Cockroach cafe 🪳 Spring 2022 🪳

[MereDintofPandiculation]

Welcome! Those of you who have been before will notice the Bad Daughters’ Room is now called the Kumquat Room, and there are a couple of fine kumquats in the Conservatory.

Check also the Stationery cupboard with, among other things, the 🪳emoticon ready to cut and paste.

Anyway, 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.

How will she know of you visit if you don't tell her?

Can you give her a number to an old phone and use that to communicate with her?

You could check once a day or once every couple of days for texts etc?

There's still covid visiting rules here, when he was in he was allowed one visitor at a set time. I offered to go in myself but she claimed he didn't want people to see him falling sleep (which is nonsense because he falls asleep all the time and has done for the last couple of years, and also at one point we were getting messages when he did a poo so I don't think it's much to do with dignity either!).

The old phone idea is a good one. I suspect she would still phone my regular number if I didn't pick up though. Or my husband's mobile. But worth a shot.

Thank you. He wasn’t in the best state before the fall- he wasn’t happy at the care home and was wandering all night, his language had almost completely gone- there were words, in sentence form, but not the right words. I do feel that if this bleed doesn’t kill him, he’ll be going back to the home in a worse state again, and honestly, I don’t think any of us would want that.

Tell her its a new phone?

If she isn't visiting one day can't you book the slot?

Adult services have concluded parents are fine.. they have done referrals for day centre and care alarm. They feel dad may be better off paying for the day centre (so that'll be a no from him then) and dad doesn't feel he's being abused by DM (suspect as his hearing aids have packed up he's just not listening any more) So, we now we step back and watch DM decline mentally and DF decline physically whilst neither want to know the cause. Feels a bit like a race to the bottom.

Yes, sadly, that's exactly what you have to do :(

He's out of hospital again now (and back in, and out in between!) Anyway, if I tried to take the slot I don't think she'd be very happy. Very occasionally when he's been in for a short overnight stay she hasn't checked the visiting times but weirdly didn't let me know in time so at least one of us could go and see him. But as soon as he got moved to a ward that allowed two visitors in a hospital that's much more difficult for me to get to she was desperate to have me and other relatives go. It all seems to be more about supporting her rather than people spending time with DF, but she's just so stressful to deal with. 😰

Certainly sounds it :(

Ugh. Hospital communication is so frustrating! Half the time you can’t get through. When you do, they say they’ll ring back. Except they ring my mum, who doesn’t ask any of the right questions. They told her today that dad was ‘alert’ this afternoon. Turns out that means delirious but moving arms and legs. Which is not my definition of alert. Then, that he was going for another CT scan. Oh right, why’s that? They said yesterday it would be 10 days before they scanned again. No idea- she didn’t ask 🤦‍♀️

Eventually it transpired that this morning he was not ‘alert’, so had deteriorated, so they are scanning again. Quite what will happen then is anyone’s guess. My brother is going to the hospital so hopefully he will be able to give us some actual facts.

In the meantime, I rang the care home to ensure they were being kept informed, and they said oh yes, they’d spoken to the hospital more than once and were just waiting to find out what day this week he would be discharged. Had no idea he had a bleed on the brain. I could scream.

@OhPleaseJustLast - it must be so stressful for you.
My dad had dementia and had lost most of his words. He died in hospital after a fall and I took some comfort from the thought that he didn't really have much to look forward to. Anyway, I wish you strength, whatever happens.

@OhPleaseJustLast that sounds familiar. When dad was in hospital they sometimes phoned mum, who has alzheimer's, instead of DB who was meant to be the contact. So mum eould phone us and tell us they'd phoned bit not said anything or some garbled nonsense and then get annoyed when DB phoned as they only wanted to speak to one family member a day.

DB1 arranged for mum to start going to a lunch club . She's been telling everyone how nice it is except she hasn't been yet! Today I phoned at lunchtime to make sure she was out but she answered her phone. Too busy cleaning out her kitchen cupboards, last week it was mowing the lawn. Then she tells me she's fed up and lonely🤷‍♀️

Well, adult services have come up with 'brilliant idea' (apologies for sarcasm)! Why don't we ask my dad's GP to speak to him about the cancelled procedure and get it rescheduled... That was after I'd already told the social worker that GP had spoken to my dad and asked us to encourage him to attend the appointment... Sigh

I went with a friend to visit mum yesterday. Her blood results are clear and she fed herself the cake my friend gave her and the mini trifle I took as well which is a huge improvement.

