The Cockroach Cafe 🪳 Spring 2023

I feel very fortunate MiL and my DP did LPoA, although MiL only wealth. Having said that still can’t get Banking online to open, login yes but just gets stuck, tried 4 times and bank staff have tried tech support - no one can work it out, then big energy supplier after being emailed copy of LPoA twice and asked to send bills to me, sent 4 letters to MiL all duplicates, saying they have changed her DD, but they don’t even have meter readings since last year so they could be £s out. They have changed them down not up but would rather she was in credit so I have put them back up again. Phone company for some reason cancelled their DD then sent letters ‘you haven’t paid’ and we are making a late payment charge! All these issues despite having LPoA, be impossible without. a

DH away all weekend so I need to go round everyday, food delivery and buying, washing etc. It is always me but he usually does on Saturday and other family visit once a fortnight. No one available this weekend!

MiL was chatty but complete nonsense, even made up words, duvet cover was filthy and then she spilt drink on it. One of her least important meds, D Cal, was on a plate - are the Carer’s supposed to stay and check she has taken it? She refused a cup of tea and is talking to an imagined child. I couldn’t stay long, but feel worried leaving and also have the responsibility.

SW has rung DH and said she has found a trial place in a home. So many questions need answering now.

is the trial funded? If it works when does 12 week disregard start? Who decides whether home is working? (Assume SS as we don’t have LPoA on health).

@rhetorician I’d give Age UK or the help desk at Office of Pubic Guardian a call for specific advice . I’m in Scotland but from memory the reports that get sent to to court need to be done within 28 days so are ‘current’ and have to be coordinated.

I think this will happen with my parents, still refusing to even look at power of attorney because they convince each other that we're trying to get them out of a house that isn't even theirs (housing association). They're in for a rude shock when adult services do have to take over...

2 safeguardings last week means that they've got a gp visit today and a social worker visiting (apparently not to do a reassessment so who knows what they are actually doing)

Mum is spitting bricks because a nurse did a memory test on dad to check whether he still wants a previous DNAR in place, apparently nurse had no right to ask questions etc (mum telling her to f off and mind her own business being the reason for one of the safeguarding)

Mum declares she's going to TELL the GP exactly what she thinks about some random person asking dad questions (which incidentally he fully consented to and actually enjoyed it!) Still reckons no one has told her dad has lung disease and wishes to make a complaint against just about everybody... She's had it explained at least 6 times. Then she says she should be considered an expert as over 60 years ago her sister had TB and was put in a sanatorium..... We're struggling to see the connection.

Mum can't walk hardly at the moment as something has gone wrong with her hip, but she's not going to ask the GP as she knows it's old age...

So this evening could be interesting....

Most infuriating is that none of the professionals actually tell us anything because there is no consent yet expect us to give input when it suits them

@rhetorician sorry you are going through all that. My FiL has been in hospital since Easter and MiL very disabled and deaf as a post. I've advised DH to get her to sort the POA and he says yes and continues to do nothing. Given my situation with DM, it's beyond belief for me that they wouldn't get this sorted while they can.

Glad she is settled and, although it’s really sad, good that you have a definite answer on the diagnosis, sorry the paperwork is a mess though.

Hello! An update - mum seems settled and fine in the care home, and now has an official diagnosis of unspecified dementia - scored 40 on the scale which is at least definitive.

I am having a hard time with the court of protection application - social worker says that dementia clinic needs to fill out the COP 3 (the capacity report) even though she has already done the capacity report and social worker is listed as one of the people able to complete the report.

Spoke to dementia nurse, they don't do it, their doctors won't do it, no one even wants to do it privately...she did give me a name, but I've no idea what this will cost, and also feel that my mum has now been assessed by three different entities (SW, DOLS and memory clinic). Not one of them think there's any doubt that she doesn't have capacity. Why should she be assessed yet again?

This is all a bit bonkers - I want to do the right thing, but it's being made rather difficult. Mum has money but no capacity to access it. I have no legal authority to access it. Care home can't be paid...I could just walk away then LA would have to sort this process, right? (I don't want to do that) aaargh.

People, go and do LPOA for everyone you know, please!

Why am I not surprised about hearing your experience of Steve Barclay, @countrygirl99 ? I could rant about what I think about the man.

