🪳 Cockroach Cafe 🪳 Autumn 2023

[MereDintofPandiculation]

I’ve just done the autumn deepclean, brought in a load of logs, and made sure we have plenty of rugs and throws, and toasting forks and marshmallows. I’ve even brought in extra rugs from the Good Daughters’ room under the stairs - they’re not needed there, no-one ever uses it.

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.

Can you invent a totally different person who happens to have the same name? Train your brain out of the link that hears-the name and thinks DH?

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.

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 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.

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.

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?

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...

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.

@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 🤦🏻‍♀️

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

@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 🤣🤣

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!

@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 😁

@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?

@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 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...

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 💐

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).

Ask the hospice nurse about oxygen fittings that would allow you to have at least some breaks? There are different straps and things that might help.

Also - this is where I might shock you - how uncomfortable is she without oxygen on? Is there an option for her to stop having it?

@MsJinks I had a nice visit to Nan yesterday where we had a good conversation about my late Grandad but usually the TV is on so loud that I get transfixed by it! Tbh it's either Classic Emmerdale or the same conversation about iron tablets and bed sores....
She had a fall Friday night. Me and DH had both had a drink but luckily I was just pouring my second one so I could still drive. Luckily she wasn't hurt. We picked her up and sorted her out - cup of tea, hot water bottle night clothes on etc.. I never, ever drink at home but I just bought myself a bottle of Baileys that day for a treat. Typical. I was dreading the next morning but she was in unusually good spirits! Xmas still weighing heavily on my mind but we will deal with that when it comes.

@msjinks as we often say on here, this may be a marathon, not a sprint or 800m.
you will burn out or get ill without respite. You are entitled to- nay, deserve your own life. Please explore other ideas re male carers etc,- do the hospice offer support for carers/ counselling?
And please vent away here. We get it.

Thank you all 🙏- feeling better already for moaning - don’t do it to kids now as they then worry. Obviously can’t do it to hospice nurses either 🤦🏻‍♀️🤣 - I was told they were there for me as well as ma and that included emotional support, but I’ve found it’s more about answering questions re meds tbh - I feel they think I’m a bit of a whinger and to be fair there will be a lot in worse straits and it’s actually not me stuck in a bed needing palliative care so it’s fair enough - though disappointing.
You can live at home on oxygen fine - she has a compressor and back up cylinder - though hospital only discharged her to die there basically- not as she was better - she was on 15L in there but they put it to 4L just for comfort care when they withdrew treatment and fast tracked her home - but she won that round and her sats are good on 4L as of last week, but not less - but my favourite nurse this week wouldn’t check at all as ‘nail varnish’ which isn’t even on one finger since hospital removed it for that very reason 🤦🏻‍♀️
They’re all really pleased she’s doing well and obviously expect me to be happy just to hear that which is very conflicting
Her care company she has do try to send one male/one female to calls as they are well aware of her preferences- she had them prior to this as well as needed a level of care since my dad passed - but I think their day sitters are all female - I’ll ask around.
I’m quite tired of her taking oxygen off (but it’s better than her putting her hands down her pants to tug catheter I guess 🤦🏻‍♀️🤣) - I have taken oxygen out a short while, once after she told me 50 billionty times it stopped her breathing but she did ask for it back before I was going to insist on it again - she probably is fine a while without it and I remove it for a few minutes sometimes when she is hating on it (not to kill her honest!) but not sure how long is too long - the low oxygen damages organs I think if it’s prolonged- more of the concern really than likelihood it suffocates you without it at 4L - I’m learning so much info re care stuff and medical info and slide sheets and catheter bags - shame I have no plans to go into care after this 🤦🏻‍♀️ god bless the carers though
Thank you again all - helped so much on a bad day x

@Nodancingshoes - yes to the loud! She has hearing aids - went on and on till they were sorted and now doesn’t bother 🤦🏻‍♀️
Ive been carer as in manage house/apointmrnts/ visits/admin etc etc for nearly 3 years before this - so that ‘on call’ thing and it is a worry and hard on your mental load/wellbeing. I am so so fortunate that I managed to complete all nights out and not shame myself by having to taxi up in my finery that would have slipped 🤦🏻‍♀️🤣 - I didn’t have many nights with alcohol but someone up there obviously helped me out so must be ok 🤷🏼‍♀️ - had a couple of nights away as well courtesy of putting kids on call - and so happy we all got to go to my eldest wedding in Gozo in August - though I did get a call from care for having lost key and planning to get fire service out 😳😳😳 - so only one afternoon difficulty and early flight checked
I think you should now finish that baileys - and get a new one to say cheers to you - and all on here - for the stuff we do 🍹🍹

I don't expect it will happen in this financial climate, but you are entitled to a Social Services assessment as a carer.

There may be a local carer support group - the one where I am is quite good, though I haven't needed to use anything they're offering.

Remember that no nurse anywhere cares 24/7 for someone by themselves. Once they have done this themselves for a substantial length of time they may have permission to criticise you Until then, no!

@MsJinks you feel there are many in worse straits; maybe so … however when I read what you are doing - full time care, getting up at 5.30 am in the hope you’ll have a few minutes to yourself, going to bed when your mum decides you both will, standing by her bed since the morning till after lunch at least listening politely to your mum talking - I have caring responsibilities for two family members but I read your account and was horrified (sorry) to imagine your life at this time. Human beings cannot carry on like this - as others have unanimously said! You need respite, time to yourself and regular daily real substantial breaks. If your mum has funds of her own and particularly if you have power of attorney activated, I suggest using some to provide respite for you. After all if you break down, physically or mentally, what will happen to your mum? Will anyone else step into your heroic shoes?
I think for those of us who maybe haven’t received the best parenting ourselves, it’s harder to find the reserves of love to draw on to keep us going. I have a friend who cared for her mum in her own home till the end. She expressed no resentment or frustration with her situation. They had had a close, living relationship all her life (one I envy and would have loved to have had with my own mother). In the absence of these warm memories and bonds of affection, I am speaking only for myself and don’t want to assume anything about your situation…. I do struggle. We have to be realistic about what we can demand of ourselves.
please try to put things in place that will help you continue in your role - or as the woman from my own carers’ network emphasised to me “you have the right not to care”.