Cockroach Cafe - Autumn

[rookiemere]

A new thread but the same themes, for those of us going through the ongoing challenges of supporting elderly DPs and relatives.
No judgement just support and virtual gins or tea on tap depending on your preferences.

I am so relieved to have found this thread. My DM had cognitive impairment and other health issues from around late-60s/early 70s, then had a stroke 3 years ago (she’s now 78), which left her very frail and with brain injury, plus now dementia (an interesting mixture).

She is in a (wonderful) nursing home near me, and I have very little to complain about now we aren’t trying to manage everything for her from home which was so stressful. It means my sister and I can actually have a (semblance of) a relationship with her again, but I am struck by how much I am relating to all of your posts.

The description of advance grief, the feeling that visits can be just “internally logging the decline” (that phrase hit hard), the huge effort involved in trips out, and so on. It’s somehow always on my mind. It’s like at the same time I adore her and my heart breaks for how much we have already lost, wanting to make the most of the time left, whilst also somehow (horrifically) wishing she wasn’t in this half a life position, and my stomach churning when I remember I need to visit (which I do twice per week, which feels too little). All very hard to process alongside midlife, teenagers etc.

Thank you all very much for sharing and hugs to each of you.

I'm a long way down the track now. Any grief has definitely been in reverse. There have been too many times where DB and I have thought 'this is it, she cant recover from this'. Except she has but the recovery has been less of 'her'.

There is nothing of DM left.

DM and I werent close before this started now I just dont care very much. I would not see her suffer but only in the sense that I wouldnt stand by and watch any human suffer.

Realising I have got to this point has given me some peace. Even DB's nonsense doesnt affect me as much.

@GnomeDePlume 💐 totally understand. I am fresh off a call to one of the specialist nurses dealing with my DF. New baseline after yet another illness he cannot and will not bounce back from.. Just fading and fading. As the nurse said ‘he will likely not die from his Parkinson’s disease it’ll be something minor he just cannot deal with. I am not religious but I do pray in my own way he goes to bed and peacefully slips away. It is horrible to see. By goodness the nurses and carers are brilliant. Best wishes to you.

My experience with DM has made me realise I have a duty to DCs & DH to make sure that they are clear on what my wishes are for my later years. Also to make sure things are straightforward for them to deal with.

I'm retiring in a couple of years so I am making plans to ensure I dont need to spend my retirement juggling my modest pension investments as DM had to do. This meant she depended more and more on DB to sort things for her. This in turn meant that he could be quite controlling about how she spent her money.

Thank you for the new thread. Solidarity to all.
Social Services are getting rid of the useless care agency my mum has had since December. All the good carers left and it’s been a shitshow since May with multiple complaints from me. They don’t even wash their hands, have long false nails, wear inappropriate clothing, turn up nearly 2 hours late, or don’t turn up, and more recently had a big row with my mum one night because mum wasn’t happy that she’d arrived over an hour early and was patronising asking if she wanted to go to bed at 7pm. They’ve told her an appliance is broken and don’t last when they hadn’t even switched it on. The lack of any common sense is shocking. Due to several carers being so bad they are not allowed back the rota has been left looking like Swiss cheese and the manager expecting me to fill the gaps. Erm, no.
Needless to say I’ve been very stressed the last few weeks and really need a day to myself. I’ve not had one yet since my youngest started high school and I really need one.

Good for saying no, @Dormit .

It's a v sad fact that if families show willing to help, SS usually withdraw faster than a greyhound out of a trap. It's such a shame because I'm sure many of us would be very willing to work with SS rather than devolve the job entirely, but we can't let that be known!

Same. We're still unpicking issues from my mum's estate, and she died 3 years ago. Dad is still alive and they both had wills and POA etc set up.

Despite that, there was no clear instructions or info on what was in place, Dad is no use / can't remember what was agreed and the wills were very basic, but they have a trust set up etc and overseas property, which has been a bloody nightmare to sort out.

