🪳 Cockroach Cafe 🪳 Autumn 2023

[MereDintofPandiculation]

I’ve just done the autumn deepclean, brought in a load of logs, and made sure we have plenty of rugs and throws, and toasting forks and marshmallows. I’ve even brought in extra rugs from the Good Daughters’ room under the stairs - they’re not needed there, no-one ever uses it.

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.

At least there’s one problem we don’t have to deal with

Virtual wards sounds like a typical strategy set up to save money that will actually cost way way more money in the long run and across different agencies 🙄

MIL was on a virtual ward after a run of hospital admissions for chest infections/heart failure/ kidney failure that distressed her. It meant she stayed in the care home for her last few weeks but her care was run by a hospital team rather than the GP. It worked well for her.

Countrygirl, that sounds like it would work for MiL, but not sure it is being offered. MiL would be more comfortable back in nursing home but they seem to have asked DH to act as go between until they are confident that MiL is complying?

We don’t have PoA on health so it is a grey area. DH a little anxious initially about whether he should be consulting brothers too. When you have a family with so many not talking it gets a bit messy.

i know many on this post have had far more problems and with their daily lives turned upside down for far longer. I am full of admiration.

So sorry to hear your update @Juneday

We are trundling on, DM now 9 weeks on from her fall and pelvis break. Finally able to get out of bed and weight bear and walk with a zimmer, but very weak and has lost loads of weight and muscle tone. Her Parkinson’s is a complicating factor as we don’t know what her baseline mobility is any more.

Also still delirious and unpredictable. 2 weeks ago she didn’t know me, last week she was argumentative and out of sorts, and yesterday she was utterly charming, I was the best daughter ever and she thanked me for visiting her so often. I want to bottle that for next time there’s a horrible visit.

Dad has decided that he can’t cope with her coming home yet, although the long term goal is for her to get back home. We had a meeting with the physios and OT yesterday who agree that she is medically fit but needs more rehab, so they are referring her to a rehab hub or care home with rehab beds, whichever has a bed first for her. Thanks to reading the threads here we were able to be very clear that we would not be able to support her at home even with a care package (I am 3 hours away on a good day, Dad is 82 with his own health problems, my brother is invisible in these situations).

If you can afford it, and can find one locally, a physio with specialist elderly care experience and pilates knowledge can work wonders.

We found the NHS physio completely useless for dad (Parkinsons + long period in bed after an infection). He didn't improve at all with them and couldn't even sit in a chair or lift a spoon when they signed him off the service, but the private pilates-trained one got him back to a decent level of independent mobility.

Not cheap though - it was £90 a visit and that was 5 years ago.

Thank you @NoBinturongsHereMate - I will pass that on to Dad. They are in the north of England, if anyone has any recommendations.

Good luck @OhOneOhTwoOhThree , good physios are a godsend. We have loads in our area because it is a big rugby area! Friends’ daughter NHS training sounds excellent so there should be good ones who maybe do a bit of both. The OT has loads of equipment they can organise, although we found there were waiting lists so make sure you help keep an eye on that from a distance.

Struggling with maybe anticipatory grief as my mum and and step dad have experiences with cognitive decline, epilepsy, persistent pain, stroke, isolation. I am at the end of my tether.

Thank you @Juneday. Fortunately my parents have all the adaptations anyone could wish for after my Mum broker her femur a few years ago. Dad is on first name terms with the OTs in their area.

@Deedeedoe that sounds tough. Although the situation with my Mum is really difficult, at least it's only one of them. I'm dreading anything happening to my Dad.

Good to hear re OTs, first one for MiL was defensive and difficult, second was fab, kind and a sense of humour. Funny thing my father at one time had a part time job organising training and funding for OTs, in 1980s.

I visited MiL in hospital and am very confused and concerned, DH had a long chat with ward sister I think and expressed all worries. Was told MiL coughed and chocked on water hence still Nil by Mouth, she has been shouting so she has a bed bed by the window which has calmed her as she can watch the planes. Nurses were surprised she needed help with mobility?? She didn’t really know us, her eyes weren’t focussed, she is on IV fluids etc. Likely to stay a few more days.

DH thinks there be a recovery when antibiotics have kicked in, she has been on them 5 days now. His DB asked and He told him no need to visit. Am I being negatitive to think he might be wrong and doctors aren’t being straight with him? Dr will review tomorrow, I hope DH gets some honest answers.

@NoBinturongsHereMate Can you remember how many sessions of physio your dad had and how often the physio saw him? My DM could do with something along those lines.

Twice a week from April to July. They said they generally got best results with 3 a week, but given his frailty (fairly advanced Parkinsons and had been hospitalised for a month with sepsis at the start of the year) thought that would overtax him.

