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.

Caught up with DM this afternoon and she was on great form. She’d enjoyed the Coronation. My dad was a fervent republican but was also fascinated by all the politics behind the throne so we reminisced about him and how he would have been on his high horse today (her phrase).
As a child she knew Sir Karl Jenkins who composed some of today’s music so she was delighted to see him there and got quite sentimental at how proud his Dad (who taught her) would have been.

She seemed more alert and on the ball today than I’ve seen her for a while.

I spent the day with mum who wanted company to watch the coronation. We had some party food and she had a glass of fizz and reminisced about the last coronation. I hardly got to see any of it as I was up and down (she stays in bed all day like the old lady in Allo Allo) but when I was leaving she said how much she enjoyed it, so I guess it was worth it.

Good to hear both.

I really missed my mum yesterday. We would have been glued to the tv with afternoon tea for lunch and a bottle of something fizzy to toast the King and Queen. I watched it on my own and had a bit of a pity party. Then I logged in to FB and first thing I saw was a pic of mum looking happier than I have seen in a long, long time, enjoying a Coronation tea party in the home. I confess my eyes leaked a bit more on seeing her but it was so reassuring to see her looking happy.

That's lovely to hear, all of you who had a positive reaction to the Coronation.

Let's just say MIL failed to mellow for the occasion. It would have been a bloody miracle if she had.

DH losing the plot with social services over MIL care home costs. She went in to the home last June. Savings split 2 ways meant she was below the limit and fully funded. FIL died 5 weeks later which meant she was now only just over the limit and needed to be self funding - literally 2 weeks of fees would put her back in partially funded.
DH had POA for FIL but his dad only sent in the forms for MIL at the beginning of June as FIL was convinced she would die before him. MIL is profoundly disabled and unable to access the money that was in a joint account, now her name only. Took until mid December to be registered. DH sorted with the bank, refunded the money we and BIL had paid out for funeral, house clearance etc and sent everything to the council at the beginning of January to sort out what is actually owed. Bank statements, invoices- the lot.
Every month he gets an invoice for full fees. Every month he goes back and they tell him it will be sorted this week. They've just asked for the invoices he set them in January! Luckily he emailed scanned copies so he is just forwarding the original email. They are now chasing for more money than MIL has in her bank account.

I feel so pathetic admitting this, but I'm starting to have bad anxiety attacks before I go to visit my DM. Today I got in the car and felt so bad- legs feeling weak, hands shaking, heart pounding - that I don't think I should really have been driving.

DM is so relentlessly negative. I get that being old & infirm sucks but nothing seems to make her happy or even contented. It is rare that anyone does anything right. She's downright unpleasant about my DSis who looks after her. I find it distressing to hear the way DM talks about her. She shows no interest anyone or anything except her own perceived woes.

And when I go to leave she starts pleading with me not to go. I was there today from 2pm until 10 but still it wasnt enough. I wouldnt mind but when Im there she's asleep for most of the time so I sit doing nothing. If I go to talk to DSis or one of my nephews she gets in a strop.

And while I'm there the dog is yapping at me, sometimes that goes on for hours. It shreds my nerves.

I'm so sorry to come on here & complain but irl I soak it all up & act nice. The frustration has to leak out somewhere.

@MissMarplesNiece you are not pathetic at all. I get bad anxiety too. It’s getting to the point that cbt style calming techniques are not working on the physical symptoms anymore and I think I’ll have to ask the gp for medication.

I’m sorry, it’s shit. It’s not entirely surprising - what other situation would you expect to support someone with effectively a life limiting condition (sorry if that’s a bit blunt) but for an indefinite period while dealing with all the complicated family dynamics and emotions. It’s not surprising that our bodies and brains are starting to show the strain. And anxiety is an entirely natural response to the brain having to cope with the adrenaline and constant “red alert”. vent away if it helps.

@funnelfan I've had cbt too & in this situation it doesn't seem to help at all. I'm quite good at using it in other situations but in this case it seems useless. I go see my mother knowing that I'm in for 8 hours of relentless depressing grind all with the background of a yapping dog that no one can make be quiet. Just thinking about it now is making my heart race. A couple of weeks ago I pulled up in my car and it took me nearly an hour to "psyche myself up enough" to get out of the car. I love my mum but she doesn't make things easy.

@MissMarplesNiece, I know the feeling you describe all too well with the anxiety that lurks but really ramps up when you see them. Sorry you are struggling with it.

It’s got to the stage that I now take anxiety meds before I see my parents to help me cope and I am returning to counselling in the next few weeks just to have a place to talk it all through. CBT can be so helpful with some things but not this so much.

Are you at the point you feel talking to your GP might help?

Regarding anxiety, I don’t know about anyone else, but I usually find myself being bright and breezy and positive during my visit, even though inside I’m feeling the opposite. Do you think that mismatch makes all the anxiety worse? Because it’s not being let out?

Just thinking about @MissMarplesNiece psyching herself up to get out of the car. My coping mechanism is that I go out to run errands and find they take much longer than necessary as I will do things like get a takeaway coffee and browse my phone in the car park while drinking it. It’s annoying because then my visit is much longer than it needs to be and I get back home later (I live 100 miles from my mum).

