Cockroach Cafe 🪳Autumn 2022 🪳

I've had a crappy day of Sadmin. Feel like it goes in forever and each call creates more jobs. Today was about a mobile phone contract in my Dad's name that mum has been using. For some reason, she didn't pass the credit check so she can't stay on the monthly contract. The other was Scottish Power. Evidently, my Dad was on a great fixed deal which can't transfer to my mum now. It just seems like constant hassle and bad news so feeling sad.

Once dad waslying in bed spouting all sorts of stuff about the government aretrying to force them out of the town they moved from in 1986. Clearly not strange at all.

Oh gosh, we had that too. Difficult to persuade mum that dad wasn't wandering around in confusion, randomly moving furniture, just to annoy her.

I've just googled out of interest 'when carers are cognitively impaired' and it's not even coming up as a concept.

[Head in hands in NHS]

It's just awful. Feeling for you.

And twice dad had delirium and mum didn't even realise he was ill.

You poor thing. Mum couldn't remember what was wrong with dad and she would repeatedly phone the hospital complaining no one was telling her anything even if she'd had a long conversation a few minutes before but he still got discharged home. At least she didn't hate him but she would have a go at him because he wasn't doing his share of the housework when he had stage 4 heart failure, kidney failure and could barely stand. Dad was so desperate not to upset her he wouldn't say anything to HCPs and they seemed to think we were exaggerating.

My dad won't tell anyone any of this as he fears having to go into care for his physical needs. After the last hospital admission, he signed a RESPECT form that he doesn't wish to be taken into hospital unless it's for something like an injury.
We're fully expecting a situation where he has an emergency and mum fails to act.

We've now told everybody numerous times in writing that she has current memory retention of about 3 minutes (judging mainly on phone conversations where she will repeat herself word for word numerous times) yet the GP keeps saying 'no consent, no assessment ' she's now told GP to f off at least 15 times and that they aren't taking her driving licence away...
Latest one is that 'nobody has told her' what is actually wrong with my dad so he must be making it all up. In the last 2 months he's been diagnosed with fibrotic lung failure and congestive heart disease. The respiratory team sat down with both of them and 'explained it all'
Consequently my dad thinks he's dying and my mum has no memory of the conversation taking place.
They have a care alarm because my dad is very wobbly, my mum refuses to touch it because apparently my dad told her not to...

@countrygirl99 we had paramedics make a safeguarding as mum sat in the living room laughing because my dad couldn't breath.
He's been disabled for a very long time, so all the professionals view mum as his carer and his advocate. Only now she openly states she hates him and then can't remember what she's supposed to do when for example his catheter blocks.

@Lightuptheroom we had that when dad was ill. Mum insisted she could look after him fine but she really couldn't remember a thing. Kept sacking carers or refusing to let them in. Then when dad fell (frequent) and she called paramedics she wouldn't remember what meds he was on, where his dossette box was kept or even where they were written down (kitchen notice board). We only got somewhere once a community nurse had to come and change wound dressings and found she had emptied a weeks worth of drugs from a dossette into a vase and given dad so much oramorph he had overdosed and needed admitting.

Unfortunately we've already tried that, when it became evident a few weeks ago that whatever is going on for my mum means she can't remember how to get assistance for my dad (added to everything else he's extremely deaf so doesn't use the phone)
That's where the comment from the GP came from. I even requested that they call an MDT.
GP keeps saying that without mum's consent there is no way forward, so we just wait for the inevitable emergency situation.
We've put everything in writing to all teams as we've found that my mum can be faced with a medical emergency for my dad and not tell any of us for at minimum 3 days. For some reason the medical professionals (district nurses, virtual ward team and other teams to do with specific conditions my dad has) want to make check in phone calls with my mum and trust that she is giving accurate information - she isn't and can't.
We all live too far away to check on them daily.
Again, whatever is going on for her is a key to why she absolutely detests my dad and is currently shouting and swearing 24/7

@PermanentTemporary a move, unfortunately. But the nearest nursing home has been to assess and hopefully can take him before too much longer.

@SheilaFentiman ach I'm sorry to hear that. Will it be an actual move or have they got nursing areas?

@Lightuptheroom what a mind blowing mess! Maybe do a letter jointly to the GP and social worker 'summarising the current situation for the benefit of the team involved' ie trying to get them to see themselves as a team??

