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.

Oh @IthinkIsawahairbrushbackthere that is so lovely to read. What a special day. It sounds like you’ve found a place where your dm is very well cared for. I bet it did a lot for the other residents too.
@SunshineGlamourIfOnly can you find a way to communicate directly with the carers? I ended up telling them not to cancel any calls/ not do things unless I told them- not mum. A whiteboard for messages helped a lot .
@MissMarplesNiece i completely get what you say about resentment , frustration and guilt. It’s so hard.🌺

So many frustrations and sad stories, but lovely to read @IthinkIsawahairbrushbackthere post. I feel MiL is also in a kind place, although she now has another UTI so was aggitated and difficult on last visit. Then today there was a call to DH that there is a wound on her left ankle and metal is visible 😮🙁. It wasn’t the usual very clued up senior nurse - DH whilst concerned that the 6 month wound has opened, he said that will be from her surgery in January - can you ring orthopaedics at The hospital. (We don’t have PoA on health). Concerned now on several
fronts…. I dug out copy of letter with consultants name etc and DH referred this back to nursing home🤞 it won’t mean another night in hospital. Care is so good, thorough and kind but MiL is frail and the surgeon said when he operated that she has tissue paper skin. Just glad she is in a nursing home not still at home with Carers. I am sure other have better experiences of Carers, and for many it is the preference, but it also assumes family can fill the gaps. Which isn’t always possible.

We had a phone call from the home on Saturday saying they were just waiting for the ambulance for Dad. When I got there, the nurse with Dad was already past the end if his shift, but said “I’d stay till midnight for Mr Dint”. Care homes can be very caring places.

(As it happened, ambulance people were able to do a wider range of tests, and Dad, to his great relief, was able to stay where he was.)

@Juneday hope your mil improves soon- she does sound v frail.
@MereDintofPandiculation so glad to hear your df didn’t end up in hospital- and how lovely of the nurse.

So heartwarming to hear that lovely care is still happening.

@MereDintofPandiculation great to read this! There are lots of people who give amazing care.

To celebrate the positive, I found a personal assistant for my DM who is wonderful. She's a great support to mum and me, going above and beyond what we actually ask of her. It's making my life much easier and mum's that bit happier.

Hi hope it’s okay if I join in. Wondering if anyone else has been in the situation I find myself in. DM 88, recently diagnosed Alzheimer’s, lives alone not exactly in the sticks, but not in a town/village.

Before Christmas her (even older) partner decided to move into care, so she thought it would be best if she did too (not together - they weren’t getting on by this stage - toxic relationships). I found a lovely care home. Took her to take a look and she decided it would be fine. The first week she was fine, and then all hell broke loose. She was abusive to the staff, ‘escaped’ more than once into sub-zero temperatures and they asked us to remove her, or they would call the police! We (foolishly in hindsight) took her back home and found live-in carers. They lasted a couple of months until she decided she didn’t need/like them and could cope on her own with one visit a day from a local carer, so they went too …

To be fair to her, it all went okay for a few months. I do her shopping and appointments as I am quite local to her. My DD lives a couple of hours away, but visits when she can.

It was, of course, too good to last and she has now ended up in hospital after being unable to get out of bed in the morning (was taken in for XR as even the paramedics couldn’t get her out of bed). No fracture, just worsening arthritis. She is now well enough to go home, with a care package in place. Problem is that Social Services can’t find anyone to do the care package. It’s now been nearly three weeks, she’s desperate to go home, swears she’s better and could manage fine with her usual carer, etc. Carer comes on at 9 (can’t change this). Mum says she’ll just stay in bed until then. But I know she won’t - she won’t remember so she’ll wake up at 6, won’t be able to get out of bed for a wee (also continence issues)and will phone me to go and help her as ‘it’s an emergency’.

I’m not sure what I’m asking really. Has anyone been in this position and how was it resolved? Needless to say, she doesn’t want to go into a care home, and even if she agreed to live-in care again, she’d change her mind after a week and she couldn’t afford it long term anyway (£5k+ a month, and normal household expenses on top).

I think she probably still has capacity, although her short-term memory is shot to pieces.

Oh yes, the hospital is an hour away from us. I’m visiting every other day. She also rings me at least twice a day asking when she’s going home …

@Luminousnose I don't think anyone would blame you for stepping back and leaving to the hospital.

Sorry, posted as I was jumping on a much delayed train.
You can't fix this so you might as well make sympathetic noises and let others take the blame. At least they get paid for it and don't have the emotional turmoil.