Dad used to get home visits the last 6 months. But before that a hospital consultant had to have a hissy fit before who could get a face to face at the surgery. Then DB wrote to their MP (Stephen Barclay) to complain that a 93yo with heart and kidney failure and severe arthritis and osteoporosis was having to wait in the car park on his mobility scooter in winter with no shelter to be called in. Barclay couldn't give a toss you won't be surprised to hear and said this was entirely reasonable 'cos covid.
ILs got home visits even when FIL was still driving as severely disabled MIL couldn't be left. He got an allowance for 8 hours sitting service a week from social services so he could get out the house for appointments/shopping/social life on top of 4 x a day carers but I suspect he hadn't let on to the practice. He just hoarded the money so it ended up paying MILs care home fees for a while.

GPs are short staffed in many areas. That really shouldn’t be their final word, though! The district nurse sometimes comes to my housebound mum for things, not sure if that would help your mum?

I think it must be very much dependent on the doctor and the surgery. My mum's GP did a home visit in January after her hospital discharge. Like you MissMarplesNiece, it takes a military level organisation to get mum up, dressed and manoeuvred out of the house, and two people are needed so one can be with her at all times and the other parks the car, goes to reception etc etc.

That's so bad. Not sure if it's usual but I would assume it is, sadly.

I tried to get a GP home visit appointment for DM this morning. It now takes 2 people to get DM into & out of the car. Parking at GP surgery is dreadful & usually have to park quite far away, DM can't manage the walk. GP reception told me they do home visits only for end of life. I think it's very unreasonable of them not to do home visits for those who are more or less housebound. I feel quite annoyed with their attitude. Is this normal for GP surgeries?

We used a Yepzon tracker for my Mum and could track where she was through an app on our phone.
There's an annual subscription fee but it was worth it when she went walkabout. We've only stopped using it as she went into a nursing home last December.

I'm looking at Smart tags. Thanks everyone.

Tile or SmartTag work with Samsungs?

She doesn't have an iPhone and we are on Samsung.

@GordonBennett345 we have gps on her phone. Otherwise a Tile might be an option?

Yeah, AirTag, providing she doesn't live somewhere very remote, but if she lives in a normal suburb it should work ok. Batteries in mine last a year or more and I'd be on my 3rd or 4th set of keys without them. About the size of a thick 10p coin. They're not too extortionate - I got a pack of 4 when they were £99. So you could have a couple to slip in the things she is most likely to take with her - even sew in coat lining?

We had one of the rechargeable ones a couple of years ago. It wasn't very accurate.
If I was doing it now I'd go with a phone or AirTag.

By battery I mean NOT one that needs recharging every couple of days. Mum doesn't live with us.

Does anyone have a tracker for their parent with Alzheimers? Mum is getting worse fast and we'd like something small, battery operated with a decent range to put in her handbag. She hasn't got lost/gone missing yet but we feel it's only a matter of time.

I can only share what happened to us when dad was admitted after breaking his hip. Mum and him had LPAs set up for each other, created before his dementia.

In A&E the doctor discussed DNR with us as they would have to operate and replace his hip as an emergency, a major operation by anyone's standards. Dad was by that stage far too deep into dementia to realise what was going on. We all (mum, me, sibling) discussed the DNR again and decided it was for the best.

Long story short but dad never recovered really from the hip op, his dementia made him forget he'd had it done and kept trying to get out of bed and injure himself again, he needed a catheter as he couldn't use the loo, wouldn't cooperate with physio and just starting losing weight, sinking deeper into dementia and it was clear he hadn't long. At that point we had another conversation with a lovely consultant about palliative care being the only option and she again mentioned the DNR, along with withdrawing active "treatment" and just keeping him comfortable.

It's really hard. But you need to take advice from the medical staff at the time who will have seen it all before and can share their experiences.

MiL has gone from being said to have capacity to not, but when paramedics arrived she perked up and said ‘do I have the privilege to say no to hospital’ and he said of course you do. They were great with her - and She calmed down and was told drink more water 😁. I think she is told that twice a day or more, she tells every medical person she meets she loves water and drinks loads - she doesn’t - but she sounds so convincing🤣. Looks like SW will suggest she goes into a nursing home. Pros and cons, peace of mind but not what she wants and fear she will deteriorate from the anxiety and more change.

Not my decision or choice….

to add we did have medical power of attorney in place that being said she would have been unable to decide for herself in any case so just as well but I am sure if someone has limited or no cognitive ability next of kin can decide if a peace plan can be put in place