Cockroach cafe 🪳 Summer 2023 🪳

@IthinkIsawahairbrushbackthere what a nightmare. Hope you get a suitable resolution soon.

Oh hairbrush!!

Could the home put her into a ground floor room temporarily?

Of course you haven't got time but I really hope you can send an extremely crisp email to her GP asking them to reconsider whether her best interests in the future ever involve hospital admission. It's their fault avoiding a decision that has landed her in this situation. And I don't diss GPs lightly.

I am going to wait until Monday when I will have calmed down a bit. I need to establish whether there were any issues getting her up the stairs last time - did she panic and make it dangerous? Have they any idea when the lift will be fixed? And any other questions that might occur to me while I stew about it! I also want to ask the hospital what the plan is moving forwards - will she stay put for the next 6/8 weeks? She is paying care home fees (together with the local authority). Will she be expected to carry on when she isn't using the service? Should I look for a new placement for her? I really hope not because the staff at the home are so lovely.

Also I heard last night that one of her favourite cousins (she has A LOT of cousins but this one she was close to) may be moving to her care home and it would mean so much to her to be with her cousin.

So deep breath! Try to calm down and prepare a list of questions for the home, for the hospital and PALS.

Oh @IthinkIsawahairbrushbackthere that sounds really awful. Would PALS be any use? Keep fighting. Local bbc?

DM is still stuck in hospital. Covid is rife there, she is testing negative but she has a chest infection. The nurse checked her notes and confirmed what the Home understood - she can not be released until the lift has been repaired because of Health and Safety yet three weeks ago it was not an issue at all. Now she is stuck in the frailty ward (I say "ward" - it's more like an underground bunker with no natural light and two patients in a bay designed for one. She knows no one by name and so many of the staff are doing odd shifts on the ward because they are so stretched and there's no chance she will get to know anybody. The lift may take another two months to repair - who knows?

I have contacted a local hospice charity (I am already in touch with them to prepare an end of life plan) to ask if they can assist with transport. I have written to our Welsh government MP and the Welsh Minister for Health.

I am considering contacting the Daily Mail - I am that desperate to get her home!

@Myneedycat dementia can last many, many years you can't put your life on hold for potentially 15+ years. It was apparent to family that my mum was early stage dementia by the time of the Brexit vote, so over 7 years ago. She had a formal diagnosis late 2020 when we finally managed to get her to the GP. Still early stage and needing support rather than care but otherwise absolutely nothing else wrong with her. We could easily be looking at another 10+ years.

Watching this with real interest. My DM is in the early stages of dementia I suspect and I’m dreading all this coming down the line at me. I recognise some of the behaviours, ringing at inappropriate hours, becoming fixated on certain subjects only to suddenly forget about them. My mother also has sudden suspicions that people have stolen things from her or are cheating her. Random rude and unpleasant outbursts that have resulted in the past in me going NC for months. I see it is all part of a pattern now. I have blocked her on my landline to avoid being woken at 6 am or whatever and only take her calls on my mobile. I have assigned her a special ringtone so I know it’s her . I’m intending to move areas next year which will leave her without any family support. My brother lives fairly close but never visits unless he wants something. My other sibling lives at the other end of the country. Going by these threads I am wondering if I can really do that now.

Thank you @MissMarplesNiece
Been a bit of a roller coater recently, find it hard seeing Dad get upset. Wishing everyone on here a stress free weekend.

@IthinkIsawahairbrushbackthere and @seanbeanmarryme Thinking of both of you and your aged P's - it's so difficult seeing decline in those we care about

Thank you @PermanentTemporary The home are trying to get her drink.
On Sunday she could no longer hold a mug of tea and I got it put in a beaker for her. She had to be encouraged to have some sips.
Dad saw her on Wednesday and was very worried as she wasn't eating. I then called in on Thursday and she was a different person and eating again.
This morning she's fallen out of bed after having a good day yesterday

Is she drinking much? It's pretty normal in Alzheimers to drink less and less as it progresses, which lowers blood pressure?

There might not be much that's reasonable for the GP to do im afraid.

Does anyone have any experience or knowledge of low blood pressure in Alzheimers patients?
Mum is at late stage and in a nursing home. She has had a fall and fallen out of bed thus week and last Sunday the ambulance was called due to concerns about her low blood pressure.
Thr home have asked the GP to review her but just wondered if this is common, she has declined quite a bit 8n the last couple of weeks.

