Cockroach cafe - summer

@GnomeDePlume Your poor Mum. To me it just seems cruel to try to cure the infection in these circumstances. It's certainly not what I would want for myself. But given the way your DB has been I'm not surprised that's what has been done. I imagine they're afraid of him claiming they've been negligent in not treating her when there is medication available. I fear I will be in a similar position when the time comes with my Mum as my brother is adamant she should receive the same treatment that would be given to someone young and fit. Sadly I can't imagine him allowing anyone to let her slip gently down the ramp. Watching this must feel like torture to you- you really do have my sympathies.

I forgot to ask whether she’s in a hospice or hospital.

Did they consult with anyone about the ABs? Pneumonia was once known as the old man’s friend.

@GnomeDePlume I honestly can’t believe they gave her ABs. That’s beyond wrong.

@bigdogpaws please don’t think I actually know or understand anything- I don’t even know what MiL is on! All I know is she was diagnosed a long time ago and we prepared ourselves to lose her as she was already quite frail and confused. The diagnosis was mixed dementia but she does have other complex health needs.
She has definitely had good years since then, it’s just that she’s now still here, her husband has declined very quickly, she needs a lot of care and gets very cross that her husband just sits there doing nothing and dozing. He’s happy as Larry if people just leave him be. He eats, drinks, watches tv, dozes, then starts again. He does have falls, but that’s not helped by the state of the house. Mil is a shopaholic.

Your Mum’s situation sounds a bit different. She may well feel much better and have more usable time to enjoy.
Mil has always needed a lot of support, and her comparatively good health means she’s now out performing her body and her husband!

@PrizedPickledPopcorn That's an interesting perspective re medication. My DM has recently been prescribed memantine. She's keen to take any medication that might help her and of course that's absolutely her choice to make. My (quite possibly mistaken) understanding was that medication can help make things more manageable for longer (and in her case, less frightening as she has a lot of unpleasant delusions) but wouldn't really prolong life. I suppose I'd assume that, short of a fall etc related to the dementia bringing about a sudden death, her lifespan would be basically the same regardless of dementia medication but with the medication she'd have a greater proportion of 'good days' than bad. I'd be very interested to know more about the impact of dementia medication on life span- if it's just prolonging the agony I'm not sure I'll be as quick to encourage mum to keep taking it. It's not something I can ask her HCP because she gets very upset at even the vaguest hint that she is getting to the end of her life and has sometimes had delusions that people are conspiring to kill her. For the same reasons, she has ruled out discussing ReSPECT forms as she tells me that 'everyone knows' doctors will just use that to kill off old people. I have tried to explain that it's just about helping people understand her wishes but she gets very annoyed at me and tells me 'Yes, yes, you would say that wouldn't you- they've obviously got you taken in.'

Thanks, @PrizedPickledPopcorn .
Yes, it's a terribly difficult road.

I’m not convinced drugs are that useful, unless you are the person experiencing it and actively choosing to stay as well as possible.
If someone is already confused and obstructive, I’m not sure staving off decline is in anyone’s interests.

Obviously I’m not an expert and there may be much more to it. But, MiL has had a diagnosis for years- maybe ten years? I assume she’s on medication because she’s doing really well. But all that time has bought her, is the opportunity to fall over more, to be more dependent, and more restricted in what she can do. And worst of all, the opportunity to see her husband develop dementia, decline and no longer be able to look after her. Which she’s upset and annoyed about. I think they’d have been happier had she declined faster. 🤷‍♀️

Somethings going on with mum (CH, alzheimers). She's been sliding further down the ghastly slope for a couple of months (very quiet, sleeps a lot, not interested in anything, struggles to understand instructions or suggestions, difficult to wake and not eating or drinking much). They are feeding her I think. The last few days she's had a fall, high BP, and an "unusual discharge". God, my mum would have been mortified that I knew that. A culture and bloods are being taken and BP repeated every day. I'm away until Monday but (excellent) DSis has been visiting. I'm thinking she could be near the end. It's just so fucking, unremittingly awful.

