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.

I am not hugely in favour of legalised euthanasia. Someone had mentioned either in this thread or another about adding to your health POA no aggressive medical treatments after a certain age plus no flu jab or antibiotics. When I think back DM had a mastectomy age 80 and was treated with a lot of antibiotics for a very serious covid infection about 2 years ago. With the benefit of hindsight it would have been far kinder to let either of those run their course, rather than have her be in her current state.

I look at my DM now: bedbound, confused, frequently distressed, doubly incontinent, incapable of doing a single thing for herself and wish that something would end this for her.

The problem with Advance Directives is that you have to recognise the risk.

Despite her own DM having had it, I dont think my DM recognised that she could get dementia or recognised that the end could be so drawn out. I think she genuinely believed that her physical health problems would kill her quickly at some point. Not that they would conspire to trigger vascular dementia.

I couldn’t agree more. MIL in identical situation with vascular dementia following strokes. Now 93 bed bound unable to do anything yet this week has had another blood transfusion and had a picc line fitted so she can have more antibiotics. I asked the doctor again if this is really the right thing and they look at me like I’ve got two heads. They are trying to get her stable enough to be able to move her to a care home. It baffles me

There comes a point where you have to decide whether it's helping someone to live or forcing someone to live and I suspect if you asked 50 people when that point is reached you'd get at least 30 answers. But some people seem to see someone they love/a patient dying as a personal failure on their part even if that person is 99 and has been totally incapable of anything and in pain/distress for an extended period.

It’s really difficult as well because the DM I knew 10 years ago would not choose to be alive the way she is now, I absolutely know that. But today’s DM still appears to want to live despite being more or less bedridden and not able to do any of the things she used to enjoy, so I am relieved that I am not required to make a decision on that, but I have said no to heavily assisted feeding and make individual judgments on use of ABs etc.

Not really apropos but the care home runs a knit and natter session, old DM would have loved that. She used to run the machine knitting society and drive the old dears as she called them when she herself was in her 70s.

I think after Shipman and then the Liverpool Pathway scandals HCPs are frightened to do anything which a difficult relative could complain later was not extending life.

My DB has made HCPs in DM's CH frightened that he will make a complaint. Knowing him he will huff and puff and do precisely nothing because that is what he always does. Unfortunately they dont know that.

@rookiemere my DM would also have enjoyed many of the activities on offer in her CH. Unfortunately a combination of dementia and DB's jealous presence meant that she wasnt able to join in.

Hello all… checking back in after a while. Mil is now in a community hospital to try and rehabilitate her a bit. Her dementia is proceeding and she can be quite vicious to DH at times, and about the staff when she thinks they aren’t looking. Sweetness and angelic light when they are. Really nasty. I can’t tell if it’s a mask slipping or ‘just’ dementia. She still doesn’t have a formal diagnosis but the nurses talk as though it’s a given.

The Golden side of the family can still do no wrong and seems to be asset stripping the house at a rate of knots. Yuck. It’s quite possible that the ‘carers’ were at it too previously but either way loads of stuff is gone and no way to prove who took it now. It’s just very depressing.

Seems there’s now finally agreement that a home is the only option, so finding somewhere suitable is in progress. All a bit grim and stressful really, not helped by the lack of certainty with timescales etc. At least she should be safer in a home.

Anyone have any experience with knee replacements for those with mild dementia (and Parkinsons but the knee replacementis supposed to help her balance and mobility) ? DM is powering ahead with this and I'll bet she hasn't told them about her dementia diagnosis. Last time she was sick in hospital she had a major issues with memory and aggression, which her team put down to being away from home and being ill. Am I right to worry that its likely to flare up again?

I’m no expert, @turkeyboots , and maybe things have improved in the anaesthesia field, my experience has been that anaesthesia is hard on the brain. DM and DGM were both prone to extended periods of confusion. It took a while for them to be back in the room.

Had a difficult conversation with DM last night where she was very angry that she is having to deal with all the difficult bits of life, including some business stuff. In her anger she said there’s no point getting PoA because she needs help now and it will be no use, and that she’s going to give her most valuable asset to charity now so she won’t have to worry about it any more.

Thing is, I could help with most of it if she’d let me, but thinks I have to be physically present and go through all her papers to do so. I’m not driving 3 hours each way to sort out her huge pile of paperwork, take her out for lunch, visit a couple of elderly relatives and vacuum her curtains just to do jobs like renew some insurance!!!! 🤬

I could do so much if she’d just loosen her grip a bit. And having LPA certainly wouldn’t hurt!

Anyway she’s calmer this morning, so we’ll see whether I can have a sensible conversation with her. She gets so overwhelmed she can’t do anything, and then drags me in to also do nothing for a while.

Thanks @PrizedPickledPopcorn better brace for her forgetting she'd been divorced for 30 years again. And prime her nursing team.
Hope you have a better conversation with your DM today. I feel my DM just wants an audience for the drama, rather than actual help in similar situations. Smiling and nodding and not offering an opinion seems to help her more. Its immensely frustrating.

I do a fair bit of good listening, and have realised that a lot of the time her anger isn’t aimed at me even though it sounds like it. ‘No one helps me!’, apparently means ‘no one but you’.

But quite often she gets into a total mess that’s really hard to sort out retrospectively. Books a holiday she can’t actually get to

Oh dear. I wonder, given the dementia, if this might be one of those "solving yesterday's problems" things. Unless she's in pain with it of course. Is she likely to forget she's had a knee replacement and try to do too much too soon? Definitely worth letting the staff know. DH had a hip replacement at a time when he had terrible memory problems. I was terrified he'd forget he'd had it done and walk off without his crutches on day 1.

