🪳 Cockroach Café Spring 2024 🪳 🪳

I've just seen it. I'm not sure the person who came up with it has any actual experience with Alzheimer's. My Mum isn't dying when she forgets things- it's a really odd advert that doesn't explain what Alzheimer's is actually like to those who don't know.

If you don't have any connection with the disease I think you'd be unlikely to donate anyway. Those of us who know and therefore would be more likely to donate, know what it's actually like. A MUCH better advert would be practical advice for those of us caring - ie show someone responding the wrong way to something challenging, then receiving good advice and responding a different way.

Although I don't actually feel like Alzheimer's is there for me at all. They were no help with FIL and so far my only help from them was a 2 minute call telling me how to claim benefits.

I think what you have all shown is everyone’s experience is different, maybe dependent on their relationship before and expectations, not just how the PWD changes. I assume not everyone gets the angry nasty stage, and for some it is fleeting and others lasts longer. The dug the heels in and doesn’t want to admit to herding help seems another difficult but common side. I can already see that my DS with slightly different feelings towards parents will have emotionally different responses if dementia takes hold. Also I have and am still to an extent going through it with MiL having been her most constant helper and visitor for years, but with less emotional attachment than DH.

I wouldn’t say dying over and over, it is more parts of the brain fading but with no warning or predictable order, a plateau then another big dive and occasionally an unexpected spark of the old them I have seen sections of the ad and agree it is a little sanitised. But if it gets attention and extra donations it has to be a good thing.

The advert is obviously designed to be emotionally loaded to get us all talking about it. I’m just not comfortable with the idea of dementia as repetitive dying.
My experience with DF was of a series of ‘versions’, like when your phone software upgrades. Some versions were awful (v2.0 gets the wrong words and is very frustrated) but others were surprisingly better (v7.3 now likes to eat sweet things and is thrilled by a jam sandwich). I loved all the versions of him so that helped.

Has anyone seen the Alzheimer's campaign video 'the Long goodbye'?

I’ve caught glimpses of it when I’ve walked in the room when it’s in the TV but I’ve not been able to watch it all the way through. Like the other advert showing the chap gradually not being able to make a cup of tea but the nice nurse visits and makes everyone feel ok. Maybe they’re meant to raise awareness for people who have no experience, but they provoke a ball of incoherent emotion in me. Mainly that I find them sanitised and twee and nothing like the lived reality for either patients or carers.

MIL had a stroke that left her paralysed and non verbal. In addition her personality changed completely. DH always said it felt like his mum had died and a stranger was living in her broken body.

Has anyone seen the Alzheimer's campaign video 'the Long goodbye'? I feel like I understand what they're getting at but don't think they've pitched it right. On the other hand, it does seem to have got everyone talking, so I guess that's a win for them. My feeling is that what they're getting at is the loss that you experience again and again when you realise your parent isn't a parent anymore. I wouldn't say my mum has died over and over though. It's entirely me and how I feel about the switch from having a parent to being her guardian i'm watching her lose her capability bit by bit.

DB once asked me who we’re keeping mum alive for. I can’t answer that. I don’t want to lose my mum, but I lost the mum I had a while back to dementia. Just a shell/ghost now, a frail old lady that looks a bit like my grandma. The worst is no longer the worst thing that could happen.

Thank you @FiniteSagacity. I’m sorry to hear about your DF’s recent hospital stay and sincerely hope the solution does work for both of you. Your comment about the worst also possibly being a release is one that often sits in my head as I mull over the events of the last year. Not something I ever imagined thinking, but it’s amazing where ongoing stress can lead your thought processes!

I have a couple of friends who've got similar help on a non-agency basis through care.com. As freelancers they don't necessarily have all the care training, but it's a cheaper and often more flexible option if only shopping-and-a-chat type help is needed.

Welcome @Earlydarkdays 🫖☕️

This group has been a great support to me and like you, I had a hard year last year and am wondering if I have any more gas left in my tank for DF (also mid 70s).

I’m constantly doing admin for DF, travelling miles to visit, wondering if I’ve neglected my children (and DH) too much already, mulling over whether the solution we’ve fought the system for and cobbled together is actually going to work for DF. Also, after a spate of incidents and a recent hospital stay, wondering daily if I’ll get a call to say DF is going back in to hospital (which he hated) or worse (although death would release both of us from a pretty miserable existence).

I’m sure you’re in the right safe space to share your worries and the impact this is all having on you 💐

Hello all, can I dip my toe in and join you?

Parents in mid 70s, Mum has a mood disorder that caused her to be sectioned last year. Showing signs of illness again now. I’m an only child with young children of my own. Limited physical care required so far but huge emotional support needed, even more so when she is unwell.

Already on my knees after last year. Not sure how to survive another round of this!

On the point of private Carer’s who will visit, take out, chat, or sink it do a shop and heat up a meal, a friend who is arguably over qualified has recently taken on a couple of elderly clients to do just this work through an agency. She had previous high level medical training but had lots of extra training, tesrs annd work shadowing with all the usual safeguarding etc. She is impressed with the training and has just started with her first clients. The agency charge around £30 an hour, not cheap of course, the ‘workers’ clearly don’t get that. But it is something I have in the back of my mind for when DPs need more help. Also we have a local charity that provides similar - free. I know at first many will be reluctant and for some the cost is too high, but worth a thought, especially if it gives family a break.

