🪳 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.

@Nodancingshoes

cat 1 ambulance is sometimes cardiac arrest, fitting, person non responsive or not breathing, major arterial bleed which may bleed out. This is their fastest response time, I think the goal is 8 minutes but I'm not 100%

Cat 2 is also cardiac arrest, stroke, basically life threatening but not quite so much as cat 1. This is 18 min response time (except they often take much longer, I waited for an hour with my dad with a suspected heart attack..)

cat 3 everything else

so if your granny was conscious and breathing she would have been at category 3 as while horrible and painful her injuries were not immediately life threatening.

Absolutely understand. However I truly believe that had we not been extremely lucky with the off duty paramedic, she would have died on that floor. My friends grandmother spent 9 hours on the floor waiting for an ambulance and died within the hour of getting to hospital. From talking to the paramedic, many many calls are a waste of their precious time.

I absolutely agree @Nodancingshoes. For lots of elderlies lying on a cold floor is fatal, not because of the injury itself but because it causes further complications.
one of the reasons I'd never move from my house is because we are 1/4 mile of a very good A&E. the ambulance situation is terrifying.

It certainly is..😓
A nurse has been today and a doctor is calling any time now. The problem is, we've been here before and she has rallied and hasn't needed any extra care after a few days but I don't want to get caught out without arranging it! She is looking very frail and the nurse says she in heart failure but I'm aware that is not always a quick process.

@Nodancingshoes

My heart goes out to any elderly person having a fall in the areas where this is policy. You can see why they do it but it feels utterly heartless and not something that should happen in a civilised society.

FIL fell 3 years ago and was on a cold floor for 13 hours before the ambulance came. This was pre diagnosis, but looking back, we can see he was already confused, and that had contributed to the fall.

A year later, the dementia was advancing rapidly, and he was very poorly with what turned out to be pneumonia. An ambulance was called and again there was a 12 hour wait. He died before it came.

The family were clear that in many ways his death at that point was probably for the best - he died peacefully in his sleep, and was spared the inevitable move into a home and ongoing distress and confusion he was experiencing. But the fact that he experienced the same thing twice in a year was beyond belief.

BTW, I am feeling much calmer about MIL, and this forum has really helped me with clarity. She's waiting for her brain scan and has been referred to the memory clinic, and we are all pretty sure a diagnosis is imminent. However, we are now clear our strategy is to support her in her own home as long as possible, and then look for permanent residential care.

She has always said she wanted a swift end and is a member of dignitas. But it's quite clear that in reality, she has no interest in pursuing that and is, understandably, in deep denial about her memory issues. So there is no rush to sort that out, as it won't be happening.

We are also clear that it makes no sense at all to move her closer to us. She has am amazing support network where she is, is in a safe and well located house, and has good local facilities. Moving her would make us the sole carers and probably add to her confusion.

So as the strategy is basically support, watch and wait, there are no decisions to be made and I am somewhat at peace with it.

We are very clear that her life for now will be punctuated by a series of small dramas/disasters and at some point there is likely to be a game changer that changes the parameters. But she has a lot of good quality of life and some days when she is completely normal and upbeat, and we are just trying to focus on those.

I'm sure I'll be back asking for help again at some point though! Thanks everyone for your amazing expertise and support.

@BishyBarnyBee I'm glad things are clearer for you now amd I think you are making the right choices.
The doctors and district nurses are very much thinking nan is at 'end of life' now. She hasn't eaten for days although she is drinking a little bit. She wants to stay at home so we have increased her carers to 3 times a day and either me or my sister are going in once in the day and again late to put her to bed. We were, however, at this point a year ago and she rallied but who knows 😓 At this point, the kindest and most compassionate thing would be for her to fall asleep and never wake up. She has been begging to die which, as you can imagine, is heartbreaking. I always thought she would definitely get to her 100th birthday but, right now, I hope for her sake she won't.

So what do you do if your mum, who has alzheimers, needs to go to weekly falls prevention sessions in the next town. You don't live nearby and work full time and neither of the local taxi firms are taking on new regular commitments as they are so busy? It's an LA/NHS initiative and there is no transport available. Taxis are likely to cost approx £20 each way as it is.

Oh and golden balls brother who has access to her bank account has gone to ground and isn't communicating with other DB or me.

Ask the person who said she needs to go what the arrangements are for transport ?

First thing I asked. There aren't any. The sessions will benefit her but there is no transport help at all.

