Cockroach Cafe - Autumn

I have spent my adult life having to hold firm boundaries with DM. She always wanted to 'extend the treat'. 'Come for lunch' would become 'but I thought you would stay for dinner so I got XYZ in' accompanied by sad, wobbly voice.

@MysterOfwomanY it is no life. We are now 2 years in and I can see it dragging on forever.

Hospital discharge is its own mad world. The second a patient can shuffle their feet into a pair of carpet slippers they are being pushed out of the door. No real consideration as to what arrangements need to be made.

I am grumpy.

Had a largely unhelpful conversation with the doctor yesterday.
Me: My mum is still falling over, the falls clinic idea doesn't seem to have worked and she's getting lost etc.
Dr: Well ... She is 82 you know.
Me: I know that, that's why I'm worrying.
Dr: are you worried about dementia? If she had dementia she would be forgetting to eat. Oh well, I could refer to the frailty clinic.

I've also followed up the council falls team who don't answer their phone or call back when you leave them a message.

My mum seems to have decided that falling over is acceptable. I disagree, she's going to properly injure herself at some point.

'Forgeting to eat'! That's the dementia test is it?

GP is an idiot and sounds like they also consider falling over is acceptable. Being as how your DM's 82 and all.

Falls can very much be a sign of cognitive decline: not seeing things or processing what's seen, making poor decisions such as 'I'll run across the road'.

And you are absolutely right that falls result in serious injury with recovery stretching into months or never (as in my DM's case).

Can you get her to a different doctor? I got involved in a similar conversation with my dad, who had a sudden, dramatic loss of function over the course of about 6 months. His usual GP was like "you're 80, of course you're going to slow down."

It was only when he went to a locum who was also a runner who understood that "3 months ago I was running a 35 minute parkrun, now I can't walk the whole course" was worthy of further investigation. Turns out he has a serious, but very treatable condition (unrelated to age), and after finally getting the right medication and care, he's back to parkrun. Sometimes it needs a different perspective, I think....

DM's care home called an ambulance for her yesterday afternoon as she was very weak and incoherent. As I was driving to the hospital I got a call from her social worker who said (paraphrased) "I've just heard your mum is going in to hospital. If she's admitted then it'll be the hospital's job to sort out her future care needs, not mine. Sweet! Byeeee..."

Turns out that, as I suspected, she's got a UTI and is dehydrated. Feeling guilty that maybe I should have called an ambulance a few days ago rather than waiting for her GP to get back to me.

Annoyingly she's in a different hospital to the one she was in before so my painstakingly assembled collection of phone numbers and names for the hospital transfer of care team, OT, doctors etc is of no use and I'll have to start from scratch. Yay.

<raises hand>

I tried to keep her going as long as possible, which meant 6-weekly visits/days working from her house and a lot of wrangling to get her out of the house on time.

I considered stopping when she couldn’t do the eye test part of the check up as she couldn’t name letters but the lovely doctor said they’d go on the scan alone to decide whether to inject that visit. But then she got to the point she couldn’t even manage the scan. She spent all day in bed watching the telly and had given up reading for a couple of years. I thought the benefit/hassle ratio tipped enough to stop.

i would also say that although the eye care was great, the clinic was terrible at dealing with someone with cognitive issues, which didn’t help. The technicians doing the eye tests were impatient with mum and admin kept ringing her instead of me to change appointment times with the predictable chaos that caused. Frustrating. When we got to see the actual doctors they were much more understanding but that didn’t seem to spread to the rest of the team.

Also to add, mum was also someone who “didn’t want to get dependent” on paracetamol. I think it must be a generational thing, perhaps seeing painkillers as a moral failure to deal with pain. Once she was on lots of other prescribed medication I think that resistance lessened but she still only took them when the pain was “really bad” rather than regularly as recommended by the GP.

Oh, and yes she didn’t see a problem with falling over lots as she could “always get myself up again”. Until she couldn’t and the carers found her on the floor covered in blood. Thankfully only a nose bleed and nothing broken and it precipitated the move to her care home, so it worked out ok in the end for her. But I was anlways anticipating something with a worse outcome.

