Cockroach Cafe 🪳Autumn 2022 🪳

@EmmaEmerald having a routine and fixed days/times sounds like a good plan.

thank you words
thinking of you at this very stressful time
mum much the same I am thinking this could go on for a couple of weeks yet no one seems to know
2 mouthfuls of semolina yesterday and some juice

Morning all.

orange

Just checking in. Monday was very hard - undertakers, reg of death, etc and involved a lot of stressful driving to multiple locations around Horrid Town. I have never been anywhere with so very many complicated roundabouts, where you get in the wrong lane and you're stuffed. Made worse by hosts of impatient drivers.

Although I was born there, we moved away at ten, so I have no clear mental map of the place, which has anyway changed beyond recognition. Thank goodness for satnav.

I had a bit of a meltdown on Monday evening as a result, which was inevitable I think as I've been going at full,pelt.

So yesterday I took a day off apart from a couple of non stress calls, rested and ate delicious things and slept for over nine hours.

Back at it again today- sorting the wake venue at Horrid Town and taking death certificates to her current account bank which is admin so hopefully not too upsetting. I've confirmed you can just walk in and do this without an appointment ( natWest) . Also the bank will release funds from the frozen account to pay for the funeral. I just have to take the bill in.

Thursday I am meeting the minister. Haven't decided whether to do the eulogy myself or leave it to him. Leaning towards the latter. Also possibly collecting her things from the home depending on how I am feeling, as both those in same village and I won't have to go near Horrid Town.

I need to be back at work on Monday, then the funeral on Weds, then it's probate.

I thought I would be permitted a little more compassionate leave - today is apparently my last day - but they were very flexible in the lead up to her death so I can't complain. I could take some more annual leave ( unfortunately I don't have much of a reserve though) or even sick leave but I don't want to do that particularly. I wfh largely so hoping it won't be too bad.

funnel

Completely understand why you want your mum closer to you. What does it mean for her local metworks though?

I definitely think it will give me more time. Things have varied with mum's health, but when her health is poor, it's spending days there without being able to pop home. Since her stroke, half my stuff is there...but I'm still often carrying a bag on the train etc. I particularly hate carrying a laptop around.

Also sometimes she can't explain what she needs help with on the phone, or perhaps I'm just crap at understanding. So as well as removing at least 8 hours travel time per week, it hopefully removes a lot of the time I spend trying to configure what she said, and also the time it takes me to de-stress from the journey.

Re being on call, I hope she doesn't become the person who says "Something's wrong with the TV, can you pop in", especially as she will know when I'm next in and it will be easy.

I think I am going to try every other day at the start.

Does anyone have experience of assessment or memory tests when the person is flatly refusing to engage with any medical professionals but it's now getting to the point where the memory loss is having a very negative impact on the person's ability to live their life and impacting my dad badly as well?

@EmmaEmerald sounds like positive news. I hope it works out for you. I understand the adjustment to having her in your life every day, but if it’s anything like my situation, she’s probably on your mind daily anyway so it won’t be that big a leap.

My ultimate aim is to have mum live local to us but am getting nowhere. I know why - Mum doesn’t want me to be in the same situation she was with her mother, not realising she is already dominating mine and DB’s lives as we have to factor in “what about mum” in every situation.

What my mum, and possibly yours, doesn’t realise is that when you live two hours away, you lose whole chunks of your life trying to care at that distance. I am spending no less mental energy on mum’s issues just because I’m 100 miles away. It’s my belief that having her local would mean that I could pop in daily and spend a quality 30 minutes with her, and then get on with the rest of my day/life. Rather than travelling, rushing around like a mad thing cramming a weeks worth of chores into one day or weekend, getting home exhausted and then having to face a new week at work. And actually not spending very much time with her at all. So being local would mean that rather than losing an hour a day to visiting/running errands, it would be more like gaining 23 hours a day.

fingers crossed for you that it makes a difference and you can build a life for you as well. How easy will it be for you to fix boundaries with her so that you’re not just “on call”?

