Cockroach Cafe 🪳Autumn 2022 🪳

[MereDintofPandiculation]

Welcome! I’ve taken advantage of the relative quietness recently to have a good “spring” clean. And also install solar panels and get in a good supply of logs for the stove.

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.

So sorry Words

Of @Words i am so very sorry. You have fought so hard for her care. Sending huge hugs.🌺🌺🌺

Very sorry @Words. I hope you find comfort in your mums peace.

@words I'm so very sorry. Take care of yourself

@Words I'm ever so sorry, look after yourself and take whatever time you need because there's no rush.

@words

Oh @Words so sorry for your loss.

Thanks so much everyone x

[Flowers] Words I'm so sorry. I hope you feel at peace.

@Words I'm so sorry for your loss Xxx

@Words sorry for your loss x

sorry for your loss words
mum is deteriorating fast she was admitted into hospital tues with suspected sepsis from her care home
many tests later no infection found and blood pressure chest heart all normal for a lady of her age
however in last couple of days she has virtually stopped eating and drinking. When she does take a mouthful of water she has forgotten how to swallow it. Now they are trying to get her to open her mouth to wet her lips it's a hard job
she is either asleep or consistently wailing. They are not treating her in hospital as such.as nothing they can so but then they are saying she is too medically unwell to be discharged today they did initially say tomorrow but to be honest I cant see her coming out of hospital unless perhaps to a hospice. It's very stressful
We too asked for a side ward nope they aren't any available and they are being used for infections patients
Also asked for her to be given something to calm her down but apparently no they dont like to so that guessing in case it then goes pear shaped and they then get the blame

@orangetriangle . I am so sorry to read this. How terribly stressful for you. I am shocked they can't give your Mum something to calm her, that's awful.

One nurse confessed to me they didn't even have enough blankets. I offered to bring one, and was surprised when this idea was leapt on - I thought it might be deemed an infection risk.

In my recent encounters with the system I have experienced three things:

Some absolutely outstanding, selfless, supportive care, including one HCP from her GP practice keeping in touch with me even when she was off duty.

What I have come to think of as 'defensive medicine' governed by rigid protocols with little latitude for decision making in best interests of patient: eg my mother's constant precautionary admissions to hospital for relatively minor falls, because she was on blood thinners, leaving her inevitably more confused, exhausted and disorientated than ever after many hours or days in a and e. I tried to get this changed, but risk aversion always triumphed.

Bureaucracy driven decision making caused by scarcity of resources. Mum was deemed 'medically optimised' and fit for discharge the day before she died, when to my own non clinical layperson's eyes, she was dying. Ice cold, struggling to breathe, eyes rolling, drifting in and out of lucidity.

Yet because her clinical obs were just about ok, they were eager to do a nursing assessment and get her out of hospital, so I spent her last day ringing round nursing homes and establishing what the process would be. We wouldn't treat our beloved pets in this way.

This potential discharge was one of the greatest shocks of all, because I never got the call back from the doctor I had repeatedly requested. The hospital are pursuing why that was and have already apologised

Meanwhile the safeguarding investigation continues into the injuries she sustained at the home, and sometime soon I need to face the mountain of paperwork connected with probate.

Thankfully there will be no delay in issuing a death certificate. At one point it looked as if the coroner might be involved if it was thought the fall related injuries contributed to her death. This is good, as I deal with stressful situations by taking action, and a long hiatus would have been very hard to bear.

@Words I am so sorry to read this. @orangetriangle and @Vcal2017 you are in my thoughts. I think whatever decisions we make, we do it from a place of love and wanting the best for our parents.

Today we are meeting an estate planner to review DF's will, at DF's instigation. We had a video call last week and DF was very impressed. My sister is furious and her stirring husband has rung my DF to question my motives. The planner has told DF that having me and my sister as executors is setting me up for a nightmare as she lives abroad and it would be better if one or both of my adult DDs is named. Sister has gone ballistic. And so on it goes...

Words
I really like the way you describe the state of our healthcare. People often say that we don’t ‘treat dogs’ the way we treat the elderly and people with dementia. The thing that has occurred to me is that because of the scarcity of resources, healthcare in its current state actually relies on the unpaid labour of relatives, which in turn, is the unpaid labour of women. Just my thoughts. My Dad is not doing well in the new home, and as well as the administrative side of his care, now I have to carry the emotional and mental load of trying to figure out how to make it better.

thanks all mum has been discharged this evening back to her care home.
I didnt think she was well enough but they cant treat her for anything and her obs are ok for her age so back she goes
I'm bit quite sure where we are to be honest or what to think I think she has had 2 mouthfuls of food today.
she was assessed by her care home today and they said she was ok to come back but she will be assessed over next couple of days I think she may deteriorate further she has a peace plan now which basically means she wont be going into hospital unless she god forbids breaks something to minimise upheaval for her

just a flying visit but love to all

Words you have summed up the insanity governing these situations so well. It was like this when dad died 5 years ago. I don't understand how care of the elderly and/or care of the dying has ended up here.

at the time, sis and I thought we should start some kind of campaign but we'd not know how to start and haven't had a chance. I think there's a lack of awareness till you experience it, and then when you do, you are in a situation so prolonged and stressful, you don't feel able to do it.

Thinking of you @orangetriangle. I hope she will be more comfortable and settled back in the home, and also it's hopefully a more private and calm environment to visit too.