She has no memory of my uncle's visit to her 24 hours before our visit but remembers a bizarre story from two months ago! My friend bought a musical instrument that she has wanted since her teens. She bought it from someone on the other side of the country with no links to anyone in our area. When I told mum about it her eyes lit up and she said that she overheard a couple of the nurses talking about it and one said "I nearly bought it but I was pipped to the post by Hairbrush's friend." The next day my uncle visited her and she told him about the instrument and that she had heard the nurses talking about it. So far so dementia/confusion/confabulation.

Then yesterday my friend said "I must show you a photo of my instrument" and mum told her word for word what she had said to me two months ago! The weird thing is that the instrument is not common at all so unlikely to have heard anyone talking about it and my friend's name is very rare as well so it's not as though she has heard people talking about someone with the same name. But she remembered exactly what she told us!

Sadly she is talking about my dad a lot now. I took a little doll to show her that I knew she would like and after she had held it and we had talked a bit about it she told me to put it in my bag and be sure to show dad when I got home. Dementia is so cruel.

OhPlease I’m sorry, it’s entirely understandable you wish him to go quickly and with as little distress as possible, I certainly would wish that. It’s a hard time.

Haribo you have to take care of your own health, you need to be able set the terms on how you deal with this and not be driven by DM’s decisions / demands. I agree with the burner phone and block her on your main phone scanario.

LightUp the stepping back is hard but necessary. I feel your frustration.

Have just been visiting DM. Although her being in a care home is a huge relief, there is a new set of issues which come with that. The dialling down of the intense stress of her not being safe and me living in fear of the phone ringing has been replaced by a more general concern about the day to day of how she will live out her life. There are few people who are in care homes at DM’s age with all their faculties and the energy to be social – there are a few at DM’s and she seems to only envy them - and DM has never been very good at being social. I take slow, incremental steps to getting things a bit better for her with each visit but the useful, nice, practical things I and others are able to put in place are in a race with her anxiety, depression and slowly but surely advancing cognitive impairment. I’m engaging some extra companionship for her but the best care is not going to make up for being very elderly, frail and confused. We managed to have a few trips out to favourite cafes and very local beauty spots, she can manage a couple of hours before she has had enough. I am relieved to find my ‘nappy bag’ plan was an over-reaction: she is continent but likes to wear a TenaLady ‘in case’. Her enjoyment of food and drink is diminished which is a shame but she still walks, with an aid. We’ll see how things go, I don’t know if meds to lift mood would be appropriate at any point – there are no real solutions, just temporary fixes.

Glad you had a decent visit with your DM Hairbrush. My DM is unexpectedly sharp on some things. It is cruel, I try not to compare her old self with the new.

@BinaryDot I feel so often I am choosing between the lesser of two evils. My mum likes her room in the home. She has her own duvet cover, the walls are covered with massive Moonpig cards with photos of the family on them and every surface has a framed photo even though she can't see well. They are familiar shapes from her home. We will never be able to take her out - the double incontinence has put paid to that even if we could get her in and out of the car. But I have more than half an hour blocks of time and the anxiety of entertaining her has gone.

What you're describing Hairbrush is actually a lot: your DM is safe and well looked-after and she is in an environment she likes, which you've worked hard to make comfortable and familiar. You've done and are doing what is possible. I am really pleased some of the Covid restrictions are eased and visits can be longer: your DM will be appreciating your visits.

I wish some of the sniffy care-home disapprovers (who have clearly not - yet - come up against the full realities of human physical frailty) could see some of the rooms I glimpse (not able to fully wander round the home as a visitor yet) which have been accessorised with everything the residents' children could find to comfort them: all the love and anxiety and hope is visible in those decorations.

