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!

Hi @BlackAmericanoNoSugar (which is exactly how I like my coffee!) my parents used to have a Rosebud dementia reminder clock which has 20 preset reminders or you can apparently personalise them but using a USB stick so you need to go there and plug it into the clock.

However this says it can be set with messages from anywhere. I have never used it but it sounds good. Otherwise a large metal board with the days of the week on and magnetic strips saying ‘Sally coming today’ which Sally puts on the next day she is coming before she leaves would work if your relative can still remember what day it is.
https://memoryboard.com/products/10-1-inch

I’ve seen weekly organiser whiteboard type things in Hobbycraft or Rymans? Spaces for each day of the week - could they each write in which day they’re coming?

I saw you mentioned her eyesight was bad so you probably want the bigger one
https://memoryboard.com/products/15-6-inch

I looked at the MemRabel there were several price points. The Alzheimer’s Society suggested they might be of use.
https://www.easylinkuk.co.uk/index.php?route=product/product&product_id=1803

In the end I realised my Mum’s dementia was too far advanced.

For DM I made a flip chart type thing which went in a salesman's ringbinder.

One sheet for each day of the week but each sheet had 'yesterday', 'today', 'tomorrow'.

Additional post-it notes which could be stuck on a particular day eg 'haircut today at 3pm'.

Thanks for the suggestions, I will check them out. The Memoryboard looks interesting because I can send stuff from my phone and so can the people who call in to her. But I will have to read it through, because if one of them put a message up and then another did the second one might overwrite the first.

Mum is getting a little less panicky about DB. We have had several days of her calling him multiple times a day to check on him, sometimes forgetting what operation he had, and then also phoning me multiple times to complain that she hadn't heard anything from him and perhaps I should bring her down to check that he wasn't unconscious and needing help.

We now have a formal diagnosis for mum- mixed alzheimers and vascular dementia. Neither of these is a shock to me, given her symptoms, but I was slightly surprised at how definitive the diagnosis was given that Brother came along to each of her assessments and was desperately trying to give the impression that there there was just a bit of normal age related slowing down and some anxiety/loneliness that could all be 'fixed' by family being around more. I have a tiny bit of hope that perhaps now he (or at least his partner) will be prepared to properly consider what her future care needs might be and less quick to make promises that he won't be able to keep. It's become very clear that so far he hasn't done any research in to dementia- his comment to me was 'I thought alzheimers was just another word for dementia, so what's this other thing?' I am no expert either but just googling 'dementia symptoms' when I first suspected a problem brought up information about various types of dementia. I have printed some information and suggested he reads it.
Mum should be starting some medication soon, but I'm very much aware that it's a case of slowing deterioration, not reversing or stopping it. My real worry now is that, especially if she responds well to medication, he will want to push forward with his plan to move his family in with mum without properly thinking it through. I very much doubt that he will want professional carers coming and going when she really needs it, and won't want to sell the house if/when it gets to the stage where she really needs more than can be provided at home. I also doubt that he has considered that this is unlikely to be a short term thing and she could need care for years in a situation where she barely recognises him and can do very little for herself. Unfortunately it's impossible for me to have a sensible conversation with him about any of this because there mere fact that I have questioned/suggested something makes him double down on his opinion.

Your poor sister in law @bigdogpaws. What does she think about all this, because she will end up nursing an old lady with dementia if they have nowhere else to go.

Why are brothers like this. I still remember the incredulity in my brother's voice when I told him the sheltered housing said my mother was no longer suitable for their place when she was discharged from hospital, due to mobility issues plus suffering incontinence etc. Like dementia is not a degenerative condition.

Were you ok with hearing the diagnosis @bigdogpaws. I know you already knew, but I still found it hard the first time the doctor used the dementia word.
Your B is such an idiot. I would spell out your concerns to SIL who likely won’t want to have to pick up the heavy lifting if it comes to physical care( and who would blame her).

@bigdogpawsYour brother needs to be made fully aware of what late stage dementia involves before making any decisions. She might simply be a forgetful but sweet lady now but as it progresses you could all be looking at personality changes, never being able to leave your DM alone even for 5 minutes, nighttime wandering, double incontinence, excoriation, anxiety and distress PLUS anything medical which arises.

The medication your mum gets will potentially slow down the progression of the Alzheimer’s but there is no treatment for vascular dementia. Looking after her heart with the correct medication will possibly help though. Also vascular dementia can progress faster than late onset Alzheimer’s and the progression can be in steps down as circulatory events happen while Alzheimer’s is usually a long slow but steady decline. So while she might not live as long as she would if she only had Alzheimer’s, she could move quickly through the early stages and need quite extensive caring relatively quickly.

I would suggest he visits a nursing home to see exactly what your mum’s future could hold.

Hope you are ok @bigdogpaws. The diagnosis can be a shock even if you are expecting it.

I’m after recommendations for rehydration thingies for DM. She’s definitely not drinking enough. I’ve read up on Jelly Drops but you only seem to be able to buy them in bulk. DM doesn’t have much of a sweet tooth so I’m not sure if she’d like them. Anyone got any experience?