My relative changed his mind and agreed to the Memory Nurse interview. The private neurologist wants him on memantine to slow the memory deterioration and address the periodic public temper tantrums. But of course, the relative says there's nothing wrong with him. He doesn't remember what the neurologist said and he hasn't read the letter to the GP. He doesn't really understand why he was referred to the Memory Clinic and the GP was of no help.

I have to step back. He doesn't listen to me. There's very little I can do and it's causing me to lose sleep. He's still managing the basics and I just have to leave it there.

Yes. And my siblings still think she’s just difficult.

I mean, they’re not wrong, but she’s also struggling.

I’ve got much better at realising her anger isn’t aimed at me. It’s directed at me, but I’m not the cause of it. She throws around ‘no one’ a lot- no one cares, no one rings, no one listens, no one takes her on holiday… I’m not included in the ‘no one’, apparently.
Though she’s right about the last one mind. I like a holiday when I’m on holiday 😅

I think the fact that MIL often presents as not that bad means that DH does feel guilty about the fact that she is now in a care home. But the reality is she cannot actually do anything to look after herself and is not safe anymore.

This sounds exactly like my Mum. Unfortunately, despite a very clear diagnosis, there are some family members who insist that she's 'not that bad' because she can do X. When X is not much use without also being able to do other related tasks. So for example she can remember exactly what food is in her fridge and approximately when it was put there, but she can't process how to make that in to even a simple sandwich etc. Or she can remember that she has a ready meal in the freezer and knows that it is cooked in the microwave for 4 mins, but pressing 4.00 and start on the microwave (that she has had for years) is beyond her (even with someone on the end of the phone trying to explain it).

@ElderlyDilemmas exactly, she used to drive my DF nuts as she was always moving his glasses, papers, keys etc then forgetting where they were.

She once took the dog to the supermarket, let her out of the car for a moment then drove home forgetting all about her. She remembered about two hours later, drove back and the dog was still sitting there waiting. Or putting eggs on to boil then taking us to visit my grandmother (these are family legends as you can imagine).

@BestIsWest I'm pretty sure mine is autism/ADHD (my adult DCs are diagnosed, I know the signs very well too). Some of the traits have been problematic for my entire life and are now being exacerbated by forgetfulness and not having Dad to prop her up.

MIL is the same too she cannot carry out the simplest of tasks even though her memory is ok. PIL had what we call "tv dementia" meaning it was classic symptoms that everyone would recognise. MIL's is harder to deal with as she can remember lots of things but is unable to press a number 1 on a tv remote control.

We’ve put stickers all over things so we can say ‘it’s the red sticker’.

It’s exhausting, but then how tiring is it for her?!

I explained to my kids that when we were young the devices weren’t invented, so we didn’t develop a mental filing cabinet for that specific thing. So while I can work with and know about the ‘the cloud’, it’s an active process of knowing what’s what. When I am under the weather, stressed, tired, it’s much harder to remember what does what, what goes where, how we sign in to this that and the other. It’s in a temporary filing cabinet that isn’t always accessible 🤣

And the same here too. DM seems fine at appointments and on the phone to relatives. Its the small things which cause chaos, and she gets really pissed off if her carer or I tell anyone. Thankfully I have her carer for backup as neither DM or family believe me when I say her mental capacity is declining fast. Its frustrating every direction.

It’s the same with Mum @bigdogpaws. She knows everyone’s names, birthdays, what they do for a living, long term memory is great, knows who the Prime Minister is (good going at the moment!). Can’t tell me what she’s had for lunch or where she’s put the central heating thermostat remote which she can’t understand anyway, struggles to put the subtitles on the TV and can’t understand any letter she gets so write ‘Bestiswest to check this’ and stuffs it in a random drawer.
I drew a diagram of the remote control and instructions how to use it inside her diary but she’s put the diary somewhere that she can’t remember.

On top of the Alzheimer’s and the Hydrocephalus I strongly believe that she has undiagnosed dyslexia and ADHD (My DC are both dyslexic and one has AdHD so I’m well versed in the signs) and I think this complicates things for her anyway now my DF isn’t around.

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!]

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.

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

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.