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.

My DF, who is in the deepest, darkest depths of Alzheimer's - unable to move or speak - is given antibiotics for every UTI or chest infection. When I've asked about it, I'm always told it's for comfort. DM has POA.

MIL was given ABs for chest infections because breathlessness and fever was causing distress. They kept her off them until that point because she was dying. I think it's one of those areas that's difficult to know what is best to do and every decision is wrong in some respects and right in others and how do you balance. MIL had capacity but couldn't speak/write after a stroke, she could only show signs of pain and distress and nod if she was offered something to relieve symptoms.

@GnomeDePlume sending you best wishes.

In some slightly brighter news, my mum seems have improved and is less confused and more stable on her feet.
We wandered around Tesco and went to the bank without incident

However, whichever department her GP has referred her to hasn't sent an appointment letter and my mum won't follow it up... I'm nagging her to speak to the receptionist
We need to get to the bottom of what's going on, so we can stop it happening again.

@PrizedPickledPopcorn I used the experience with DMIL (dementia, no LPAs, court of protection) as the 'in' to get DM to sort LPAs.

Though the LPAs havent really been that much use.

@Kirschcherries one thing DB and I have agreed on is that we do not want DM to go back into hospital. It would kill her in the most horrible way (stuck on a trolley in A&E, no privacy, no dignity).

It is only in hospital that DM would be able to receive any IV treatments. DB rather naively thought the district nurse could do IV fluids but I did explain to him that would be highly unlikely because of the monitoring required.

@GnomeDePlume we are on the same page.

@GnomeDePlume I’m glad your DB understands that hospital should be refused at this stage. I held that line, it was very hard and I needed the support of my siblings. Sending you strength as always 🍸

@GnomeDePlume your poor Mum. Where's an aneurysm when you need one :`[

I know it's tricky. My Mum was in hospital and we'd been told her kidneys had stopped working, so we knew she wasn't coming out. But she got UTI-related delirium (horrible) and I was glad they poured different ABs down her until that went away.

When another elderly relative was very obviously dying in hospital they had, nonetheless, put him on antibiotics, might have had a feeding tube too, can't remember, but then I could at least shove his LPA under their noses and say, LOOK AT WHAT HE WROTE HERE, I THINK YOU SHOULD ASK HIM IF HE IS OKAY WITH THESE THINGS.
As he had clearly written that if he was on the way out with no hope of recovery, he should only be kept comfortable and no further treatment given. He did retain capacity but was so, so unwell.

I have been sure to tick the "yes, you can discuss withdrawing treatment with the doctors if I'm f-cked" box on my LPA. Don't want my OH traumatized by watching me suffer through over treatment at EOL.

I remember years ago a friend's mum had brought her mum to live with her after she developed dementia, by now mid stage. She got pneumonia and the GP (old family friend) prescribed antibiotics but deliberately told her that if she didn't give her them she would probably die and that might be for the best before she suffered more. So everyone came to say their goodbyes and bedside vigils were sat. Until one day she woke, sat up and demanded breakfast. After another 6 months of chaos including 2 nighttime escapes and putting a plastic kettle on a gas hob while friend's mum was stripping beds upstairs she went into a care home where she declined to immobile nothingness over a couple of years.

We have had so many 'is this it?' crises that I am now starting to wonder if DM is in fact immortal!

Though, in all honesty, DM's health is in my view teetering on the edge. Her kidneys are failing, her heart is failing, she eats very little though still drinks.

DB is too close to see this decline. He insists they still have conversations though from what I have seen this mostly consists of him talking and DM saying occasional words.

I very much recognise the situation of the brother thinking that him talking is a conversation!

Very difficult visit with my parents yesterday.

I don’t post often as others are more at the sharp end than me - mine are both still in their own home and more or less mobile at 90 (DM) and just turned 98 (DF). Dad is increasingly frail though and DM just can’t accept it, or her own limitations (heart failure, gets exhausted easily). She won’t accept anyone in the home except me and she is a hoarder. Consequently I help with finances, hospital appointments, shopping, days out, moving heavy things around etc, but I don’t do any cleaning for them anymore because within a week everything’s back to dirty and untidy.

Yesterday it transpired in a conversation that, apparently because cats are opening their council food bin (I think they’re not closing it properly), DM is putting waste food down the toilet.

I was flabbergasted and pretty much hit the roof. She said DF had said it was fine and he didn’t deny it though she has steam rollered him forever, so I read them both the riot act.