The GP dismissal you all have experienced - we had "well you ARE getting older, you have to expect some sort of decline" - sounds like the NHS is trying to avoid dealing with all but the worst cases. I'll just have to get mum back to the GP, or to a local very nice private GP, when things slide again. (I had to use a private GP when I had tried to see my NHS GP unsuccessfully for 9 months but that's another story).

I'm trying to enforce some boundaries but it's a real slog. The problem is I have been giving my mum a lot of extra support since March because this was originally diagnosed as a temporary illness. The kind of "let's just get through this and I will then get my life back" approach. Now it's clearly not only worse but permanent I am trying to extricate myself a bit and get her to accept appropriate support from outside parties but she is not happy.

@GnomeDePlume my MIL was always inviting us to lunch but then trying to extend it through the evening or even a whole weekend. Or if we went anywhere with her - we were inevitably driving her -she would be the last person to leave, utterly oblivious to the host / venue trying to usher people out, often for some hours. We called it "Event Escalation".

Gah, I am totally burned out. It's not just this year but over last 6.5 years either my parents or MIL have needed varying degrees of extra support. I am desperate to spend some time on stuff around the house and garden and just have some sort of life. I'm still in bed, still with the aftermath of the pesky cold/cough and as you can all tell, feeling very whiney.....I shall have to have words with myself and get cracking 😀

@NeedMoreTinfoil it's that boiling frog thing.

We were 'fortunate' in that DM's decline was so sudden. Independent-ish - fall - extended hospital stay (dominos falling) - care home.

I'm glad that DM's decline is now so total. She seems to have moved past the rages and tantrums which made visiting her so stressful. Never knowing when a change of mood was going to result in anger and tearful pleading to be taken home. Except that the home she wanted to go back to was her childhood one and her long dead parents were waiting for her.

Now if DM decides she is 'going home' the worst she can do is slide out of bed onto a crash mat.

It’s tough, isn’t it @GnomeDePlume

ive had to keep reminding myself that they ‘home’ they soo do wanted to go back to was all tied up with their memories of happier days when they were much more independent, rather than an absolute physical location.

My mum is fond of minimising the potential both of falling and of doing herself harm.

She broke her wrist (dominant hand OF COURSE) about 3 years ago - she took the dogs out for a walk on the ice. Like you should, as an osteoporotic 90 year old. I subsequently got cross with her when she let slip she was climbing up the stepladder to reach things. She rarely listens to a word I say so sometimes, if it's important, I'll lay it on really thick; so I told her (truthfully) that if she fell off the stepladder she stood a good chance of breaking her hip. That would mean hospital whether she liked it or not; and at her age; up to 50% of 90 year olds are dead within a year of breaking their hip, and of those that survive, a MINORITY return to independent living in their own home.

Either this got through, or she just doesn't confess stepladder usage to me any more!

@NeedMoreTinfoil , if you have to pay to see a HCP privately, how about considering seeing a Care of the Elderly physician rather than a GP? Go to the top and see the specialist.

@funnelfan Thanks for sharing your experience. Mum's currently starting to be less able to do the eye test part of the appointment- she can do most of it but can't reliably remember the names of all the letters so sometime says odd things in place of letters, and struggles with the instructions. She struggles a bit with the scan- mainly with understanding the instructions of how to sit etc. The clinic is usually busy too, which means lots of noise in the background from other people talking and limited space which doesn't make things easier for her to manage.

We currently manage because I explain this to the staff and know how to help guide her on what to do. All of the information about appointments is sent to me so that's not an issue but each appointment usually means a full day out of work for me- we're often at the hospital for quite a while and there's also a lot of 'wrangling' as you mentioned, in getting her prepared/ready/out etc. Brother will be looking after all her healthcare now and I don't have any confidence that he will keep up with this. I will try to advise but who knows if he will listen.

@NeedMoreTinfoil I think most of us recognise the boiling a frog escalation of demand on our time. You start by dropping everything to get them through a crisis then there are additional crises and longer term needs but they/HCP etc won't accept that you can't do the same indefinitely.

The 'I want to go home' thing is very difficult to deal with. Many of the current tension with me/DM/Brother are because Mum is adamant that she just wants to be in her own home with her own family and doesn't need anything else. Brother has taken this on face value, and is of the opinion that we must do what she wants (plus I suspect has his own agenda, but even if he doesn't this is unrealistic). I can see that what she really means is that she wants things to be familiar and feel safe. The home and family she wants doesn't exist any more. She wants to go back to having a constant companion at home like she had with DF, and not to need anything more than that.

