🪳 Cockroach Cafe 🪳 Autumn 2023

[MereDintofPandiculation]

I’ve just done the autumn deepclean, brought in a load of logs, and made sure we have plenty of rugs and throws, and toasting forks and marshmallows. I’ve even brought in extra rugs from the Good Daughters’ room under the stairs - they’re not needed there, no-one ever uses it.

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.

@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.

@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.

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.

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.

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

@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.

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!

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.

@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

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.

@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.

@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 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.

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).

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?

@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.

I don’t know whether it’s how it usually works (I was with Dad for his, nobody with me for mine) but the memory test is like lots of IQ tests, it doesn’t need background information, so don’t worry about that.

Usually there’s a short test (remember and repeat later a list of words, an address, recognise silhouettes of animals, draw a clock, count back in 7s from 100, etc), which is sometimes done by the GP and sometimes by the memory clinic, followed if your score is too low, by a more comprehensive set of tests. I wonder if your mother had the short test and refused the others?

@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

@MereDintofPandiculation thank you. Do you know what happens if there's significant behaviour problems too, who would be responsible for looking at those?
The assessor said that mum has refused any further assessment including scans, she said mum was very confused, so my guess is that we get told that she has significant cognitive decline, is that then left for another agency to work with the consequences?

This line between a patient having capacity to say no to further help and assessments but that patient needing them is madness The memory tests require cooperation, so probably no point in forcing the issue, else she’ll just fail to cooperate when asked “pick up the blue block and place it on the yellow circle”.

My father never had the full set, sudden physical decline intervened. I don’t think it affected his care

New one from mum this week. I've had 5 phone calls asking for DB1s phone number as she "doesn't have it since he moved". He moved in 2022 and it's his mobile number so hasn't changed. It's in all 3 address books (don't ask!), on a pin board in the kitchen and programmed into her landline and mobile. I've given it to her every time she's called.

No, sorry. How do you mean “look at”? Cognitive decline is going to cause behavioural problems, I don’t think they come into the medical assessment which is testing for the cognitive decline behind the problems. My understanding of it, anyway. I’m not a professional. So behavioural problems would come into any assessment of support needed, by social services. Either of her or of your father, since the problems affect his care. But I’m out of my depth here - my father, while stubborn and convinced it’s the world at fault not his brain, isn’t caring for a partner, and has always been impeccably polite.

Many thanks @MereDintofPandiculation I'll try and speak to the GP, perhaps they ask social care to assess again. Unfortunately mum is a swearing, spitting bundle of hate at the moment, which makes any support very difficult to give as she decides that everything is my dad's fault. She also has no insight at all into things like not retaining information and no insight into her behaviours. She can be talking to me fairly normally and suddenly become very very verbally aggressive because my dad has refused a book that she bought home for him.

it's his mobile number so hasn't changed To someone who’s spent most of their life on landlines only, which start with an area code originally based on the first few letters of the town name (so Bradford and Brighton are adjacent codes despite being nearly at opposite ends of the country) it can be very difficult to grasp the concept that you can move house and keep the same mobile number.

Would it be worth working from the other end and getting social services to look at dad’s care?