@Lightuptheroom that sounds very difficult! Nothing I can say to make it better except try and make sure you take care of yourself whilst dealing with all the crap! I'm early in the journey with my mum but already realising that keeping my own head and looking after myself first is key.

We're plodding on.
Care assessment has been done, mum apparently still has full capacity.
Any 'memory problems' are the GP's problem, social worker can't talk to GP without mum's consent
Dad had chest pain last weekend, my mum rang me laughing that he was crying with pain and she'd told him to shut the f up and take a paracetamol.
Care visits are 2 a day, social worker wishes to stress that this isn't because of a care need but because of mum's behaviour towards dad.
Social worker says mum's needs are medical, GP says mums needs are social care.
Dad has multiple physical needs but is so determined that he doesn't require personal care.. social worker won't be discussing the needs with the district nurses that come in twice a week, dad won't consent.
Neither of them will do POA because apparently we can put them in a home if they do.
All feels like going round in circles.

thank you new mum

Relieved mum didnt have to move to a nursing home in short time she was in care home though she was bed bound for the last month of so of her life
We looked at another a so called posher one straight away they said they couldnt meet her needs
The one she was in was old and a bit tatty but clean and I really couldnt fault them for the 3 months she was there mum went through a stage where she wailed constantly but nothing seemed to phase them cant thank them enough really
sometimes it's about getting the right fit and I'm not sure it's always these all singing and dancing ones all the activities etc were too late for my mum mainly

@SheilaFentiman DMil has moved twice. Never easy.

Had a wry laugh when I got the latest Costco email in my inbox. Costco members offered LPOA for £100 and discounted will writing services via a third party. My DParents loved Costco. Maybe that might have coaxed them to make provision. Wasn't to be but just putting it out there if that helps anyone else...

Hello all, checking in.

DF (82, Alzheimer’s) has been in his care home less than a year and they can’t meet his needs any more so he will need to move to a nursing home. Tough to hear this yesterday for me, DM and DBro.

@orangetriangle sorry for your loss. Thinking of you at this difficult time.

@MissMarplesNiece I think my mum is likely to be offered counselling for alcoholism and grief. Not convinced it will work. She's tried before and I think she's of the generation that doesn't talk about their issues! Hope you can get your DM there and it has some impact.

Morning everyone. Little and often is very wise advice. I wish I could be stricter with myself on that one.

My day job is ramping up too- I worked over 50 hours last week on top of everything else in an effort to meet deadlines. I am beginning to feel the wrong side of OK, but am strict about carving out time to exercise and just get fresh air in my lungs each day, whatever the other pressures are.

Today I am initiating a difficult conversation with my manager about priorities and workload. She is a very strange mix of kind hearted and process driven bureaucrat so that will be interesting.

I think because I seemed to cope so well in the immediate aftermath of the death- when they could not have been more compassionate and flexible- they assume it's now business as usual, and as we all know, it's really not.

The CQC have been brilliant in relation to the safeguarding enquiry ( I contacted them privately to ensure they were aware of the gravity of the situation) in the days leading up to Mum's death and will be sending an inspector to the case conference in a couple of weeks. I had to search through my phone to send the injury pictures in, which was awful. It's not how I want to remember my mother at all.

And if I hear one more person explain that probate is really easy as they did it for their Great Uncle Frank who had an ISA and a current account, I will explode. Yes, the process is not difficult to grasp, but the level of work and stress very much depends on how complex the estate is.

At least there is a will, and they set up PoA. The enormity of the consequences without those doesn't bear thinking about.

I took my mum to see her GP & while I was there told the GP about my DMs depression & anxiety. GP will not give DM antidepressants or anything for anxiety because she is already taking so many tablets heart & blood pressure issues & GP said they would interact. Instead she has suggested counselling. Don't know how I'm going to get DM to see a counsellor.

@orangetriangle I'm so sorry for your loss. I'm learning that it's a marathon and not a sprint, there's wisdom in pacing yourself and doing little but often. I had 2 hours at Dad's house today and came away feeling incredibly overwhelmed so I'm glad that my DD's said enough and made me leave.

thanks for your kind words everyone it's hard with everything you have to sort out also including selling mums house etc
The wait for funeral in our area is long I dont think funeral will be much before April it's all the waiting its awful

So sorry @orangetriangle. Be kind to yourself and sit down a lot if you can.