🪳 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.

Thanks All. Social Care assessment and attendance allowance application are both on my to do list. She's had her cataracts done in done eyes over past 6 months - persuaded her to go private as its a 2 yr waiting list in her area and 80% vision loss already in the worst of the 2. After both ops I put carers in place to administer the drops for the following 4 weeks and must admit it was a relief to know she was having those drop-in visits. She's very resistant to anything I put in place (meals, carers etc etc) but does then accept it eventually. Her eyesight is now better than mine and will hopefully mean she can maintain some independence and quality of life for longer. Sorry we are all going through this but hopefully we can support each other.

PS does anyone have recent experience of memory clinic referral wait times after GP referral.

@HibiscusIsland1

it's probably dependent on your area sadly.

does anyone have recent experience of memory clinic referral wait times after GP referral it was four or five months for us, but mum was referred from hospital rather than GP. The social care assessment took six bloody long months and the admittedly very nice social worker turned up in the day we took mum to A&E as she’d been having “funny turns”. (GP consulted, said take her to hospital, so we did). Hospital assessment then overrode everything the social worker said. And that wait is in a relatively naice area with a council that isn’t going bankrupt.

9 months from referral to diagnosis. I only think we got it so quickly as Dad had a fall requiring hospital stay and they did his brain scans. So we didn't need to wait for that part.

Mum got her memory clinic appointment very quickly.

She had her first memory test over the phone October 2020. Repeated a couple of weeks later as she told us she'd "passed with flying colours" and we didn't believe it. This time DB was with her and realised that when they asked her to remember 3 words she was writing them down, time of day - looked at the clock ( though telling them to the minute should have been a clue), time of year looked at the date on the paper. All good coping mechanisms but when DB took them away she thought it was spring 2003.
Memory clinic was before Christmas and brain scan early Feb.

Of course she doesn't remember any of this and so as far as she is concerned she has never seen a doctor about her memory so why on earth does everyone think she has alzheimer's.

@countrygirl99 clever lady but worrying too. currently discussion on women’s hour about blood tests for Alzheimer’s and how it is more common in women and how they can use tests to start early treatment. Worth a listen.

MiL got her apoointment within about 6 weeks, DH sat in and didn’t mention the hallucination she had a week earlier and whilst she was diagnosed with dementia, type possibly mixed, parts of the long diagnosis letter and advise was based on inaccurate info she gave. Such as she has a regular gardener who helps her out (not true, she would ring help the aged 4 times a year for a 1 hour gardening slot), she implied family did all her shopping and cooking, and it rad as if we were on call for all her needs which we weren’t, we did the shopping only (although offered her Sunday lunch she always turned it down) and she overstated the help of a local befriending service. Read the diagnosis letter carefully…. And if you spot errors correct them and send it to her GP. We/she did get given lots of info about local services, day centres and charities which was useful.

Yes I think it’s important for someone to be on hand to ensure whoever is doing the assessing gets accurate information when dealing with elderly and/or potential dementia patients. I’m surprised it isn’t insisted on given they are relying on the memory and truthfulness of someone who has memory and perception issues.

although having said that, mums memory clinic has a nurse attached who does home visits and we agreed it would be best for her to do it on a day I wasn’t there to get a realistic impression of what mum’s like day to day at home. The nurses report was actually fairly representative of how mum is, which I think is reassuring.

Hi my mums still in hospital after been taken in with confusion and high bp. The GP thinks she has vascular dementia. We don’t have a formal diagnosis, I told the hospital this, they did a brain scan, which came back normal when I asked if they could diagnose dementia they said no she would have to go to a memory clinic as dementia can’t be seen in a brain scan. Any ideas ?

I’m the other way round. Brain scan shows “changes associated with dementia”, scored 100 on the short memory test, was nevertheless referred for the full testing which showed me functioning in the top decile. Doctor explained that dementia is defined by the impairment in functioning. So if an abnormal brain scan isn’t accompanied by impaired cognition, it’s not regarded as dementia.

MereDintofPandiculation. Aah thank you for that, it makes me wonder if they’ve even looked at the brain scan for dementia as it was done in A & E when she was complaining of a strange feeling in her head. SW still deciding if she needs a care home, and if she does which type, so I suppose someone will need to decide which one. have a meeting on Monday. 🤞

@Limetreee @MereDintofPandiculation my mum had a brain scan in September when there was a thought that she had had a stroke. I was told by the GP that the scan showed evidence of historical strokes and vascular dementia. From what Mere says I wonder if the changes and her other symptoms - cognition/language/lack of mobility - were put together to make the diagnosis. To my knowledge she has not had a memory assessment although she doesn't have the language to answer anyway.

Hello everyone, I’m a long-time lurker and occasional poster on these threads and always feel a bit embarrassed about posting, I don’t have anything like the challenges some of you are facing.

MIL (age 103) is back in hospital. She’s been in and out for the last few years with unexplained episodes of vomiting and diarrhoea. Hospital totally chaotic, don’t have access to any of her notes and for some reason keep telling us they don’t have BIL’s phone number even though DH and I have both given it to them in the last 48 hours. She’s had enough and just wants to die peacefully. DH was going to visit tomorrow but they rang up this morning (woke me up at 6.30) to say she’s very confused and anxious and doesn’t think her sons know she’s there. I’m hoping BIL can visit today, otherwise we’re going to have to cancel our lunch plans and go after church. I feel very bad about resenting that, but I’m afraid I do.

