The Cockroach Cafe 🪳 Spring 2023

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in daffodils from the garden to remind us all that spring is around the corner and better times on the way.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So 🪳 mes amis/amies, and may you all live to fight another day.

Ok folks, can anyone advise please? Got PoA for both parents a couple of years ago when my dad hit the buffers. He died 18/12 ago. Now it seems that Mum needs help with bills and general finances and it's apparent that she's A) clueless and not really capable of managing and B) rather paranoid about her money. Having been through with dad I'm ready for this but, unlike dealing with dad when mum acknowledged situation and asked for help, mum is now adamant that she's in charge and now denies agreeing to her PoA! She's capable of most things and I don't want to take over her life but she wants me to deal with anything beyond regular bills but I really feel that I can't help with her finances unless she's prepared to share some info. How is PoA helpful when subject is paranoid and in denial but socially competent? Any ideas?

@Juneday your DH will need to ask to see a copy of the care plan and what visits have been agreed because sometimes the social worker can quite literally request 10 minute visits, so clarity is needed on what they are supposed to be doing.
The other thing, not wishing to sound unkind, but are you videoing the carers? If so, have you asked for their consent?

Also, your husband should request a Multi Disciplinary Team meeting (often referred to as an MDT) particularly if there are different professionals involved as none of them routinely talk to each other... I already knew this from working in adminstration in local authority homes, but it can come as a shock that at the home care stage GP doesn't talk to Social worker who doesn't talk to district nurses etc

@Juneday my mum has a mixture of 15 min and 30 min visits, the carers write in a folder what they do.

I assume some days she gets a little less if another visit overruns (when my dad was there and the carers were for him, if he had a continence accident then they would stay to clean up so then he was the one who overran). These are private carers, though.

@TheIoWfairy My father insisted on reading the small print on everything, and then would get investment small print mixed up with energy supply company small print with insurance small print. He could never get higher interest rates because by the time he’d decided to invest, the issue had closed, so his money would and up instant access earning virtually no interest. I told my father that I would manage his savings according to his principles, but only if he left it to me. I was not going to get into any discussion at all.

@lazymum99 MN has recently changed, so it automatically opens any link, just like Facebook. Apparently there’s a dustbin symbol somewhere on the post that stops the picture showing

Oh, pants, after initially settling well in the new care home, Dad has started to get violent, aggressive and inappropriate. Bloody awful dementia :-(

Thanks @MereDintofPandiculation
I guess I do need to be brave and have that sort of conversation. I recall a difficult time with FiL as he lost some of his capabilities with absolutely no insight. He refused help and got into all sorts of financial pickles. That was tricky. At least mum asks for help, even if she wants it on her own terms.

Oh no - I'm sorry that's happened. Are they worried about keeping him?

I hope not - we only moved him there a couple of weeks ago as his needs had got too great for the prior home :-(

Sorry to hear that @SheilaFentiman. How frustrating to think that you have him sorted only for this to happen.

one of the frustrating things I’m finding with dementia is that its difficult to tell what is a bad day vs normal progression of disease vs a change that needs further investigation by doctors. Hope the home can handle him ok.

Yes, the home spoke to the gp but the advice was to wait a few days in case it was a settling in issue. Gp will check again Wed.

I hope it goes okay, @SheilaFentiman , and that it's a settling in issue. MIL went in the other direction when she was moved from a MHU to her care home, in as much as her aggression was temporarily only directed at FIL. Unfortunately, now that she's more used to the place, she's beginning to lash out at residents and staff again. One or two of the others have been aggressive while I've been there. It's something the staff seem to be used to.

What happens if a dementia patient gets too aggressive for the care home to keep them?

His first care home was for mild and moderate dementia and this one also covers severe/EMI dementia (we didn’t realise the distinction at the time, but we would probably have made the same decision anyway last year, owing to space and other factors).

The first home said in Feb that his needs were too great now so we spent a while trying to sort an alternative.

I am hoping that the “EMI” status means the current home will look after him no matter what.

thank you all for the good wishes

Hi light up, no we are not videoing and would not and fully aware of consent. Although a paramedic recommended it for peace of mind re falls and said plenty of people do, we would not do so without permission. But we likely won’t anyway. I simply put a clean flushable wet wipe in the commode and it was still there clean and pristine over 24 hours later!

Care plan is 2 x 45 mins 2 Carers and 2 x 20 mins 2 carers. OT and SW both have concerns and OT is ringing the agency to remind them of what was agreed.

GP visiting this afternoon. Yay. Really lovely newly trained, kind and keen, last saw MiL before fall and I think will be concerned at huge deterioration.

Dementia services rang today and have scheduled a half hour call next week with me, she asked whether MiL would be up to a call and I said most unlikely - every time we visit there are missed calls but no messages. She can’t remember how the phone works atm. Helpful dementia services coordinator said they likely don’t have up to date info, didn’t know about the fall and said we must get GP to refer MiL back to Dementia Dr at specialist clinic who diagnosed her last year. She said herself the communication and systems are rubbish and she doesn’t have authority to refer.

Feel a little more hopeful of some professional input this week and next.

Sheila, sorry to hear, it is so sad. SiL had issues with her DF who was the gentlest soul and super friendly, she still says she couldn’t believe it was him when he got angry and awful language she had never heard him use. 🤞 you find the right care.

Thank you June

I’m glad the gp is going to visit your MIL, she sounds super on top of things

As far as I know if the care home cant manage them due to violent aggressive behaviour they get sectioned under the mental health care act and then are admitted and sectioned in that type of home dementia is bliidy awful

That's awful.

yes so wrong especially as it isnt their fault

fortunately my mum wasnt violent or aggressive in anyway but it didnt stop a care home refusing to take her as she didnt fit their so called criteria ie her dementia was further along than they wanted !!

there clearly needs to be more funding and expertise as dementia is many faceted and needs vary so much.

question on ‘hallucinations’ although not really sure that is the term. Before official diagnosis and worsening after falls etc MiL kept telling DH that she needed a new mattress as it was full of holes. We stripped the bed and turned the mattress and it was in excellent condition. Today, first time in months she says and also (adding to her list of worries mostly unfounded) this mattess has a huge hole in it! It is the hospital bed and brand new mattress. I assume this is a similar type of thing to hallucinations? Anyone else know about this.

gp thinks she still has some delirium due to infection, but this story and others started 8 or more months ago. New antibiotic course tomorrow. 🤞

Probably does apply with the mattress but people with dementia can see black as a hole. At work when we are replacing doormats in branches we are putting in brown ones for that reason. We had a review of branch design with the Alzheimer's Society and made a few changes like that.

My mum saw her go today and asked him how she can get back to driving (she's been told to wait for an assessment). He told her to speak to a solicitor. I'm thinking of changing her doctor and I'm also going to write a book about how services let down the elderly 😱

Newmum738 that will be a book to send to health secretary. BMA & CQC to start. I have written to CQC and suggested that all working with dementia, including management roles, undergo specials training to help empathy. Including sitting in a wet adult nappy, wearing glasses that distorts their vision and cotton wool in their ears, sitting in a meeting and being told it is the afternoon when it is the morning etc. Feel free to add. I was thinking about a beautician who said she had to undergo all the painful & uncomfortable treatments to be good at her job and a midwife friend who said she only became a really good midwife after giving birth.

I'm afraid even some nurses working on wards specialising in elder care need that book. I was horrified when I needed to explain that people with alzheimers get confused by even simple messages to one. And also when dad's notes say wife has alzheimer's give all updates/messages to son or daughter there is a reason for that and you can't tell mum stuff and expect her to tell the rest of the family/get organised at home.