MissMarple I'm sorry. Has she always been like this?

Bit of news from my end - I am moving. I will be round the corner from mum. It's a much better area, and lord knows I need a new start after the effect lockdown had on my life. It also means I don't have to spend full days and nights at mum's, and when I arrive, I won't have just spent two hours travelling (and that puts me in a bad mood, I'm not one of those people who likes people watching on a train etc).

So I think it's really good news, so to speak. I am conscious that it means mum being in my life every day though, and that will take some adjusting.

I do feel already that the neighbours have too much responsibility for her and there's been a situation with one set suddenly withdrawing. So I am relieved. It's going to be a mindset change though.

I know my DM can be emotionally manipulative but I still find it very upsetting.

She has lived with my sister & her family for the last 3 years. She is waited on hand & foot by my DSis & my nephews & niece. My sister takes good care of her. I visit twice weekly & take her to appointments, shopping, out for lunch etc.

When I come to go home from visiting her she starts crying and pleading with me not to go home and leave her. I find it very upsetting and difficult, especially as I have just been diagnosed as an insulin dependent diabetic and am using lots of my emotional energy trying to adjust. I havent told my DM about my diabetes - she gets almost hysterical if she gets bad news & was recently taken to A&E because she blacked out. After loads of different tests the A&E doctor put forward "emotional disturbance" as a possible reason. He said it sometimes happens if people get very bad news. The only bad news DM had received was that I wasnt going to visit because i had a doctors appointment. My sis said she got quite worked up about it.

I also find it insulting to my sister & her family who do so much to look after her.

I really don't know what to say when she is pleading & crying.

thank you words
sorry you are also going through a difficult time I dread that bit
saw mum today mainly slept and wailed when she woke we offered her some sips of water which she took I dont think she has ate anything today again so far
Just wonder how long this can go on for. No one seems to know or want to say if they do know
I dont think she realises we ate there and can understand what we are saying asked her to squeeze my hand no response
I feel she is trying to say some things in between the wailing but impossible now to understand her
she us also holding water in her mouth at times instead of swallowing which makes her choke
dementia is truly grim

Sending warm thoughts and hugs to orange and badger.

On Saturday I made a start on the dreaded paperwork mountain. It's all now neatly ordered, ( and stored in the study where it's not encroaching on my living space) and I have a clearer idea of what I need to do, and in what sequence - I've planned a route to the summit in other words.

It will take some time, but hopefully the bereavement service at most institutions will be better set up for probate than the Kafka-esque issues I encountered with registering the PoA. Hopefully.

Lots to do today. Drive over there and register the death, go to the funeral directors to discuss the funeral and hopefully set a date, and check out a potential venue I have identified for the wake.

I also need to collect Mum’s stuff from the home, but I will leave that till another day. One of my friends has offered to come with me to do that, and I think I will take her up on it, as I anticipate that will be very hard emotionally, especially given what happened there in the days before her death.

so sorry to hear you are going through similar Badger
when my dad was dying it was about three days without food and drink
My friends mum lasted 2 weeks without anything at all
I guess you never can tell
so sorry for that everyone is going through it's so stressfulxx

I am so sorry for everyone who is going through this at the moment, and sending warmest thoughts and strength to you all. Look after yourselves- eat, and rest as much as you can.

Many many thanks for all the helpful and sensible tips people have posted to deal with the bureaucracy, emotionally and practically. I have put most of it in place already ( including not having the papers in my living space when not immediately needed, and keeping the house warmer than I would normally.)

@orangetriangle my Dad hasn't had anything to eat or drink all this week but he's still holding on and they said that this part can be hours, days or longer. His breathing has changed today, from regular breaths to holding it/taking deep intakes so I think he's slowly edging towards the end.

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

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.

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

@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.

@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 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.

@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.

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.

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.

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

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.