Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

Thank you to those who are taking the difficult step of trying to stop parents driving. I've posted below so won't repeat myself but my car was written off by an 88 year old last year.

I remember years ago, when working in my professional capacity, telling an elderly man that he wasn't medically fit to drive (he'd had an unexpected seizure so automatic ban at least for a while). His wife didn't drive and he was adamant he wasn't going to give up.

I painted the worst scenario I could think of for him, thus:

If he drove illegally when unfit to do, after having been told this by a medical professional, his insurance would be invalid. If he then crashed and killed himself and injured others, any insurance would not pay out; but injured third parties could sue his estate, leaving his bereft widow potentially homeless and bankrupt. He'd be gone - did he want to leave his wife like this?

This, laid on thick, persuaded him and he surrendered his licence voluntarily.

So sometimes if someone has capacity but is unfit in other ways to drive, it might be worth painting them the worst picture you can imagine.

(My mother did eventually give up driving voluntarily, but her eyesight had probably too poor to drive legally for a while. I'd challenged her and she'd told me it would be fine, she didn't drive very far and she'd always have my brother with her as a passenger so he could be her eyes!! I was speechless!)

We struggled to get FIL to stop driving. Reported him to DVLA but all they did was send him a letter asking him to confirm he didn't have any of a list of conditions and that he was fit to drive. Even after he'd written off his car misjudging a roundabout he was adamant he was fine to drive and was going to replace it. Fortunately the police said that if he surrendered his license they'd say no more but if he didn't they'd charge him with driving without due care and attention and that did it.

Giving up driving is a big step for an elderly person. It increases their dependence on others and forces them to confront their own ageing and frailties. I can understand why so many are so reluctant to stop. But sadly that doesn't mean they can continue with impunity.

I’ve just come on for a little moan. Arrived at DPs after dropping off DS at university in a thorough dirty second year university house that is a whole another thread.
DF has Alzheimer’s and DM is working through multiple weekly appointments for her cancer diagnosis. Largely alone because DF is obsessed with being out of the house and isn’t interested in coming to any of her appointments.
He hasn’t bathed for 3 weeks I have just found out. He also self neglects with food.
They are resistant to anything but the smallest amount of change - I have been agreed that I can put a basket of snacks next to DF chair in the hope he will eat them.
I’ve just WhatsApp’s my sister who lives locally to ask if she could check on it/top it up from the cupboard. She may say no - as is of course her right. She likes to come round and tell DM all her problems and do precisely 0 to help.
But this morning was a nice trip to a garden center and DM went to the cafe for the first time since her diagnosis. She has been too unconfident before. So this is a small and welcome step forward. I suggested the cafe yesterday and DSis said DM couldn’t possibly do a cafe. So I feel a small triumph that she decided to.
Yes it’s petty but I don’t care.

Not being able to drive is one of the big concerns about getting older. The loss of freedom for me would be significant as I cannot walk far.

I really sympathise with having to surrender your licence but it is the right thing to do. It’s why I am hoping driverless cars become an affordable choice before I have to give up my licence.

When FIL wrote off his "absolutely vital car" he'd had it 2½ years and driven 1500 miles.1/3 of that was a disastrous attempt at a holiday just after he bought it that was abandoned after 2 days because MIL was car sick in any journey over about 10 minutes.

Well, the shit has hit the fan or is about to.

My mum (81) has wanted to move from her barn of a house - freezing and in the middle of nowhere - to a flat and near to us in Manchester since last year.

She emailed us all about her decision to move yesterday and that’s she’s doing it. I said categorically to her that I wasn’t going to be in the middle or the messenger.

My brother, who lives in Europe, is an arrogant control freak and resents me making decisions. But won’t take responsibilty. I’m not making decisions, I’m simply listening to what our mother wants and planning for the worse, hoping for the best.

No response to an email that said “I hope you will be happy for me” from either arrogant shithead Golden Boy in The Netherlands or Avoidant Functiong Alcoholic brother in the UK 100 miles away. Utterly disgusting. Avoidant is too scared to email in case the wrath of GB is wrought. GB has a vile temper.

Mr Monkey and I will be paying her direct debit in the barn of a house and paying for her cleaner. My mum is not sitting in a freezing house because GB has told her that she can’t have the heating on until November and she should switch it off in March. Earlier this year, she was sleeping in a Fucking hat when it was freezing.

