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.

@PrizedPickledPopcorn
“Shes also inclined to get advice from 5 different people, each of us thinking we’re the only one involved, spending hours researching stuff, only for her to then do something random because she went in a shop.”

Am coming up against this one so much just now myself. I spend ages trying to sort something, some random comes along, phones and confirms/alters/generally tries their best, gets the answer I was waiting for, and would have been given to me later that day, then bossily contacts me saying they’ve sorted it out.
It’s very frustrating and also makes me feel like said random then thinks I’m just passive and useless. This bit is a me problem because why do I care what others think but…

We did the accessibility setting on a (newer than hers) iPhone to show her- bigger icons, fewer opportunities to ‘break’ it by turning down the light or losing the key apps.

She would barely look at it because it was different. Now she’s struggling to use her old phone which is, obviously “broken” and she needs a new one by yesterday.

We’ve had the same TV problem too. She tells the provider that it isn’t working so they upgrade her to newer faster routers, more data etc. Someone has to go and reset all her devices, she can’t understand why her package is so expensive… pah. Groundhog Day.

@OhamIreally I’m sorry for your loss 💐 as you can see, lots of what you’ve said resonates here. Especially being at a distance and trying to balance the needs of your child. You did what you could under the circumstances at the time.

I also agree that modern systems are often making life harder. I was overwhelmed with the number of different medical systems and don’t get me started on energy suppliers.

DM has slid further down the ramp. If she wakes she is offered food or drink but as she is awake less and less these opportunities are getting further apart. Also DM's ability to swallow is decreasing so she is able to take less in without risk of choking.

The strange thing is that when DM says something, just a random word or sentence, or when she coughs, she sounds like herself. So much of her is gone but her voice stays.

@FiniteSagacity I agree about systems making things harder than they need to be, and in some cases much more expensive for older people who struggle with them (or the daughters helping them and having to remember yet another thing to update/change). When I started helping with Mum's finances I discovered that she has been paying way over the odds for some of her bills simply because she hasn't had the energy or understanding to be shopping around or changing the package every year. The worst is sky TV who have been charging her about 4x the advertised rate for new customers/renewals just because her 2 year contract with them ended and she did not change to a new contract.

@GnomeDePlume sending I hope this last part of the journey down the ramp is as smooth as possible

Tell us how your Elderly Parents community works
www.mumsnet.com/talk/elderly_parents/5554731-tell-us-how-your-elderly-parents-community-works

I agree with that, I took over my parents finances last year (supposedly jointly with DB who has not lifted a finger). They had never switched gas and electricity, Dad is in a home now so it's mum I'm dealing with. She didn't know that you could switch them so they have been paying BG and their local electric co massively over the odds for years. The baffling thing is that you have been able to switch them for at least 30 years by my reckoning so they would only have been in their 50s when they were deregulated, DMum was a teacher of business studies and has always avidly consumed news and current affairs and I just don't know how she could not know this (no dementia but I think she's starting).

They have never changed insurance providers, gas and electric, phone/broadband etc any of them. So I changed their gas and electric to Outfox and it is £60 a month cheaper (!) but it has caused her so much stress and confusion over the last few months that I honestly wish I hadn't bothered and just moved to the cheapest tariffs her existing providers offered, but that would not have saved much. Our worst is BGas Services, they installed a new boiler for Mum and Dad 12 years ago and have been stiffing them for £87 A MONTH for a boiler service contract. And yet they never thought to question this. It is even more baffling because they have been ever so good with savings and investments, all separate and equal, all documents filed neatly, good split of saving. investing etc.

@ElderlyDilemmas my parents never changed theirs either.
I don't have the patience to argue about getting a better deal and it'll cause no end of stress and worry, I'm picking my battles.

They also had a mortgage with Barclays for the entire duration because that's who they banked with and had the associated building insurance through them too.

My dad was an accountant 🙄🤔

My DB was/is heavily involved in DM's finances. He didnt encourage DM to shop around for things like insurance because he believed that DM was benefiting from some sort of loyal customer price. Nothing as 'common' as NCD, he just believed that existing customers got a better price than new customers.

He was very cross to find out both he and DM were paying way over the odds.

I think that as cognition starts to go people arent just less able to take on new technology but existing technology becomes confusing. The previously familiar becomes new, different and frightening.

The nurse in today dealing with DM is one who doesnt use morphine etc unless 'needed'. She looks to treat pain/distress rather than look to prevent it.

DB of course is delighted.

I am half expecting him to tell me that DM completed the Times crossword and that she will take up her bed and walk in the coming days. It's funny but that version of DM is conspicuous only by her absence when I visit.

That's the thing, Mum just can't believe that British Gas would do such a thing, surely it wouldn't be allowed etc. She also seems to think that the letters she got from them after we switched which were all friendly and personal and "do come back we have lots of nice tariffs" weren't written personally by someone looking at her account and she was worried about upsetting them. These big companies really do take advantage of vulnerable customers.

Have had a second cerebellar stroke.

Totally sick of their incompetence.
Dr's should have prescribed very important meds daily. I should have been on them for a month. And will need to be on them for life

Fortunate that a good doctor came and told me that she'd realised this had been forgotten and she started me on these tablets immediately.
Luckily my best pal is a very calming man who has ensured, I will get everything l need.