@turkeyboots my MIL had a knee replacement and Parkinson's but not dementia. She was absolutely crippled with the knee and it was tough afterwards but transformed her quality of life. Sadly she died of unrelated causes a few months afterwards though.

But also, my mum broke her femur 2 years ago and had to have surgery and physio, no dementia but the delirium afterwards was absolutely shocking, it was as if she had gone from no dementia to fairly severe overnight and it lasted several weeks, I do think it was the start of her memory going with hindsight (also precipitated by my Dad having a catastrophic fall 6 months later).

So, not ideal. What I would want to try and establish, is how likely she is to comply with her physio and walking aids afterwards, I think the outcome depends massively on this. My MIL did her physio diligently and had a good outcome. My DM did not comply with hers in the first few weeks because she refused to believe she had broken her leg, had only vague recollection of being in hospital, etc. Refused to use walking aids. Fortunately for her she was prior to the break as fit as a fiddle physically and very active and she made a good recovery despite this but it could have been very different if she was frail and inclined to just sit around all day.

@Isitsticky I think you have it right there, a new knee isn't going to fix the ongoing issues and I do worry that she'll end up in pain and refusing to do the physio if she forgets why she had the surgery. The delirium earlier this year took us all back, it was very alarming to witness. The knee isn't very mobile due to an accident years ago, but its not sore.

I've heard knee surgery recovery is hard. I wouldn't have wanted my mum to have it early on in her dementia. In fact she fell and broke her hip at that point so she had to have surgery on that and after 4 weeks in hospital afyetwards, her dementia had progressed alarmingly. She couldn't go home and moved into a CH.

I think DM was shoved a long way down the dementia track by the surgery on a broken hip/leg.

The delirium in hospital was indeed terrifying. DM ended up in hospital for 3 months as one thing after another went wrong: repeated UTIs, a stroke, heart problems, diabetes problems. Didnt engage at all with physio. Ended up going from hospital to CH.

No way would I recommend surgery for anyone already on the dementia track.

Knee ops are a bugger and the prehab and rehab are very important.
Weirdly hips aren't quite as bad (though the same still applies).
I have had news from my elderly relative, that her skin biopsy was clear. Which is good - I mean I'd pick an aneurysm or maybe a massive stroke if something has to polish her off.

No way would I recommend surgery for anyone already on the dementia track.

I entirely agree with this.
Anaesthetics are very hard to recover from when someone has dementia, and they can make things much, much worse.

I know two women who had knee surgery earlier this year - both in good mental and physical health, apart from the dodgy knees, and they both struggled. As well as the physical aspects, and one experienced repeated wound infections and the other reacted badly to the medications she was on after the surgery, they both were surprised by the strength of the emotional and psychological impacts of the surgery.

Knee surgery does seem to take a lot out of you - and it's a difficult and lengthy recovery period.

I’m in a bit of overwhelm at the moment I think.
Since my last update I got onto Social Services but once they established my parents would be self funding they sent me on my way to find a cleaner etc privately. I’ve started that but it’s hard going as DP’s area is deprived, out of the way and few people seem to want to take those jobs there, or are looking for more hours (I’m after about 2 hours twice a week to start with).

But I’ve run into a bit of a catch 22. In order to get a cleaner the house has to be in a state where they can actually clean. At the moment it’s completely unmanageable, piles of hoarded stuff everywhere. So I’ve started on clearing up but it’s such hard going. Not just the physical work but it’s almost impossible when both parents are there and complaining. Leave that there, I want that, etc etc. They are agreeing to put things away, put in black bags, etc, but it’s slow going. At this rate it will take me weeks to get it to a position where someone can come in.

On top of that DF has developed some paranoia. He’s recently stopped going to the shops because he’s worried he’ll fall over in public so he’s not moving around much; DM says he’s not eating as much as before. He’s generally depressed and cantankerous and everything is wrong: I think he’s giving up, whereas before he was always keen on reaching 100. In this state he has convinced himself that DM is having an affair, on the basis that “someone is coming in the house at night and taking things away.” Too long to go into detail but I’m sure many will recognise the paranoia / delusion. As it happened last week his Gp called about his blood test results (he has a mild form of leukaemia managed by meds) and DM answered and talked to the GP, who got him in that afternoon, and asked him about this. The Gp could then clearly see DF wasn’t thinking straight. He says he thinks he mostly has capacity for the time being but will note the change in state of mind on his file. No tests as they would probably agitate DF and he likely wouldn’t agree to them. I agree with all that, but it doesn’t get us anywhere (I don’t want treatment for him but on a practical basis, it’s just going to get worse). After this DF is grumpy with me “because I tricked him into seeing a psychiatrist.”

So on we plod. I’m determined to get some help in next month but one or two cleaners asked for photos and honestly I couldn’t send them any just yet, they’d refuse to take the job. I always thought I’d be clearing the house after they’d gone, not while they’re still in it, and dear God it makes it so hard. Plus I really can’t bear my mother’s company.

Feeling heavy at the moment.

@MotherOfCatBoy god that sounds hard.

Social Services do seem to be quick to back away when it's not their budget. Dont want to even suggest names of businesses you could contact.

It was difficult enough clearing DM's kitchen so DH and I could fit a new one. At least DM still had her marbles even if she did have mild hoarding tendencies. Tins & packets of food dating back decades, the 'special' single purpose tools without which eg jam making wouldnt be possible.

Yup. There are abandoned gardening tools rusting in the utility room, god knows what chemicals DM uses on the garden, bits of rotting food, old newspapers, random odd slippers, a bag I used to take to school 40 years ago.. that’s just one small area. If I can get the floors clear and the worktops clear that will be a start even if all the rest is jammed in cupboards.

Can you get someone in to help you? Work together on one room, then it goes on her roster to keep from then on?

We do tons, at MiL and Fils. As soon as you leave it’s back again.