It's really hard to strike a balance. Six months down the line from MIL's death, we're spending at least as much time supporting FIL as we did visiting and managing MIL. We were at his house four or five times last week. I haven't seen any of my own friends or family since before Christmas.
It's not that I don't get time to myself. Here I am, fannying about on MN. But what with FIL, and DH's health and work issues, and the DC, I'm running out of capacity to arrange anything more complex for my own wellbeing than hiding under a blanket.

You are absolutely right, unfortunately my social network is no more and I do need to work on finding new things to do.
DM is deaf and also manages to blank out things that upset her so I’m needed in medical appointments to explain problems etc. We have often wondered why she does it and what happened in the past. Recently, as she is looking back at her life, somethings are coming out that point to a childhood that wasn’t as idyllic as she painted and seemed more like the one her sister said, unkindness and criticism.

Echo @MereDintofPandiculation @Okitsme you deserve your time and your dm may be around for many years- I supported dm for 17.
and your dm isn’t independent- you are providing the “ invisible mending” that keeps her “ independent” What if you were struck down temporarily? Or went on holiday?
look up FOG- fear, obligation, guilt. And start introducing some other support for your dm. There are private carers around who would take her out for coffee/ shopping etc.
and maintain/ invest time in YOUR networks as dint says.

Another day, another hospital trip, another department. Today it is possible skin cancer. DM has been signed off from the neurological and vascular departments and is gradually coming off steroids, which should help the vascular eczema as she became quite bloated but her GP put her on the two week pathway having seen a spot by chance. Blood tests results mean that an echocardiogram and seeing a heart specialist is also in the near future.
Unlike so many on this thread she is still very independent and I live five minutes away but, and I feel so guilty writing this, my life is spent either doing things for her or feeling terrible for not doing things for her! She is 87, hates having to accept that her body is giving up and I am often the only person she sees in a day.
My life is now so limited, I see her, my DH, and people in shops! I find I am forgetting words - like cardiologist! Post COVID fog, stress or dementia? I’m 65 and, for the first time, feel my age and my mortality.

Thanks, both. It's mainly the heart side that's a concern- but bonus possibility it might reduce the chance of delirium rather than a direct effect on the dementia. Wasn't sure if they'd try it on someone who might forget part way through that he's having an op. Will try to set up a chat with the anaesthetist.

@NoBinturongsHereMate I wasn’t aware of risks of GA directly linked to increase dementia but dementia specialist told DH any trauma could exacerbate it. MiL went downhill after fall and surgery GA, surgery wasn’t successful so the surgeon and anaesthetist strongly recommended spinal for second op. Hard to say if this was less traumatic, MiL has no memory of it. The difference in her cognition before and after the fall is huge, but we will never be sure what caused the fall and whether that trauma caused more issues than GA. Logically I would say GA has more potential to exacerbate things than a spinal - and recovery from spinal is believed to be quicker with less side effects. The anaesthetist is the person to speak to if you can.

@FiveFoxes we bought a dementia clock, lots online, but MiL was quite advanced by then and couldn’t remember how to use the phone, and told BiL she didn’t like the clock so ge had to unplug it. One afternoon MiL direct dailled DH’s mobile 17 times when he was at work and travelling home.! He spoke to her a few times and others she left VM or hung up. He went round and she had no recollection of phoning him.

i feel there should be a way with clever tech and/or Alexa, but maybe not quite there yet….

My Mum called me to tell me nothing and woke me up in the early morning.. Again. Does anyone have any recommendations of a way to stop her doing this for no reason whilst encouraging her to do it if it's vitally important

@FiveFoxes if you find something, let me know. I’ve had to accept the off hours calls as part and parcel of the whole thing. Mum can only make outgoing calls on the phone downstairs now, she can’t work out how to operate the one next to her bed (she’s had that design for 25+ years). The ones in the middle of the night telling me the heating wasn’t working because the radiators were cold were memorable. As she has carer calls 4 times a day I know she’s never more than a few hours from a welfare check, which helps my peace of mine enormously as I live 100 miles away.

I wonder if I’ll ever get used to the phone buzzing without jumping/heart sinking. I actually got one early this morning from mums carer instead, she’s not quite right this morning and the carer wanted to know if she was like this yesterday (she knows I visit on Sundays).

I've put a great team in place for her but unfortunately, I appear to be the manager! They check in with me all the time so even if I don't need to do anything, it takes my headspace. This weekend, her PA was clearing the spare room for a homesharer but it's obviously not her stuff and lots of it is my Dad's so she wanted me to say what could go. There is a lot of non-critical stuff though so you are all right that I should start thinking whether it's critical for her safety and welfare. The trust has been an absolute nightmare but the company has been dreadful so I think they will voluntarily step down so I can appoint someone who will be helpful! I've been dealing with them for 15 months now and you would not believe the incompetence!

@NoBinturongsHereMate I didn't know anything about GA causing an increase in dementia symptoms. I had a guilty panic after reading your post as Mum had GA last year. I have googled and Alzheimer's Society says there probably isn't an increase in risk. They don't say anything about spinal blocks: www.alzheimers.org.uk/about-dementia/managing-the-risk-of-dementia/possible-risks-of-dementia/general-anaesthetic

My Mum called me to tell me nothing and woke me up in the early morning.. Again. Does anyone have any recommendations of a way to stop her doing this for no reason whilst encouraging her to do it if it's vitally important? I have seen GroClocks recommended. We used them when my children were small but they seem to have changed the design since then and made it less clear (apart from the colour). Any other ideas?

Do any of you have an idea of the isedulness/feasibility of spinal block instead of general anaesthetic for surgery in someone with dementia?

I know it should be easier on the heart, but does it reduce cognitive risks at all?