I said to a very dear friend yesterday it would be easy to start to focus anger on the hospital system and on the manifest failings at the care home but I don't think that would be very good for me emotionally at the moment.

I am seeing the funeral director on Monday after I've registered the death and might collect her things from the home while I am over there. I will see how I feel on the day. Funeral probably week after next. Due to family dynamics all the arrangements fall to me.

I am dreading the paperwork mountain more than the funeral itself. I am going to order many copies of the certificate as I will need them. Things have changed since I did Dad's more straightforward probate in 2013 and I think it's all doable online now. There's a step by step guide on gov.U.K.

If anyone has any recent experience I would welcome any tips - pm me if you would prefer but let me know you have done so as I use the app so can easily miss messages.

Cockroach to everyone. I have only been an intermittent poster on here, but the kindness and support is wonderful.

@Words I'm a couple of weeks ahead of you in this drawn out process. I had a delay in getting the death certificate signed as mum's death was referred to the coroner's office. I had a very stressful few days but our wonderful funeral directors stepped in and spoke to the relevant departments which hurried things up. The funeral took place on Wednesday and everything went to plan (apart from a few local major road closures and our car being blocked in by a belligerent delivery driver who refused to move just as we were about to leave!)

You will be given a guide when you register the death telling you about the "Tell us once" service. You do this on line and it notifies all government run departments i.e council, blue badge, tax office etc. Mum had her savings in various different places and they all seem to vary. Barclays have been the easiest, all done on line but others want a copy of the death cert posted to them before they will advise you of the next steps. That is as far as I have got so far, I am going to use a solicitor to obtain Grant of Probate but I understand it is fairly straightforward to do it yourself. Ours is just a bit more complicated and I need advice on the nil rate band.

Hope that helps, please PM if you want to chat or need anymore advice. Hope you are as okay as you can be.

@Words The paperwork mountain is easier than the funeral, you can take it in your own time and you don't have to perform in public. (Although I'm saying that still not having had mum's funeral, she left her body to the teaching hospital and I'll get the ashes in the summer). I went through probate earlier this year and before that in 2016. Things have changed, now many places are happy to have a phone photo of the grant of probate or death certificate rather than the actual thing. You no longer need to attend the court office and put your hand on your religious item of choice. You need fewer copies of documents these days because in many cases the bit of paper doesn't need to leave the house. If the amounts are small then some banks will release the money with the death certificate alone, I was surprised by a "small" cheque for £24,000.

If you're doing it yourself I would suggest getting a lidded filing box to keep the paperwork in and a notebook to write down what you sent out and who you spoke to. This is invaluable when months in the future you get a tax bill and you think "well I'm sure that I paid that". In very small print at the bottom it said that payments made might not be reflected in the figure - if you're thrown into a panic at the top line you're not going to get to the bottom paragraph. I knew what I'd paid and when because I'd written it down. I found having a lid on the box was important, when I decided that I needed a day off it helped that I couldn't see what I should have been getting on with.

If you need to call anywhere, ask for the bereavement team as soon as you are able, even if they don't have one it sets the tone for the conversation.

The care home was easier than I thought it would be, I went through all mum's clothes with the staff and left anything that they had a use for which was most of it.

@orangetriangle I love the idea of "a peace plan" - I think we should do all we can to make someone's last days, weeks or even months as peaceful and positive as possible.

@Words I'm five weeks further along then @OnthePiste . I will steal some of @Knotaknitter tips, thank you, and I have the lidded box already and vote that it works.
The care home letter. You are so eloquent that maybe a one page summary might be all that you want to send? It can certainly be parked for a while till you find more strength, Your timeline of posts on this thread can be a prompt when you get to that stage. Having been in a failed carehome that was closed down and then DM's last one put into special measures for six months, I've just gone for short bullet points.

Essentially the problems have come down to staffing levels. Failure to recruit and retain a manager, or indeed any manager... Failure to retain trained staff. Losing EU staff has contributed to even lower levels of recruitment. Poor pay. The staff that cared, really did their best. The system is presently broken.
Not having to have anything else to do with local care homes or visit is an almighty relief. It was such a looming pressure and was with me all the time.
My weekend is all about doing DM's final accounts to be sent to the Office of the PG. Seven years I've submitted and paid several hundred pound each time for a member of OPG staff to 'audit' DMs decreasing funds. Now I have to do a 'part year' and submit more money (mine as we can't access DM's) for them to sign DM from their books. Need to get this before I can pass to the solicitor. This stage alone could take seven months to be processed by the OPG although I haven't checked if they expedite it for the deceased.
Be kind to yourself, take extra naps and put on the heating to get you through this.

thanks all went to see mum today and she was sleeping quite peacefully in her bed in her room back at the care home now.
It's so much better for her there than the hospital quieter and calmer They said she is still aggitated when she is awake and also desperately trying to communicate though sadly isnt able to
I think peace plan was a great idea hadnt heard of it before at least now she can stay in the home where the staff know her and are looking after her
She hadnt had anything to eat or drink by lunchtime today and resisted them washing her etc so left it for now
Not sure how long you can go without food and drink?
sorry for all some of you are going through trying to sort things out I dread all that it was bad enough when my dad died and mum has a house to sell as well

orange it might be sporadic. Has she had any sips of water? Of not, she will probably need something to keep her from discomfort from dry mouth. I got dad a spray initially, then asked the hospital and they gave something as well.

emmaemerald they gave her a sponge on a stick moistened with water in hospital I suggested that to the home if she doesnt drink