🪳 Cockroach Cafe 🪳 Autumn 2023

Hi @TokyoSushi in our house we've been through similar with 3 parents over the last 2 years. It's exhausting so remember take care of yourself. Sadly things can take a while - wespent 7 weeks expecting "the call" with MIL this autumn so make sure you don't forget to plan some nice things even if they do need to be easily movable

Thank you @DrBlackbird a tiny bit, but it's very limited, we'll manage, it's just the waiting that's so miserable.

@TokyoSushi this time of year does add a layer of stress both emotional and practical. Hopefully you have some help from other family members.

Hello Tokyo, It's a tough time of year to be dealing with something that's tough at the best of times. I'm sure you'll get lots of sympathy, wise words and general niceness here. For what it's worth, you're not alone 💐

Pops head around door, hello, I wonder if you all might look after me for a little while? It seems like we're going to to have FIL on palliative care over Christmas...

Has been in hospital for weeks with general infection type symptoms and is currently a bit like one of those children's cars that you pull back, only for it to zoom forward again heading in one direction. All a bit of a nightmare, especially with the time of year...

@ThreeForMee - what a great idea. I think of 3 things quite a bit but not as kind lately to anyone - todays 3 random things is around ‘I do like Mondays Bob’
Good tv for mother
Work and interact with other humans not about catheters
Making pie, chips, peas on request for pie and yes chips from mother - turning out she wanted a Mr Kipling Apple pie - got to laugh!
Hope your other 2 today have been good - you don’t have to stop at 2 though, that’s a minimum!

Wellcome @ThreeForMee - lots of listeners and advice here. Do also look around for local charities and befriending for your DPs and yourself too, hopefully other help will come your way as well such as dementia nurse services etc. As and when needed.

@MsJinks I hope your day has remained a calmer one.

Welcome all newbies- I’m a board vet and fraud (dm passed away in may) still lurking and happy to offer advice/ permission to vent.

Welcome to all the newcomers to "the friendliest board on MN you wish you weren't on".
you don't have to be here ages to welcome other people, @SeriouslyAgain, it's not like other nastier corners of MN where you constantly have to be "proving your credentials"

a welcome haven indeed for honesty and support

Welcome @ThreeForMee , sorry you have to be here.

@ThreeForMee what a great name, that’s something we can all do with being reminded! Welcome.

Hello ThreeForMee!
I feel I'm too new on here to say 'welcome'! But I will say that just knowing that there's somewhere I can vent a bit has been half the battle this last fortnight!

Thanks MrsJinks. Sounds like you’ve really been through the mill the last few days.

im trying to be kind to myself but it doesn’t come naturally. That’s why I chose ‘3 for me’ as a name - I try to remind myself to do 3 little things just for myself when its a tough day. One of them was coming on here so that’s been a good decision 👍

@ThreeForMee - welcome to the most supportive place ever, definitely got me through yesterday.
I’m new here but have taken full advantage of everyone’s kindness already. You will be fine here, although it’s sad you have to be here.
Number one tip from me is to be kind to yourself - or maybe rant in here when resentment does build.
Hope today is ok.

Hi There

Is it OK if I sneak in and have a seat in the corner? Both parents are in their 80s - Mum with dementia and Dad physically failing but as determined as ever.

I’m their nearest child so I’m picking up the vast majority of the stuff that needs done while my further away/overseas siblings have gone one each for: ignore; just want to do the enjoyable things; be sporadically useful but really difficult to deal with (a LOT of history there rather than related to my mum & dad).

Anyway it’s all come to a head for me this week so could just do with a supportive environment more than anything else. I reckon I’m going to be in it for the long haul so just want to learn from those more experienced and not let the resentment grow too much.

3FMx

Thanks to all on here - you really helped save my sanity here yesterday. Today is a better day starting with a shower whilst ma stayed asleep but just feel better today in general so BIG thanks to all for the non judgmental support - so glad I found you - and hopefully I got enough whining out of my system to last a good while 🤔
I had forgot, but the palliative nurse also told me I ought to try e-harmony, where she met her partner, I mean I’ve had some pretty dire dates in my time, but not one staring at a relative on comfort care 🤦🏻‍♀️ - one for my laughter bank of care stories though!
Hope today is better than yesterday for all on here - we do an amazing job.

@MsJinks you are being and have been a dutiful daughter. And doing your best; and providing the care that your mum wants/needs/demands. We can’t however control how we feel. I’ve been very glad to find this non judgemental corner of MN (thanks@MereDintofPandiculation !).

@greenbeansnspinach - it probably is easier if you have a long and close bond - and no I don’t with my mum - though maybe that makes it easier to do practical stuff and face what’s happening, and not grieve losing a fabulous relationship as well - but then a bit conflicting as guess many feel bad about that. She had a great life with my dad, who adored her, but I wasn’t the right child for them really - not a good one at least 🤦🏻‍♀️
I don’t also have the more modern relationship as maybe being able to respond naturally on anything, and gave a laugh and know each other well - as I have with mine. We do have massively different lives and views, but she is keen her loved ones think the right way, same as her 🤦🏻‍♀️. Still all that is a bit late to address now, and that’s ok.
I do this for me really I guess, as I do think it’s right in my situation that I do - because she is old, ill, brought me up and wants this, my dad would, and there really is no reason why I can’t such as young kids, partner, work I have to attend daily - so I couldn’t sit easy if I didn’t do it as I’d feel pretty selfish. I do hate thinking awful thoughts on it though as I feel you should do things like this with grace, or not bother at all, but I’m doing neither of those 🤦🏻‍♀️
I cared at short notice for both parents 3 years back when my dad broke his shoulder - 3 weeks my ma , and 1 week my dad and mother - both bedbound over Xmas - I was on my knees tbh and it was bloody impossible to maintain - only one care call then for my mother as dad did it all- they both ended up back in hospital too so I obviously didn’t do it too well 🤦🏻‍♀️ anyway my dad passed away but my mum got through, but this very short time had clarified that I would not live with her, as she hoped after my dad had gone whilst she was in rehab care - it was a hard conversation. But I could and did help set up her coming home and do the life stuff though have ever since turned my head and ignored she may do better if I did live here - and so NHS got me again with their fine words 🤦🏻‍♀️ and I can’t duck out …

@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”.

@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 🍹🍹

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

@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.

@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.

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?