Dad turns out to be the amazing invincible man and has staged a fairly amazing come back in the last 24 hours. Sadly my fears of what ‘recovery’ from the brain bleed would look like were somewhat founded, and he’s nowhere near what he was even last week. We’re not out of the woods, but there’s flashes of dad in there. If he recovers enough to go back to the home I doubt wandering around will be an issue any more though :(

Mum is, however, infuriating. I had a heated discussion yesterday with her because she wanted to give notice to the home. I suggested, probably not as diplomatically as I could have done, that she might wait more than 3 days. I felt somewhat vindicated when this morning he was eating and drinking and much more lucid!

Dementia is so cruel. Watching my Dad’s decline, I’m not sure whether it’s crueller to the relatives than to the sufferer. I’m not ready to test that theory out, though!

I guess what we don't know, Dint, is the level of awareness that they have of their failing mind. For years it didn't really bother DM, as losing her short term memory didn't seem to have much of an impact on her - it just seemed to make her angrier that 'nobody tells me anything'.

Now, I think she is pretty much adrift at sea with her mind, and is living in a bubble of her long term memory - talking about her DM, her faith in God, etc.

DB is able to just go along with these manifestations, whereas I think I found it much harder to accept than he did (but that may be because I saw much ore of her and did the majority of the care stuff, life admin, etc).

I bitterly hate the dementia, as I think it has robbed her of the chance of a dignified end.

I bitterly hate the dementia, as I think it has robbed her of the chance of a dignified end. But is dignity high in her list of priorities now?

My Dad, highly intelligent research scientist, strong work ethic, values himself as being the person other people come to to solve problems, said to a carer yesterday “I’m warm, I’m happy, I’m comfortable”. And I think he’s more at peace than he’s ever been. Im beginning to think that its my need for dignity, autonomy and intellectual stimulation that I’m projecting on to him, and these things no longer matter to him. I’m finding it hard to get my head round.

Hi all 🖐
I hope you've all had an uneventful Bank Holiday weekend.
I'm feeling quite low today.
Going to see mum later after my weekend "off" and the feeling of dread is creeping in. Which I feel guilty about. But it's SO lovely having my weekends back. ...Or it was...
Dh went to see pils yesterday. He came home rather later than expected. I asked him if he was OK and he burst into tears :( My mil is being investigated for parkinsons.
I feel quite odd about it.
Obviously, last night was about supporting dh and I will sort out an appointment for her as requested but...I've been very LC with her for a while now (which good reason..) and I'm feeling sad that I'm going to be sucked back in.
Dh and his brother and fil are pretty useless at medical stuff and just go into panic mode.
Sigh.
I knew she'd declined during covid but obviously hadn't seen her for some time.
I will need to put boundaries in place I think whilst trying to support dh.

@ChiswickFlo It’s rubbish visiting parents in a bad state of decline, we do it for them rather than for us. So natural not to look forward to it, no need to feel guilty. How I manage 1) try to accept Dad as he is not hark back to what he was. 2) Take some crochet to pass the time when I see him (he’s a very slow speaker, and not into hand massage etc). You could also sort out a little treat that you have only after you’ve seen your mum.

Yes, pay attention to boundaries. If it makes it easier, don’t feel guilty about using your mum as reason why you can’t get involved in PILs. Remember you can’t support DH if you’re in bits yourself

That's a really good idea @MereDintofPandiculation I feel a sense of anxiety/panic when I know I am going to visit mum. I'm usually too churned up to eat before I go so I make sure that there is something nice when I get home - a tv programme I want to see or some small treat. Just to give me something to focus on.

Not sure how but I have just discovered the Dementia/Alzheimer's section of Mumsnet. I realise that Dementia doesn't just affect the elderly and so it needs its own section but would it be helpful to have a link to it on here and vice versa?

I heard yesterday that mum's friend from the 60's who was in the room next to her passed away on Saturday. I am pretty sure that mum won't know when I see her this week but I feel sad that if she does know, if she is unhappy, I won't be able to comfort her.

Mum wasn't too bad today actually. Not dressed but she's not going anywhere so I didn't push it.
Declined an offer to come here for dinner later I'm relieved...bad daughter bench for me
Taking her food shopping tomorrow which is always fun 😬
I have a new novel to dive onto so that's my afternoon planned