Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

It could be the environment @Ferns26 . DAunt clearly masked her dementia symptoms better at home, when she went into A&E and was then admitted after a fall the environment was so unfamiliar that she couldn't anchor herself in reality and she shut down, sat in the bed huddled with her knees up staring and only really settled when familiar people came to see her.

DF was similar during his admission recently, add in a UTI causing delirium and a bleed on the brain, he just couldn't figure out where he was or who he was and became very scared and anxious. He is still on and off confused back at home, he keeps pointing at his chest and saying 'what goes here?' and only settles after you say his name after trying other possibilities such as his falls pendant.

He was better in the ward environment, A&E is so busy and disorientating when you are unwell without the complication of memory issues/dementia. DF also seemed to regulate more when either me or DH were there. Are there any familiar items she can touch (if she has a cat, one of the purring cat toys might help), or music or scents that you can bring in that might help calm her?

Another possible consideration is the possibility of an infection such as a UTI, any medication changes as some medication can cause unwanted side effects, dehydration and lack of nutritional intake will also not be helping, so have they provided IV fluids if she is not drinking?

@countrygirl99 @ElderlyDilemmas
We have a funeral next week, and OH went to try on his suit trousers (which he last wore to the funeral of ER's husband, a bit over a year ago). Definitely doesn't fit now, he's too tubby. We've both put on weight with the combination of stress and losing a day every other week to driving etc when we'd otherwise be doing something active.
@CrazyGoatLady I have it way easier than most here but I still grind my teeth and come here to grumble loudly about stuff. It's ok to hate all this crap. None of us are leaving our rellies to expire slowly in a puddle of their own incontinence so I think in practical terms the raging resentment doesn't seem to make much of a difference.

@Ferns26 everything @Choconuttolata said plus extreme tiredness. I dont believe anyone properly sleeps in hospital even on a ward. There's always something beeping plus people talking, snoring etc.

I believe my DM's dementia was given a good hard kick down the road during a 3 month stay in hospital when she broke her hip.

@MysterOfwomanY sometimes it helps just to sound off doesn't it!

@Ferns26 I hope you aren't stuck in A&E too much longer, it is so stressful even for healthy adults and older people without dementia.

@ElderlyDilemmas I hear you on the brainspace. I'm dealing with the priority things at work because I have to, but all the non priority stuff is having to take a back seat.

DGM's condition has worsened, unfortunately, and the hospital are not really able to say why. No specialist has been to see her, not even the heart failure team. If they don't get a specialist to see her tomorrow then I'll be requesting a Martha's Rule review, as they don't seem to be making any effort to understand why she is going downhill. It doesn't make sense that a week ago she was recovering and they were talking about discharge, but the past few days she's deteriorated quite significantly. She's been catheterised and was complaining it was hurting and possibly leaking, was distressed and agitated from breathlessness. DF thinks they are neglecting her. I don't think it's intentional though I think it's because she won't bother the staff, she will only tell DF or me, and if we aren't there she lets things build up so much that by the time she really needs help she's beside herself, and they can't always come straight away then.

I'm away for work for the week, my work is hosting a medical conference and I have a key role in it so I can't be there. DSM is ill and can't go and DF really isn't coping on his own. I feel awful leaving him with it and only supporting with phone calls where extra pressure is needed to make things happen, but there isn't much else I can do. Of all the weeks I have absolutely no ability to take time off outside of a dire emergency, this is it.

@MysterOfwomanY my diet and exercise all hit the skids last year after DF had his fall and I put on nearly a stone and lost all
my fitness. It coincided with DS moving back home after graduation and needing a certain amount of support (SNs), DD (milder SNs) going off to uni and a much busier than usual few months at work which is fortunately calming down again now. I am carving out time to exercise again now whenever I can even if it's just a 10 min video or a few squats. Also getting to parkrun whenever I can (I walk but its great for mental health). Thankfully my employers are caring and supportive but the bottom line is it's a small business and there's no one else to do my job.

@CrazyGoatLady hope the comference goes well.

I have just spent two whole evenings trying to persuade Mum to let me change her gas and electric suppliers. They never changed them and are paying £300 a month (it's a big house) just for her. I could have done it in half an hour but it has required two whole evenings texting back and forth going over the same things over and over (no point phoning, she's deaf and forgets everything you say instantly, in writing is the only way) but it is so wearing, every time I sit my phone down, ping. And I can't just change them stealthily because she would assume she'd been scammed when she found a letter or email.

