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.

@WorriedAboutMum2023 also local
Citizens Advice worth a call. Good luck, things are harder when siblings are not on board.

Yes, you complete it. What you are telling them is her needs, and her needs don’t change just because care changes. Remember the mantra “A need that is met is still a need “.

No, I will try to do that today as I'm setting aside some time to look at the forms. I have asked my sibling, my dh and bf and each one has let me down. I have explicitly asked for help and or support and not got any. Which I guess sets the tone for how much support in turn I can give mum. Right now I feel like doing the lpa is a mistake. But I know I will regret that later as I need to know at least know the facts and I don't have the facts and never will without talking to the gp.

When you do the lpa can just one of the attorneys communicate with health? Do you only need all of them if it's about choices? And only once mum has lost capacity?

Part of me thinks this is going to be a massive mental load on me. But surely its just making sure bills are paid by dd and making health choices after mum losses capacity? Mum is already talking about refusing a lumber puncture for the hydrocephalus test. If I can I want her to ask the consultant about pros and cons of refusal. But if she refuses then delovops dementia and capity of health choice fell to me, it would set the tome of guessing what mum would choose going forward. So no tap means no shunt means letting dementia develop and nature taking its pain free course. I'm mulling this all over 100% on my own.

I can't work out if I'm a drama lama, catastrophizing, making a drama where there is none or if everyone just in denial. For context my sibling hasn't seen mum for years. She is extremely low contact. In fact it was 2020.

Sorry, I misread, I was talking about AA.

But same should apply for financial assessment up to a point? You’re filling it in to say what resources she has. Only difference is that house isn’t taken into account if a) she’s living in it, b) a partner is living in it

@WorriedAboutMum2023 The finance LPA has a box to tick as to whether decisions are made “jointly” - both of you have to agree to every decision, or “jointly and severally” - either of you can take a decision alone. I haven’t looked at Health recently enough to know if it has the same box, but I think it must have because DH doesn’t get involved in any of my discussions with nursing home.

Don’t worry too much about Health. You’re not there to make the final decision, you’re there to make her voice heard. If what she would have wanted isn’t now in her best interest, it won’t happen. However, you will have made sure it was considered. But you won’t be alone when decisions have to be made.

I think you’re just worry because of the formality of the forms. But in truth LPA is a liberating thing, it enables you to do what you see needs to be done.

Thank you for that. I will sit down in a bit and start reading rather than worrying. At the end of the day might might change her mind and refuse to sign them.
One step at a time.
This step is hard as I'm seeing this is the beginning of the end. My sibling on the same page as me and their reasons are theirs alone.

On a "lighter" note, this afternoon mum told me she needs to get someone in to sort the pond pump because it broke last Easter and dad didn't get round to fixing it. Well, that's not surprising seeing as he died in the January!
Actually the pond pump broke Easter 2020 but dad was already way too unsteady and frail by then for that sort of job and I've spent the last 3 years suggesting getting someone in only for mum to tell me she is pondering what she wants.

MiL quite calm today but also apologised that she felt too tired to get up and go to church and wanted a lazy day, then said she wasn’t really that religious anyway. 🤔. She hasn’t been to church for years; but I reassured her it was her life to do as she chose. A neighbour bought her some lovely flowers, roses and tulips from Tesco - well I think it was her neighbour, they were lying in her bedroom (not where she sleeps atm), so I put them in a vase where she could see them. I can only assume the neighbour gave them to the Carers, MiL hadn’t a clue.

Would appreciate advice on a rather bizarre problem. My parents have 2 wheelie bins, the 'bin men' are refusing to empty them and have left a tag on the bin that they won't be emptied until my parents start putting the right things in the right bin!!!
Mum is blaming the carers as apparently they kindly put the rubbish my mum keeps throwing in a laundry basket in the kitchen out to the bins, but it's not sorted in any way, so the council are objecting.
There's no way my mum will remember to sort the rubbish properly even with visual prompts or a list.
Any ideas lovely people... None of us live close enough to sort this out..

