Cockroach Café 🪳 🪳 🪳New Year 2025

[MereDintofPandiculation]

Welcome in to the Cockroach Café Bad Daughters’ Room, the rugs and cushions all fresh and clean for the new season.
Good daughters, find your way to the small room behind the stairs. Sorry it’s not as equipped as here, but it doesn’t get much use.
Come in when you want to share good news, or to rant, or just to hang out with others who understand what you're going through. The way MN works, hopefully this thread won’t appear in any featured lists, and the only people wandering in will be those who understand what it’s all about.
If you have a BIG question, it might be worth giving it its own thread, so as not to swamp this one.
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. My recent enquiries suggested more people wanted to keep the well known name than wanted to change it to something more savoury, so for the moment it stays.

That’s not good at all, the whole point of a buzzer is to get your attention so all sympathy to your mum. I wonder if previous room occupants were on the deaf side so it didn’t bother them? Room swap with someone who is unlikely to notice seems the obvious solution but I know once people are settled in their rooms they don’t like to move them. Fingers crossed it gets sorted quickly.

Thanks @MrsJRHartley. I had a long chat with mum today. She couldn't possibly say anything, I must not say anything, she hopes it won't be an issue again. She is also quite wound up by something a relative has asked her to make which she would now find difficult though a few years ago it would have been no problem. But again, she doesn't want to say anything, doesn't want to upset them, doesn't want me to say anything. A lifetime of saying yes (and then sometimes simmering with resentment) has left her unable to even countenance saying no.

I can't change that so have to accept it's out of my hands. I foresee problems ahead but will have to just support her however I can when they arise.

But in other news, MIL is delighted with her two sessions a week of Home Instead (different city) and referring to the carers as her new friends. And she fought us all the way on that one, so miracles do happen! Thanks everyone who has chipped in, it's appreciated. @EmotionalBlackmail @PermanentTemporary

Good news here - I took the day off to go to the home to help mum settle in. I spoke with the manager and he couldn’t have been more helpful, within 30 mins of speaking to him mum was moved to another room, further away from the call system. You can still hear it, but nowhere need as loudly. The staff all seem lovely, and have been really helpful settling her in. I’m back home now, and there is definitely a large glass of wine (or 2) on the agenda for later.

Great news @Randommother and has given me food for thought - might ask nursing home about the location of DFs room after being there today and hearing the call system going constantly right outside his room.

Hello 👋 Can I join you on here please. I have been lurking in the boards but the reality of looking after 2 parents with dementia is setting in.

DF due to be discharged from hospital this week, with carers at home. Both parents in denial about his condition and don’t understand why he needs a downstairs bed but he can barely move after over 2 months in hospital. Been doing battle with SS over reablement package which they are now funding but I’m expecting to have to take over v quickly.

DM going rapidly downhill with Alzheimer’s and will also need care v soon I expect.

@RememberDecember welcome, that sounds tough. Why do you expect to have to take over?
Is reablement 2 carers 4 times a day (the maximum) on return home?
Has your mum had an assessment of her needs or has all the focus been on your Dad?
Do they have assets?

Sorry for all the questions. 2024 (and now a bit in 2025) has involved fighting with SS and I am on my high horse right now.

So frustrating being caught between NHS discharging to community and SS not picking up the reins. Both saying ‘capacity’ as their reason for the frail to make unwise choices (that in reality the frail make because they have no insight into their needs and expect their children to pick up the reins, sacrificing their own lives/time with their own families).

@FiniteSagacity I recognise your comment about lack of insight impacting judgement capacity, there is either a lot of wishful thinking on the part of DP or simple lack of reality of their current needs.

Sorry, when I said I will need to take over, I meant the organising and funding of carers (from parents assets). Whilst they can afford, it will be substantial cost if continues at 4x2 carers daily, although hoping that will reduce.

I asked for a care assessment for both of them back in Nov but haven’t heard anything. Not sure it will be that helpful anyway since it will be privately funded so I suspect maybe best to just get the carers in and helping out DM with medication as well as DFs personal care.