On their back yard (I put washing out) were several bowls of rotting food, mostly vegetables. In a heatwave. DM says they’re there to put in the compost but they had obviously been there at least a week. One was a packet of broccoli still in the plastic, brown and slimy. I went to put it in the bin and DM was practically fighting me for it, shouting “I want it, give it to me.” I cleaned it all up and put them in the food bin.

However this with another example from last week makes me think their judgement is going and they’re not safe at home anymore.

Last week’s incident was that the curtain on the stairs-window got tangled in the motor of their stair lift. This has happened multiple times before. When the lift was fitted I suggested they get these curtains shortened as they are floor length and right in the path of the chair. DM refused. Three years later they have had lots of problems including the curtains being pulled off the rail. I have replaced them before and reminded them that they should be shorter but this time we had to call out the stairlift company to fix it (they were great, arrived same day), but they had to pay 140 for the call out. Yesterday I took the curtains away. Dad’s not safe on the stairs without the chair.

Besides that DM is volatile, has frequent outburst of temper and threatens Dad, though I don’t think she’d ever do anything. She just has a lot of anger.

Today I called Adult Social Services to arrange a care needs assessment. They at least need a cleaner and maybe someone to help Dad with meals. He’s in favour but DM has always resisted. I have left them to it until now as they’ve always buggered on ok, but I can’t leave it anymore. Perhaps they will listen to someone external rather than me.

SS said they had to ring themselves as they needed their consent to arrange a visit, so now it will have to wait til I’m there next, which due to holidays will be August 12th.

Sorry for the rant. Where’s the gin?

@MotherOfCatBoy that sounds horrible. Do you think your parents really do still have capacity or is it that they just havent managed to come to harm yet?

@MotherOfCatBoy that sounds very sharp edge indeed. I’m sorry. It’s really hard when we have to allow them to live in unsafe, unsanitary environments. But without their consent we can’t change anything.

If it helps, I think that generation did use the toilet to dispose of food waste. I catered a large event, as part of a team of volunteers. Two of them carried a huge pan of leftover mushy peas to the toilet and flushed it all down. I was 🤢 for all sorts of reasons! Actually that’s a fond memory. Total chaos as a large group of elderly ladies offered up Bonfire Night food, with huge queues and not a single food safety certificate between them.

@MotherOfCatBoythat does sound horribly familiar from what my DPs were like towards the end before they moved into the care home. I think with many old people the two of them prop each other up and they can just about function together, but when mental faculties start to decline then you’ve got two of them to contend with. I was nodding at the refusal to make sensible and inexpensive adaptations resulting in costly bills.

You absolutely did the right thing referring them, I hope something comes of it. What’s their financial position like, as this is often what it comes down to
?

Flushing food down the toilet definitely seems like a generational thing as I remember seeing that my whole life.

@MotherOfCatBoy I had a lot of issues with spoiled food and compost piles (I recognise the revolting slimy vegetables - which I also had to fight to throw away!) so solidarity and I’ll line up ‘Give me strength’ cocktails for you 🍸🍸🍸

I think you’re doing the right thing with social services - if a relative is that concerned for a couple over 90, a basic visit to see the lie of the land should be an option really, to establish ‘capacity’

@MotherOfCatBoy That sounds horribly familiar. Like rookiemere said, I think often a couple can just about manage until one declines a bit further then everything starts to fall apart. This was certainly the case for my parents. They also started to do odd things with rubbish. I know Mum worries about getting in trouble for putting the wrong things in her bins so I think the strange behaviour started when Dad was too ill to deal with it for her. She also started putting food waste down the toilet and also piling up packaging and broken things in a spare room. At the time she claimed that the packaging/broken items were things she might want later but more recently she's been very concerned about me putting things in her bin so I suspect this was always about a fear of getting it wrong and being in trouble. I'm definitely in favour of increasing recycling etc but it must all be very confusion for older people with cognitive decline, especially since where Mum lives the rules seem to change all the time. I know tend to leave with a bin bag full of junk every time I visit.

Thank you all for the solidarité, that does make me feel somewhat better. Isn’t it awful to be in the same boat!?

I rang today but they (SS) said they have to have my parents’ permission to arrange a home visit so they have to call or they have to be with me when I call. I’m away next week so that will put the first step off by a week or so. Aaagh. I know this will be because of the “capacity” point but it leaves me stymied for a bit and I can’t help thinking SS use it as an excuse to bat away all but the most determined. Anyway, I’ll try again when I’m next with them.

To answer a couple of questions -

They own their own home and have savings so they could definitely pay for care. DF gets a Coal Board pension as well as state pension so in terms of disposable income they’re fine. They have enough savings to fund maybe a year of a care home and if they needed longer then the house would go (but I worry about the state of it as it hasn’t been maintained and would need a shit ton of work to empty it and get it up to saleable condition).

