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.

[Newmum738]

Had an outrageous call with DM's GP surgery this week. They have completely messed us around over council tax forms for medical exemption. The service is ridiculous. Misinformation all over the shop and from the person with responsibility too. They are getting a letter so will see how they respond.

Visited FiL in hospital which is now a place in the middle of nowhere. He suspects he is just going fade away and I'd say he's probably right. He's been in since Easter Monday and not much happening! I certainly can't see him coming out because they don't seem to have anywhere to place him.

Then to top it off, we had to take DS to A&E last night with a suspected fracture in his arm. What a week it has been!

[Lightuptheroom]

Thank you, the care home staff are amazing.

In direct contrast, GP decided to tell my mother, during a home visit to my dad, that her daughter thinks she needs a memory test (why they keep doing this my sister and I can't work out) so she told GP she's fine, she never swears but they can 'bugger off' Typically this then produced a sweary phone call to my brother where she declared that my sister can take my dad for a month (she assumed it was my sister when it wasn't!) and we can all f off.

Think I'll join the bad daughter bench!

[MereDintofPandiculation]

Think I'll join the bad daughter bench! The bad daughter bench is no more! It’s a bad daughter’s room now, full of comfy sofas, gin, chocolates. I’m amazed you’ve resisted its temptations for so long!

[MissMarplesNiece]

It currently seems to be a thing with GPs. My DM's GP completely ignored the letter I gave the surgery about my concerns about DM's mental health. Then again, I don't even know if a GP has even seen the letter - the reception staff at DM's surgery are not the most efficient and I have my suspicions it's in a "pending" file somewhere.

[Lightuptheroom]

@MissMarplesNiece this GP has now ignored 5 letters, 2 emails from social workers, 3 safeguarding alerts from medical professionals visiting my dad ... all because there is no consent from my mum.
They seem to zone in on the need for a memory test... We're more concerned that she's showing signs of heading for a total breakdown, the character change has been that dramatic.

[seanbeanmarryme]

When my Mother eventually agreed to go to the GP, I sent an email detailing my concerns and the changes we had noticed.
I said that it had taken a lot to get her to attend and asked that he did not mention my letter to her. The first thing he said when she sat down was that her daughter had written in with her concerns!

[Juneday]

All, I think we were lucky in part because a nurse friend of mine suggested MiL sign a brief letter saying that DH can attend doctors visits and be involved. She agreed because she needs a lift ! And later because she realised she was confused about what was being said.

But she told audiology she only wanted one hearing aid, despite their tests showing hearing loss in both ears. So they agreed, as that is what she asked for. Later she said they were lying and moaned she couldn’t wear just one. Consent and capacity need a serious review at a higher level, she had signs of dementia but not diagnosed. As I have said before, if she broke two fingers would they just fix one!?.

I also emailed and delivered two letters to the GO that initially were ignored when MiL was first home and we were struggling - eventually DH got a call and GP visited.

On Twitter this week my Local authority highlighting dementia - yay - solution telling all pre 65s to take more exercise and eat a healthy diet. Needless to say a few ‘interesting’ comments by people currently trying to navigate the system
for family including a few complaining about lack of help from GP practises and pointing out that as Carers don’t cook - and there are no meals on wheels, healthy meals are not being presented to the most vulnerable!

still waiting for a letter from LA re long term care plans and finding but going to visit in home this weekend. 🤞. Will take flowers and some favourite treats - chocolate eclairs. Advised just to say see you later when we leave. I think DH will be expecting to see an improvement all round, I am keeping an open mind.

[GordonBennett345]

Small wins. Mum was awarded lower rate AA yesterday which, together with Alzheimers diagnosis, means we can apply to have her Council Tax discounted.

[Juneday]

Every little helps.

[Juneday]

Visited MiL in nursing home yesterday, she is and will remain confused but she looked healthier and happier. She was enthusiastic about the food, she has had regular showers, her nails have been cut and filed and a hairdresser visited (they hold personal spending accounts and send details every month). She kept asking about this and why she didn’t have cash. She thinks I have twins and that DH was bankrupt; neither are true - but she was more articulate and her sense of humour showed. There were tears but we left in a wheelchair in the dining room with her friend. Our experience of domicilliary care has been poor. They have no interest in nutrition, or any chatting or stimulation, despite supposed 45 minute slots 2 caters, I observed by chance at times it was one carer 16 minutes. No wonder we were going in and funding spilt drinks, her lying with her head close to banging on the radiator or feet dangling off the bed confused about her wet sheets, mouldy vegetables in the salad drawer, half eaten microwave meals covered with a plate to reheat😮. What happens to people who don’t have family going in?! Who washes their sheets and cuts their nails? Who puts out the rubbish and buys health meals and takes their favourite fruit round? I am not against care in the home and for many this would be their choice, but the role needs to encompass more and should include some basic nutrition training. I think we had a problem with this agency and I will contact them. This was the free weeks after discharge that I believe is paid for by the NHS - and therefore the tax payer. MiL did not get what was paid for in terms of length of visit that I know.

I was polite and left notes and said help yourself to drinks and biscuits. I bought whatever they asked to make their jobs as easy as possible. I appreciate it is a tough job, but it is vital it is done with care. The other problem is that in effect MiL was left unattended for approx 14 hours.

I hope ours was not the usual experience. The first carer we had was superb, kind and genuinely friendly - but after second discharge a different agency was used so she couldn’t come back. She did get in touch to ask how MiL was and wants to visit.

[cansu]

Brought down down to a rented holiday cottage for a few days with my disabled dd. I have been driving us all over trying to entertain her. She must have asked me hundreds of times why I bothered to book this place or why we didn't just stay at my house. There has also been plenty of moaning about it being cold. The food was awful in the pub. The stately hall was horrid she wouldn't want to live there! I am maintaining my calm relentlessly positive exterior but it is hard work!

