🪳 Cockroach Cafe 🪳 Autumn 2023

I understand what you’re saying @MsJinks and everyone in real life will think you’re doing the right thing. I sort of think you’re doing the right thing. But you can’t live like that for long - I know you said it was expected to be days but there are many on this board who have gone through multiple rallies. You need a Plan B otherwise you’re going to burn out.
Frankly I’m horrified that if she needs oxygen to stay alive that she’s not still in hospital tbh but maybe I’m still inexperienced in how keen they are to discharge. You’re effectively being a full time nurse. (Noted what you said about carers but they don’t have the constant stress of it being a close relative).

God almighty @MsJinks what on earth? I know what you mean about people who check to see if you're reading while you're with them, frankly I left a husband for that sort of nonsense! I'm not impressed with your hospice nurse who should be down on their knees thanking you for the care you are giving and asking you what they can do to help you get your life back, not giving you shocked faces at the idea you might like to go back to work!

As for respite, down here a lot of the carers are male, why not ask an agency if she could have male carers? They might bite your hand off as obviously a lot of ladies prefer women for care.

If you need our permission to say 'right mum, off to rest and read for a couple of hours, ill put the telly on for you' then you have it 💐

MsJinks You are doing an absolutely amazing job - above and beyond the call of duty.
Please try to look after yourself though and get a bit more time to yourself. It can't be just about her: you have needs too. In the meantime, definitely keep venting...

@MotherOfCatBoy - no doesn’t seem there are those options. I came to do this care as I was told hours to days in the hospital - and knew she’d want to be at home so did everything possible to make it happen and binned work, appointments etc off for that short time.
Sounds so crass that I’m sort of moaning now she’s pulled through I know. But she’s now bedbound on oxygen and a catheter and can’t do anything like get lights right, her position right, also her oxygen falls out so she needs more or less full supervision to maintain her - she also heavily relies on me and was very anxious the other evening when I left my youngest (30) with her whilst I fetched her meds and shopping - 90 minutes and she thought I’d left her - though she’s not fond of my youngest as she knows she struggled at school and with behaviour- that irritates me tbh as she cares so much for me and her Nan and wants to help but it is how it is.
But there are 4x day carers to do her physical care - she’d prefer me to do it but obviously that is impossible anyway - and one of my daughters (that she likes) comes one day/week between school hours - they do help but have kids/work and live over an hour away plus obviously my mum isn’t struck on me going anywhere- as why would I want to 🤦🏻‍♀️ I’ve spent Xmas with her last 3 of course, since losing my dad - and she honestly never recognised I might like to see my own kids/grandkids at all as I always previously had.
Im just struggling today as I keep thinking of doing it long term - I feel very selfish - I also feel very sad that she thinks I am very happy here with her but I’m actually moaning about it - that’s awful as she deserves someone to be happy she’s doing well - does that even make sense?!
I am going to look into private sits after Xmas, but I know she won’t want them as she dislikes females altogether- always has - but I think it will be worth it.

@MsJinks Do you have any options for days like today where you could take a break and spend time with your own family? A few days, maybe? I hate to say this but what you describe sounds unsustainable long term and unfortunately no one knows timescales in situations like these. Might you be able to make some plans in case in a few weeks or months things change and you want more time to yourself?

@EmotionalBlackmail - I think I’m having a bad day as Sunday tv isn’t to her liking so it’s just listening to her instead. Also I generally get up earlier than her to have a shower and lovely peace but failed today - 5:30am 🤦🏻‍♀️
We go to bed at her choice, watch only her tv choice and talk about her 99.9% and her opinions on things the rest - to be fair this is how she’s been treated her entire adult life by my dad, so 67 years till he passed - so why would she change now. It is a bad day and I can’t chill and do it day by day - other nurse told me to find the ‘joy’ in her good days - it’s not happening today 🤦🏻‍♀️ I feel bad moaning though.
Id feel worse if I didn’t do it - just today those months/years stretch out to eternity 🤦🏻‍♀️
Thank you for being kind and this space to vent - yay another life win today 😁

Crikey @MsJinks I couldn't do what you're doing, you must have the patience of a saint!