@Luminousnose NHS, and Social Services if rehab etc involved, have a duty of care and they should not send your DM home until a decent package is in place with sufficient visits. They will be looking for an agency with an availability and it can be slow. Depending upon how well or not she is will determine how many visits etc. If the hospital organise the care with the patient/client doesn’t in our experience get much choice of timings. I would ask who is coordinating discharge and if they are confident your DM has capacity just in case she tries to change the care package. 🤞 she gets the right care with patient experienced Carers, you can add to it of course with other paid help - carers don’t wash linen, or cook (other than microwave) or clean. Try and do that if you can, unless you are happy too - I found the piles of washing hard as I needed to bring them home and return them. I bought lots more bedlinen ! I believe this care package is 6 weeks max and after that if it works how it is funded will be reviewed. Sadly we had issues with the care including an annoying number of different staff which caused more confusion, but I understand there is a high staff turnover for a tough poorly paid job.

I hadn’t realised homes could ask people to leave until my SiL had upset with her father - a mild mannered kind happy man who changed completely with late stage dementia and the staff could not cope. 🙁

@countrygirl99 and @Juneday thank you both for your thoughts and experience. After posting I spoke to Social Services about where we go from here and SW told me that they have put her on the ‘unmet needs’ register and will basically keep looking. In the meantime, she will stay in hospital - he said that they no longer ‘put’ people in care homes as they feel generally it’s too upsetting for them, particularly those with dementia, and they are better to stay in their own homes if at all possible. He said it is the hospital that feel mum would not be safe to be discharged without care in place, although he will see if they feel she absolutely needs 4 visits a day. Interestingly hospital also feel that she has ‘fluctuating mental capacity’ whereas we assumed she still has capacity as long as she can tell us what she wants - possibly it’s because she is in denial about the risks of going home without proper care in place.

@Luminousnose one thing we didn't realise is that it's sometimes cheaper to have Social Services arrange the care even if they bill you. Mum's carer is a cheaper hourly rate that way and the minimum visit times arranged privately are in excess of Mum's current needs. It would actually cost us 3 times as much with a direct contract, though she only has one check in visit a day at the moment. Might not work out the same but worth checking.

@Luminousnose that all sounds sensible particularly their assessment of capacity. We ha mid opposite where they said MiL had capacity they assessed whilst ward had been closed due to Covid and we are certain she told them she lived in a house with her son who did all her shopping and cooking! That was 40 years ago! But when Social worker visited her at home weeks later she sat with her for a good while and chatted and concluded fairly early that she did not have capacity. As MiL had less than threshold in savings her 6 weeks were free - after that they take from income, if you stick with it. Although MiL went into a home we saw the assessment and it looked fair and reasonably priced. And we were told we could have more say and maybe could have changed agency or at least tweaked the timings. I did all I could to make Carers job easier, asked them what to buy to help their job, hand wash, hand cream, biodegradable wipes, etc and tea, coffee and biscuits. They would leave notes for shopping etc. We were also there to meet MiL when she was bought home and met Carers shortly after. That was a bit of a shambles as day and time changed twice and on the day after an hour DH rang and was told she had been delayed two hours (they hadn’t thought to tell us) they couldn’t understand why we needed to meet her. Dementia, in a wheelchair, and still positive for Covid, on 4 meds…. And discharge said they would leave her in an empty flat and didn’t coordinate with Carers…. Do ask about that. We were shocked.

Rejoining...my sister and I are caring for my nan who is 98. She has always been in very good health except for a minor blip with a broken arm last year. She was walking to town 3 x a week until recently. She has developed a severe bad back and mobility is now bad. This has made her depressed as she is mourning her old way of life. Doctor have been to see her at home - prescribed painkillers and told her she must move regularly to ease her back. She just seems to have given up. Not eating, saying she wants to die. Me and Sis both work full time and have young kids but have managed to go in every day between us, do her shopping, washing etc... my neice has been in to clean but I think it's time to arrange carers once a day. She is resisting - we don't know what to do next 😢

@Juneday As MiL had less than threshold in savings her 6 weeks were free That’s different from what we were told. Usual arrangement is the first up to 6 weeks is “reablement” paid for by NHS and therefore free, no matter what your income. If during reablement it’s decided they’ll need long term help, care is moved over to Social Services and becomes payable from day 1.