At the start of that period he had to be moved with a sling hoist and use one of the medical extra-support chairs..Couldn't support himself well enough to sit in a normal armchair or wheelchair, couldn't reposition himself when he slid, couldn't lift a spoon to his mouth.

By the end he was feeding himself with only a tiny bit of assistance cutting up meat. Could stay in his wheelchair for most of the day and get himself around the home without assistance. Was stable enough in the wheelchair that I could take him out for trips round the decidedly bumpy and hilly park, and not eject him when we hit a pothole at speed. Had moved from sling hoist to standing hoist, and was waiting to be signed off to use the stand aid.

At that point he got an infection and died, so we didn't get to see how much further he'd improve but he was still progressing well. I reckon with another month he'd have had a good shot at going back to the Zimmer instead of the wheelchair, at least for getting around his room.

@Juneday that sounds really difficult. I wouldn't think that the doctors would hide anything from your DH but the nurses might be a bit evasive and want to wait until he has spoken to them.

After 4 weeks with no laptop I am back in the land of the living! My DU who has faithfully visited DM every week is struggling now that she is so frail so I am visiting with him so see her twice a week. She has really gone downhill. She seems to have episodes where she just zones out - her face freezes for a minute and then she carries on with eating her jelly or whatever. Although she swallows what I feed her and she can drink through a straw she is constantly drooling. She has developed a sore under her chin which the staff are treating but this constant drooling was a change between Tuesday and Friday.

@IthinkIsawahairbrushbackthere sorry to hear, it’s hard to watch isn’t it. There was a lady yesterday being fed ice cream by her daughter. She seemed to be enjoying it.

DH admitted MiL looks worse than when she was admitted - although he got more answers so that reassured him a little. It was not great when we got to the car park to hear man shouting very bloudly this is a effing awful hospital😮 several times over.

I have emailed lovely senior nurse at Nursing home to keep her in the picture. MiL apparently mentioned teddy bears to DH, I am going to collect one of her many from her flat so that DH can take it in, that’s my contribution for now.

@NoBinturongsHereMate thanks for posting that. It's nice to read something about how life can improve.

@Juneday nice idea about the teddy bear. Each of us can only do what we can, and that's such a nice thing to do.

@NoBinturongsHereMate thank you for that account of your Dad’s progress. Timely for me as we heard today that Mum is moving tomorrow to a third hospital for rehab and recovery. Cue more confusion for a few days.

@NoBinturongsHereMate I hope the move goes as well as it can and she gains some benefit.

I think that was meant for @OhOneOhTwoOhThree . And I hope the same thing - fingers crossed for useful rehab and minimal confusion.

@IthinkIsawahairbrushbackthere sorry to hear about your Mum. Just wanted to say in case you don't know, that the constant drooling can be controlled. There are patches they can use - though these seem to be pretty much unavailable at the moment - but there are other alternatives which work really well. My Mum spent several months in hospital after a stroke and nobody offered any solution so I just thought nothing could be done. Then I brought her home and a visiting dietician mentioned that it could be controlled , one prescription later for some drops and what a difference it has made to her.

@IthinkIsawahairbrushbackthere

So sorry you're going through all this and sorry to just butt in, but I've got a thread going at the moment and am scouring this board for information.

Your post describing sudden freezing episodes stood out for me, as my SM experiences this - she had this on New Years Eve and her mental health has gone off a cliff. She's currently hospitalised with a vague diagnosis if delirium.

Can I ask if you have had any medical explanation given for this as it is being somewhat dismissed in our case?

Thank you in advance and solidarity ❤

MIL had freezing episodes after her stroke. It was like she was switched off for a few minutes then switched back on again a few times a day. Anti seizure meds pretty well stopped it.

@countrygirl99

Thank you - most interesting. SM hasn't had strokes but aneurysms in her brain and neck have been untreated as she has disordered thinking and refused treatment as she's precious about her hair.

She had an episode of freezing etc about two years ago and was in hospital for ten days, but stabilised.

She had similar on NYE but the doctor she saw at the hospital just advised rest.

HCPs are convinced the delirium she then developed fir two weeks was down to UTI which has been treated but I don't think a UTI untreated for two weeks would have only shown faint markers and none in her blood.

The delirium persists plus other delusions related to long term mental health and they have dismissed the aneurysms as irrelevant as she hasn't had blinding headaches....

Sorry I'm rambling again x Am a bit at wits end fighting unsafe discharge plans as my poor Dad is physically unwell and couldn't supervise for 24 hours a day even with the vague "care package" of visits 4 times a day.

Going into battle again this afternoon....

Thank you for that though - much appreciated x