I’ve emailed the idiots to tell them this. I’ve also told them that they need to be involved in the support my mum gets e.g., cleaner, gardener, carer who does a hair wash once a week and communicate with them. Nearly lost it when GB told me to contact the care company. I am not his PA.

And let’s face it her being round the corner in a flat will be easier for us, but will save money on utilities and a cleaner and, probably, a carer. I doubt we will get any thanks from them for cleaning her house / washing her hair. That’s my job, clearly.

if those dicks think I’m doing any kind of personal care, they are living in cloud cuckoo land. She doesn’t need personal care, but it’s the principle.

FUCKERS.

I am glad your DM is moving closer to you . I know that your Bs continue to be a pain,they aren’t going to change or do anything useful so at least having her nearby will help a bit.

@ManchesterMonkey Your poor Mum. From your previous posts, the move to Manchester sounded like a good solution all round, and wouldn't have put your brothers out at all. I think you said previously that there was some sort of Trust set up that means your brothers have a say in her selling the house etc. Is that still getting in the way, or have you found a way to move her, albeit without their thanks or support?

I'm afraid I'm still dealing with a different, but equally frustrating, sort of arrogance from my brother. I am trying to get Mum to set up LPA but he tells her it's unnecessary and if she really insists on doing it he should be the attorney. In many ways it would make sense for him to do it, but he is terrible with any sort of admin and when I have tried to explain the need to keep records and keep Mum's finances separate from his own he and his partner just keep telling Mum variations of 'We're a family, we don't need all that formal stuff- we just look after our own' and 'That stuff only matters if you need a care home or other people might have a claim on your money'. Pre-dementia she would have been the first to insist that everything was done by the book and properly planned but now she just wants to do whatever won't upset him. Obviously I can't force her to have LPA but I know how problematic it is if there isn't one, and that it can be a problem for everyone if the attorney doesn't manage things properly. I suspect he'll let her put it off so long that it can't be done, then expect me to sort everything out when it gets to the stage that she can't access her money.

@bigdogpaws will they be able to achieve the LPA without your help?
Could you effectively help the process along, in effect demonstrating that you need LPA?

I would put the fear of God into him, that the Office of the Public Guardian will investigate and it’s a serious crime etc etc.
You will be able to object to the OPG, so you might want to ring them and discuss it. Ask them whether the objection can be made anonymously, or whether they have advice on how to proceed.

I think they are surprisingly available by phone.

I looked into the trust and it looks like it doesn’t affect my mum’s decision making. 🙌

yep, @bigdogpaws I know that one. My brothers ‘can’t locate the paperwork’, we all have POA. I’ve kept mine safe because I’m not an IDIOT. Your brother is doing the ‘not taking responsibility until the shit hits the fan, and then it’s over to you’ GRRRR. Nightmare re dementia and decision making. Hugs to you. X

@PrizedPickledPopcorn I very much doubt they would do the LPA unless I sort out the paperwork and tell them exactly what to do (I have it drafted in my name as that was the original plan). Unfortunately brother doesn't seem to think there's any urgency (if it's needed at all). I have printed some information about LPA for his to look at (he hasn't googled it like anyone else would and is just going with his feeling that surely as they will let her son deal with things if she can't, plus the word of someone he knows who apparently tells him I've over complicating things). I have mentioned potential OPG investigation and his response was basically that they'd never look at it. I hadn't considered calling OPG for advice or raising an objection. Sadly if I did raise an objection before to the LPA at the time of registering it I doubt it would succeed- he is remarkably good at claiming he will do all the right things and appearing to be the world's best son until you look closer. The issue will come when he needs to use it and I have the choice of either reporting him (which would upset Mum and presumably still leave the issue of who deals with her affairs if he's found to have mismanaged it) or leaving them to get on with it in the knowledge that it will end up in a mess that one way or another I'll end up sorting out later. Of course, that may all be academic since if it's left to him I suspect there will be nothing done until she's lost capacity. I feel like I'm stuck between a rock and a hard place- if I try to force brother to do anything he will refuse, even if he knows I am right, simply to show me he's in charge. If I push to hard for Mum to make a decision she freezes, just because she doesn't have the ability to think it through as she once would and gets stuck at 'he'll be upset with me, so better not do it'. So I am having to nudge them along with bits of information and suggestions so that brother feels he's in charge.

