Cockroach cafe 🪳 Summer 2023 🪳

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in sweet peas, and raspberries from the garden to go with the scones and clotted cream.

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.

I just want to endorse what @betterchange has said. When my dad who was DM's carer was diagnosed with cancer the hospital said that they would refer her to Social Services and I said that there was no need because I would take over. It was the biggest mistake of my life and thereafter I had to fight for every bit of help. After her admission to hospital two years ago a friend who was a veteran of caring for elderly relatives for many years told me that I should make it clear to the discharge team that I would no longer provide any personal care. That was the trigger for them to assess her properly and decide she actually needed 24 hour care.

@WhatHaveIFound do you think that would be a compromise that your DM could accept - she is not refusing to care but recognising her limits. It was eye opening for me to realise how much SS had relied on me "filling in the gaps".

Thanks to all that replied to my morning post.

I have spoken to the discharge coordinator and told him that it was an unsafe discharge when they sent dad home on Saturday evening since he was only home for half an hour before he fell again.

I told that we will not accept him being discharged right now and that mum is not in a position to fill the gaps between care visits.

Now just hoping that he doesn't deteriorate any further before my sister is over on a planned visit next month.

@WhatHaveIFound that seems a very sensible approach. 🤞

what apologies if I missed it but have you spoken to Adult Social Care in your parents' area, or is your mum able to do that?
No one seems to read hospital notes, the discharge coordinator might have it right in front of them that your dad had to go straight back in.

hairbrush how long did it take you to recover from your breakdown?

General query to all - what happens if no one wants to take responsibility for an elderly person?

Social services step in where someone has no one to do it, whether because there isn't anyone or no one agrees to do it.

No one seems to read hospital notes This seems to be the case with the notes of most patients. Doctors spend ages typing stuff into their screens but then the patient (or patients representitive) seems to have to spend ages repeating information everytime there's a new consultation. Discharge info never seems to get passed on to GPs or other relevant people. I thought we had "joined up systems" , but it was weeks & weeks before DM's GP got her discharge notes with new medication prescription info. DSis was phoning surgery every couple of days trying to get prescription for new tablets, but even taking a photocopy of discharge notes into surgery didn't work. Tablets still being issued wrong now - nearly 2 months after DM's discharge from hospital.

I don't know if info isn't being read, not being passed on, is getting lost in a black hole somewhere or what. The system is well and truly broken.

And, please excuse my rant here - all the time our energy suppliers (British Gas etc) are make mega profits which our pathetic government refuses to windfall tax, money that could go into going someway to fix that broken system.

@EmmaEmerald About 6 - 9 months. It happened in June and other than visiting mum I didn't leave the house. Towards the end of the year I started going into town on a Saturday and Sunday to buy a newspaper and then I started to go out for coffee with a friend. At the same time I started to have counselling through Cruse. Two years on I am pretty much back to normal although I realise how much money we save when I don't wander round the shops!

Miss yes, it seems worse than ten years ago when now apparently everything is on the NHS system.

hairbrush oh dear. Yours collided with bereavement though which of course makes it worse.

I have been chatting with another "family" member today (not blood relative, but family to us). She made an interesting point, which was that not visiting mum for a couple of weeks might make sense. Her reasoning is, mum can't seem to take my problems seriously, so if the last image in her head is me rocking in a corner, that image needs to be embedded.

She has visited mum and said that mum did say she's sorry she upset me but there's a strong sense of "Emma will bounce back, she always does".

My doctor asked today if I was sure there's no cognitive impairment with mum. I'm sure there isn't. The only thing she forgets is what I've been through, or what suggestions I make that she ignores and then later asks for.

I think also if mum and sis get the calls about organising home care, they might realise how much hassle it is.

I presume we have to pay for someone to take over as mum's rep?

@EmmaEmerald - no, no bereavement. Cruse was piloting a pre-bereavement service for people who are in the position of grieving for someone who is still alive- as is the case with dementia sufferers. Two years on she is still with us. She has lost weight but still strong and very much alive, just not on the same planet as the rest of us.

Visited dad yesterday and he seems a lot better. Still not able to walk or transfer from bed to chair but at least this time they're not pushing him out of hospital. Very helpful nurse on his new ward who is going to try track down his missing teeth but in the meantime has noted he'll need soft food.

I was doing ok until dad asked what I thought of my new baby brother. My brother who was stillborn nearly 50 years ago. Had to go sit in the car and have a good cry afterwards.

I've spoken to adult social care but they weren't interested in sending anyone to assess the situation since he's self funding. Comes under the same remit as the continence team who we've been waiting months for.

@WhatHaveIFound I had exactly the same when my Mum was in hospital last year, couldn't get anyone to assess as she was self funding. The discharge team wanted to send her to a rehabilitation unit which the nurse on the ward said was unsuitable for dementia patients.
Luckily managed to get Mum into a nursing home just before Christmas. Have come to realise that her being in a home doesn't eliminate problems just presents different ones.
It's been 4 years since her diagnosis and it's heart-breaking to see her decline and that Dad is now alone at home, it's not what either of them would have wanted.

