🪳 Cockroach Cafe 🪳 Autumn 2023

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

@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.

@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.

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.

@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.

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.

@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.

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.

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.

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.

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

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.

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).

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.

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.

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 🙄

Oh Juneday I'm so sorry. It really does depend on the individual and the team leadership doesn't it. And yes, aside from the trauma for all involved, it's such a terrible waste of NHS money.

@Frostine that is madness, MiL broke a heart monitor she was sent home with pre dementia diagnosis but with telltale signs of struggling, she just couldn’t listen to instructions. I think changes are needed to training when 2/3rds of hospital patients are pension age and above, a portion will have dementia, maybe early stages of confusion and struggling to follow instructions. (My mother who is told time and time again the mobile phone issue is the WiFi not a broken phone being an example, would not cope with anything virtual!). Relative in third year of medicine has yet to cover elderly and dementia from what I gather. Hasn’t a clue - tbh they lack common sense and life experience and can imagine thinks tech is the answer….

@SeriouslyAgain MiL is in a nursing home now, been there since last summer. Prior we did see and speak to DN. my last conversation with one reduced me to tears as she couldn’t visit, couldn’t get a Dr to visit and insisted I call 999. I refused because MiL didn’t need or want hospital. She shouted at me then rang me back and says she had called 999. Paramedics the most patient fab team, concluded she didn’t need hospital she needed urine tests and possible infection. What a waste of NHS time and money. This happened 3 times, Dr or DN insisted we ring 999. One crew told DH that majority of their work was more like SWorkers trying to tie up correct help and arranging blood tests etc. Maybe it is a London thing, we are in a London health Trust. I also got a call from Dementia Nurse service, the kindest and most understanding lady who said they don’t have ability to refer patients back to Psych for review, even though we all knew MiL needed a review. Only her GP could do that….,

Update - MiL still in hospital on IV, nursing home don’t want her back until she is compliant with taking her medication - they don’t have IV facilities. Told DH they have had problems with patients being discharged too early from this hospital. DH will visit today.

@EmotionalBlackmail

For her not so well , as she often phones us to ask how to do it ! ( from 200 miles away !)

Eeek I'd heard about those virtual wards and wondered how they work in practice!

Mil ( 88 still living in own home ) has had a chest infection for about 6 weeks , she was a smoker so also has COPD & emphysema . She has had a fall so has been admitted to a virtual frailty ward ( who knew they existed )
We don't live very close and can only see her weekends ) but dh sister can call in more regular. She has mild cognitive decline yet is expected to remember to take her blood pressure ( by supplied machine that links to hospital ) plus her sats and she often can't remember if she's done it or even how to do it.

Nurses wasn't meant to be in capitals 😂

That sounds mad @Juneday . I think you're wise to keep your distance!
But perhaps next time things calm down, and before the next crisis, there's a conversation to be had about District NURSES? In my area, the GPs can't actually do things like injections. But instead of A & E, the DNs come out. The other really good thing about this is that the DN team is then keeping an overview. So unlike the to'ing and fro'ing to hospital and no one really knowing the elderly person, their prognosis etc, the DNs can be more holistic in their approach because they can see how often the person is needing which form of treatment or care and it makes everything a lot calmer.
Maybe you don't have the same kind of thing where you are but I really think it's worth finding out?