The Cockroach Cafe 🪳 Spring 2023

[MereDintofPandiculation]

Welcome! I’ve done a really good clean of the place overnight, and brought in daffodils from the garden to remind us all that spring is around the corner and better times on the way.

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.

Ugh, sorry.

What if you say no, or that you will do an online shop for him and book a cleaner but that's all?

Honestly, I wouldn't stress too much over challenges from the OPG. They are months and months behind and have a huge back log. I dealt with them for eight years until February, submitting accounts annually. They won't want to add to their case loads.
I think all they would say to keep yourself right is keep receipts for anything over £100.
@Motownmelodies Good to write down how you feel. Seeing it in black and white, and indeed, showing it to others on this board, means you are one step forward to finding a solution to maybe make it better.

Hello - long time lurker, but taking comfort from others stories and learning from their experiences. We've had 18 months of anxiety, confusion, failure to cope, paranoia etc etc and multiple hospital admissions for falls. Continual insistence that she had capacity. Anyway, about 5 weeks ago carer called, said she'd fallen, but seemed ok. This was after a visit from me where I was really shocked at her decline (couldn't work tv remote, had forgotten how to use the phone, wandering and calling out all night), anyway long story short, admitted to hospital and SW rang to say she was sure mum didn't have capacity. Excellent SW I must say - mum in discharge to assess bed in care home, and now trying to find a permanent placement.

She is self-funded, but refused to give me POA so I have to go to Court of Protection (thanks mum for making a hard thing even harder). This is all forms and process and emails and phone calls, and I'm finding it difficult to find any space at all for my work or other aspects of my life. I guess I'm still processing this emotionally (the last time I saw her I went to the house first and absolute scene of chaos - quite upsetting - and then when I went into see her she barely recognised me). My father died years ago, I have no siblings - it feels like my life before I left the UK has just been wiped away and i feel alone and adrift (I should say I have a lovely partner, kids 11 and 14 yeah, as fun as you think it is, a good life, a job I like etc etc).

Any advice? Care home decisions likely to be constrained by availability; process of filling the CoP forms is a bit grim too tbqh....

@rhetorician Treasure the excellent SW. They are worth their weight in gold and will have seen it all before.

Even though you don't yet have say in your DM's life, the excellent SW will work closely with you to help make sure your DM's best interests are followed. We also had to go to Court of Protection to resolve matters.
It is stressful, it is relentless, but once 'they' are in the system you do begin to get bits of your life back. My advice is do what the SW tells you.

Yes - I totally lucked out with her. She is super organised and practical and I work well with her. It's already - bizarrely - easier, as I'm not answering multiple phone calls every day (although the silence is pretty weird too!) and I'm not actively stressed about what she's doing, whether she's eaten, or changed her clothes etc. We were just on holiday and that's the first holiday I've had in about 3years where the soundtrack of anxiety wasn't constantly running in the background.

@rhetorician great you got a good social worker. The good ones know all the tricks/right things to say and use them to help. The bad ones make life so much harder. We've had both over the last 8 years and it really makes a difference.

'the soundtrack of anxiety' sounds familiar.

I'm still in a hot mess dealing with mum's money, having massively screwed up with HMRC over the Inheritance Tax paperwork (note to others, it's a pig at the best of times, and throw in being in grief adds to the mix). I feel guilty of course, and want it all to be over. And so of course it is dragging on.

And to top it all I seem to have killed her spider plant, which I didn't even know was possible. Every time I look at it, it seems to be doing worse.

@notaflyingmonkey spider plants can be gits at pretending to die. I took on DILs when they emigrated and think it's dying on a regular basis but it always recovers. Once the weather's nicer put it out in the garden for a while and don't over water.

Will do @countrygirl99. I know it's only a plant, but I seem to have emotionally invested in its well being! I took some seeds from a beautiful poppy that mum had in her garden - if only I can remember where I put them! I have so much of her stuff that I couldn't bear to deal with at the time, so they could be absolutely anywhere.

the hard thing for me with dementia is working out if they are having a bad day, or have had a sudden deterioration, or whether they are actually poorly with something. I’ve learned from experience that if mum is running even a slight temperature (eg after a vaccine jab) then she goes doolally. I’m looking to buy a thermometer so if the carers report she’s not right I can ask them to take her temperature and rule that in or out as a cause.