@rookiemere @BestIsWest I think I'm OK about the diagnosis. It feels like the last year has been a constant battle to try to manage mum's 'situation' with lots of well meaning people trying to explain away individual symptoms/experiences as something mundane. Obviously it's not a pleasant thing to be told but I knew there was definitely an underlying problem and at least with a diagnosis we have a better understanding of what's happening, how to manage it and what may happen next.
@choux Interesting to hear about the different progression with vascular dementia. I totally agree with everything you say about brother needing to understand what he's dealing with. Unfortunately, he and his partner see me as the bad guy for pushing for dementia assessment (even though Mum broached the subject first and was very keen for me to help her with this), and even more so for suggesting looking at all care options. There is no way that they will act on advice or suggestions from me and both share a belief that they know better than anyone else and 'it will be OK'. The best I think I can do is to keep sending mum back to them with copies of information 'from the doctor'. I suspect his partner may not be quite as on board with the plan as Brother is claiming but there is no way she would disclose that to me. If they want to become Mum's carers and can do it properly, then of course this is nothing to do with me and very kind of them. But my fear is that they will very quickly find that it's not sustainable and will expect me to sort it out when everything goes wrong, or will deny that they can't cope because they don't want to lose her house.
The most difficult thing at the moment is that mum does have capacity so can make her own decisions but lacks the ability to really consider her options and make an informed choice.

@bigdogpaws if your mum still has capacity are the PoA and wills all done? Who has PoA for finances? What is your brother’s plan with his current house if he moves into your mum’s? Is it rented or owned? What does he plan to do if your mum gets to the point her care needs are too great for them? Are there enough savings to pay for a care home for a couple of years or more without needing to sell your mum’s house? If there isn’t where will he live if she has to go into care? I know you say he isn’t planning her to go into care ever but no one knows how this will progress. The ‘plan’ needs to cover all possible eventualities.

Also, if your mum is leaving the estate jointly to you both, could your brother afford to buy you out of the family home? Or will you then be the bad person for asking them to sell ‘their’ home?

I think giving your mum and him info on the dementia progression, treatment of the house in the financial assessment process if he lives there, support options etc is the best you can do. Also talking to your mum about where she would like to live. My parents lived in an extra care housing community in a spacious 2 bed flat with social events, restaurant, onsite managers and onsite carers as their health declined. Dad had Alzheimer’s and vascular dementia as well as heart failure and he actually died there. He never needed a care home - mum had worse Alzheimer’s than him so was definitely not looking after him. It was the carers, me visiting and staying often and the managers and their friends who lived there. Is your mum open to moving out of her big house? Are any of these close by to you? This is the organisation who owned the flat my parents lived in.
https://www.housing21.org.uk/

@Choux We were in the process of sorting LPA but brother had started questioning whether it was needed/who should be LPA. I'm hoping he will now agree that this is a necessity and I can do it quickly. Mum has a will in place and it currently basically splits everything between us. She has some savings but is currently using some each month towards bills etc (which was always her plan). Even if she moved in to care now, they would not last more than a year so there's no way she could pay for long term care without selling her home. This is one of my major concerns with Brother's plan to move in with her. Unfortunately he completely refuses to accept this as even a possibility- his opinion is that mum will not go in to residential care 'no matter what'. As such, he will not discuss any situation where she would need to sell her house.

Sadly I can't see any situation where we don't end up with huge arguments between me and brother. In his view the only possible option is for family to care for mum for the rest of her life and that I am basically uncaring and evil for not agreeing to do whatever is necessary to make that happen. I know that as things progress he will continue to fight against paid carers/residential care and will expect me to take on more and more. Obviously if we had come to a joint decision that we planned to care for mum at home without paid carers I would expect to do my fair share but I really don't think this is the best for mum so I definitely won't be giving up my own life to make it happen. I have done some research on Extra Care places and this looks to me to be a much better option for mum - with space of her own but communal areas if she wants to socialise and carers on hand if needed. It looks like some places do accept dementia patients (which I know is an issue with standard assisted living) so it would be a much gentler transition to more care over time than being at home and moving to a nursing home when things become very bad. It would also allow us to visit and have time to do nice things with her, rather than always being in a rush to take her to appointments, do jobs around the house, organise her bills etc.

I assume your brother realises that as the disease progresses your mother will need someone to do personal care in changing pads , cleaning the aftermath including herself , endless clothing , bedding and surrounding area including the floor / carpet , hands if they do that to themselves etc?
Who does he think will do that ?

My neighbours dh can come across as fine , you can have a reasonable conversation with him yet he has recently forgot what toilet paper is , used his t shirt to wipe himself , also got it on his hands , wiped them on the stairway wallpaper as he's coming down the stairs and had a shitty t shirt back on himself .

His wife didn't expect him to have done anything like that early on in his diagnosis and thought she had a while before things like that manifested itself .

@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.

@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.

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.

@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.

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.

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.

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.

@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.

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.

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.