Cockroach Cafe 🪳Autumn 2022 🪳

[MereDintofPandiculation]

Welcome! I’ve taken advantage of the relative quietness recently to have a good “spring” clean. And also install solar panels and get in a good supply of logs for the stove.

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.

@funnelfan so sorry to read this… would it be worth contacting the assessment unit who discharged her? I recall something about hospitals being measured on readmittance after discharge…. To say this is effectively an unsafe discharge? Not sure what the time element is- days/ week.
We also understand the pressure here… 🌺🌺

@funnelfan if possible I'd check the information the discharge team were using. I was being told by the hospital discharge team that my Mum was mobile and able to go to the toilet on her own, but the ward staff confirmed she needed help to stand from a chair and 2 staff to get her to the toilet. The staff on the ward were brilliant but it was clear that the discharge team wanted her out ASAP even if it meant sending her to somewhere unsuitable for her needs.

@funnelfan changing from one environment from another often means a rapid downhill decline (my Dad did it last week when moving from the hospice into the care home). He's been so much more settled this weekend, and has almost been Dad again in patches. And with dementia, it's even more unsettling I'd imagine.

I'm realising that caring for your elderly parents is just literally lurching from one bloody crisis to the next, and never let your guard down thinking it's OK........

Badger "I'm realising that caring for your elderly parents is just literally lurching from one bloody crisis to the next, and never let your guard down thinking it's OK........"

Yes. It's easier to expect and be prepared for crises.

To add
in terms of being prepared, I realise you can't be prepared for everything but I now know not to go to my folks house without certain items, as I can't just pop home and pick stuff up.

I know mum will always run out of cash because she refuses to keep much in the house so I always have some when I visit. I always have food in her freezer and cupboards for me in case I get stuck there - she eats like a bird and there's often barely a crumb in the house.

Etc. Basically all the boring stuff needs to be in place, I find.

over the years I have cancelled three sets of theatre tickets for parental emergency ...if I go (which is rare now) it's either last minute or I check my sister is contactable.

Thanks all, you are very kind. We've not had to deal with dementia before in our family - we've had olds get delirious with UTIs, that's it. Just trying to get my head around it. Consultant said apart from vascular changes, her other test results were all "unexciting" with heart, lungs, kidneys, liver, blood results including sugar etc all bang on what you'd expect for a woman of her age. So she's healthy in body - does it sound horrible to say that's not good with a dementia diagnosis? DB and I were discussing quality vs length of life this afternoon. I'm lucky that he is involved and supportive and we are aligned.

@PermanentTemporary Speaking to the Gp tomorrow seems best but rather than focusing on the LBD as the headline I'd focus on the fact that she has already deteriorated past what the care package put in place allowed for and that you're filling the gap but will have to leave soon.
Bingo, thanks, that's a good point and I will lead with the carer's concerns.

Does it seem as if a nursing home might work better now?
Yes, and DB and I have this as our aim. There are two within a couple of miles of my house that are care/nursing/dementia so would be ideal from a location perspective, rather than the 100 miles distance I have at the moment. DB would have the same distance to drive as he does now. I'd rather get her settled before her cognitive deterioration gets really bad. Just one person to convince, and that's mum. Having GP and other professionals on board will make convincing her easier.

Tbh if she was better in hospital why not let the carer make the call? Because mum hated it there - I did ring 111 instead to get advice (sorry to drip feed but my post was getting long) so did acknowledge their concerns, and having spoken to the senior carer in charge, she understands my point and I theirs. They are great.

@thesandwich @seanbeanmarryme at discharge she was indeed bright and chatty and walking with a stick - I walked her out myself and took her home in my car. They got her back to the best she's capable of, and then assessed her needs on that. What we were all missing was the impact of her underlying diagnosis.

@Badger1970 I'm glad to hear your dad has been more settled for a couple of days. I had a heartbreaking conversation with mum this afternoon when she "came back" for a while, and I asked her how she was, and she said she was frightened, and when I held her hand and asked her what she was frightened about, she said dying, and she thought that was what was happening to her (with all the carers and out of hours doc visits). Ironically that did open up the topic for me to say I didn't think she was dying just yet, but that the doctors seemed to think she had a form of dementia, which she was quite calm about. For a while she's been saying things like "I can't do the telly remote again because of my dementia", as a shorthand for cognitive issues. It actually calmed her down to be validated I think, and I talked again about the residential care homes near me, and how nice it would be to be able to pop in and see her every day. I'll keep plugging away.

@EmmaEmerald yes, I have a "mum bag" that I keep in the car for things I need for every visit, and if I need them at home I get them out of the car then put them back in the boot. I've got a shopping list in google docs that I use every time I go grocery shopping to prompt me to check her cupboards for the items that are important to her - and DB and I also keep food in her freezer for us (mostly frozen pizzas, difficult trying to eat healthily in this situation isn't it? I also keep a bottle of multivitamins here too because of that).

