🪳 🪳 🪳 Cockroach Café Late Summer 2024

[MereDintofPandiculation]

Welcome in to the Cockroach Café Bad Daughters’ Room. all fresh and clean for the new season. Join me over here on the sofas amongst the rugs and cushions if you’ve come in from the rain, or over the other side in the shade if it’s 33 degrees outside. Looks like it’s either one or the other.

Good daughters, find your way to the small room behind the stairs. Sorry it’s not as equipped as here, but it doesn’t get much use.

Come in when you want to share good news, or to rant, or just to hang out with others who understand what you're going through. The way MN works, hopefully this thread won’t appear in any featured lists, and the only people wandering in will be those who understand what it’s all about.

If you have a BIG question, it might be worth giving it its own thread, so as not to swamp this one.

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. My recent enquiries suggested more people wanted to keep the well known name than wanted to change it to something more savoury, so for the moment it stays.

Even when they come out in person it doesn't always help. My Aunt had home visits from many people, but because they declared she had capacity on the basis of limited time spent with her and limited visits when she refused everything they just went along with it. Funnily enough she did agree to the fire assessment at the time then refused again when the letter arrived (open fireplace, never had chimney swept, burning rubbish in it, no fire alarms, containers of sticks and logs all around inside the house!).

Can anyone give me advice on sheltered accommodation? I need to get my mum closer to me, and ideally the safest thing for her is sheltered so I am looking at 'extra care' facilities. One of the questions on the application form is about whether she owns a home and the value of that. I'm not sure exactly why they are asking this question. The intention is that my mum will pay for the accommodation and any care she needs. Strictly speaking, she doesn't own her home because she have a Dad put in trust. I have considered selling and buying somewhere closer to me but I think it just creates more complexity and I'm willing to take on plus, she would be desperately lonely. Does anybody have experience that you can share about accessing an extra care place? Thanks!

I don’t have much experience with extra care but DF was in sheltered with visiting care when SW suggested extra care and sent me this link (you can filter) https://housingcare.org/elderly-uk-assisted-living-extra-care-housing.

I’d call the managers (in DF’s case they all said his need was greater than they would usually accept but the conversations were helpful to work out next steps).

One extra care place was linked to a care home, self-funders are often asked if they have enough for fees when going in to a home so that might be why it’s on the form? Care companies often prefer to know there is 2+ years of funds (it’s worth checking they will take council funded as well to future proof any place).

I'm now at my mom's, and we've had a rough night! My niece is dead on her feet. We had to get up four times between 11:30 pm at 4 am because Mum wanted to get out of bed and go to the toilet. The final time she didn't make it in time, so we then had to get her changed. We cannot live like this and I've only been here one night! Myself, my niece, and my six year old have been up since 4 am because we gave up trying to go back to sleep. I'm thinking I will call social services first thing and wondering about getting a nighttime care support. Does anyone have any thoughts or advice?

@Newmum738 have the medical team suggested things will improve over time with physio etc?

Your situation sounds so hard and meeting your mum’s current needs is unsustainable even on a temporary basis. Would your mum consider a respite stay in a care home if there’s money for that?

Definitely talk to social services and stress that you have a young child and need their advice as you cannot provide support. Try to keep niece out of the picture so they don’t think there’s a young fit carer with fewer commitments ‘available’. Good luck.

@FiniteSagacity thanks for the suggestions. I think we are going to get an agency carer in overnight for now and see if mum improves. Then it's residential care, I think!

@Newmum738 DMIL is in sheltered accommodation with "assisted" living. The provider is on the list given by @FiniteSagacity She has a careplan agreed by social services on discharge from hospital and is now up to 4 carer visits a day, plus meals, plus help with showering. She did not own her own home, but the house she was living was deemed unsuitable for her needs because it had stairs and was in urgent need of repairs!
I don't think she (regularly) needs help at night, but there is a pull-cord by the bed if needed.
Residents do seem to move on if they have needs beyond what can be provided at this location (or if they die). There is a distinction between what is considered to be social care and nursing care in the system which makes it harder for relatives to work out suitable providers.

@catndogslife it's remarkable that mostly what I hear is what the services don't do rather than what service is the best to meet my needs. It's an absolute minefield and we are stuck getting no sleep and struggling to cope with a Nana who keeps pissing herself, drying her clothes and putting them back on 🙈 So Christmassy 😂

The carers at DMILs place are actually really good and we think she is being well looked after. There are also social activities in the lounge e.g. film club, craft activities, access to a garden etc.
I would recommend the service provider, if you live in their area. If you are based in North East England send me a pm.