Medication is called clopidogrel.

I am already feeling the improvement.

Oh bloody hell BroonOne. So pleased you're on the right meds now and can feel them working. But aaargh. 💐

We had no end of problems with mum in 2020 because she just couldn't accept that governments would impose lockdowns. To quote "No government would make shops close or stop you seeing your family". At the same time my dad was terrified that if I came to do urgent household maintenance I'd be arrested. At least I could calm that fear by keeping a bag with long life milk and a couple of tins so if stopped I could say I was taking food to an elderly person. Stopping mum popping out to closed shops etc was a nightmare.

The thing about cognitive decline - whether it’s an official diagnosis of dementia or the deterioration of old age - is that unless you’ve seen it happen to a loved one you’re in regular contact, it’s very difficult to get your head around.

It took me a while to grasp that it didn’t matter how simple the instructions, how often they were repeated, that part of DM’s brain no longer worked to process the information. Not a case of get her a “simple phone”, a case of not recognising the device as a phone at all.

I also think many system, technology, software and device designers have stopped doing any meaningful usability testing for anyone with any form of physical or mental disability.

@funnelfan we definitely had that with mum. She wasn't hearing the phone and it was at full volume so we bought one that had a really, really loud ring. But it couldn't be a phone because it didn't say BT on it

I had an email from Virgin earlier to say that DMs TV Box needs changing as it is out of support. We changed ours a while ago so I know that it comes with a different remote and screen layout. As you’ve both said @countrygirl99 and @funnelfan changing what she’s familiar with will be a nightmare as she simply won’t be able to learn anything new.

Does the box have to be changed (ie it won’t work any more) or can you keep it going until/unless it conks out?

Mum had non-smart TVs and freeview, but even then she lost the ability to change the channel. She’d have had no chance with a smart tv. We’ve got MiL’s smart TV as it was only a few months old when she died and even we struggle with it and it is the source of frequent swearing.

@funnelfan I think I’ll try to hang on as long as I can without changing it. She struggles enough as it is.

It can be really hard to accept that they are doing their best. It seems so unreasonable for them to be angry because they can’t use the TV, ‘It must be broken/they’ve updated it/it doesn’t work when I use it’. But that really is their experience.

Alongside being able to do all sorts of other things, they can no longer be able to do this specific thing, on this specific occasion.

Though I am getting irritated with the constant refrain of ‘No one ever told me/showed me/explained that…’, about something we cover every phone call or visit.

We've had that too, Mum's TV packed up a few months ago (she got an engineer out but it was completely kaput). As it happened we had a spare one the right size so DH installed it and spent hours going over the remote control with her, she didn't get it at all, but he left instructions on a piece of paper and she hasn't conplained for a few months. One thing I have gradually learned is that anything you tell her verbally is a waste of time but in writing is much better. Having said that we have an endless text conversation where she ignored anything I say. But actual notes on pieces of paper work. Not very practical though

Heating was a big one with mum. She forgot the concept of thermostats so if the heating was on the boiler should be onor it's broken and mm aybe fiddling with the controls will do something. Except the something was to leave it switched off or mid setting process so it wouldn't come on at all. Then, because she thought she was perfectly capable of dealing with issues she'd call out British Gas. They'd come switch it back on and by an hour later she'd forget they'd been and the whole process would start again. And because she kept a note of when she'd phoned she'd be convinced that she was repeatedly calling for weeks and no one was coming.

Long before the current situation DM would insist that her computer/TV/oven/whatever was broken as it wouldnt switch on. She would insist she 'hadnt done anything'.

Of course she had! The tale of whatever assault she had inflicted would slowly come out as one of us tried to fix it. It was always expressed as 'I only..........'

It's really frustrating, but I am gradually getting my head around how Mum's processing abilities (or lack of). She seems capable of doing something if she is shown and then tries herself several times but that only works if everything is EXACTLY the same when she tries to do it on her own. I can only assume that the seemingly small processing skill of recognising when the important things are the same and ignoring unimportant things simply isn't there. For example, she likes to sort her pills for the week in a weekly pill box. Hers broke so I got her a new one that was very slightly different- nothing significant but it is very slightly bigger and the days of the week are printed on each part in large writing (rather than the small stickers she put on years ago). She was baffled about how she should use it (how would she know which day was which without her stickers? why are there no stickers? how does it open and close? how do I find the next day? etc). She used it for a day with me there are was able to do it perfectly well. The next day she called me because she knew she needed Tuesday but how does she know which box is the right one? Where are the stickers? Oh, yes, I can see the writing, yes there is one that says Tuesday, Oh right, is that the box for Tuesday? How do you know all this, was there a manual? But how do I open it? Is it the same as yesterday? But it's not Monday today it's Tuesday? etc etc.
With Mum I think it has felt harder to understand because her memory as such is still pretty good. She can remember everyone's birthdays, where she keeps everything (even things that she hasn't used for years), details of conversations etc but she can't reliably follow a simple instruction without help and practise, and even then she can rarely repeat the task later without similar help and instruction. In the same way, she knows who people are and can tell you things about them but can rarely get the right name for them. Until you get used to it close up I think it's really hard to understand why the mind seems so sharp in some ways and simply can't cope with other things. [edited for rogue word that crept in to first sentence!]