Mine (bearing in mind I can only tolerate her in small doses) has activities that are acceptable in a daughter - looking after her, cooking her meals, some crafts. And activities that are not at all acceptable - looking after her grandchildren, spending time with DH, going to work, looking at phone. So if I have to spend anytime with her I either hide in the kitchen or sit with her and do some crochet/sewing. I usually have to undo it again as she makes me so cross my tension gets tighter and tighter!

When I speak to her on the phone I put my headset on so I can get on with something else whilst she rambles on. And play Bingo with what she's going to say next. I'm usually right

I can't believe the nurse said that to you (well, I can believe it but aarrgghh) respite care whilst you work or go to hospital is entirely reasonable! TBH respite care for anyone is entirely reasonable!

@IthinkIsawahairbrushbackthere - ah we all have good/bad - I keep trying to view it as not ‘putting my life on hold’ as it will actually not stop unfortunately but ‘this is my life and enjoy it’ - not working much tbf 🤦🏻‍♀️🤣
I feel awful moaning about her and other day hospice nurse who visits looked horrified I asked if there were any respite sits so I could get to hospital or even work - she said I cannot have 24/7 for my mum (I didn’t ask) and she’s doing well so - felt like she feels I want to bin her. My kids get worried about me if I moan as well - so decided to stop all these wants/moans in real life - but here is fantastic! I do try to pretend to be a nice person in day to day life 🤣🤣

@MsJinks no other advice but tons of sympathy. I thought I had it tough but you've got it worse.

@IthinkIsawahairbrushbackthere - no, that wouldn’t work, the grandkids aren’t central to her life as she wasn’t keen on having them when I had my kids, and rarely ever saw them , but had a great and busy life with my dad, which was good. she’s proud of them now as adults, if they’re slim or successful 👀 and likes them coming to see her, and actually also likes the great grandchildren to visit (and be quiet - she was a teacher 🤣) but she has no concept of being interested in what they want or need - or of me wanting to have time with them either or discuss them - they’re very irrelevant to her otherwise, and in turn irrelevant to me as she is my priority- - which I’m trying to accept with grace too. Any tips?! Maybe it’s a bad day as tv isn’t good so I’ve stood by her bed chatting, listening at least, to her and since 5:30am she hasn’t really spoken of anything except how I can organise a hoist to get her into a chair and give me instructions on trying to move her in bed, shut doors etc 🤦🏻‍♀️ - it’s the length of time doing this that worries me that my game face will fail 🤦🏻‍♀️

Thank you @MereDintofPandiculation That's something I can work on. It's hard when she makes it quite clear she is talking about my DF and not DH or my uncle.

@MsJinks I used to tell DM that one of the kids was asking me about Christmas/Birthday/how to cook whatever and she would accept that because they were central to her life even though they had all moved away.

A tiny vent on behalf of my saintly OH.
Not an elderly parent but a friend (younger, sadly) with serious medical problems.
He spent yesterday afternoon with friend at A&E to be checked out for stroke & infection (because all of a sudden they can't see from one eye) ignoring a lot of grumbling and "I want to go home". Hospital say, "go to eye hospital tomorrow morning". Friend refuses. OH turns up this morning hoping that if he's on her doorstep saying, "I am here to take you to the eye hospital " she will come, but no dice. And there's different specialists to see tomorrow . He's hoping maybe they can persuade her...

I get she is fed up of being poked and prodded and with often not much in the way of results, but as he said, If you can't see out of one eye, isn't it a good idea to find out why before you can't see out of the other?!

My oldies could be a lot worse - productive phone call yesterday - they are having a key safe put in and going to trial Wiltshire Farm Foods. And I suggested they apply for AA for the one who isn't already in DLA. I said I would like to pop round and at least drop off cake and give them a hug but just left the idea with them. I do understand not wanting people to see you when you're very frail, but I don't agree cutting yourself off from everyone is that good an idea...