@Eclipsing one of my mate's DF is 100 and still living in his own home 👍- the local dog walkers all have his sons' numbers, as a footpath passes along the end of his back garden. So they can grass him up: "your Dad's got the ladder out again..."

Re falls, I know of THREE cases of elderly parents falling where drunk was definitely involved. I kind of get, "I'm 85, everything hurts, nothing works, I want a sherry of an evening," but after a point it's counterproductive.

@Eclipsing Yes that is a good idea too. I thought of the private GP as DM likes her and is probably more likely to agree to see nice GP than head off to a random medic selected by daughter. I shall give it some thought.

After my whingeing this morning I had a nice bath, a haircut, a brief foray into Tesco for some bits for DH, finally got the painkillers I wanted in Boots (can't take my normal migraine meds with Wegovy) and had an amble around Lidl. Which of course meant pastel de nata for us both, which I have just washed down with the best cup of tea my DH has ever made me. Life is looking better!

Thank you for all your useful suggestions and for putting up with my moaning. I have a tray of virtual pastel de nata for everyone in the cafe.

We have progress!
A referral to the frailty clinic at the GP has been made for a couple of weeks.
Even if my mum did try to get out of it by saying that her taxi (me) would be in the office that day🙄
Nope, this taxi service has an understanding boss and can work from home when I need to.

I've seen her fall backwards... She's going to whack her head on something if we don't sort this out.

She seems far to willing to hand all the responsibilities to me to sort it out. Which is worrying in itsself.

@bigdogpaws my mum had age related macular degeneration for many years and must have had c50 injections. When my dad was alive he (or both if us if I were visiting) would take her for the 6-8 weekly checks. One of her eyes’ vision was so bad they stopped treating that eye but she would almost always have an injection into the good eye. She was always completely back to her normal routine the day after the injection though. When my dad died, mum was 90 and had to move into a care home due to her dementia. She never remembered dad had died as she couldn’t retain the knowledge but she could just about do the eye tests still as she knew the alphabet. But having sat outside the room while she was being given the injection and hearing her distress I decided that it was becoming cruel to treat her as she didn’t seem clear what was going to happen. I spoke to the consultants secretary a couple of times about the likely progression - she got her info from the consultant - and then asked them to take her off the list of patients.

At the time she was removed from the list she had already stopped reading and watching tv. She lived another 2.5 years and in that time was still able to see well enough to eat and walk independently although she became very frail so didn’t walk much unescorted. She also seemed to see people’s faces enough to say sometimes personal comments about them and that was with only one reasonably functioning eye!

I think if she can tolerate both the tests and the treatment it might be worth continuing the appointments but my mum’s vision didn’t seem to deteriorate much after the appointments were stopped.

@Choux Thank you. That's interesting. Mum doesn't seem to be distressed when she has the injections (currently)- in fact they always tell her how well she's done and she's quite child like now so usually comes out of the injection room with a smile, telling me how happy everyone is with her. What she really struggles with is processing instructions about what to do/how to sit etc with the scans and processing the letters on the eye test. If/when someone else takes her I'm not sure they'll have the patience to guide her as I have learned to. But from what everyone's said here I think I need to strongly encourage her to keep it up whilst it's not distressing her.
She doesn't read at all now (she has tried very large print books but makes excuses why they are not quite right, so I think actually it's the processing of the words that she can't manage) but watches TV sometimes and can just about use her phone to make and answer calls. My main concern is that if her vision gets worse she'll find it harder to get dressed, eat and walk safely which would take away the small amount of independence that she still has. I know visually impaired people without dementia navigate those challenges all the time, but with the dementia as well she's not able to learn new ways to manage or how to use tools to help. It's a horrible combination of issues (although I know the 2 are linked)- we've tried things like voice activated phone/audio, and audio books etc but she can't 'find' the right trigger words for voice activated devices and even on a basic CD player she struggles to process how to make it play.