@RememberDecember your DPs going into a shared room is an option if things go in the direction of 24 hour care. Use the reablement time to understand where they could go - 18 months ago I knew nothing about the care system, DF is relatively young but his struggling turned into a rollercoaster. MN has been a brilliant resource to learn from because no one in the system tells you everything you need to know.

I sounds like a care assessment for your Dad was done in hospital - ask for a copy, it is helpful when talking to care agencies.

Knowing what I do now, I would push for your mum to have a care assessment as well before they scale back the care.

@RememberDecember If the hospital are discharging home have they completed an assessment of needs at least for your DF based on the diary of care completed by hospital staff? Then at least you can make sure that level is in place so you know your DF is ok. Does he need two people to help stand/mobilise at the moment then?

Then once you get him sorted get back onto SS about an assessment for your DM.

My DF just came out of hospital and the reablement team only really were prepared to be involved for 2 weeks maximum because they are so busy and as soon as they realised his care needs were higher and he wasn't going to be independent as the hospital tried to claim he was pre-admission (he wasn't pre hospital really, he wasn't coping, self-neglecting, refusing help) they quickly said we are stopping sort out something else quickly. He gets 3 calls, 1 person helping at the moment, but I suspect over time he might manage with less as he gets stronger, for personal care and medication mainly. He didn't have a social care assessment at home, I have just gone off what the discharge team discussed with me and will adjust accordingly. I need to contact the OT too about home aids, but GP can refer and the agency also said they can help with contacting services. I have self-referred him to the continence service for pads.

I am sure so long as you pay the care agency for enough time on the call they would administer meds for your Mum too so long as they are in their original boxes/blister packs and they have a MAR chart (their pharmacy can help with this). Make sure the hospital give you one for your DF when they discharge, they forgot my DF's one and I had to run around getting one from the hospital ward because the e-discharge hadn't yet gone to the GP so the pharmacy couldn't provide one yet.

And yes the capacity issue @FiniteSagacity they may be able to remember something and say yes or know, but can they actually understand the steps it takes to manage the situation on their own if they say know and do they understand what will happen to them if they can't.

I had that whole problem with DAunt who refused all help, social care and GP kept saying she had capacity, but she had no idea how food was going to get into her house and when asked she would just say 'I am sure it will be ok/something will work out.'. Well no because food doesn't materialise out of thin air even if you wish it to. Eventually the inevitable crisis happened, she fell due to frailty from lack of nutrition and fluids, went into hospital and never came back out.

Yes, the capacity thing. My visit to mum in her new care home went better than expected yesterday. I can tell she wants to go home and thought that I was there to take her. But like @Choconuttolata’s Aunt, any question about “how would you manage…” gets literally handwaved away with a “something will work out”.

The manager at the home is great, a lot of their experience is in end of life care. After a bit of chat they obviously decided they could be blunt with me and said that they were very concerned about how frail and vulnerable she is, and their reading of mum is that she won’t see out the year. I’m not upset, and in some ways I feel validated that I’ve not been over reacting by not accepting her going back home with 4x a day career visits. They want to work with me to ensure that mum gets the best quality of life she can have while she’s with them. They’ve already worked out she doesn’t like group activities but quite likes their conservatory as it’s quieter and she can look at the garden. They’re also concerned that a lot of her symptoms point to depression and they’re going to raise that with their GP to see if she would benefit from medication. Oh, and I tasted a bit of her dinner while I was there and the food is great!

I've been having the capacity argument a lot recently. GP assessed mum as having capacity on the Friday and told me I need tp accept mum's decisions then on Monday I got a call from the surgery saying mum hadn't turned up for yet another dressing changeappointment and I need to make sure she gets there. Mum is mobile and had several notes and phone calls to remind her. None of us are local nearest sibling and I still work. You can probably guess my response.

So frustrating countrygirl. Quite clearly they need to go to her. If ony we still had a District Nursing service worth the name.

They tried the District Nurses even though they are meant to be for housebound people and mum is so far from being housebound she was out 2 of the 2 times they tried and the 3rd time she was annoyed they delayed her going out so they won't go again. She just doesn't can't be bothered. She'd turn up if they were providing lunch or running a coffee morning.

How frustrating @countrygirl99 but if they say she has capacity then they need to accept that she doesn't want to come to appointments and they shouldn't be hassling you to bring her.