@ManchesterMonkey Glad to hear that the Trust won't stop your Mum making her own decision to move. I bet that revelation has annoyed Golden Boy. Who does he think he is telling his elderly Mum when she can have her heating on! I bet you won't hear much from either brother once your Mum has moved, unless they think she may be spending money that they see as their inheritance.

My friend has a brother who was the golden boy but I've never known his name as we routinely refer to him as Goldenballs. Just a suggestion to lighten the evening!

Monthly visit to MIL done.
Second attempt at removing pessary failed. They need changing or cleaning every 6 months, it was put in 18 months ago. She threw away letters from hospital asking her to have it cleaned because she did not believe she had one.
Now going to need anaesthetic to remove it, urgently. So I will have to do 800 mile round trip again, as soon as appointment comes through, because she can’t get to hospital on her own and there is no one else.
We left the hospital with her saying she wasn’t going back, she’d just leave it because it wasn’t bothering her, and ‘someone’ had told her that it would be fine if left alone. I absolutely flipped and told her if she got an infection and had to be admitted because of it, she was on her own and I would tell everyone why. I am not proud of myself.
she is deemed to have full capacity so even though I have health POA,
I can’t invoke it yet, so hospital letter will go to her. I am so fed up with this, and with hearing the same health stories every time to explain why she is in this position, most of which are total fantasy.
She is so miserable and tells me how hard everything is but will not listen to any suggestions about how to improve things. She is bored with eating the same things, but will not change her shopping order at all. She won’t let me cook anything for her when I go because reasons, won’t let me put on the washing machine ,open the windows or find her any different channels on the tv.
I really hate going there, I come out stinking of cigarettes and general uncleanliness, but she won’t use the no rinse wash cloths I get her, beyond on her hands and face.
i am really not a nice person around or about her. I wish I could make things better for her, but I don’t think I treat her very well.
Sorry for the rant, I had a 3am till midnight day yesterday visiting and have woken up feeling dismal. There is only me though, so at least I am not having to deal with a difficult sibling!

We don't live near my mil , but she does have family live close by .
She's nearly 90 , refuses all outside help but expects her family ( who have young children & work full time ) to do the many jobs she is now incapable off , including a 20 miles round trip to put out the bins .
We have seen a marked deterioration in her cognitive ability this past year but in a recent spell of being in hospital has been deemed as having no sign of dementia .
She like your mil has lack of self care . She will tell you she's getting herself in / out of a bath a manages to wash her hair but this is pure fabrication / lying .
Her hair is a mess but she will say she was about to wash it before you arrived or will be washing it once to go . Of course this never happens ,, and she refuses offer of help as of the personal self care she wants everyone to believe she is self sufficient , we can see she isn't but she continues to delude herself .

Whilst our elderly are deemed to have capacity by the powers that be , there is nothing we can do about it .

Just had words with DH over his hearing aids and not wearing them. The trouble is he doesn't realise how loud his voice has got. Yesterday he was on the phone to the diabetes nurse and I had to tell him the people in the next street don't need to hear about the gastric side effects of his medication. I moved to the other end of the garden, about 20 metres away and his phone volume is so loud I could hear clearly every word the nurse said. This morning we were sitting opposite sides of the dining table and he is showing me a funny meme and virtually shouting at me. We've had the conversation about increased dementia risk and he just brushes it off. I've told him if he can't hear the TV/radio at a volume that doesn't hurt my ears he needs to get headphones so he can control his own volume but nothing is getting through to him that it's a real problem for me. Aagh

@Scrabsqueak . I'm left a bit stunned by your post, not least by a feeling of awe at your dedication and selflessness. A monthly 800 mile trip for someone who sounds singularly ungrateful - and she's not even your own mother?! Gosh.

If you were to cut back your visits, what's the worst that could happen? As she doesn't want or accept help, would her life be worse if help wasn't offered in the first place? Seriously. I know it sounds incredibly hard but these are the sort of questions I've had to ask myself about my situation too.