I would be tempted to ask the council to take away any recycling bins and just have a general waste bin.

Sorry no advice but starting to have the same problem so watching with interest. I’ve got as far as taping the recycling guide from the council to the lid of her kitchen bin, but that won’t help when mum goes and puts her used Tena pants in the recycled cardboard bin/garden waste/glass bottles and cans.

i visit most weeks and give the bins a quick check. Mum has a “grabber” that comes in very useful for moving things from one bin to another!

i suspect a pragmatic solution for folks with dementia would be to accept recycling properly is an unreasonable expectation and just to issue those households with a big enough general rubbish bin. Can’t see it happening though.

that would be great if they could just have one bin. My dm who died in February used to put all manner of items in the bin remote control clean clothing glasses etc post which she would shred as she sidnt have the money to pay anyone anything!!! she did it was all done by dd in any case !!

My mum's birthday today, so visited - it was nice, care home made a big fuss of her. Other elements went less well - she still says she wants to go home and actually seemed fairly together today. But doesn't want to agree to me applying to court of protection so I need to ensure those views are fully represented on the forms, although I don't think she understands that I am restricted in what I can do. A neighbour called in separately and then called in to see me - he's an ex nurse and thinks the home is very good, and that she seems happy. Later she said she'd like to call in at home and then return. So maybe it's just that she isn't ready to relinquish the idea of home yet - understandable, and she's only been there for 5 weeks.

Have done lots of admin (aka listening to lots of recorded messages)- insurance, AA change of circumstances, return of telecare unit, convo with bank (e.g. need to set up DD before deputyship comes through, so I have to go to branch in person - which given that I don't live here is...well, it has to be done).

But I feel shitty about it really.

Mum had four bins, we used two. There was garden waste and the everything else bin. She couldn't sort recycling once it became more complex than a crate for glass and cans and this was a couple of years before there were any other signs of decline. I had signs taped to the bin lids and the council leaflet on the wall above the kitchen bin but it was never going to happen. I decided that the least worst option was to not contaminate the load of recycling by getting it wrong. I had better things to be doing than going through the bins ahead of collection day. I moved the two "spare" bins round the back of the garage where they weren't obvious and we forgot about them. Once I wised up, I'd lift the bin lid and check what was in it as I went down the path to the house. Anything she didn't recognise could be in there - charging cables for the cordless vacuum, two week's supply of tablets and the containers for storing them, her address book.

MIL could not be told anything ever and basically did what she pleased up to the point when she could no longer get down her steps and it was me and the carers taking things out to the bins.

@Lightuptheroom there comes a point where it is not easy to obey recycling rules. We rely on Carers to put rubbish in new larger kitchen bin, but they don’t take it out, and we can’t expect them to sort for recycling - therefore sadly everything goes in the ‘black bin’. We put the rubbish out in the black bin on our visits, and won’t be sorting through it to separate card etc from incontinence products, to put in the separate small open topped crates. At home I follow all the rules though.

@rhetorician I’m sorry it’s so hard. Does she have to agree to the court application?

@rhetorician when they refuse to give POA and lead you down the Court of Protection path, you end up with a huge bag of extra emotions (and hassle) that realistically shouldn’t be happening for you. It’s hard not to feel bad for your parent when their life is diminishing but bloody hell, it’s like they are turning the screw on yours with a fully turbo charged power tool. The annoyance and frustration in my case counter balanced the sad feelings at times. I guess what I’m saying is expect to feel a range of emotions but down own them all, if that makes sense.

DMil got a hefty back payment this week of AA after an administrative error. Her E-o-L diagnosis had not been factored properly. Good to see that they payed out eventually.