I feel very bad about resenting that, but I’m afraid I do. We understand

Thank you, MereDint

@NefretForth Mere is right. We've all felt like that at times.

@NefretForth with you too, always feel
that it might show that I am DiL not DD too… hope hospital gets their act together and your MiL is comfortable at least. 🤞

Another one nodding in sympathy. We get it. @NefretForth

Absolutely understand it @NefretForth.

Spent a small chunk of yesterday in A&E with DP's dad, and stayed overnight with DP at his mum's, though in fact his dad was brought home at midnight and we didn't have to go and get him.

Multiple strands of emotion, two of which are exasperation with Dp's dad for winding himself up so that he didn't wait for the very good Hospital at Home service but insisted on having a miserable time at A&E: plus a feeling of gloom that by falling for DP I've landed myself with a fourth set of fragile elders. I suppose I could refuse to get involved. Not sure how though...

Another strand being a sense of interest that dp has not yet made the switchover from the child role to the carer/parent role. His mum and dad still sound to him like the dominant, intelligent bolshy adults they always were. Which they are, but I don't think he really sees the new incredible fragility and the need to be a bit more proactive. The best example is that he's still asking his mum whether she wants him to bring the car round (answer, oh no I'll walk, in the cold and rain, stumble shiver) rather than just GOING to get the car. And because I'm a relatively new girlfriend rather than a stone faced longstanding wife, there's a limit to how much bossiness I can unleash. But I have said to him that next time do try to get his dad to wait for community services, or if not, for him to be the one that sits in A&E. But maybe dp is right and won't burn himself out the way so many of us do.

That sounds no fun, PermanentTemporary.

BIL got to the hospital yesterday so we managed to have our neighbours to lunch as planned. DH is going to go today, and apparently they might send her home tomorrow. More may become clear this morning. Or not - this is a hospital she hasn’t been in before and they really do seem to be struggling with admin, so we can’t rely on anything they tell us.

Oh phew @NefretForth at least you didn't have to tear up your Sunday completely. How long has your MIL been frail? My brain freezes at the thought of doing this for another 15 -20 years 😳

5 years and counting. I reckon she could easily go on for another 5, there's nothing fundamentally physically wrong. (Mentally is another thing, she has vascular dementia.) I'm already beginning to think through how we manage if there's a crisis in the middle of DD's GCSEs. I work full time, BIL works full time, DH works very part time so he can be around for DD. MIL is two hours from us, naturally somewhere with no public transport.

I too have brain freeze thinking about it. DH and BIL are not young themselves (I'm a bit younger but will need to work for a long time to come). It's so exhausting and there's no reward for anyone - it would be easier if MIL were happy, but she really isn't.

Round 2 if trying to convince mum to get a cleaner. Still failing. My tactic of leaving a bottle of harpic by the loo as a reminder didn't work - she just put it in the cupboard and it's still full. The loo, needless to say, is just a filthy as the last time I went up.
I refuse to give in and clean myself as

1. I hate doing my own cleaning let alone someone else's.
2. she can easily afford a cleaner. She gets a good pension from teaching and barely spends anything. Has £500-£600 spare each month.
3. it will only reinforce her belief that she is managing without as she'll forget that I did it not her. I'm a bad daughter aren't I.

DH reminded me yesterday that his maternal grandmother lived to over 100 and still had all her faculties and mobility and his mother is still going strong in her 80s and looks like she’s inherited her mothers longevity. Which is good for him but bad for the idea of having any nice Christmas for the foreseeable future. I do get on with my MIL but she is a terrible host as she would be first to admit and she refuses to travel to us and DH is an only and she has no other family so there’s no way he’d leave her on her own.

Meanwhile my DM is still on a downward slope to who knows where. Still at home with carers 4x a day and me visiting every weekend to do the shopping and check in on her. Yesterday she gave up eating halfway through her tea saying it was too tiring and asked me to feed her. That’s definitely a new one. If we get through this winter with her still living at home it will be either a miracle or a complete cock up.

God @countrygirl99 no you're not a bad daughter. Tell you what, ill make you feel a better daughter by having a rant.

I'm fed up with the elders today. Maybe I should take a mental break. Not one of them would think they should be able to mend their own cars, but somehow having a cleaner is giving in (unless of course it's their daughter). Pure sexism.

Off to see DM today. Tired of the whole bloody lot of them. Need to buy the Selfish Pig's Guide to Caring.

@PermanentTemporary you are so right. I often wonder if early alzheimers is the most difficult phase as mum is absolutely convinced she is fine and manages the house and admin perfectly well with no help. Meanwhile we are running round sorting out crises and making sure stuff that needs to happen does or it wouldn't.
DB1 does all her finances and has even been paying her paper bills since she got in a mess in January. But mum thinks she does it and he just "sticks his beak in from time to time". Mum hasn't paid the newsagent since November but is convinced she does every week. Ditto sorts her insurance (DB has sorted the last 2 renewals) but will then turn round and say she needs to change the mobility scooter insurance from dad's name to hers - DB did it straight after dad died January 2021 and it's been renewed twice since.
We are nearly 9 years into issues with our olds and there's just mum left now but she's 85 and her family tend to live to late 90s. It terrifies me. We've never had a good relationship. DB1 was the golden child and I was never the girly girl daughter she wanted. Much preferred football or building dens in the woods to dressing up or playing with dolls.