a new thing for mum is that if DB or I visit, then go to the shops for her, we’ll inevitably get a phone call worrying why we aren’t back yet, even for the briefest trip. Well, I get the phone calls, she rings me to say your brother has gone out and isn’t back yet, she won’t ring him directly for some reason, even though the button on the phone works, that’s another issue. We think she’s losing her grip on time and judges the passing of time on whether it’s light or dark and if she’s hungry or not. It’s probably a progression on not knowing what day of the week it is and she’s starting to get a bit vague on what season it is. Her birthday completely passed her by, and heartbreakingly, so does mine and db’s. She’d never not acknowledge our birthdays, we don’t care about presents but they were important days for her. To not get a phone call on my birthday is the biggest indication to me that the mum I used to have has faded away and only a shadow remains now.

and yet, similar to your dad, she still has her moments of complete lucidity and follows up a conversation from earlier in the week. Such a cruel disease, and yet she’s still “competent” apparently.

Time is a big tbing with mum too. I can pop out to the corner shop for milk, 15 minutes max and she'll think I've been gone ages. Or she'll think Christmas was months ago in mid January.

My mum lost all track of time a few years ago and had no idea if she should be making breakfast or getting ready for bed. So she did both. Twice a day.
My poor dad was at the end if his tether.

She would often call me at 4am saying she had called a taxi to take them out for tea.
Even telling her it was dark outside didn’t help.

When dad passed away, mum was in a care home and they had to check on her a lot (!) through the night as she’d get up, dressed herself and do her hair.
One time, she sprayed so much hair lacquer on that she set off the fire alarms and the fire brigade came 🤦‍♀️

From then on, i ‘forget’ to put hair lacquer on the shopping list. 💔

On the time thing - my dad was really bad with this too. He could still read a digital clock but his dementia brain couldn't work out whether 3:00 was middle of the night or middle of the afternoon. So he'd be hassling mum about preparing lunch at bedtime or wanting to go out for a walk at 2 in the morning.

We got a clock from Alzheimer's UK which was large like an ipad, clearly stated the time and day of the week, whether it was morning or afternoon. It did help for a bit.

Dad is hopeless with time too. “It’s 12 hours since I’ve had any food” “i was in hospital for 4 months”. And certain numbers crop up, it’s always “4000 people can see my medical records” “it took 4000 staff to do X” But he still knows (and tells me) what the number of minutes on his clock will change to next. And if I tell him when I arrive I need to go at 12.15, he watches the clock and reminds me to go …. then keeps me talking another 10mins.

But he recognises the names of all his medicines. Staff don’t say “here’s your lunchtime tablet”, they’ve found they need to say “here’s your Resorpinol” if they don’t want to get into a long discussion about it.

Mum always thinks she went to the GP last week when she hasn't been for couple of months but thinks it's years since she went to the optician even if she has only just got new glasses.
And she sorted out dad's clothes last week when it was February 2022. And the summer outdoor bowls season has been starting next week since early December.

Mum's latest one is having the tv so loud she can't hear the phone. The first time I was phoning to tell her I was just leaving my house so it wasn't a problem even though my stomach was churning the whole drive. I realised the reason as soon as I got out of the car! But I can't drop everything for a 2 hour round trip to check she's OK every time she doesn't answer repeated calls. So I've decided calls will be late morning as the daily care visit is lunchtime so if they don't call to say there's a problem it's just she didn't hear the phone.
She does have a hearing aid. Had it nearly 2 years but doesn't remember having her hearing tested so insists it's dad's (has probably thrown the very expensive aid away on that basis). Poor dad used to take his out when mum was watching tv as it made it too loud for him but definitely got worse recently.

DWP are trying to get hold of me atm about mum's aa application. They seem to try once and then wait 4 hours before they try again. This morning I thought 'they won't try before 9 o'clock'. 8.40 and I was in the shower!!! I'm going out about lunchtime so I bet the next time they ring, I'll be driving 🙈

I have been on hold to the OPG for an hour so far to go from 25th to 5th in the queue. At least I can work at the same time!

@funnelfan my mum forgot my birthday this year and last. I'm her only child and it felt a bit heartbreaking. She remembered her own last year, but doubt she will this

Mum remembers my birthday, I think because it's the first day of spring, but she doesn't remember either of my brother's.

Me too! I've made it from 24 down to 2. This is about my 6th time calling because my parents have totally messed up the forms.

About putting things "in safe places" - I got my better half a set of Tile bluetooth trackers, as he would forget his own head if it weren't attached.
(For iPhone users, use airtags, for Samsung users, Tile or Samsung tags).
Very good for avoiding those last minute where-did-you-put-your-purse moments.