Yes, I’m ok, thank you to whoever asked. I just can’t keep up with mumsnet at the moment.
Mum is going really well. We are having fun and games with the carers not being on time. The manager has spoken to them several times but the carers say it’s not possible to come at the times mum is down for. The best carer is leaving soon and the other one spends most of the time chatting but they are the best carers mum has had. They are lovely but focus too much on chatting in one case and are consistently an hour early or late, if not an hour and a half late for dinner and breakfast. It’s all in hand.
My sister has now moved and therefore my niece with her. My other niece is moving away for a time too. These are the granddaughters who said they’d do the cleaning weekly. As time went on there were lots of being unwell or car trouble that prevented them from visiting and now it will be weekends only and no idea how often for one and not at all for the other due to where she’s going being 5 hours away.
Thinking of you all and a warm welcome to the new posters.

MIL is still in hospital but has improved now that she's on an actual ward. There's been vague talk of more support when she comes out but as this is our first time dealing with all of this we don't what any support would look like. The main issue is can she safely get out of bed and go to the toilet in the night and extra care in the daytime is no help with that.

@StillNiceCardigan can she get out of bed safely at all ?
(My ER has a portable commode right next to her bed, which the carers empty).
That's the big divider. If she can't safely do that, but, crucially, can't remember that at 2 a.m. ....:(

@MysterOfwomanY the reason she fell was the effects of a change in medication not a physical inabiility but now of course after lying in a bed for several days, a loss of confidence and her general personality of wanting someone else to do everything for her I don't think she can safely get up

Having spent many hours with DM in hospital and now in the CH I can see that to have even a little independence around going to the toilet is so important and can be so under-recognised in hospital.

The main hospital seemed to default to commode. Absolutely no privacy or dignity. Just the curtain pulled round the bed space. DM found it very degrading.

The CH was a lot better with an ensuite shower room. Carers were also very aware of privacy so doors would be shut and carers would be as discrete as safety would allow.

It's not a safe discharge if she can't get out of bed and use a commode right next to the bed in the night. Use those words and be v clear with the discharge team.

When M fell and was in hospital for months she was discharged earlier than she should have been (they were emptying wards in preparation for covid incomers in 2020). She had a commode right next to her bed and carers four times a day as part of the discharge package. @StillNiceCardigan keep using the words "not safe" if you feel they are pushing discharge before your DM can safely get out of bed.

Sending to all of you who are juggling stressful situations with ER.
Things are (relatively) calm with my DM at the moment. I wondered if any of you have any advice on how to try to encourage ER to be a bit more positive and try to do some nice things occasionally? All of my DMs every day needs and 'mental load' type work etc are currently being met my someone else so in reality she has very little on her personal 'to do' list. But she refuses to do anything pleasant, because she says she's 'too busy' or there are more important things that 'we' need to do. She turns down offers of going out and if she has visitors (whether it's me or another family member/friend) she spends all the time telling them about her medication (all fairly routine preventatives) or moaning about irrelevant things (usually people who she thinks should be visiting her but haven't). Every phone call is either a list of things that 'need' to be done (never urgent and often unnecessary) or a lengthy complaint about something with no real relevance to her (eg where members of the extended family have chosen to go on holiday). She seems determined to spend her last few years in a fairly miserable existence. This seems such a waste since she is actually fit enough to do enjoyable things at the moment and I think she could be so much happier if she would make the most of the health she has. I've tried encourage her to make the most of what she has now. I have also tried telling her we ARE going out if I visit and it's not an option- but she either says not to visit or when I get there repeats the claim that she's too busy and refuses to get up/put her shoes on etc to go out. Do I need to just accept that this is her choice (I think there is dementia in the mix)?

You know how every so often you have a period when you are just constantly asking FFS what the hell else can go wrong, surely there's nothing left. I'm definitely been in one of those since November. On top of all the problems mum's Alzheimer's causes since November there was DH ilnesss, then finally had enough of goldenballs abuse and went NC with him which is causing more complications with mum, wrote off my car and now my elderly horse has Strangles.

Oh no @countrygirl99 hope the horse recovers soon. Poor thing. It’s horrible when one of your beloved animals is ill and you can’t explain to them.

@BestIsWest with elderly horses Strangles is either very mild or very bad. I'm keeping my fingers crossed that as he's the last horse on the yard to get it it's the former, but he has form for dramatic illness. It's especially frustrating because the yard was on the countdown from last symptoms to testing for all clear so lockdown is now extended for at least a couple of weeks. And my poor washing machine might start complaining that I'm putting my yard clothes in twice a day. I've never been so clean as I'm showering every time I go to the yard which is twice a day.
But on the positive side I've treated myself to a large glass of wine pre 7pm as the hire car went back yesterday and I can't collect my new car until the end of the week so if the carers call from the evening visit someone else can drive there 😄

Poor horsey, hope he gets better soon @countrygirl99

DM showing increasing signs of cognitive decline although I don’t think actual dementia. Sometimes she is very clear and with it about what she wants but in the last two weeks hasn’t been able to make a decision- choosing a paint colour and pruning some roses (which branches to cut). I think both of these are activities where she won’t admit she can’t do things like she used to be able to - she’s 89 and wants to be still 55 - to be fair she is still on her feet, but she just can’t manage this stuff any more and although I’m helping, when I ask her what she wants she can’t make a decision such that she can do the action and progress to the next stage, iyswim. Can’t execute. But also won’t outsource - determined not to pay for any help - and then gets frustrated and blames everyone around her, becomes a martyr who “has to do everything.” No you don’t and you could easily pay to get shit done.