Got to ask - how do you listen to them all day long and every day - believing that their talk about themselves is just endlessly fascinating and interesting on repeat 🤦🏻‍♀️. How do you pay proper and full attention to them all day?
I try to take some humour from this and time her to myself till she asks anything about anyone not herself. I am also fortunate that how she has her bed she can’t see me looking at my phone/reading whilst she watches TV.. However she is hoping to get back to a chair soon and then I will be sitting next to her and she can see if I’m not paying attention to her - this was not an issue when I just visited but now I live here I’m absolutely dreading it - and that’s just awful as she so wants to be back in a chair. If you ever looked away from her when in a chair she’d mention it and even when watching tv she would keep checking you’re not on a phone/reading etc. She genuinely believes her choice of tv must be mine, my interest is her, I have nothing and no one to think about except her. Gawd I sound heartless - I want to be ok with this and happy for her progress but just looking for advice on how others handle it please?

I think my mum just lost interest in reading because the sustained concentration needed was beyond her. She kept reading old favourites for a while.

Mum has also stopped reading in the last year. I’m not sure if it is that she’s getting confused about how to use the kindle. I might buy her a physical book for Christmas.

My mum was a reader too, always a book on the go. She stopped when her macular degeneration affected her eyesight, but looking back I wonder if her cognitive decline was also kicking in around the same time as she’d often hand me letters to sort out saying she could make out the words but didn’t understand what they were saying. Just the usual bills and stuff, nothing out of the ordinary.

Mum used to be an avid reader but she hardly does now. She complains nothing she reads makes any sense. I suspect that she can't remember what has already happened in the story so it's like continually turning up half way through a conversation with no background knowledge.

@BestIsWest good to hear that, BiL currently working as a undertaker, trained in his 20s, kindness is such a big part of the job.

DH visit to his DM was not great, at first she thought he was his DB, then said he had stolen her money, not visited for a year etc. Says she needs a phone, wants to go home, thinks no one visits (she has a visit every week) etc. No two way conversation. BUT DH thinks she can get better and that she knows she isn’t making sense. I Try to explain dementia is often like that.

MiL knows it is nearly Christmas, likely because all staff are talking about it, and is asking why she isn’t coming to us as usual. DH thinks he should visit more often over Christmas and that it will improve things . I find it difficult to put into words to DH that I think his expectations might be a little high -he told a friend his DM will live to 100?

We agreed he needs to speak to the GP especially since she told DH she has skin cancer (again).

A friend had this with her mum. She spent 3 years saying he'd gone to visit hos brother for a few days until she stopped asking. Fortunately she remembered she hated his brother so the response was always "thank goodness he didn't insist on me going too".

When my DF died in hospital I rang my uncle and he contacted the undertaker who was a friend of his. The undertaker was lovely and talked us through everything.

I visited DM yesterday. I have realised I have come to terms with her not knowing me most of the time, not caring about my DC who were the be all and end all of her life but I can't cope with her asking about DF. Eleven years since he died and as soon as she saw us she wanted to know if he was ok? What was he doing? Where was he?

@SeriouslyAgain 🤞. Enjoy the alcohol😁

DH going to visit his DM on his own at nursing home, first time without me! He has been warned she is in a shouting out mode. I have written Xmas cards for her, sent a new blouse for her, a card from my parents and her regular letter from a dear friend of hers that we have to read to her as she can’t cope with reading. (Curious about what causes this). I hope she can acknowledge one or two of these things.

I’ve probably mentioned this before but DF had a funeral insurance policy which specified a particular local undertaker - and he had told me this.

In the stress of the moment, dealing with his sudden death, the doctors, paramedics, police, DM and DB - and it was during the pandemic - I totally forgot this and the undertaker I called that morning (after googling) was not the one specified in the policy.

It was only the next day, looking for his birth certificate that I found the insurance policy and then had to call and see if it could be transferred to the right undertaker. Thankfully they were all so understanding and sorted it for me but it was something I could have done without.