@IthinkIsawahairbrushbackthere so sorry to hear this. Thinking of you.🌺🌺

I have had the most frustrating week. Yesterday morning she moved from A&E to the frailty ward in the morning and they told me there she would be going home. I rang to check she'd gone because my cousin wanted to visit only to be told that she couldn't go home because a risk assessment needed to be done because the lift was broken. (Clearly the one they did 3 weeks ago no longer holds!) We saw her and she was speaking quite clearly - delighted to see my cousin but when she saw me she asked in a stage whisper "Who's that woman with you?" But took off my glasses and got up close to her and she seemed to accept that I was her daughter!

They told me she would be leaving around 11 this morning. I eventually got through to the ward and they told me that they were still waiting. A bit of toing and froing with my cousin and we decided to visit. I took 20 minutes to get through to the ward and asked if we could come up although we didn't mind if it was a wasted journey because she had left. "Oh, no she won't be going today!"

So we visited and she looks horrendous. Her breathing is laboured and wheezy. Her eyes are crusty and watery and she couldn't really talk about anything. She did say "I just wish I could close my eyes and go" so we played dumb and said that we could see she was tired so we would leave her in peace.

So tomorrow it all starts again when I ring them after 11.30 a.m. to see where she is!

Hairbrush that is frustrating about the hospital but a relief about the diagnosis. It's a long old road.

I am still a Bad Daughter and as it's Friday evening, I'll be settling back with an alcohol-free eggnog and a caramel-covered cockroach.

@IthinkIsawahairbrushbackthere getting that diagnosis makes so much difference doesn’t it. Today I had a bit of a heated discussion - long story - about something that DH was told I had said - by proxy - that I knew I hadn’t . I realised MiL had said ,DiL says blah blah’ (her dementia at the time wasn’t diagnosed despite my hints to DH about concerns). A full year later this conversation is repeated back from third party blaming me for something and DH said ‘well what can I say?’.

MiL’s confusion at that early stage was the reason for the wrong message was passed on but saying that would sound petty of course. So many similar issues now make sense. No person wants to admit they are struggling and it is often hard for immediate family to grasp it too - and I think the ‘memory test’ is inadequate and lacking in depth.

I understand how you feel about hospital too - I hope she gets quick and kind care.

It’s amazing what a difference that knowledge makes to how you think about things. Fingers crossed for the right outcome for your mum.

I'm glad you feel better at the diagnosis hairbrush 💐

I feel sad and cross that she has to be messed around but also like a huge weight has been taken off of my shoulders. I didn't realise how guilty I felt but knowing that there is a physical reason for the dementia has made me feel so much better.

@IthinkIsawahairbrushbackthere thinking of you- you must feel quite helpless and feel frustrated. And you could not have prevented this. 🌺

@IthinkIsawahairbrushbackthere I understand your frustration at the hospital admission and the relief at the diagnosis.
We were at the same stage with MIL a couple of weeks ago but at least now it's agreed that there will be no further admissions or blood tests.

Have had a call from the home. Mum has deteriorated again. The Nurse in charge and I both agreed that she shouldn't have to go into hospital but we don't have an end of life plan in writing. The GP was called and he phoned me. Her sats are poor and he thinks she has a chest infection. They have not received the paperwork from A&E from her time there two weeks ago so he has to treat this as a sudden deterioration and admit her to hospital. I am not happy but he felt he would be negligent if she was not admitted. There is a possibility that she will improve with oxygen if she has a virus or intravenous antibiotics if it is a bacterial infection.

He also had a copy of a CT scan showing evidence of an historic stroke and vascular dementia. That has actually left a sense of relief - it is dementia, not lack of stimulation, not depression because I am not caring for her at home. It has been diagnosed and I could not have done anything to prevent it.

Same has to be in branch for ID checks and money laundering regulations. I had to wait 6 weeks for appointment but was told it was because it was near end of tax year and everyone needed to organise their ISAs!

Did you register your mum and dads at the same time? I can’t think of a reason why you could do one online and not the other but maybe an element of it being dependent on which member of staff you deal with. Or just random!

I registered the LPAs for my parents online with Santander along with my ID. They accepted the one for my mum but not the one for my dad. He's the one who's just gone into a care home but he's younger than mum (less than 80) so maybe that's why?