Cockroach Cafe 🪳Autumn 2022 🪳

[MereDintofPandiculation]

Welcome! I’ve taken advantage of the relative quietness recently to have a good “spring” clean. And also install solar panels and get in a good supply of logs for the stove.

Come in when you want to share good news, or to rant, or to ask a small question that doesn't warrant its own thread. Or just to hang out with others who understand what you're going through.

For newbies: why cockroach? Previous long term resident of "Elderly Parents" Yolo's DM attended a 'small animal event' in a nursing home, and was presented with a "small animal with a hard back" the name of which species she couldn't remember. Her ever helpful DB suggested cockroach, and it has become a toast on here. So 🪳 mes amis/amies, and may you all live to fight another day.

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.

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 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!

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

@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?

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.

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.

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 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".

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?

@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.

@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.

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.

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.

sean they will give you advice, I guess? But wouldn't it be your dad's decision finally?

funnel we haven't really had a conversation about my limits but this was just a bad luck thing. I have no problem dealing with food orders. It was a really bad week for me and I was at her house because I saw my friend who lives nearby. Mum wasn't askimg me to do anything. But yes, I am finding the post-stroke changes hard.

Re the looking after thing, we did have a strange thing with her GP. After one of her falls, she couldn't remember some details about it, and he asked me. So I said "I don't know, sorry, I wasn't around" and he exclaimed, crossly "but where WERE you"? I had to explain patiently that I don't live there and even if I did, I could have been out!

He apologised...he's quite fond of mum and perhaps just had a weird moment. I do find that being single and childfree gives weird expectations on what you do for the rest of your family.

@EmmaAgain22 historically in the U.K. it was very common for the youngest daughter of the family to never marry and to stay with the parents as their caregiver. I don’t think that misogynistic tradition ever really went away.

Tbh I don't think any of the expectations of children taking care of parents has gone,regardless of sex or any other factors.

I was just thinking how handy it would be if I didn't have to go at xmas but it would upset too many people.

And the old expectations aren't based on parents living this long, I think.

FIL used to give us the "we looked after our parents you should move in and care for us blah, blah" bit. But, his parents both died in their 60s, his dad died in an accident, MILs dad was ill for a few months in his early 70s but spent a good proportion of that in hospital having previously been in good health and MILs mum was in good health until she had a heart attack and was found dead. Their "caring" was having their parents round for Sunday lunch on a rota with siblings. And they all lived close together.
Compare that to our situation - we had 4 parents aged 84 to 94 all with significant care needs. My parents an hour away in 1 direction and DHs an hour away in the opposite direction.

Dad has taken a turn for the worse over the last 3 days. I think his liver is failing he's got very twitchy hands, and his confusion is horrendous.

Praying now that they still don't want to move him .........

Badger none of us know or can tell, but genuinely, I think the Hospice team would have made noises to outsource your DF before now. Their team will know many times over the difficult and stressed state illness causes. Hugs to you.

Seems unlikely.

is he sedated at all? I had to ask for dad to be sedated, the HCA had seen the twitchy hands and got a sense of his agitation (he wasn't really conscious) but for some reason, it took me asking for sedation to get it done.

To be clear, the HCA suggested sedation to his superiors and was ignored!

He is on Haloperidol 3 x times daily, as well as gabapentin for nerve pain and he has a morphine patch. It's absolutely horrific to watch, and it almost seems like he's hallucinating but then he seems to know that he's imagining things. I feel awful saying this but they've had lots of new arrivals in the last few days and no one came into Dad at all during the hour and a half I was there which worried me. The lack of contact and difficulty trying to talk to staff there is starting to get me down

Badger sorry to ask, but is he officially "end of life"?