[farnworth]

@cansu
you have my sympathy.
This reminds me of some trips we took with my MIL over the past few years - that she was adamant she wanted to do. They were tailored to suit all her many exacting requirements.
But…..
She was RELENTLESSLY critical and negative the whole time every time.
She was so rude to everyone she encountered.
She wore a perpetual scowl and stomped. She literally slammed doors.
She seemed to relish putting us out and making things difficult.
It ended up being (almost) amusing - no matter where we went she spotted the numerous invisible flaws.
However I felt so broken after the last one, I realised, to my relief, never again could I cope. No more relentlessly calm positive exteriors for me!

[Newmum738]

I'm at DM's house this week getting her house ready for sale. I'm very nervous about a move closer to me. She is most likely to be lost and isolated. I can't get her into the sheltered accommodation in my village and bungalows are a fortune so she'll most probably have to go into a standard house. I'm really worried that she will be lost, lonely and disoriented but can't really see another option 🙈

[MissMarplesNiece]

I've had an email from the Department of Transport saying that DM's blue badge application is approved and will be in the post shortly. I'm relieved, it should make life a bit easier for her.

DM is currently in hospital and I'm waiting for call to say she can go home today. She fell over on the ward yesterday - she went to put a banana skin in the bin and when she tried to press the pedal with her foot to open it she lost her balance. Luckily there was a nurse nearby.

When I went to visit in the afternoon she was sitting holding her head because "it hurt where it hit the ground & she thought her brain had swelled". Nurse who'd seen her fall said she had landed on her bottom and hadn't banged her head. Dr had been in and checked her over & was satisfied no damage done. Answer didn't seem to satisfy DM who insisted Dr was only a medical student & what would he know. Nurse stood shaking her head & then said to me "definitely not a medical student, much much more qualified".

[GordonBennett345]

@Newmum738 that sounds very stressful. There seem to be many reasons not to move your mum. What would be the advantages of moving her to the type of accommodation that is actually available near you?

[Newmum738]

Thanks @GordonBennett345 it has been a stressful week. She's 3 hours away from me at the minute and it's too difficult to support her from this distance. I came up to get the house on the market but we've hit a barrier because the house is in a trust and Countrywide are on the title deed. It's been a difficult week trying to fight mum's battles and work at the same time.

[GordonBennett345]

Oh god, Newmum, why is nothing ever straightforward? Are Countrywide easy to get hold of/deal with? Who set up the trust? Gah!

[Newmum738]

@GordonBennett345 they really are not. I'm disappointed in my Dad for leaving things this way. I feel like he's let me & my mum down and I don't think he would have intended that but I will never be able to ask him. The situation is so scary and stressful, I actually feel like I am dying.

[Juneday]

@Newmum738 keep pestering Countrywide. who are the trustees to the trust? They are the persons who take control. When I say pester, I mean find an email for someone very senior and ask them to help - they likely won’t reply but will forward it to someone who can. Good luck.

[Ameanstreakamilewide]

The only trouble with emailing very senior people in an organisation is that they usually have minions to monitor their inboxes.

So, they very rarely read emails from Josephine Public, like us.

Fingers crossed that you get a decent response, PP.

[Newmum738]

Thanks @Juneday. It's a nightmare. I don't think my parents had any idea of the potential consequences. They just thought 'that sounds good' and went ahead with it.

[BinaryDot]

NewMum I hope you have some good support around you for yourself. This sounds like a complex situation and I hope you will be able to share as much of the responsibility with others, including statutory agencies, as is possible. That feeling of dying is a warning sign that you are becoming overwhelmed and that you need more help. I think the nature of families makes us assume we must take responsibility for them by ourselves, and this is very ingrained for some people including elderlies, but it's often unrealistic. I live 300 miles from my DM, who's in a care home - which is why I stop off at the Bad Daughters' luxury accommodation now and again - it would have been really unsuitable to do anything else and I'm very glad I let pragmatics and advice from others guide me and not guilt. I am a decades-sober alcoholic and this is very helpful in keeping me on the right side of my own limits.

Take care of yourself and take your time.
Dot

[Newmum738]

Thanks @BinaryDot. I went to a bereavement group with DM today and ended up having a 1-1 session and a good cry! That helped a lot. Still got the problem of moving her. Just hope the answer shows itself!!

[Juneday]

I don’t think until you have been through something similar others can appreciate how stressful and upsetting things can become. I am still having issues with online banking despite bank agreeing PoA account is all correct, the member of staff who was most kind has been going through a 2 year probate, so she had some understanding. I was explaining my upset with Virgin to a group including good friends and friend of theirs, that Virgin cancelled a direct debit then sent red bill with late payment charge, and said ‘they’ - about the staff in the call centre - kept saying it is a transaction and I kept asking yes but what transaction? - this person round the table who barely knows me basically accused me of being racist )the call centre wasn’t in England). I was really upset by that and explained, or tried, that my problem is not with the staff who answer but the training by management. It took 5 hours of my life over a week to make sure MiL did not get cut off from her phone that was linked to her falls alarm. This bullying man wrongly accusing me of racism had no idea how stressful such things become and when he walked away I burst into tears. I wasn’t criticising the staff and I am always polite. I wrote to the CEO of Virgin Media - he didn’t reply but a letter arrived saying the direct debit was reinstated, late payment fee cancelled and £1.35 added for good will!

I have shed many tears of upset and frustration @Newmum738, things take longer than I appreciated and working out who to go to for answers and help can be confusing - but keep asking and seek out organisations such as Dementia U.K. and Help the Aged etc. Citizens advise too. 🤞