The transport thing is a nightmare. I posted yesterday (a question) about an elderly ex-neighbour/friend. She has been sent an outpatient appointment following her hip replacement, she can’t currently get out of the house unless on a stretcher/chair. Because she broke her shoulder in another fall a couple of months previously, she can’t get down the steps. She has rung the hospital and been told that if she cancels 2 appointments she’ll be discharged! Ludicrous, but she’s on to PALS now - she’s a formidable woman!

What does she do for other medical appointments?

In theory, one option might be to pay for carers who can take her out, and have them take her. Home Instead used to take FIL out for cafe trips, garden visits etc. Maybe they would take her. But it is more expensive than the taxis.

Does she have any friends who would be prepared to take her? It's a big ask, but MIL has people from church who take her places now she can't drive.

If none of that works, I guess you might have to say she can't go. If she has Alzheimer's, she might not retain much of it anyway.

But if she doesn't live near you, you work full time, and she doesn't have funds, you sound like you're at the point where you 3 will be deciding how much you are prepared to take on responsibility for her, what your personal boundaries will be, and whether it is possible to work as a team around her needs. The reality of NHS care now is that it isn't joined up, and people without family support/resources have to navigate the system as best they can. So they will get worse care than those who have someone to fight their corner. It's very, very tough, and when the penny drops how important family support is, it's quite a shock.

She has plenty of funds but the only one of us that can access them is golden balls and he is refusing to engage.
A while back I found someone prepared to take her places help with admin etc but again golden balls (who moved to the other end of the country after he took early retirement) doesn't think it's necessary.
He orders something online and he's made a massive effort, done so much etc. DB2 or I, who both work full time, take an afternoon off work, drive a 2 hour round trip to do DIY, take her to the GP etc and it's nothing. He's just a controlling prick on a power trip. He's always been the same. One off appointments DB2 or I can cover but this is weekly over an extended period.

Are there any of those volunteer driver services @countrygirl99 ? I know you’re probably looked but kinda clutching at straws here.. My DF sometimes uses those to get to hospital appointments, I forget what they’re called, but a Google might turn them up in her area? Or WVS or something like that?

Mum.has used them in the past but they are a bit iffy in terms of reliability - she got stranded at the dentist and had to phone a neighbour to collect her. I expect we will have to go down that route but I don't have the phone number. GB does but he isn't responding.

Do you think the appointments will be worth it? Is there someone who would come to her instead and do something similar? Maybe getting her there is too hard. Sometimes things just don’t work; there might be another way.

Do you think the appointments will be worth it? Is there someone who would come to her instead and do something similar? Maybe getting her there is too hard. Sometimes things just don’t work; there might be another way.

I think the appointments would be useful. It's balance exercises and stuff like that. She's had frequent falls but so far hasn't had worse than grazes and bruised pride. The falls have primarily been outside and it seems to be issues with coping with uneven ground, kerbs etc. She really struggled with the stairs when she stayed with us, really had to think about whete to put her feet. But generally she is very active and physically very well just needs a lot of support rather than care. Regularly walks a good distance to the butcher, post office etc. It's a group course and the OT who runs it told me that people often make friends and go for coffee afterwards do there's an additional benefit socially. Mum is a very social person and has been quite lonely since dad died so that's an additional benefit. It also covers a period the church lunch club that she loves doesn't run over the summer.
I think my biggest frustration is the way GB is blocking stuff that could work and just ignoring any attempts to communicate with him. Has got to the stage DH wondered whether he and SIL might have died in a car accident!

Dial a Ride?
Patient transport?
Contact local branch of Age U.K. and see if they have any suggestions?

Feedback to whoever organised it that there is no way to get her there?

And if Goldenballs is the one with POA start the process of reporting him to the OPG.

That won't change things overnight but would help in the longer term.

No patient transport for this scheme.
Age UK have no services in this part of the country above leaflets - I've spoken to them about a few things. Very different to the area PILs lived in where they were great.
Don't know what you mean by dial a ride but the local community volunteer driver scheme has previously left mum abandoned at the dentist 5 miles from home (no NHS dentist in her town). Her neighbour had to go and rescue her. Dad had a similar problem so don't think we can rely on them.

So far POA hasn't been activated but he is a 3rd party on mum's account.

Yes, that's dial-a-ride, the name varies depending on area.

That's probably your only choice? Did they have an explanation for why the return journey didn't happen? Miscommunication, no volunteer driver available etc? Could your mum have told them they weren't needed or something? If they fail to turn up to collect from an LA/NHS organised service then the people there would have to organise something to get her home?