Capacity - this is a difficult one.
DF - still usually quite rational, can do online shopping and Amazon, can arrange someone to cut the hedges, understands GP and medical appointments etc. But can’t cope with modern phone systems or much else online he’s not familiar with. And struggles with new situations or problems.
DM - rational when it comes to shopping, money, savings, things she wants. Completely irrational the rest of the time but no different to how she’s always been? Just - more so. Digs her heels in if something contradicts her way of seeing things. Can come across to professionals as a sweet old lady.
If I had to judge, I would say they mostly do have capacity, which is why the food down the toilet thing flabbergasted me so much. That was the point I thought, right, enough, we need help. But if they end up refusing it, I have to accept that. I think DF wants help though, so ultimately I think it will happen if I can get them through the hoops.

@MotherOfCatBoy I'd empty and sell cheap as a doer upper. The chances are the time, effort and expense wouldn't be a massive help. Spend the time visiting and being a daughter. Assuming you manage to get to that stage. 🤞

@countrygirl99 I hope I do. I’ve followed your experience and I hope visits to your Mum are easier now in that regard.

As for the house, when I stop fantasising about putting a match to it, yes I agree - empty it, strip to the walls, fix any obvious leaks etc, and walk away.

Got a phone call this morning from the care home, DM is suddenly much weaker, hardly eating or drinking and what she does take in her mouth she holds there and doesn’t swallow. They’ve requested a GP visit and I presume an EoL pack will be prescribed.

I know from so many experiences on here, particularly @GnomeDePlume not to assume This Is It, but she’s further down the exit ramp than she has been before. I’m already planning on visiting today so will see for myself.

@funnelfan 💐the sudden slip down the ramp is shocking. In many ways I dont think there is a lot to do to stop it, just make it as comfortable as possible.

If your DM stops drinking the mouth moisture foam sticks may help to keep her mouth more comfortable. Hopefully these are available on request.

Is there a ‘Groundhog Day’ cocktail on the menu please?

Mum rang three times today, to tell me her tale of woe. It’s the same one we’ve had every call for a while, and nothing on it is getting resolved. I’m going with, ‘I hope the LPA comes through soon, so I can help more’.

@bigdogpaws I was slow to recognise the bin thing, as I’m in a different area with different rules. She became quietly obsessive about not putting anything in the general waste bin. She’d put things in the closest plausible bin, and anything she really couldn’t allocate would be placed next to the bins for the bin men to decide.
I’m amazed they still take them to be honest, but it’s sorted roadside so I assume they have some capacity for reorganising everything 🤣

Honestly, it’s probably caused a lot of people OCD type compulsions as they panic about whether the plastic is stretchy or rattley.

@funnelfan hopefully she's not in distress. But it's a nasty shock. Take care of yourself.

Nice visit today. As people have said, it's good to be a daughter relative again rather than a nagger carer. And another relative is visiting her on Sunday!

We got her an ice cream and a cookie, measured her up and pointed her at the Next website, and said, SPEND YOUR MONEY ON SOME NICE CLOTHES. The horse has been led to water. I suspect it will wander off without drinking but you never know.

We sorted some of her late husband's clothes ready for the charity shop, but they're all winter things, so they're in a neat pile in an unused bedroom waiting for the autumn.

The concerning thing is she has a sore mouth. We both wonder if it's related to whatever the medics were doing biopsies for. She shrugged. I shrugged. I said she may as well use it as an excuse to order more ice-cream.

Measuring her up, I'm glad to say she's certainly not too thin. Good to have a little bit in reserve in case anything kicks off when you get old and frail.

I know the shit is still waiting to start flying so I very much appreciated today. It won't last...

I’m with mum, GP thinks she’s had a stroke (weakness, face drop) but can’t be certain unless she’s scanned and we’ve all agreed not to take her to hospital. She’s not showing any signs of acknowledging I’m here (usually I’d get a squeeze of the hand and a smile). Her eyes are half open and flicking about, and she has the odd hiccup attack but otherwise is quiet and peaceful.

The main concern is that she’s can’t/won’t swallow so it does indeed look like This Is It. GP has prescribed the EoL drugs, district nurse has been notified. My SIL has joined me and I’ll stay over with her tonight. Nothing to do now except wait.

Hello- long time lurker, was active when my mum was still alive and keep on popping in because I have friends whose parents are becoming infirm and there are always good tips in here.
When my mum was past being able to sort her recycling I was able to contact the council and they gave her an exemption. It might vary from council to council but it's worth asking.