@Jennalong If your other family members also think there's a problem I would ask those who see her most to keep a diary of things that are unusual or seem like signs of cognitive decline (even better if you can share information and keep a joint diary). My Mum was similar to how you describe your MIL for quite a while. She seemed able to excuse/cover up issues she was having and managed to 'pass' simple memory tests etc. Keeping a diary helped show that what was being passed of as a few isolated incidents/misunderstandings etc was more of a pattern. Mum was particularly bad with remembering to eat and how to prepare food. At first she claimed she was not feeling up to cooking properly so we organised meals that she could microwave. She claimed to be eating them and enjoying them but I was increasingly finding them either left in her freezer or thrown away unopened. There was usually a story that seemed plausible about someone having visited and made her a different meal/she felt better and made something different etc. When she started to lose weight she claimed it was due to a conscious effort to reduce sugary snacks/crisps etc but I would later find empty wrappers hidden in her bedroom. There were other things too, but piecing together the stories told to various family members over time helped show that there was something more worrying happening. Together with other issues it became clear that she was struggling with the processing needed to prepare a meal or even operate the microwave/kettle. The diary helped convince the GP that a referral to a specialist was appropriate and she was diagnosed with alzheimers and vascular dementia. From what I've been told, it seems like patients with mixed dementia or less common forms of dementia don't always present with what would usually be considered 'classic' dementia signs (eg Mum can still remember exactly where she placed something 3 weeks ago but can't make a cup of tea).

She is waiting on an appointment at the memory clinic , it's been months so far .
She also had an ' at home ' test by someone who told my bil she has worked with dementia patients for years and can't find any signs of it in her .
So the family are taking that until she gets her appointment and ( hopefully ) our fears will be confirmed but as it stands , in the medical, world she has cognitive function and can make her own decisions .

@Jennalong You have my sympathy. We were told that the wait for the memory clinic would be at least 6 months. Mum's assessment was expedited and dealt with slightly differently because she started to suffer from hallucinations but even then it was almost 6 months. When we did get the proper full assessment it was very thorough and about far more than just memory.

I understand your point about cognitive function and being deemed able to make decisions. Actually being officially deemed to have lost the capacity to make your own decisions seems to be tricky and unclear. Mum has very clearly lost the ability to properly think through and weigh up information relevant to making decisions and certainly doesn't seem able to give proper consideration to the wider implications of a decision. Yet it seems that because she can understand and repeat that the options are a, b and c and has the ability to state a preference and a reason she is treated as having capacity and therefore important decisions are down to her.

I wonder about my mother's capacity to make decisions. Yes, she has an answer for everything; but when someone is adamant as she is that no help is required, against all evidence to the contrary, you have to wonder whether she really has an understanding of the situation, which is necessary to be deemed capacitous.

But hey, what do I know? Nothing. Despite having previously been an adult safeguarding lead!!

@Eclipsing mum was assessed as having capacity to make decisions about her health care despite forgetting that the device attached to her was a 7 day heart monitor within minutes of it being fitted. Needless to say it was a complete waste of time and effort because by the time I'd got back from taking her home (having pinned all the instructions up in the kitchen) it was off and I had to search the house to find the random drawer it had been put in. All the time she was angry and crying that she'd never been to a hospital as an outpatient ever. By this stage we were over 3 years post diagnosis. It was only when she was at risk of burning the house down/causing a gas explosion we got anywhere.

Consultant only seemed interested in saying DF didn’t have capacity when we emailed the discharge team to say as DM was moving to a care home we couldn’t support DF any more and didn’t think he could independently dress, wash or feed himself. TBH I think the only bit that mattered was us saying he was self funded.

They had done an informal memory test at home a couple of months prior which apparently DF passed with flying colours despite having no recollection of it having taken place the following day and having to get the district nurse to administer his insulin every day because he forgot to take it.

DM's diagnosis only happened when her CH needed to get a DOLS in place so that she could be moved to the secure part of her CH for her own safety.

I then found out that DB had obstructed getting a diagnosis (why am I not surprised).

Up until diagnosis being in place we had operated in a strange grey area. HCPs happy to get my approval to decline a pacemaker on DM's behalf but would then insist she had capacity at other points.

Certainly once DM was being discharged from hospital and it was clear she was self-funding nobody gave two hoots about where she was going next. Hospital transport might have raised an eyebrow if we said the destination was the corporation dump but I dont think they would have actually done anything to stop us.

There is no system until someone 'official' is inconvenienced by a lack of diagnosis.