@MereDintofPandiculation you are right, it all got confused on my mind as SS will only talk to DH but first discharge coordinator from hospital who was kind and helpful talked to me and she was looking for rehab in a nursing home until second coordinator got MiL reassessed and changed the plans. It is confusing because when home SS spoke to DH, as did District nurse who also would ring me and dementia nurse team who were of course very knowledgeable and they rang me. We were asked to fill in financial assessment as PoA, we got a letter we cost of home care visits two weeks after MiL entered nursing home found by SS for a temporary trial visit. Then a letter with the fees for this stay, then an invoice confirming direct debit. She is in her 7th week and the direct debit hasn’t been applied and I don’t know when the temporarily period officially finishes as this is not in writing anywhere. The conclusion is 99% certain this will be permanent. But without PoA on health and well being we don’t officially get a say. Decided to sit back and wait knowing she is in good hands. We were told different local NHS trusts are changing the rehab period and shortening it? She also had rehab in a hospital, a cater for one week and then another fall and hospital stay and Covid that led to second rehab at home with 5 week wait for physio 😮. So I admit I get a bit lost in the detail of it all. 🤔

Sorry typos everywhere 😁

We were told different local NHS trusts are changing the rehab period and shortening it? Our rehab was pre-Covid, and in the small print it said "up to 6 weeks" - once they'd decided either it was no longer needed, or that long term carers would be needed, then it was over to SS even if the 6 weeks wasn't up.

Wouldn't be surprised if it was being shortened. We were told that it was a "once only" - you couldn't keep parking your elder in A&E to get another bout of free care on release. Found that quite offensive. But if they're thinking that people are using rehab to avoid paying for social care, then it wouldn't surprise me that they were trying to reduce it.

@MereDintofPandiculation I agree it is offensive, and I think MiL may have had the ‘benefit’ as first rehab period with really sweet kind carer lasted just over a week before distraught carer found MiL on the floor cold and delerious, not something anyone would want. Even now I believe with longer care visits and the crash mat delivered that didn’t arrive because of a shortage, MiL might still be home, or at least not had a second period including a week more or less in a corridor. 🙁. I don’t know the answers and suspect that funding issues between NHS trusts and LA’s are an issue. MiL first hospital in one trust, second time in another …*. And records weren’t shared. Also just discovered nursing home had no record of surgery in January - we haven’t seen a discharge letter. Communication, shared records and more joined up thinking needed all round.

I had dinner with a surgeons recently who agreed such things are costly and inefficient but explained that junior doctors are scared to miss something so go to is blood tests before discharge -result MiL another night in hospital waiting for results whilst agitated and confused. 🤞 such things are reviewed and improve over time.

There's been talk off and on for years that Heath and Social care should be more joined up. I remember when we had DHSS - Department of Health and Social Security. I don't know that things worked any better then. But the current health system can't cope with the elderly. Hospitals can't cope with feeding and toileting the frail elderly, or turning to prevent bedsores or even, apparently, giving them 30 secs to formulate a reply before shouting at them. And even for the independent elderly, the current health system whereby you see someone different for each facet of your health is no good for anyone, but even worse for the elderly, when it's quite possible to have several conditions with overlapping symptom sets, eg asthma, heart problems, high blood pressure, underactive thyroid, anaemia.

Social services for the elderly I feel function better, they're just coping with chronic underfunding.

Your comments about documents - it always enrages me when people get on their soap boxes about too many admin staff, all the money should go to nurses and front line staff - the foundation of good care is knowledge, and if there aren't enough admin staff to make sure that all the information about the patient is where it is needed, good care cannot happen. In theory better IT systems will solve this problem, but we're a long way from there.

if you feel a hospital admission causes more harm than good to your often frail elderly patience with dementia you can put in place a special care plan which means they will only get admitted to hospital if something can actually be done to help them ie they break a bone or something like that

@orangetriangle is that a respect plan?

That's so sensible! Just not sure how much attention risk-averse carers and ambulance staff will pay to this unless everyone really makes a big noise. I am going to get a large poster printed!!

It's called a respect plan and needs to be made by the GP, they also check that the elderly person has capacity to agree to it and knows what they are agreeing to. It's normally applicable when the elderly person has a condition that isn't going to 'get better' It can also be applied as a 'best interest' decision if the elderly person doesn't have capacity and is written after a conversation with the holder of any power of attorney or where there is no power of attorney after conversation with those caring for the person
For example my MIL is 97 and now very physically frail. The care home have put in place a plan that she will not be moved to hospital.
@TheIoWfairy it's not about having a poster, the documentation is held with the persons registered GP and visible to ambulance etc in the same way a do not attempt resuscitation is visible .