What a rotten situation for you both to be in! She’s feeling out of control because things she would have done for herself she’s now reliant on other people for, and you’re not in a position to do them, but you feel guilty about that (otherwise your mum’s words would not have upset you).

Are you convinced in your own mind that A&D is a real illness? If you’d had tge same call while suffering from flu, or laid up with a bad sprained ankle, would you have had the same reaction? Or would you just have been cross?

Mere yes, I am convinced it's a real illness. I think it gets abused now but I have been in treatment for decades. Therefore I can't answer the flu/sprained ankle question because I just don't know.

I am having a particularly low spell atm which doesn't help.

thanks for replying, I know it's very trivial given what others are dealing with.

thanks for replying, I know it's very trivial given what others are dealing with. No, it’s not trivial. Other people aren’t trying to look after an elderly person on top of existing MH issues. Don’t undervalue what you are doing

I'd consider myself a really strong person usually, but my MH is shot to pieces at the moment. I'm eating badly and have put over a stone in which isn't helping me either, not sleeping, have a permanent knot of anxiety in my chest and feel really run down. I've started a weekly counselling session via the hospice as they recommended it and it's helped me no end to understand that what I'm feeling is perfectly normal and OK for me to be feeling. I cried non stop for 50 minutes, but she actually gave me a huge smile as I left and said she worries far more about the ones who can't cry...!! I feel as if crying is all I do, I'm surprised I'm not attached to a drip to counteract the tears.

Offering a hug/nod/fist-bump of your choosing in solidarity for everyone managing their mental health as well as their elderlies.

I spoke to my mum's GP this morning - I hadn't grasped just how much a difference it makes to talk to a doctor that actually knows mum, has done for a while and thus knew her when she was well. And the first question she asked me was how I was doing. I could have turned into a bubbly snot monster right there just for having the question asked! Anyway, she's doing a home visit to mum later this week, and I think she's going to be a great ally/resource. Fingers crossed I get to go home this evening for a couple of days.

Mere thank you for saying that. I'm so used to just chugging alomg.

funnel yes, always good when a doctor who knows the patient can help out.

Badger glad you found the counsellor helpful.

again, crosses over to other territory...mum is already asking about my birthday. I know it's because she's trying to picture a little spring outing in the winter gloom.

so I pondered...and I remember my 40th in Las Vegas....and I think....what happened to my life?! And I just want to cry.

it's not all due to elderly parents of course. (I didn't feel anything like my age before lockdown).

Oh @EmmaEmerald sending a hug.

thesandwich thank you.

I think we're all frazzled to buggery. But don't discount your existing struggles, @EmmaEmerald . You matter too. I think sometimes, in the quest for the ideal outcome, we forget that, or think we're selfish if we remember.

Nightmare day yesterday, Dad was sick and it turns out that he's not being getting a medication to treat nausea even though it was prescribed last week. I went in late afternoon to find him slumped out of his chair almost on the floor as he'd been given an injection that knocked him out ... and the care staff took ages to reply to his callbell. I've had a rather irate phone call with the manager this morning as a result. She was horrified that he'd been left in a chair after being dosed with it, and is getting the nurse to arrange an urgent medication review with the GP but they warned me it could take a few days. As if losing your Dad to cancer isn't hard enough, fighting to get him adequately looked after shouldn't be on my effing radar.

I'm bone tired of this. Christ knows how my Dad is feeling

Badger that is dreadful. I am so sorry.

Probably far less than what you are all dealing with... Bizarre phone calls from mum where she claims dad is 'going downhill' then refuses to call the Dr or speak to 111. Because he's profoundly deaf he doesn't speak on the phone at all. Spoke to his GP . Their triage is full, speak to 111... He CANT HEAR THEM and if mum has to answer questions about him it provokes a huge rage.. their triage is full.... Nobody seems to be listening to us at all.

Light I can't remember if you live nearby or not

can your mum describe to you what the "going downhill" is?

@Lightuptheroom when we were having trouble getting a face to face appointment for my dad who was deaf, partially sighted and frail I found an email with concerns bullet pointed got a better response than phone calls.

No, only that she doesnt want to deal with it, and somehow expects the Dr to magically know that they need an appointment as 'she can't be dealing with all that.
Further conversation gets the response that he's allowing 'it' to take over and he should be grateful to have reached 85!!!! (He has a lot of physical disabilities and lung disease)
We've managed to speak to district nurses who have said they need GP input so maybe that will get things moving

@countrygirl99 thanks. We've tried that , the surgery just ignore it.
We've done an e consult so they will have to respond.
Not local @EmmaAgain22 but my number is the only one my mum will actually ring ... Everyone else should know automatically that she wants to speak to them.
Unfortunately dad's standard response to do you want to see the Dr is 'not at the moment ' then we end up with emergency situations instead

And in true left hand has no clue what the right hand is doing ... The e consult form tells you to contact the surgery... Where they don't answer the phone...

Light fingers crossed the district nurses can help.