A minor frustration compared with others but another example of poor communication and waste of tax payers money. Requested all the hospital equipment be picked up from flat as MiL in home and likely to be permanent. Brand new hospital bed, mattress, Sara steady, commode and table. OT passed on the message any details, text from company saying technician will be with you, text saying technician has been. Only he hasn’t. It appears he went to the care home but no one can change his instructions without the OT and she is on leave. I am at the flat, tomorrow we are taking furniture out of storage to save MiL £200 pcm. Also incontinence team didn’t seem to know she is in a care home. Result 6 boxes were delivered and rather annoyingly the neighbour to them in and left them blocking the hall. It is apparently against the rules for NHS rehab team to take back even unopened boxes of incontinence product. These sort of debacles in this alone likely costing upwards of £500 to NHS. And we have paid for the van. We will be squeezing everything in somehow. 🤞😁

I rang the care home who were so helpful. We agreed I will take a box of incontinence products to them once a week. (They don’t have huge storage facilities). Phew. Clearing space and removing bits for charity. MiL seems to have kept every taxi company flyer for 20 years😮🤔.

My MIL died on Wednesday morning. She was 97 so it was totally expected.

My mum's response to anything and everything is now very strange. I told her MIL had died, her reply? She wanted to tell me that my sister hasn't visited 'for ages' and that my other sister didn't say goodbye when she flew back to Australia (neither of which are true)

Now getting reports from neighbours that mum slammed the car door on my dad's legs (he's physically disabled) and screamed at him out in the garden. Unsure who to report to as none of the professionals want to know.

I've been a long time lurker and have got a lot of help from following other people's experiences. Thanks to everyone for sharing their journeys.

My lovely Mum died last week but my MIL is still going strong- independent in her own home in her nineties- so I will continue to check in.

Sorry for your losses @Lightuptheroom and @Levie

Thinking of you @EmmaEmerald xxx
Hugs to everyone finding things hard.

Nan is getting a hospital bed delivered on Wednesday!! She has slept in her chair for months so I'm hoping this is going to make a difference to her pain. We had to get a little bit tough with her this week cos she is just not listening to advice or accepting help. I wish I could make life happier for her but I can't unless she does this.

@Lightuptheroom and @levie I am so sorry for your losses. 🌺🌺

@Lightuptheroom so sorry to hear that, but 97, 1926? Amazing really. I hope all goes smoothly over coming weeks and arrangements etc go well. So hard to read stories about your father and mothers situation - sadly I hear similar from friends whose mothers are becoming more difficult and their fathers are suffering. It is distressing. @Levie sorry for loss and hope all goes smoothly over next few weeks.

say yes to all help both.

Sometimes I've just got to laugh.

DM had an appointment at 2.45. I had my own hospital appointment before that so didn't get round to pick her up until ten past 2. She was still wandering around in her nightclothes. Asked her why she hadn't got dressed yet to which she replied she hadn't had time. A bit exasperated I said "You've had all morning" Her reply to me - " well I do have eleven tablets to take". 🙄

PS to anyone thinking sorting out 11 tablets is quite time consuming, she actually takes 8 and they are all presorted into those little dose boxes by the pharmacy.

@MissMarplesNiece that rings so many bells with me! Time awareness and management went for my mum a while ago, and it’s a major operation to get mum up, washed, dressed and out the door for a certain time. It’s like all those threads on faffer husbands, but with added wobbliness. Doing a bake off style “you have 30 minutes left” is useless because she’s lost the concept of how long that actually is. I’ve had success been using some tips I’ve picked up on this site for managing toddlers! (Never had kids myself)

I've spoken to adult social care but they weren't interested in sending anyone to assess the situation since he's self funding. They still have a duty to assess even if you are self funding.

in practice, that may not help, they’ll put you on a waiting list.

I suspect you’ll have to kick up a fuss about both care needs assessment and incontinence team, depends whether you have the energy

FILstime management went out the window too. One time DH turned up to take him to a hospital appointment. He gad booked someone to come a d cut his hair 45 minutes before the appointment. Couldn't see the problem as the hospital is a 5 minute drive. But he walked at a shuffle and even if DH dropped him at the front door before going off to park it would take him at least 15-20 minutes to get to the department. DH ended up dropping him off, parking and then running ahead to say he was here.

It is just easier, when we are running against a time deadline to just keep my cool, not get into discussion (about the tablets for example) and dress DM myself - and use the small child strategy of "which trousers, the blue or the black?" rather than leaving her to faff about getting every pair of trousers out before making a decision. She was dressed, hair brushed, perfume & lipstick on in 10 minutes.

with help of relatives cleared some of the genuine rubbish from MiL’s flat and some of her many freebies and special Daily Mail bits still in wrappers and boxes for charity. But vast majority of genuine mementos still in situ. Managed to squeeze in returning chairs from storage saving her nearly £200 pcm / phew. Waiting to hear when the 6 ‘hospital equipment items’ will be picked up. I expect it will take two visits. We will visit MiL today, family that visited yesterday and said she was slightly less agitated and still confused but still says she wants to go home🙁.

@MereDintofPandiculation social services should and do exist for every U.K. citizen…. Whereas financial assessments take place for elderly care, they still are the go to where you need specialist advice. Also likely already know that everyone is entitled to £1000 worth of equipment in the home, not means tested and same for attendance allowance etc if they qualify. Not means tested.

My DM has taken to telling family of her caring plans - which involve a fictitious family who will live in her house rent free in exchange for being her Carers, cleaners etc and she will live in the 2 storey annexe (with plans for a stair lift) - sounds grander than it is, but is a lovely space so living there would work. It is her unwavering belief that this family of Carers exist that is the first hurdle. Never mind tenancy agreements, safeguarding checks etc. My father looked perplexed and asked if he was involved. I think I will try to politely nod and change the subject when she explains all this on my next visit, however much I want to point out the flaws. DP are not quite in need of Carers yet and DM won’t want a reality check because she is always right!!