Chatting with DH last night as we need to update our wills, but this has also taught me we need to leave instructions / a guide or whatever on leave behind and how to access it, what to know / consider etc. I'm also considering changing our executors as we had family as ours, but some of DH's finances are complex and I don't think its fair to land people with no knowledge and expect them to figure it out.

I agree re making wishes clear and everything a straightforward to deal with as possible. A few things I've learned from my experience with my parents are

• Whilst you feel too fit and well to need it, have an ongoing system of how your DC can find clear details of bank accounts/pensions/bills/investments etc all in one place. By the time one parent is unwell no one has the time/inclination to do this.
• When assigning LPA and executor roles etc think through who actually would have the skills and the ability/time to do the job properly. These roles are not some sort of honour to show you care for someone, they are time consuming and complicated.
• Unless your children definitely have a very close relationship and frequently work together happily do not appoint them joint roles. If you are considering appointing them joint roles because you don't want arguments over who should be chosen, this is probably a sign that they definitely should not have a joint appointment. Having a role to do together after you are gone will not bring them together if they are not already close.
• Leave instructions about your funeral wishes, even if (like me) you actually couldn't care less. It will be a comfort for family to be able to say they had done what you wanted, will help minimise disagreements and provides a perfect answer to any interfering extended family members. Include any preferences as to cost- it feels awful to be considering the price of items and there can be a push to ask for the 'best' of everything. Some people might want that but I'd rather have a simple cremation and the £££ that could have been spent on a funeral spent on something fun, or given to the cats home. Or even better have it pre-planned and paid for.

That’s a good list @bigdogpaws. There are some advantages to being an only DC in all of this and to be fair to DM, she did a good job of getting them to rationalise their finances before it became an issue, and due to the sage advice of a friend I had POA registered on most of their accounts in dribs and drabs before I actually needed to use it.

I am a bit salty on the funerals aspect. A friends DM died around 5 years ago and something that gave him great comfort and made it easy to arrange was that she had dictated exactly what she wanted at her funeral. I suggested to DPs this might be a good idea, DF said we should throw him on a dumpster truck and DM very specifically requested my aunts husband to do her eulogy. It’s a bit of a shame for her and him that he died of a brain tumour so as usual she’ll be left with me to do the honours. I mean he was a very witty and eloquent man, clearly unlike me, but it just stung a little that she clearly didn’t want me to do it.

I want one of those woodland burials. I should probably document this somewhere along with actually creating a POA for ourselves.

@Dormit those carers sound terrible! I wished carers were trained and paid better, it would make such a difference to the sort of people who wanted the job.

I am very grateful that my Dad sorted out all their affairs before he passed away and told us where the folder is with the wills etc. My siblings and I have medical and financial POA for my Mum (at her request) as well which is reassuring.

I have started a file for my own DH/DC with all the passwords and accounts etc. My DH and I have a will but haven't done POA for each other so should probably get on that.

Watching my Mum's decline has made me fearful of old age but it has also made me see that having the paperwork in order helps a lot.

DH and I have just been discussing this. Prompted by the challenges I have faced caring for my elderly DPs for the past 2 years (so lucky they have money to spend on live-in care) and the sudden diagnosis of DH's older sister with Alzheimers. She is only in her mid-70s!

It's a really useful list, and I would add to it to be clear about whether or not you want to go into a care home and at what stage ...

Based on my experience I’d never say I never want to go into a care home. I mean, I don’t particularly relish the idea but I’ve seen the difference a good one can make to both the resident and their carers. I would instead be specific about the circumstances and very specific about the type of home.

On wills, I’ve tracked down the originals of my parents’* but it’s a right faff getting the solicitor to release them to me. DB and I are joint executors but he’s just gone abroad for another posting until Christmas. Think we’re set now but it’s a reminder to never think anything legal is going to be “simple”.

*It wasn’t hard - mum had been nagging dad for years to get them done but for some reason my very sensible father was superstitious about it. Anyway, she finally got him to agree one December and they gave me a copy of them in an envelope - on Christmas Day nearly 20 years ago with my presents! The memory of that makes me smile now. Mum was so pleased to be able to tick the box and know it was done that she hadn’t considered the timing of telling me. I managed to make light of it and it became a running joke.

