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.

[RuthTopp]

£1.35 ! Even £135 couldn't come close to their ineptitude .

[Lightuptheroom]

Well, we're now on number 4 safeguarding from medical professionals regarding my mum's behaviour towards my dad..... And why do GP's insist on doing telephone triage for a very deaf person (my dad) where they end up speaking to my mum!!!! District nurse contacted parents GP on Friday as my dad was apparently in 'a lot of pain' GP then did the dreaded telephone appointment and prescribed codeine. It just doesn't add up at all.

[countrygirl99]

@Lightuptheroom sounds like you are having the same issues we had with dad 2020/1. GP would only do telephone appointments and so didn't spot that dad had a joint infection and just kept saying arthritis and prescribing pain killers. Turned out the infection they'd been failing to notice had a higher fatality rate in his age group than the covid they reckoned they were protecting him from. It took 2 very sharp letters from a consultant following admissions before the GP would see him face to face. Dad was in his 90s, deaf and very frail.

[Newmum738]

I've had to start the anti-depressants now which I was trying to avoid. Think I'm going to need some time off work. This is the second time lately that I've spent with mum and then had a breakdown. That's not a good sign for the future!

[DrBlackbird]

Hello all, my MiL with dementia has been managing in her own home with a mixture of us, her DD, carers coming, and a day care centre up until she broke her hip. She’s actually not done badly with the op and recovery but probably because she was fit her whole life.

Question is now, ‘what next’? She was in one of those NHS funded rehab homes for a few weeks post op but rapidly went downhill from the lack of stimulation. Their so-called daily activities were dire. She’s back home with, for the moment, just about round-the-clock care, but this cannot continue past a few weeks.

Next step is either a care home full-time or finding a full-time carer in her home. Has anybody any experience of the latter?

[Juneday]

Is she on a list for physio at home and or an OT visit? MiL also fit but complex broken ankle and disappointing rehab, in short version, has led to a nursing home. I believe would have been better outcome if rehab has been up to standard and without 6 week waiting list for physio. You need an assessment as to whether some recovery can be achieved as that will impact care home versus nursing home etc. In our case Dementia got significantly worse after hospital visits and it is that preventing mobility improvements rather than physical
strength and mobility.

With the right full time carer you might get more progress, but will she get out and about too and some stimulation?

[WollyParton]

@DrBlackbird Have just had a very similar experience with my dad. Spent 3 months in a so-called ‘rehab’ which was just really a care home with one daily physio visit. While there he was so starved of stimulation, and social contact and also allowed to become fully incontinent (as there weren’t enough staff to help him to the toilet). We have finally managed to get him home again where I’m sure he’ll thrive. Mum and I have resolved to never let him go to a care home/rehab again. It’s like he was just written off. While there, the care home manager told him he’d never walk again. Imagine telling someone that, even if it was true! Just horrific!

[Lightuptheroom]

Bizarre phone call... Mum rings me and tells me she's had 2 social workers there for an over an hour. They have told her she's been reported to them because shes been hitting my dad and according to her are sending the police around. She thinks this is all hilarious and keeps laughing .
We haven't had any calls from social worker at all , no idea if it's a complete work of fiction in her head or actually true!

[DrBlackbird]

Thanks for replies @Juneday She has had physio and OT assessed her at home. DH put in extra barristers and hold bars everywhere. Her recovery is not bad but she is still somewhat unsteady. The key issue is whether she’s safe at night on her own. For the moment we’ve got people going in overnight but it’s very ad hoc and not sustainable.

Thats exactly what happened to her @WollyParton she was sent home in adult nappies and had become incontinent when she never was before. She was ignored and/or ‘asked’ if she needed the toilet to which she said no. Never just routinely taken to the toilet.

If she does end up in a care home it’ll be so grim for her.

[DrBlackbird]

*bannisters lol. Could use a few barristers too no doubt.

[Juneday]

It was the night that worried us most too, and same re incontinence. I heard one other elderly patient ask to be taken to the loo and a nurse said, you know we can’t take you because it is broken and the other is too far! Every elderly person seemed to end up with a catheter too, and inevitably a UTI. It’s so sad and also a waste of equipment, drugs etc and all the hygiene waste on top. Care home are much better, they have en suite and help and encourage use. Falls mat with alarm, plenty of staff, so two at a time for moving and washing etc. I felt many hospital staff didn’t understand dementia and didn’t have time which is not their fault, but it exacerbates other issues, E.g. weight loss, confusion, BP issues caused by dehydration. All of which carried on with Carers at home, but much better at nursing home.

[MereDintofPandiculation]

@Lightuptheroom

Bizarre phone call... Mum rings me and tells me she's had 2 social workers there for an over an hour. They have told her she's been reported to them because shes been hitting my dad and according to her are sending the police around. She thinks this is all hilarious and keeps laughing .
We haven't had any calls from social worker at all , no idea if it's a complete work of fiction in her head or actually true!