@Choconuttolata almost word for word my response🤣

I think I qualify as a bad daughter so can I join?

DM is dying and I am not with her. She is in a nursing home and on a syringe driver, mouth care etc but I am not with her because I don't want to disrupt the bedtime routine of my 9 year old with additional needs. She doesn't recognise me anymore and the nurse told me earlier that she was in a deep sleep most of the time so I don't think it would make a difference to her if I was there. We have had a tricky relationship at times so why do I feel guilty? She isn't one for making a fuss so would probably prefer to just slip away in peace without someone staring at her anyway. If I was there I might be crying or showing some other emotion which definitely isn't the sort of thing she agreed with (sorry that is a very rambling justification for being me at home).

Anyway once she is gone I will be left dealing with DF who has deteriorated so much since DM went into the home last year. He is practically housebound and after a fall and hospital stay in November we have been through the whirl of assorted assessemnts, arranging physio, adaptations, help at home etc. At least he has nearly full mental capacity and can deal with some things himself and is willing to accept outside help

Whereas MIL is physically great for 80 but has moderate cognitive decline and will be absolutely against accepting outside help so we face a different set of challenges there. They both drive me round the bend but in different ways.

Just to top it off my best friend is in hospital at the moment but has no family support so is relying on another friend for help. I have said I cannot do anything as I have no time and no mental capacity. The other friend is now on the verge of a mental breakdown so she may well be left completely alone when she desperately needs someone to advocate for her. So not only am I a bad daughter but a bad friend too!

If you made it this far please know that I feel better just for getting it off my chest!

I think when you have to go on coping with the very complex situation of a child with additional needs and a DF who will be bereaved and needing you more than ever it is absolutely ok to prioritise your child and yourself.

When DAunt was passing I went to say goodbye, but she also was not one for a fuss and always wanted to be on her own so at some point I went to the B&B to sleep because I have a long term condition that causes fatigue, three kids, two with additional needs, plus work and DF who is housebound and needing more support so I needed my strength for myself to support the living who still need me. There is nothing wrong with that, it doesn't make you a bad daughter, it makes you a good mother and daughter to your father and saves you from burn out.

Re: your best friend, you cannot be there for everyone, you have a lot on your plate and your first responsibility is to your child who needs you to be there for them. I know it is hard, but if you don't have the band width you don't have it.

@TobiasForgesContactLense sending strength. You are doing so much and pulled in so many directions as many of us can relate to. If you stretch yourself to breaking point then you can’t help anyone. I hope you are able to rest, know you must put your own oxygen mask on first, then you are prioritising your child, which is how it must be.

Thank you for your kind messages. I am usually very good at putting on my own oxygen mask and reminding myself that DS is my priority but had a wobble last night. DH has taken over parenting for today and will be fine - it's the nights that are trickier.

I am with DM now and they have just given her hyoscine to manage her secretions as her breathing is quite rattly now. Will need to leave her for a bit to go and sort out DF - he is really struggling with seeing her how she is now.

I'm finding life has a way of chucking several extra buckets of crap at you, just as you're in the middle of cleaning up the original crap mountain. There's only so much you can do, and so many people wanting to complain that there's still shit needing to be dealt with.
That said, it looks as if we're on our way out of Cockroach Cafe. The hospice have called us to come and see FIL, and pack a bag unless we need to stay overnight. He won't be rallying or lingering.

@TobiasForgesContactLense Sorry. Sounds like she is on the good stuff and will be away with the fairies.
Over the years I have come to evaluate how much something matters by 2 criteria:

1. how shit it is now
2. how much the results will affect people over the years to come. Even if she has some discomfort (hopefully none), if she miraculously recovered, she wouldn't really remember it.

However, your memories (and your family's) of this time may last for decades.
So do what you can best live with for the next 10-20-30 years. That's my pennyworth, which you're free to use or discard as you see fit !

My DM died 2 hours after my previous post so at at peace now. Just the hard work of looking after DF now.

@ArabellaFishwife I hope that your FIL doesn't linger any longer than is necessary for his loved ones to say goodbye.

@TobiasForgesContactLense He didn't, as it turned out, and we were thankful for that. We were there in time to say goodbye.
Condolences to you.