I actually have nothing against a care home for myself, provided it's a good one. There is one on my road and I drove past during the summer and they had an ice-cream van parked out front and they were walking the residents out to choose their own ice-creams, so on that very slim evidence alone I'm assuming that to be a good one that takes some effort to offer enrichment. Also I've heard that it's in the region of €100k per year so it bloody ought to be good. The worry that I have about a care home is that they might keep me alive when I should be let die. I'll have an advanced care directive, but the tendency is to over treat because no-one ever gets sued or prosecuted for keeping someone alive.

Wise words @bigdogpaws

I would say, it's better to make one of the main beneficiaries an executor with the proviso that they are welcome to pay a solicitor to do the bits they're not up to, than make a solicitor the executor, because then it will take AGES and the beneficiaries will be in the dark. IME.

I outright refuse to be co-executor with any solicitor after seeing what happened in a relative's case. YMMV of course but it's no skin of a solicitor's nose if it drags on, but if the executor has engaged them they can sack them too, if they slack off.

Anyway VERY wise words!

...

Have just been down to see my rellie. Rather worryingly, she was sat in her chair barely responding at first. I called 111 and they promised a GP callback. By the time we'd got to this stage, she'd perked up quite a bit and said she hadn't slept well last night. So the fact there has been no callback as yet, weeellll meh. And where was the lunchtime carer I wonder (they're normally fine fwiw).

We (me and DH, who was fielding texts while I was away for a couple of weeks) are a bit worried still, mind.

But I fed and medicated her and she just seems very sleepy (and maybe a mild infection) so we'll see. DH said he wouldn't be surprised if it all goes bad, and she ends up in hospital next week, and I do know what he means... but with the frail over 80s it can go either way.

Well, I plucked out great bucketloads of courage, rang my mother and after 10 minutes of chat, suggested to her that we (OH and I) might visit and take her out for lunch or a coffee etc. I specifically said that we would not go to the house, as I reminded her that she had made her feelings very clear on that and I felt that she knew my feelings too.

(resume - She has previously banned me from visiting as she my "disapproval of how she chooses to live" makes her so anxious and depressed (allegedly). I would prefer not to visit, not because I disapprove but because the state of the place distresses me).

I had been trying to prepare for the eventuality that she would refuse - but she said that would be lovely! So I'll be seeing her again for the first time in about 10 months.

Whatever else you can say about the situation, I just find it very sad that I have to psyche myself up to even suggest it, and psyche myself up a lot more to actually get there and see her.

@Eclipsing there was a lot of psyching up for me as I never knew quite what I would find (in the house or with our Dad) - so solidarité and well done for that result on the call and for a manageable visit. I know there will be more courage needed for the actual visit but I know you’ll feel glad you made the effort, however it turns out 🍸
I look back and think how glad I am for efforts I made, even though some were extremely hard at the time.

The wheels of the probate office are turning very slowly here but with property sold a few years ago to pay for care, it seemed straightforward to apply ourselves. I do worry there’s something wrong with the application but I don’t think they’ve even looked at it yet and it’s just in a backlog.

@rookiemere thank you for the new post. Any gin on that tea trolley?? 🤞🤞
@bigdogpaws I'm sorry your family is forcing you out. It must be horrendous for you.
Sending hugs 💐🙏💕

Hello, can I join in and get a round in? I’m thinking magical ice cold vintage champagne that won’t get you drunk! As I think you/ we, all need a jolt good boost and a treat. I cannot imagine how you all handle this stuff with such patience and grace.
💐to everyone.
and thank you for all the practical tips . It’s mad, you can talk freely about the kinkiest stuff yet death or getting old is sooo taboo.
cheers. Another bottle coming up, and some chips x