@rhetorician sounds tough, and also lacking in common sense - I think the patient knows best and capacity have a place but so do family. We don’t have PoA or any other say, except a nurse friend last year suggested a simple letter stating DH could talk to doctors on her behalf which she very happily signed and this has been a help. But decisions about care and care home versus cares in the home are out of out hands. I feel MiL will continue to say no to care home but dependent on how she is on the day she is asked and apparently also dependent upon what the physio says. The not knowing and not knowing what is best but also not being able to have a coherent conversation with her about it is frustrating. I notice the professionals, SW etc don’t use the words Care Home! They seem to know that it conjures up a negative response. Told DH that usually it works best where person goes straight to a care home from hospital rather than from their home. I wish you luck and I feel their is peace of mind from care home that care visits don’t provide (14 hours between last visit of the day and next day), the chance to be with other people, things on offer that are harder to organise at home, easier parking for family etc. but I can understand the wrench of leaving home. I am sure at times when you were living at home your mother made decisions for you that you might not have agreed with at the time but she felt in her heart were right , and you love her for it!

Yes this is very true - its an absolute pain in the posterior, especially as I don't live there, so, e.g. bank requires me to attend in person with ID so that they can interview me to see if a direct debit for care home can be set up

I also came across some fairly upsetting stuff mum wrote about me - I'm gay and she was not one bit happy about this. So basically these odd letters to dead people (her parents, my dad) telling them how appalling I was and how I had destroyed all their lives and hopes....hey ho.

I went back today and asked her if remembered yesterday's conversation and she said yes, but was a bit more amenable about it today, but the application has to reflect what she said on the day she was asked - she said in an ideal world she'd like to look after her own money 'but in the light of practicalities that probably won't be possible'. I think she is gradually accepting that going home isn't an option, even with 24 hour care. But I need to see the memory clinic outcome/diagnosis because currently (now she is cared for, clean, fed etc) she is quite good, not terribly confused but still not able to make complex decisions etc. But I do think the dementia care home might not be the right place for her ultimately. However, I think I will see this process through for now - I am worried that her hearing means that assessors think she's worse than she really is. Thanks for reading

Does anyone have tips for managing anxiety? It's been constant since my Dad became ill. I'm constantly waiting for the next thing to happen. It feels like there is a never ending list of things to do and these things too often feel like battles to fight and so I'm stuck in a stress fight response. I've been referred to a GP by my support worker (RBL) and wondering about medication. Does anyone have any experience of taking something for this? Im a bit nervous of drugs but do not have enough time for the relaxation required with a big job and a 4yo at home!

Hi @Newmum738 i am on an SSRI for anxiety, have been for a couple of months. Dad’s decline has definitely been one of the factors. I think the medication is helping. Can’t drink on it, though, which is occasionally annoying!

@NNewmum738 I take mirtazapine and it helps a lot.

Would appreciate your collective advise...
We have been notified by parents social worker that they have had 2 safeguarding notifications in the last week from healthcare professionals who visit my dad at home due to physical health needs.
Both are about my mum's aggressive and foul language towards my dad.
Will the GP now have to do something to assess my mum (currently GP says it's a social care issue, social care are saying it's a medical issue)
Do the social work team have to refer these safeguardings to the GP or do they just get closed like everything else because it's about my mum's behaviour and she hasn't done anything truly awful (yet)
The social worker said she would be emailing the GP but can't send me a copy of the email as she has no consent from my parents to share information.
We're constantly in the dark and dealing with a situation which even professionals are now stating can't be left.
For clarity, dad is physically disabled with many medical needs, mum is showing aggressive behaviour and stating she doesn't want him in the house, she's leaving and not coming back, swearing at him every time he asks her something. They have a care package of 2x a day visits carers help change his bed and other practical tasks. They don't need help with personal care. Mum openly declared that she hates him.

@Newmum738, I have been struggling with anxiety over the last few months due to concerns regarding my parents. I take propranolol, which you take as and when you need it, for the physical symptoms of anxiety and also promethazine hydrochloride (which is basically a strong antihistamine) to help me sleep. The GP gave me these about a month ago and they do help. However, I am seeing the mental health nurse in a week or so to ask about longer term options as well.

I was encouraged to read a really good book called ‘Dare’ which tells you about a way to manage with anxiety- there is a brilliant app alongside this that I listen to often. That has made the biggest difference for me in coping currently.