A lot of this is personality but it’s getting worse. She will procrastinate about the most unimportant things whilst totally ignoring that the house is squalid, she needs a cleaner, DF is 97 and can’t do the things he used to, and she can’t actually stop time.

🍷even though I don’t really drink anymore, you know what I mean…

Sorry to hear about your horse @countrygirl99

🍷 and 🍫all round.

We had the opposite problem with commodes at the hospital in that because DF usually mobilises with a stick they assumed he could walk to the toilet even when his oxygen was de-saturating into the 70's on his last admission and on this admission he was so confused he shouldn't have been walking without supervision. I had to request that they use a commode. Last year during his admission they had him down as independent despite the fact that he can't see properly and was found with faeces all over himself and his hands on multiple occasions. They tried to discharge him home with no carers in place after asking that I go an empty his commode once a day.

DF is so confused and tired today after having to go back to the hospital for an echocardiogram yesterday with DH. The technician was so impatient that DH had to have words with him as he was trying to move DF without explaining what he was going to do first and what with DF's COPD meaning he can't lie flat, his age and his processing issues due to his confusion it was just unnecessarily distressing him. DF had to be fed by the carer today at lunchtime because he was so tired he was refusing to eat. She was so worried about him I ended up having to go there this afternoon to check he wasn't deteriorating and needing re-admission. He slept the whole time I was there and when his carer turned up in the evening he tried to sit down on his Zimmer frame thinking it was his commode.

MIL has now tested positive for covid. She must have caught it in A&E. We've had to get the masks out again and buy covid tests as we were sat next to her for the whole time.

The care on her ward is diabolical and she needs to get out. Unfortunately DH goes into frozen mode rather than doing anything useful. Not that there is anyone around to ask what on earth is going on.

@StillNiceCardigan @Choconuttolata Hope you get some rest tonight: you are going through much worse than me. And you should have more help, it’s awful that the hospital are is so bad.

Oh no @StillNiceCardigan, does she tend to get quite poorly with COVID? Do you think the Covid will set her back so she won't get out of hospital as quickly. It is so hard when care isn't good because you run yourself ragged going to and from the hospital to make sure they are okay.

Fortunately she is symptomless with the covid I'm the one who gets really ill with it. We're trying to get her discharged to a care home but the covid means that there will be a very small number who will take her.

I took some time off work today to go with DH to the hospital to try and give him a bit of a break. My manager is sympathetic but I have no idea how long this will go on for.

My sympathies to all.

The nurse at DM's CH was finally able to get a blood test done and get hold of the elusive GP. Results were not good, DM has an infection and her kidney failure is now at end stage. GP has prescribed the EOL pack. It's not expected to be needed immediately but in a week or so.

So I am now talking to DCs, making sure that I have the numbers for funeral directors in my phone.

GP is going to have to shift his arse and actually go and see DM (currently about a month since he last visited in person) otherwise he isnt going to be able to sign the death certificate when the time comes.

Funny how everything comes down to boring practicalities isnt it?

@GnomeDePlume some unmumsnetty hugs to you. I hope you and your family are able to get through this period as best you can.

@StillNiceCardigan it's so horrible when they're not only in hospital but you don't trust the care isn't it? Have you been to PALS or contacted the ward matron to discuss concerns? I managed to speak with the matron on DGM's ward yesterday in between conference sessions and she was reasonably helpful. Whether there will be any change is a different matter...

@Choconuttolata sorry to hear they were so rubbish with your DF today. As an ex NHS clinician I'm so dismayed by what it's become, the standard of care we have to accept. Utterly grim.

Thank you @CrazyGoatLady but TBH I feel a bit of a fraud. We have been circling towards this stage for months. There have been a few times where I have thought DM wouldnt pull through but then has.

I am so glad that this stage is being handled at the CH not in hospital. The carers and nursing staff do care. It isnt perfect, things sometimes go wrong but when that happens steps are put in place to put it right.

💐 @GnomeDePlume. A little warning though, MIL lasted a couple of months with end stage kidney and heart failure. I hope you all get the support you need and her passing is peaceful.