Champagne by and chips - fantastic! Welcome @Notagainagaindd

Visited DPs yesterday. The lady from the Telecare company was waiting for me so she got the base unit installed and talked to Dad about wearing the pendant, and tested it. He’s fallen several times in the last fortnight and struggles to get up. Neighbours are mostly elderly and I’m an hour away. The call centre don’t send a team but can talk to the person and call an ambulance if necessary. Dad baulked at this bit - he doesn’t want to go to hospital so there was much explaining that as long as he wasn’t badly hurt, they’d get him upright and go away again. Of course I worry that he might get badly hurt. And he said “your mother wouldn’t like it, she’d die of shame.” Which just shows how abusive and selfish she’s been to him all these years, she’s got him well trained. Better to die to shame than pneumonia, I told him. I actually wonder whether he’ll hear the base unit anyway, even though it’s loud he’s now very deaf. His hearing has got a lot worse in the last year.

(Though in my innermost heart I do wonder whether a fall, hospital and pneumonia might not be the best thing now; at 98, he’s very frail and starting to lose it cognitively. It’s only downhill from here.)

He’s also told his GP about it so the Falls Team delivered another walking frame yesterday (one upstairs, one down), but no one has been to the house to do an assessment. I don’t think he’s safe at home anymore but as we all know, only a serious fall will prove that.

DM as mad as ever, had another argument with me yesterday about rotten broccoli. Desperate to keep it so it can go in the compost, which would be fine but what she actually does is leave it near the back steps where it goes rotten - she wants to obsessively cut it up into small pieces but forgets and leaves it so it rots.

Will approach cleaners again next week and see if they’ll come despite the state of the house. Not sure anyone wants that kind of work but it’s that or do it myself and im not doing that.

@MotherOfCatBoy too late for us to use it but I recently found a local extreme cleaner on Facebook who is ex-military and takes on the kind of cleaning we needed (would not be phased by the rotting broccoli/compost obsession - which I recognise!) I hope you can find someone like that even if it’s to get to a baseline which a regular cleaner can manage 🤞

Welcome to those joining us in the cafe 🥂

Re the list of things to be clear about with loved ones when you are well, in preparation for when you are not. I think views on care, including care homes/other forms of care/what stage you would like that care etc are definitely useful. But I think if you have a strong view about not going in to a care home at any stage you really need to provide plans for (and prepare funds for) an alternative eg. live in carers if he time comes when you can't manage independently.

We have wills and POAs in place. I've told the boys that my I want to be cremated and funeral should be the cheapest that they feel comfortable but if they have a proper service I want "galloping home" as one of the music peices. I've told them that I don't want them sacrificing their lives to care for me and that if the need arises I want a care home with nice grounds where I can look at trees and plants not a bare concrete patio but if I'm stuck in a room I want pot plants and one of those bird feeders you can stick on the window. I'd find a life without nature intolerable.

Yes, I think it’s more realistic to put some thought into what type of care home, than a refusal to acknowledge that one might be necessary at some point.
One of my elderlies recognised this and chose the home they wanted to go into. Did all the research and sorted out the details, just requiring help with the moving and house sale. That made it a lot easier. And that was an amazing care home. But then they didn’t have children so couldn’t make the assumption that a daughter would deal with everything whilst they stuck their head in the sand!

I’m highly likely to end up in one as well, I think. I don’t want my DC running around after me and I definitely don’t want to be isolated at home with a few carers coming in during the day to microwave freezer meals and someone having to take responsibility for running the house.

If dementia is likely to be my fate I want out as quickly as possible. I am working on the wording for my Advanced Directive. If I no longer have capacity I do not want to be given any medical treatment other than morphine for pain.

This means that all my 'management' treatments for my various conditions should stop (warfarin, diabetes treatment, thyroxin). No ABs. No flu/covid jabs.

I have talked about this with DH and DCs. They are on board with it.

Wills are done, next stop is LPAs then AD.

Morning fellow café patrons. For those of you with DP who don't have dementia, what do you do to maintain your boundaries and how do you stop them repeatedly being crossed?

I'm thinking of things like what time of day it's reasonable to call someone, how many times etc.

Is it just a case of reiterating ad nauseum and/or ignoring some of the calls?