Cockroach Cafe 🪳Autumn 2022 🪳

Anyone having trouble filling prescriptions? Mum's sertraline and donepezil are sent to me by Lloyds Direct. Repeat prescriptions were ordered at the beginning of last week but haven't been despatched yet as they are out of stock.

The desire to go 'home' is one of MIL's constant themes. I know SIL finds it particularly distressing. We need to keep reminding ourselves that one of the triggers for the crises she experienced before being admitted to hospital was the obsession with getting 'home'. Home, from the place she'd lived all her married life. What she really wants is to go back to her old self, and not be surrounded by strangers all the time. And the longer this goes on, the more strangers there are in her life.

@funnelfan that makes sense about the wanting to go home. Someone from the social care team saw her today & are calling me tomorrow so will see if they can advise what they think will be best.

@EmmaAgain22 give yourself a break, the stress of all of this is greater than you think. Remember the saying about out on your own oxygen mask before helping others? No one will accuse you of not doing enough for your mum, they know and accept that you will/should have your own life too. Have you set out what your limits are in terms of what you can and can’t do? Regarding getting irritated, ten years ago I’d have been having right old rows with mum if she was behaving like this then. Somehow a switch flicked several years ago and I’ve allowed it to wash over me instead. I’m afraid I’ve no idea how that happened, but a couple of factors influenced me. One is I encountered the advice to meet people where they are and not force them to your perspective, particularly in relation to people with dementia. The other is that mum is no longer the mum I’ve know most of my life. She doesn’t have dementia, and she still has bits of her personality and sense of humour. However she has changed cognitively in that she can decide what channel she wants to watch in the telly, but can’t work the remote control any more. It’s allowed me to detach from the emotion of a lot of it, although that’s going to be tested a lot I’ve the next few weeks.

@seanbeanmarryme , mums social worker said to me that when people ask to go home, what they really want is to go back to their old life when they had their independence. In that case, home doesn’t exist any more, even if they returned to their bricks and mortar. Are you getting support from care and social professionals regarding the move?

My mum has now moved from her ward to an assessment centre, with seems to be halfway between the hospital and a care home. She’s improved massively by being properly looked after for a few days, which is proving to me and DB that a residential care home would be ideal. We’ve also had a diagnosis for the root cause of her symptoms which are only going to get worse not better. But she’s still asking when she gets to go home and I’m dreading that conversation.

Over the last two days I got chatting to the relatives of the other ladies in mums ward, sharing stories and sympathy. Lots of nods and smiles across the bay during the day at all the things our mums are doing and saying. There’s such a strength to be gained from solidarity of women going through the same thing, online or in real life.

Dad seems to be wavering on Mum going to a care home as she was asking for him to take her home today. I'm not sure she really understands or knows where home is. Does anyone know if the hospital will advise on whats best or will the decision be down to us as we have POA?

I found they panic about completely different stuff than I do. I suppose their big worry is being sued when someone dies. Mine is always the practicalities of "what will I be asked to do".

I'm trying to unpack my feelings a bit as mum is upset by me being upset

She can't seem to understand that I was stuck with the timings this weekend as I was seeing a friend in the area yesterday and wouldn't have been able to get home safely in the snow. Had to cancel original delivery due to effing snow. It's been a very long week.

To be honest, I have a fear that someone - doctor, social services - will accuse me of not looking after her properly. Also, I am massively irritated by a lot of what may be standard behaviour.

There's something wrong with a household thing, a neighbour tried to help, saw my irritation and said "it may not be a big deal to you, but it is a big deal to her". I understand that, dad was the same when he was ill. But unfortunately I don't feel less annoyed and irritable.

I think I've learned with Dad that you panic when the medical professionals do, which is very very rarely! I've been way too absorbed in monitoring Dad's every symptom, which is one relief of him being in the hospice and I can relax on it.

That seems quite feasible, yes. I don't know what, if anything, we should do about it though.

The GP has always been good, but now appears to have reached the end of his tether with the job full stop. I'm interested in opinions as I have zero experience of elderly so a lot of things that alarm me might not be cause for alarm.

@EmmaAgain22 my Dad started making noises about a year ago, it's not grunting but it's hard to explain and it increases when he's agitated about something. The palliative care nurse said it's quite often pain but they're not processing the signals properly?