I thought assisted living drew the line at dealing with incontinence @Newmum738 , unless the carers who come in help with that? They might refuse to consider her. She really sounds as if she should be in pads 24/7 rather than her underwear (unless she refuses to wear them.) Sounds absolutely awful.

I’m sorry you’re in the middle of this, but one quick thing that could help is switching your Gran to incontinence pants? DM didn’t put up too much objection- she was using the pads inside her knickers and was getting in a muddle and would admit it. Like your gran she isn’t incontinent as such, just can’t always make it to the loo in time. And was creating a lot of laundry! And yes she won’t change her clothes, or she will but stick the soiled ones in the wardrobe with the clean ones.

Ive also got the bed pads, which the carers call kylie sheets, because DM has got to the point she can’t work out how to unfold the pants from the packet so doesn’t put one one after taking off a clean one. As she spends all day in bed that was a lot of laundry from little leaks, but now the pad catches them. I get the Huggies brand because that’s what Asda sells!

just a warning… incontinence isn’t cheap…

@funnelfan it might be worth checking if an incontinence assessment can be done. We had this with my Dad and were buying supermarket own brand products. As he was in a reablement unit they got an assessment sorted and he effectively started getting them on free prescription and continues to do so. Worth asking.

An update that the provider offers both "assisted living and extra care".

I’ll add it to the list of Things To Do!

Night 2 at mum's and I certainly had 8 hours sleep! Not sure about my niece yet but we were meant to swap in the night and didn't so I'm hoping that means mum slept well or managed by herself. It might have been the fact we had an agency in yesterday to quote for night time care at £1700 a week. The savings threshold is a joke. DM has savings above the threshold but they will last about 2 seconds with costs like that! My parents put their house in a trust so selling up would be a nightmare and I'm unwilling to take that on.

@Newmum738 I'm glad you had a better night.
I've been wondering if a commode might help in your situation. In similar times my MIL has had one right by her bed and it's proved much quicker and easier than getting to the bathroom.
You can get absorbent liners for them and they don't always need emptying straight away (depending on what's gone in them!)

@Newmum738 We looked into night time care for FIL and came to the conclusion that the cost was more or less the same as moving into a care home.

That's why needing night time care is often the threshold that means they need to move into a care home. That means the cost of providing night care is spread amongst several residents.

We've now has three weeks of MIL living with us. She is a lot better than she was when she arrived, she's eating, drinking and sleeping now and has stopped having bouts of confusion.

We are in the process of putting stuff in her flat in the sheltered housing and once we have her TV and phone she can move in. BIL was supposed to be coming this weekend to stay and keep her company so that we could do the 500 mile round trip with a van to get her stuff (and some things that FIL needs in the care home) but he has of course let us down. Either DH does the trip on his own or we go in 10 days time when BIL can fit us into his busy life.

Our local area has an incontinence washing service too for bed linen and the like. We don’t use it, but PILs would if we weren’t next door- and the carers do a lot of washing too. They’re forever putting a load on/swapping the last shift’s wash into the dryer.

@EmotionalBlackmail I've realised today that mum's savings are below the threshold. I had thought they would be over so this is good news!

DM has been in a care home for about 4 weeks now, when she discharged there from hospital she was agitated, restless, aggressive and hallucinating and I know was keeping the staff on their toes.

She is now dosed up on risperidone and lorazepam so is asleep or very drowsy most of the time. She is still very confused. Her consultant at the hospital has asked the GP to prescribe galantamine to see if that will help with some of her dementia symptoms and also referred her for a DATscan as her decline was so fast he thinks she may have Lewy Body dementia. As of today she still is not on the galantamine - the letter was sent to the GP on the 11th November.

I'm concerned that the dementia team and social worker are assessing her based on her very drugged up sedated self and not on her 'actual' presentation. I have said this to both of them.

Today the social worker said she will request an additional 12 weeks funding while they await the DAT scan and that she will put DM on a DOLs.

Does anyone have any experience of the sedation DM is having and whether it's actually more negative in the long run? I get that she was uncontrollable when she arrived - but at that point she had capacity, yesterday she thought she was working on a cruise ship, today she has no idea why she is in the care home. She has gone from being infuriating to being asleep most of the time. It just doesn't seem right to me.

@EmotionalBlackmail then I remember that they put their house into a trust 🙈

Mum had an accident today on the sofa. I'm sorry to say, I didn't say anything, I have just observed today. I asked the carer when she and if she had noticed and she said no because mum told her she's fine. I'm not keeping a record of our experiences while the real enemy support is in place because they are likely to say she's fine and leave her sitting in wee 😳