No idea, sorry, but bumping in the hope someone else will answer

[DrBlackbird]

Has anyone had experience of taking a family member to a ‘memory clinic’? I’m wondering what they do and if there’s any point or reason to do so. MiL clearly has dementia and AFAIK there are no medications that will slow the progress, which actually has already been very slow,.

[Knotaknitter]

@DrBlackbird Mum's memory clinic experience was in 2020 so we never went there, the staff came to her. She had a brain scan which gave her a formal diagnosis, medication which may or may not have helped, the diagnosis meant she got council tax rebate, attendance allowance and a visitor in hospital when there was no visiting because of covid.

MIL refused to engage with the GP at the outset so no memory clinic, formal diagnosis, medication, discount or visiting. Having a formal diagnosis from a named professional on a given date (mum) rather than clearly having dementia (MIL) has seemed to make a difference, especially at the point where MIL could mask her difficulties for the length of a conversation.

[GordonBennett345]

Both parents have dementia. Mum is mid stage and in hospital having broken her hip. Dad is advanced and in a care home. Mum used to visit him every day. He isn't really aware of what's going on but has started asking for her. Should we be trying to get him to the hospital? They deserve to see each other but it will be tricky, upsetting for him to see her there, the goodbye will be awful for both of them, and they will both forget the whole thing within minutes. Not sure what to do.

[IthinkIsawahairbrushbackthere]

@GordonBennett345 I would go for a white lie in your shoes. "She can't come today but she will be here soon." That is my go to for anyone my mum asks to see.

[DrBlackbird]

Thanks for sharing your experiences @Knotaknitter

MiL had been referred years ago, when less obvious. She went once but refused to go again. At that point it was a not very tactful Doctor asking loads of memory questions and not much else. She got angry and agitated. As it is being suggested again, it would be worth asking some careful questions about what the process will specifically entail and what might be the outcomes.

[BestIsWest]

@DrBlackbird
DM’s experience was similar. It was 2021 so the assessment was in her home. She’d had a brain scan two years earlier for a different issue.
The doctor asked her a lot of questions, there were some cognitive tests - IIRC she had to draw a few things. Then the doctor said, with no preamble, based on the tests and the brain scan, you’ve got Alzheimer’s, gave me some leaflets and left. Followed up a week later by a nurse who came to take BP etc and a prescription.

I have to say DM was not impressed and neither was I really so it’s worth arming yourself with all the questions you might have. I had 30 seconds while I showed the doctor to the door to ask questions re prognosis etc.

[countrygirl99]

Not really relevant now but mum's diagnosis meant that when dad was dying in hospital January last year all us siblings got to see him. Otherwise it was the same 2 visitors only. Mum's diagnosis meant she needed a carer to accompany her and it didn't need to be the same carer so my brothers and I took turns. Otherwise I wouldn't have been able to say goodbye.

[GordonBennett345]

@IthinkIsawahairbrushbackthere

@GordonBennett345 I would go for a white lie in your shoes. "She can't come today but she will be here soon." That is my go to for anyone my mum asks to see.

I think I feel the same. Sibling wants to facilitate a visit by dad to the hospital. So difficult either way.

[IthinkIsawahairbrushbackthere]

@GordonBennett345 I would go for whatever would cause the least distress. I guess your sibling wants to feel they have done everything your parents would want if they were both of sound mind but you have to look after yourselves as well and it could be very distressing for everyone. My mum had issues with her mobility which was how I became her carer but as the dementia progressed she was unable to follow instructions and use the little bit of mobility she still had. The last time we took her anywhere in the car it took 30 minutes to get her out of the wheelchair and into the car and the same to get out at the other end. So two hours of our evening was taken up with getting her in and out of the car.

[SheilaFentiman]

@GordonBennett345

I think I feel the same. Sibling wants to facilitate a visit by dad to the hospital. So difficult either way.

I would also agree with the white lie. I think it will be distressing to no good end.

[SheilaFentiman]

Is there any way for one sibling with each parent to facilitate a FaceTime between them or similar?

[GordonBennett345]

@SheilaFentiman

Is there any way for one sibling with each parent to facilitate a FaceTime between them or similar?

Good idea. Dad doesn't seem to "see" photos on the phone when I show them to him but definitely worth a try. Or even phone calls.

[Juneday]

@Lightuptheroom when social worker visited MiL she rang first and left a messageX because we don’t have LPA on Health and Well Being she was being helpful but officially could go round without consultation, I think the visit was triggered because of issues with care in the home - DH rang and suggested it would help them both if he attended - when she agreed MiL didn’t have capacity she has continued to inform us BUT if she said care home and we said no, it actually is her decision not ours. To sum up in law of capacity is an issue and you have LPA you should ring Social Services and find out, if they did visit and you have LPA you should be informed and ask to be present when you can. If you don’t have LPA with luck you will get a kind and helpful response regardless, family input is in my opinion necessary and useful. We have found Social Worker to be kind and communicative. I hope you get some answers. 🤞.