Mum constantly makes noises like she's in pain
Turns out she isn't, it's just a noise...I think this might be a post stroke thing?
She is still extremely wobbly and this morning, she said she she was so dizzy she could barely stand, but she seemed normal
Then after a lie down, she's fine

Someone said to me "you need to think of her as being as fragile as a baby". That's why I hoped she'd have a daily carer of some kind but the private carer thought she didn't need one

Badger gosh, that's confusing.

I've just burst into tears because I was hanging around at mum's to get a Tesco delivery put away for her and they cancelled it. I think the combination of snow fucking up last week, the general state cf my life, and looking after mum just finished me off.

now she's saying we mustn't get more deliveries because apparently I can't cope with it. I tried to explain it was just a bad week and she said "the problem is trying to help me". I mean yes, but what am l meant to actually say?

I do have a passionate hatred of xmas so there's always something that sets me off this time of year but she can't seem to understand it's not the Tesco delivery, I shudder to think what she'd put in place instead!

I checked today and they said he's on a "soft food" diet, and they're just gently encouraging him. He told me he'd eaten yogurt and ice cream but they said he's not had anything at all today. I also think they've got his number as they've moved his bin....!

Badger that seems to be a procedural issue - surely there’s a cross check between kitchen and care records to make sure patients/residents don’t get something they shouldn’t.

Emma, yes my DM gets IBS type flare ups , but she’s had them all her life. Obviously they wear her out a bit more more as she’s got older. I’ve not really linked them to her falls though.

I’m typing this from mums ward during lunch service. She’s really enjoying the food here, and she’s certainly packing it away.

Badger oh I see. This is a bit strange. I hope you get it sorted. Sorry, I feel your pain re the phone etc.

does anyone else's oldie have constant stomach problems? Mum is having another flare up and I have realised all her falls have been preceded by flare ups of this - I realise there's no medical connection but it just struck me recently.

I think the problem is that the kitchen staff go into the rooms and ask the patients what they'd like that day, rather than the nursing staff guiding it. I'm going to have to catch someone today, and explain that he can't chew. He does really well on plain yogurt, Fortesips and he's even been enjoying ice cream.

I am going to have to start saying No to some of his requests - it's like I'm enabling his madness and being swallowed whole by it too.

how frustrating Badger. Are you trying to get to the bottom of the food issue - could it be your dad is insisting on trying solid food rather than the respite place pushing it on him?

sound like respite is just creating a new set of tasks for you to run around. Can you say no to any of them?

Hello all <waving>

Badger why on earth would do that? Sorry to say it but it smacks of someone making a very weird decision somewhere along the line.

I'm sorry this is so hard on you.

Argh badger why are they doing that? Can you ask for a liquid diet - does he still feel sick on nourishing drinks?

It's been a testing weekend again with Dad. He's being encouraged to eat but for some reason they're giving him solid food and he just can't manage it. He chews, feels sick and then has to spit it out. He was covered in food today, it was all around his chair/floor, and he is trying to hide it all in his bin. He was in a foul mood today, moaned the whole time I was there about what a terrible place it was (it really really isn't), and for the 1st hour, thought I was my DD. He can't use his phone anymore and has locked his banking app so now I've got no access to his finances at all (it's all happened too quick to get POA). He got in such a state that I've ended up going to his flat this afternoon and spent 2 hours looking for an old Nokia he'd got somewhere that he insisted on having. Respite stay my bloody arse, I've had no respite from this at all and am feeling very sorry for myself tonight.

@funnelfan good to hear.
@seanbeanmarryme welcome, plenty of room for all here. Sorry to hear about your dm, and your df. Feel free to ask questions, vent or anything.

Hello, hope there's room for another one in the cafe. The inevitable happened this week & my mum had a fall and ended up in hospital. She has Alzheimers and has got a lot worse since her fall. She has also had at least 2 falls since being in the hospital. Dad has reluctantly agreed that he can no longer cope at home so we will need to look at homes. It's so sad to see the decline in Mum and how it's breaking Dad's heart.

Thats great news @funnelfan.

Can I share positive things? DM is currently in an elder care assessment unit after we twisted her arm to come to a&e to get her “funny turns” checked out on Friday, on her GPs request. Ever since we stepped into the hospital, we have been met with nothing but care, consideration and kindness. The doctors are treating her as a human being, not just a set of symptoms, with the aim of finding the best long term solution to keep her safe. The doctor in a&e even went and made her a cup of tea himself while we were waiting for a bed. He’s comment when we thanked him for his care was “we’re (nhs) not that broken, we should be able to do this, it’s straightforward”.

@chesterelly1 I'm sorry that he's died but glad that there wasn't another round of discharge and admission for him to suffer.