🪳 Cockroach Café Spring 2024 🪳 🪳

[MereDintofPandiculation]

I’ve had a good clean of the place, replenished supplies, and brought in pots of snowdrops and daffodils to remind us Spring is just around the corner.

Come in when you want to share good news, or to rant, or just to hang out with others who understand what you're going through. The way MN works, hopefully this thread won’t appear in any featured lists, and the only people wandering in will be those who understand what it’s all about.

If you have a BIG question, it might be worth giving it its own thread, so as not to swamp this one.

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. My recent enquiries suggested more people wanted to keep the well known name than wanted to change it to something mor savoury, so for the moment it stays.

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!

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 💐

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.

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!

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.

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.

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’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.

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.

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. I sometimes think “I wonder what Dad will think about this?” Then realise that “Dad” doesn’t exist anymore. I wouldn’t say it’s repetitive dying though.

Now he’s bedbound, I marvel at what he can do. He can read the subtitles on the TV, if I say I km going at half past, and the clock says “16”, he knows we have 14 minutes left, he’s worked out how to find his mouth by finding his nose and moving downwards.

Maybe they didn’t think they’d be believed if they told the full story. Like when they told us we needed 5 portions of veg a day when the recommendation was nearer 10.

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.

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.

listened Radio 4 Bridging the Gap earlier today interviewing the SibStar founder, Jayne Sibley. Interesting idea coming from someone with experience of caring for parents with dementia. For those who like me hadn’t heard of it, it is a MasterCard app - sort of half way between taking over PWD bank account whilst allowing them access but with limits and alerts for family/caters with PoA. An interesting listen.

They were on Dragons Den recently. I didn’t quite get it.

It’s a bit like the bank accounts for children. It means PWD who has some capacity but actually wants to give day to day management if they’re affairs to PoA, keeps the ability to spend and take out cash but within limits. And each time they do their PoA gets am immediate alert. Helps prevent scams or confused spending bit allows some feeling of control. Too late for MiL but I could see it being great for my DPs in the future, they also are loving at adding this for adults with SEN.

I’m in a routine with DM now, it’s tiring and dominates my weekends but appears to be stable albeit on the knife edge for the moment (touching lots of wood). DB is back in the country for a couple of weeks but has decided not to visit mum, so no break for me. A separate rant there but I’ll let it go for the moment…

Separately my MIL, who has been in good health, spritely and independent, started vomiting over a month ago and is having great difficulty holding down food. GP has been sending her off for tests and X-rays and scans with nothing showing yet, but in the meantime she’s lost lots of weight and was only just about managing at home. DH has been supporting and visiting as much as a man with his own mental health difficulties can do from 300 miles away. Yesterday MILs friend visited, was alarmed at her change as she hadn’t seen her for a couple of months and called an ambulance. So DH is now back on the road for the third time in two weeks as she’s been taken to A&E because the paramedics said her blood pressure was low. He’s worried that at her age (early 80s), once she gets into hospital then she’ll start deconditioning and worries where that could lead. MIL was an only child, and DH is too, so he’s no one else to help and I’m not much use because I still need to visit my mum (thanks DB).

The one silver lining is that if she’s admitted to hospital the medics might get to the bottom of the problem quicker than the ineffective GP “one thing at a time” investigation. At least DH has learned loads from my experiences with mum and knows what questions to ask. And of course, I now have a new dimension to worry both about her, and also whether DH is coping with this all. He was supposed to be returning to work shortly, no idea where this is going to end up.

@Juneday thanks for sharing. Looks very worthwhile. Will be looking into it further!

@funnelfan sounds very difficult, and worrying for your DH and his poor DM. I can’t believe GP let this go on …. Dehydration often causes low BP so I imagine they will put her on IV fluids. I have what drs call an over sensitive vagus nerve and stomach issues lead to drastic drop in BP, multiple feinting and twice a trip to A&E as a result- from my experience they won’t let your MiL home without multiple tests, bloods, heart, BP, maybe more - 🤞 they find a cause and a solution. A night on IV fluids in itself should make a noticeable positive change.

I hope your DH is able to find the right people to ask questions.

Thanks @Juneday. It’s not looking good for MIL, as DH and I both privately feared it’s a cancer blocking her digestive system. She’s in intensive care, decision needed in the next day or two on whether to operate.

It’s so fast. Doctors told DH that if they do nothing she won’t last the week. I don’t know if it’s displaced grief but I’m very annoyed at her GP who’s allowed it to drift for so long now, over a month. I’ve no idea what all the urgent blood tests and scans and X-ray’s have been about if nothing has picked it up. If they’ve allowed her to become so weak that she’s not well enough for surgery then that’s a disgrace. But then if it’s that far gone/spread anyway, would it have made a difference. I don’t know, I’m here 300 miles away and DH is there. I’ve offered to go there but he says I’m helping more by keeping things ticking over here, I couldn’t do much and he’s not one for having someone holding his hand as a comfort thing.

bloody hell.

That's awful, @funnelfan . Your poor MIL and DH.
I don't know, we still kind of trust 'the system' to pick up things that could be cured or at least treated. And they aren't.

@funnelfan that's such sad news, so difficult for you and your DH - and your poor MIL who was doing everything those silly tv ads tell us about about seeing your GP if you have concerns, but has been let down by lackadaisical diagnosis somewhere a long the line.

@funnelfan a friend if ours had a similar thing. Diagnosed as IBS over a few months in her home country then flew to see us in the UK and was suddenly really ill, couldn't keep a thing down. Turned out she had bowel cancer causing a complete blockage. Emergency surgery removed the tumour and 10 years on she's fine. I always use her example to illustrate why you should have travel insurance as, although her hospital treatment was covered under EU reciprocal arrangements the repatriation cost was eye watering and would have been a real strain without it.

Not been on here in a while. Off to visit the DPs in their care home this morning. Both have alzheimers, dad's is more advanced. He's often asleep when we visit in the mornings as he can be agitated at night so they eventually give him lorazepam, then he sleeps all morning. With mum it's usually just the same conversation on a loop. Sibling and I visit twice a week each unless we're on holiday. They have such a limited life and dad often gets upset. Horrible.

Thanks - still waiting to hear how she is this morning. We’d assumed that she’d be sitting up in bed being rehydrated when DH got there yesterday. GP had been telling her all the tests to date were clear so she’d been thinking she’s had a bug and her stomach was somehow still irritated and that’s why she kept being sick. I’ve had a look at the calendar and it’s been going on six weeks!

DH had gone to her ward with some clean pj’s & toiletries, her book, her phone & charger etc. Bit of a shock when the ward told him she’d been moved to intensive care, and she wasn’t conscious. They hadn’t got round to ringing him yet to tell him.

MIL hasn’t been in hospital since having DH, she’s generally been in excellent health for a woman of her age and DH says she’d be terrified of surgery and/or chemo. He said the surgeon was also concerned about the pancreas and liver, so if they’re involved, well IANAD, but that doesn’t sound good to me.

sorry for blathering on. It’s the shock. All my focus has been on my mum, and I’m mentally prepared if she took a turn for the worse. We thought MIL was good for a few years yet, her own mother was going strong well into her 90s.