🪳 Cockroach Cafe 🪳 Autumn 2023

@Juneday no POA, both parents refuse to do it, they state that the other parent will make any decisions needed (which they won't be able to do) my name is on my mum's GP records. The GP seems to have taken the stance that she only contacts me if my mum asks her to. For example, mum recently had full bloods done, which meant a significant change in one medication, so she rang my mum and told her.. because my mum told the gp she only forgets to take her medication occasionally... despite a letter to the GP just a week ago detailing that we had found 6 months worth of tablets in the cupboard untouched.
GP even says that they can't put mum's medication in a dosett box because mum hasn't requested it.
Mums last appointment was 2 weeks ago, she shut the drs door in my face. No effort on the drs part to ask her if she would allow me to sit in the appointment, so we are constantly in the dark.
Meanwhile, the assessor from community mental health also didn't know that there have been 3 safeguarding referrals because my mum hits my dad...
Unfortunately one of mum's symptoms now is that she hides or destroys letters so we don't even know they exist.
The CMHT are supposed to be calling us back after their meeting on Monday, but I suspect it will be more 'she has capacity ' her retention of any information is roughly 3 minutes, which considering my dad is heavily physically disabled is a grave concern

@Lightuptheroom that is very frustrating for you, do you have PoA or could you get your DM to sign a simple letter to give permission for you to talk to doctors and/or be at appointments and assessments. We don’t have PoA so a nurse friend suggested that letter which has been useful. Even so SW told DH she was visiting his aunt to assess how she was coping - he said ‘my mother and I want to be there.’ Whatever happens the memory test results should be written up in the form of a letter to the GP and one copy to your mother, which you can read? That’s your chance to comment by sending anything you want to say or correct to the GP - that is what I did for MiL. GP didn’t respond.

This line between a patient having capacity to say no to further help and assessments but that patient needing them is madness. Who picks up the pieces? The mental health team have a duty of care to your DM an and must act in best interests. 🤞

@OhOneOhTwoOhThree bloody Covid .. rears it’s ugly head just when you don’t need it - we are still vigilant and test if any suspicions - like you feel we must protect the vulnerable. I hope the move to rehab has gone as smoothly as it can.

talking of memories, MiL awful cook but fantastic at knitting, I was hiding a birthday present yesterday and found a fab little jacket style cardigan my middle one used to wear, and I have kept the first baby blanket and a few other cardigans - they are so intricate and detailed. She had such a talent.

Any advice please
My mum announced on Tuesday that 'the lady' had done a memory test , she thought she did ok but 'its life'

We had no idea that the assessment was happening. A few weeks ago the GP made a referral and even then we weren't told anything.

So, my sister rang the community mental health team on Wednesday morning...mum has significant cognitive decline but has declined any other assessments. It's taken us two years of deteriorating behaviour to get here.

Apparently her case will be discussed at a team meeting on Monday.. nobody has contacted us to get background information, nothing. The lady who did the assessment thought I was my mum's daughter in law due to how she described me (my husband and brother happen to have the same first name) Is this really how it works?

Sounds like you are going through a tough time @IthinkIsawahairbrushbackthere , @Juneday and @SeriouslyAgain. I feel for you. I'm never sure which version of Mum I'm going to get, or if she will know me.

Mum has moved from the hospital to a rehab hub this week. Dad seems to think that she has made the move OK and is settling, but is pushing for her to be assessed sooner than the next MDT meeting on Tuesday. He thinks the previous move put her back by a week, and doesn't want her going backwards again.

I am feeling very sorry for myself as I tested +ve for Covid today so won't be able to visit for 10 days (I am using the upper end of the guidance as both my parents are vulnerable).

@SeriouslyAgain my mum stopped cooking many years ago but she loved to "do dinner" - ie order a takeaway! We would have a takeaway every week because she liked Chinese food and she liked to feel she was treating us.

DH and I have been out for the day today. I saw an elderly lady in a wheelchair being pushed by someone who could have been her daughter. It reminded me so much of me and mum. I was so close to tears watching them.

@IthinkIsawahairbrushbackthere
Oh no I'm so sorry. That is really tough. It's so hard because you know it's not their fault at all but it's almost impossible not to feel hurt.
Even until a few years ago, my mum would still make pots of food up for me sometimes. I know it used to make her feel wanted and needed, feeling she could help me out. I wish I'd known when I took the last one - it was cheese and ham pancakes!

@SeriouslyAgain I understand exactly what you mean. There are times I really miss my mum's pork casserole and her apple crumble. Mum doesn't have a clue who I am. She always recognises my cousin though. A while ago we arrived and she greeted my cousin, scowled at me and asked "Who's that woman you've brought with you?" We were so close until the dementia took hold.

Saw a friend yesterday whose mother had been very difficult almost scarily so towards her DF, DM now in care home, calmer, kinder, confused and can’t remember the horrid incidences. Her DF thinks he needs to visit daily, which is likely exhausting for both.

It does seem to be a phase, many on here may remember I was called worst DiL in the world, on one visit whilst still at her flat MiL, another time she just went for DH. It is really upsetting because you cannot reason with the confused diseased brain that causes the upset. You just have to keep remembering the well person isn’t the person you may now see. I am scared it is beginning with my DM…. DD complaining about her outbursts. I can see tough times ahead.

MiL back in nursing home, screaming out as usual…. As she came off all meds for over a week, be curious to know what she goes back on and agrees to take.? Hospital did not inform DH they were discharging, the nursing home rung DH just before he was about to drive to hospital. I think he will visit nursing home on Saturday, I am undecided.