Living much closer, our visits are fairly routine, so I don't feel particularly anxious about them. MIL is low on inhibitions now and prone to emerging from her toilet naked from the waist down wanting help, and DH isn't comfortable about dealing with that by himself. So I usually go too. And we both wonder every time whether it was worth it, and beat ourselves up for even thinking it.
But really. We're disturbing her, either from her wandering, or sitting in one of the lounges, or half dozing on the bed. Admittedly sometimes she's ready waiting in the hallway, shouting abuse and insults, when we get there. Even on the rare days when she can both place us and muster a show of being glad we're there, it's clearly an effort, and she can't keep that up for more than a few minutes. She's either relieved when it's time for us to go, or upset.
If it goes very badly, there's always tomorrow. We don't have the same pressure to make it count that we would if we could only go a handful of times a month, or less. But God, do we spend some time thinking about her. And FIL as well. He lives alone and obviously doesn't have the same high needs, but his life revolves around visiting a now abusive spouse. We all feel an obligation to try to make his life a bit more pleasant too.
I could carry on in this vein for pages. You all know how it is.

@MissMarplesNiece similar here - I find myself stalling and putting off. actually going into the care home. It's hard.

I went to see my mum today and found it a bit grim tbh. She says the staff are nice - they had a coronation party which she enjoyed. But she says she is bored and that there's no-one to talk to - and she seems much better than in March so I have to keep reminding myself that she cannot cope at home. She repeated the same things many times while I was there, and still can't switch on her radio (one button).

I am caught between demands to pay, the fact that Mum doesn't have capacity and my lack of legal authority. But I feel that this actually isn't my problem and the care home needs to sort it out with the LA. I have Court of Protection application more or less ready to go.

I am aghast at the cost - I was expecting £1000+ per week, but this is closer to £2k a week and mum will burn through her savings pretty fast. This is London and it's 24 hour dementia care - is this normal? I wish she'd gone on more holidays and spent her money on nice things.

@rhetorician £2k a week!! Good tip about the holidays. We're so programmed not to waste money it's a habit hard to change!!

Dad is just over £1k per week for severe dementia care but he is about 200 miles from London. And that’s pretty much the cheapest in the area, the others were 1.2k+ a week. It is frightening.

If she had spent all her money, she might well still be at home with limited funded care visits, though - at least it is for her comfort now.

@SheilaFentiman tbh I didn't look into in any great detail but she isn't super happy there - bored and I stimulated although I think the physical care is very good. The big upside for her is that it's local, although in practice there aren't that many people local to her to visit left. I have seen another home that's about 4 miles away which is £500 per week cheaper which would take the pressure off in terms of financing. My point being that I wouldn't move her on grounds of cost, but if I can find better or equivalent care for her needs at a lower price I would consider it...

I.e. she claimed that it was "remote" even though it's half a mile from her house. But it probably feels like it's on mars from her point of view

We've been looking for mum. The cheapest was from £1200, the most expensive from £1400. That was for the lowest level of care.

@countrygirl99 that would chime with my experience, plus London prices

@MissMarplesNiece MiL about to go into London care home also in region of £2K per week atm via social services with trial stay then we assume 12 week disregard (under £23K savings) then will wait and see about complex property valuation, lease less than 85 years amongst them. We feel it is the right thing for her BUT if had time, LPA, etc could find a cheaper home nr to other family outside on London. System isn’t set up for this, a space is available and we can’t risk loosing it so this all happens before we know how the financial assessment will go. 🤔. So LA spends PWD money for them. I can’t think of other situations where this happens.

Mum is Fens so the property cost element for care homes should be low compared to London.

and she seems much better than in March so I have to keep reminding myself that she cannot cope at home She’ll be getting medication bang on time, and regular nutritious meals. It has an effect! Remember you won’t be able to achieve the same at home.

I realise I put off seeing Dad. I set myself a frequency of visits and stick to it, but I don’t go in more often than that. Does anyone look forward to visiting their elder?

My dad is sweet, a lovely man. But not the man I knew. He was always very serious, wouldn’t waste time reading fiction or watching television. But he’s hung on to the television they produced for him to watch the Coronation, and was glued to daytime TV last time I saw him. Not the man I knew at all!

@MereDintofPandiculation no looking forward to visits to my elders and very much anxiety inducing. Even my DD asks me if I needed to cry when I leave their house.

Mum was downright rude to me when I went to help her take dad to their coronation street party on Sunday. Still they both seemed to enjoy themselves and it was dad's first social occasion since the 2020 Covid lockdown!

Lots more visits over the next couple of week since mum has decided to have a big clear out. It probably has more to do with my sister coming to visit later in the year than my suggestion that they downsize.

I have hardly seen mum for the past couple of months - my cousin who always takes me has been isolating ready for her daughter to go into hospital and then I had to isolate in readiness for an op myself and the friend who would otherwise take me has been ill.

At first it was a relief but now I find I am desperate to see her. I check the home's FB page daily in case there's a photo of her and I am on edge waiting for my uncle to phone after his weekly visit. Both ops are now over and we are both recovering well. My cousin has gone back to work and we hope to get back to visiting next week. I was always hugely stressed about visiting but I am really looking forward to seeing mum. In the photos she looks so happy although my uncle said she was very tired and could hardly talk when he saw her on Tuesday.

Mum is no longer interested in tv although it is on in the living room all the time. When they posted a video of singers from a local school she was clearly engaged and enjoying it. Everything about her has changed so much.