@MittensTheKittens I hope the referral helps. Was your DM previously the sort of person who wanted someone else to sort everything out and/or would try to make excuses to avoid medical appointments? My DM started to just hand over all responsibility when she was in the early stages of dementia and trying to cover it up, and she also started to claim to be 'too busy' for appointments. Looking back I think she was worried about being 'found out' so if she just said 'my daughter will deal with it' no one would realise she couldn't understand, and she feared that HCP would spot what was happening. She's previously hated the idea of anyone else being in control so that was a big change, and she previously (and again now) rather liked medical appointments. Your GP's comment about not being dementia because she doesn't forget to eat is rubbish. I'm not saying it necessarily is an issue for you, but I think it would be helpful to keep the possibility in mind. I found with DM that once she was properly assessed it made sense of a lot of things and we've been signposted to a lot of local services to help (none that she has agreed to access yet, but that's a different matter).

Re eye tests, my DF kept doing very badly on the peripheral vision test where you press a button when you see a wee light. The optician kept calling him back to do it again - which was completely pointless as his dementia meant he had no idea what he was doing and either didn’t click the thing or just clicked it at random. I suspect part of the issue was that DF had no insight into his dementia and DM was deep in denial! His last eye test was done at home and I think at that point the optician realised the problem - no doubt helped by the whiteboard in front of DF’s chair with info such as “This is home. You are at home” written on it.

Connected to the eye test issue- I've found it very frustrating that DM sees so many HCP and attends so many clinics for her various physical health issues but each seems to be treated as a stand alone issue. From speaking to the dementia nurse who saw DM at the start of her diagnosis I know that they are all interlinked with the dementia (either as something that contributed to developing dementia, as a symptom of dementia or exacerbated by dementia). But when it comes to treatment everything seems to be dealt with separately. So DM has hearing aids that she doesn't use because she won't put them in or out without me there, physio exercises that she doesn't do regularly because she struggles to process how (even immediately after being shown and helped) and very simple tools/aids to help with mobility and vision that she doesn't use because she can't process how. I know it doesn't help that she's still very good at pretending and telling each HCP what she thinks they want to hear, but I've found that even when I try to explain that she won't be able to do/use things people don't realise exactly how difficult even something very simple is to her.

That’s what my siblings & I are trying to decide.

Dad, who lives over 3 hours away from all of us, scored very low on a cognitive test a fortnight ago & almost definitely has dementia. He’s started to ask where Mum’s got to - she died a few years ago.

The GP has sorted out a twice daily carer from tomorrow to give him his tablets & meals, which is great, and we visit as much as we can, but it’s whether we see how this goes or find him a place in a home now. Somewhere central that we can all visit.

Mum had a cardiology referral after a few falls. The consultant wanted to do a 7 day heart monitor and a scan I explained she wouldn't cope with the monitor due to her Alzheimer's and they'd need to arrange the scan appointment via me. Consultant insisted the monitor went ahead so I did the 2 hour round trip to take her to the fitting and another 2 hour round trip to take her home. By the time we got home she'd forgotten where we'd been and by the time I got home she'd taken it off. When I went up the following week to collect it she'd forgotten it existed and got really upset and angry while I searched the house to find which random drawer it had been put in. After that they kept phoning mum instead of me to make the scan appointment, which she instantly forgot, and I only found out when I found the letter saying she'd been taken off the list for missing 3 appointments. Such a waste of scarce resources because of silo thinking.

@EmpressaurusKitty Having seen how DM's dementia has progressed, if I were in your position I would be looking at suitable residential care as soon as you can. Better to sort it out now, when he can manage with visiting carers whilst you choose the right place for him, than have to sort it out in a rush with less choice when a crisis inevitably happens.

Thanks @bigdogpaws, that’s more or less what we’re thinking & we do have a place in mind.

@countrygirl99 Yes, the waste of NHS resources is the other part of why this silo thinking doesn't work. What DM really needs is one HCP (or small team of HCP) who really understand dementia and can co-ordinate specialists as needed but with an overarching view of the big picture. I thought the dementia nurse she saw at first was going to be that person but actually where DM is the dementia care team only seem to deal with diagnosis then refer back to the GP. The GP just refers her to more and more clinics to deal with the individual physical issues, most of which don't make any difference because the real issue is in her brain