded him to everything else including reality.

LPAs arent amazing but are definitely better than the alternative of having to go through the Court of Protection.

As PP have said, vascular dementia does tend to have a more stepped progression. XYZ solution can work until suddenly it doesnt or worse, is exactly the wrong thing.

@bigdogpaws my mum already had Alzheimer’s when she moved into the extra care housing with my dad although she hadn’t been formally diagnosed. They don’t mind residents having dementia although they did get concerned when my mum left the apartment in her nightgown, went down two flights of stairs, out the fire door and into the gardens. She was found because going through the fire door had alerted the carers on night duty. Thankfully that was a one off as she was usually happy to stay wherever my dad was.

The thing that flagged residents as needing to leave extra care housing for a care home was if they started having frequent falls. So if the resident lost mobility but knew that and sat still between care visits that was ok, but if they were also forgetful and kept trying to get up to make a cuppa and then falling, they would be told the housing was no longer suitable for them and have to go to a residential care home.