For my mum (still no further forward with diagnosis despite asking my dad's district nurses to take him away on a regular basis and swearing at them when they won't ) everything is 4 years ago. The extension on the house which is at least 40 years old was put up 4 years ago etc etc etc

Good but also sad to read so many stories and worries that resonate. I have been keeping a diary since MIL fall, broken ankle, that exacerbated her recently diagnosed Alzheimer’s with poss vascular. 3 months later, one more stay in hospital, second discharge during a ward closure due to Covid, we are told she has capacity and wants to come home. 4 care visits, 2 Carers per visit. Told she has physical ability to walk with physio help and frame, but mentally not there? Physio has 6 week waiting list. MiL I’m adult nappies, Hospital sent some home but not enough and nurse said she would measure and order more. They still haven’t arrived so those I bought for emergencies are the wrong size. Second wash I have bought home covered in excrement. No nearby family so I do washing, most food shopping and a light clean BUT I cannot and will not visit everyday. MiL has taken to screaming out loudly and her neighbours ring DH or myself and think we should drop everything and go round. Went late today after missed call and MiL telling unlikely story and getting very angry and agitated with me and criticising DH to me and the Carers, basically the whole world is against her today. I put shopping away and offered a snack but the whole time she is shouting and saying just go, I used to like you 😮. Carers stuck in traffic, new pads/nappies due tomorrow, blood tests booked as a result of DN & rapid response nurse calling ambulance twice over weekend but no actual medical reason to admit her. Carer’s don’t seem to be offering commode which is part of the problem. No nearby family, and DH works long hours so all falls to me. Have PoA on finance not Health so no doctor or SS can officially talk to me. The truth is I feel sad for MiL, I instigated appointment that got original diagnosis, but she has always had a slightly demanding and nasty side and this is all I got today and have had in the past before dementia got worse. I have told DH and his SIL I am not going every day, which leaves SS in charge; OT at NHS allowed her to chose home care, reassessment will be due in a few weeks as this is NHS rehab package. I assume MiL will still say no to a care home. We will need to get a cleaner once a week just for the basics, and I will do 2 visits maximum. The way she was today, and I know it is the dementia, I feel like walking away altogether. DH took a while to see but totally gets it now. It’s sad, frustrating, and the lack of joined up thinking between those involved is madness. GP seems disinterested. Hospitals don’t share notes. 7 different carers so that is unsettling for MiL, in total on her own 14 hours from last to first visit so bed always need changing, which takes up a lot of the visit. …. Anyone got experience of assessment post rehab and where to get a suitable cleaner?

@Juneday I'm really sorry, it sounds all so familiar except I only had the foul clothing (and slippers) to wash for a three week period of food poisoning. I can smell it now, driving home with the windows open in the hope I'd get home before it was too much. I kept a diary too and it is grim reading now.

Her children are being shielded from the realities of this by you stepping in. Long hours worked and living at a distance mean that it's on you. If you weren't there then someone else would be stepping up (starting with the carers offering to toilet, if they were cleaning the sheets then emptying the commode would be the preferred option). If the care package is only working because you are holding it up then you have to stand back and let it fall, ideally before the reassessment.

I didn't routinely do MIL's laundry, her carers would put a wash load on in the morning (I suspect that the bed needed changing), the afternoon carers would move it to the drier and the evening carers would fold it. I wasn't available to care for MIL as I had enough on with my mother at that time. We've never got on, I refused to follow orders.

If it's the six week home from hospital service, yes I've seen it three/four times for my MIL. She got to the six week mark and as soon as she would have had to pay for the service she dismissed the carers. At that point she would have had two months of eating regularly and taking all her medication so she was quite well. She then went back to not eating, skipping her tablets and would start falling again after a month or so. There would be a fall - discharge - fall -discharge with care plan cycle, it would get to the end of the free stage and she'd sack the care team again. It seemed to be obvious to anyone who knew her that she wasn't acting in her own best interests, that nothing had changed and this was just going to repeat. Fortunately she has good bones and didn't have any serious injuries but did have a lot of hospital admissions. Eventually it was decided that she was not safe at home and that she didn't have the capacity to make that decision for herself. She was discharged from hospital to a residential care home. She eats now, several of her longstanding issues have cleared up now that she's taking her medication as prescribed and she might fall once a month rather than three times a week.