@MissMarplesNiece
It's odd isn't it, what gets to you. I think it's really lovely to keep a bit of 'every day' stuff like kitchen equipment - it gives a sense of continuity. Thank you

My parents were the same. My dad would do anything for my mum and she took full advantage. Even when dad desperately needed carers in he kept sacking them because mum said she didn't like having them there. Then as her alzheimers progressed she couldn't understand his limitations and would shout at him for being lazy for not doing half the housework even when he needed help to get out of a chair and couldn't cross a room without his walker. She still expected him to the half the cooking, all the ironing (she hated that job so it was his), lawn mowing etc.

It's so hard isn't it. My Dad is totally devoted to my Mum and just wants to help her. He just doesn't seem to see how controlling she is. As she has deteriorated he has started to challenge her a bit. He now gets all health care people to call on his mobile so that he knows what is going on, and he is going into the memory clinic with her today. I'm hoping that she starts to accept her diagnosis which would make life easier for him, but not holding my breath on that one!

@SeriouslyAgain I think I understand - when I cleared my DM's bungalow a few months ago I kept some of her kitchen equipment - some mixing bowls, cookie cutters etc. ISome of it I remember from when I was a child - making Christmas biscuits for example. I feel really sad.

Thank you so much. I'm feeling very sorry for myself!

Oh you poor love, that must be so hard. However awful the situation with my mum at least she knows me, is pleased to see me and has her marbles, even though she can't verbalise them. I can't imagine how devastated I would feel if she didn't.

There's a lovely thread at the moment about old fashioned things, and lots of people remembering meals from their childhoods. It made me feel so sad for my mum. She was a great cook and whatever her other faults, there was always amazing home-cooked food. I'm so sad about what she's become, both for her, and if I'm honest, also that she can't remember me. It feels odd that my 50 years have been erased for her.

@MistressoftheDarkSide I only really put two and two together last week when I was on my own with her while my cousin went to put something in her room. Today I am going to keep a close eye on her and see how often it happens and how long for.

Her cognition is such that I doubt that any meds for the "absences" not sure if they are seizures would benefit her. She isn't doesn't hold a conversation or really interact with us much.

I will ask about meds to control the drooling, if available in our health authority, because of the damage it is doing to her skin.

@MistressoftheDarkSide it's a nightmare trying to juggle multiple olds. We've had to do battle many a time. With dad it was with the hospital where some staff on the elder care ward didn't understand that there was no point telling my mum, who has alzheimers, messages and expecting her to 1) understand and 2) remember for more than 5 minutes let alone share updates with family. I will admit to losing it with the nurse who told me off for phoning as they had already spoken to mum and said "I don't see why there's a problem it was a simple message" when she told mum, not DB with POA as it said in dad's notes, details of his planned discharge. Mum had phoned me in floods as she had phoned the care home he was going to in a couple of days and was convinced he'd died and nobody was telling her as he wasn't there. As far as we knew they were still waiting for a place.

@countrygirl99

Thank you - most interesting. SM hasn't had strokes but aneurysms in her brain and neck have been untreated as she has disordered thinking and refused treatment as she's precious about her hair.

She had an episode of freezing etc about two years ago and was in hospital for ten days, but stabilised.

She had similar on NYE but the doctor she saw at the hospital just advised rest.

HCPs are convinced the delirium she then developed fir two weeks was down to UTI which has been treated but I don't think a UTI untreated for two weeks would have only shown faint markers and none in her blood.

The delirium persists plus other delusions related to long term mental health and they have dismissed the aneurysms as irrelevant as she hasn't had blinding headaches....

Sorry I'm rambling again x Am a bit at wits end fighting unsafe discharge plans as my poor Dad is physically unwell and couldn't supervise for 24 hours a day even with the vague "care package" of visits 4 times a day.

Going into battle again this afternoon....

Thank you for that though - much appreciated x

MIL had freezing episodes after her stroke. It was like she was switched off for a few minutes then switched back on again a few times a day. Anti seizure meds pretty well stopped it.

@IthinkIsawahairbrushbackthere

So sorry you're going through all this and sorry to just butt in, but I've got a thread going at the moment and am scouring this board for information.

Your post describing sudden freezing episodes stood out for me, as my SM experiences this - she had this on New Years Eve and her mental health has gone off a cliff. She's currently hospitalised with a vague diagnosis if delirium.

Can I ask if you have had any medical explanation given for this as it is being somewhat dismissed in our case?

Thank you in advance and solidarity ❤

@IthinkIsawahairbrushbackthere sorry to hear about your Mum. Just wanted to say in case you don't know, that the constant drooling can be controlled. There are patches they can use - though these seem to be pretty much unavailable at the moment - but there are other alternatives which work really well. My Mum spent several months in hospital after a stroke and nobody offered any solution so I just thought nothing could be done. Then I brought her home and a visiting dietician mentioned that it could be controlled , one prescription later for some drops and what a difference it has made to her.

I think that was meant for @OhOneOhTwoOhThree . And I hope the same thing - fingers crossed for useful rehab and minimal confusion.

@NoBinturongsHereMate I hope the move goes as well as it can and she gains some benefit.

@NoBinturongsHereMate thank you for that account of your Dad’s progress. Timely for me as we heard today that Mum is moving tomorrow to a third hospital for rehab and recovery. Cue more confusion for a few days.