Cockroach Cafe - Autumn

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.

@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).

@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.

@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.

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.

@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.

@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.

@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.

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.

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.

@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.

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 😀

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.

<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.

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.

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....

'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).

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.

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.

Both my dps are within a half a mile of me and close family and I'd agree this can be really helpful but we find there is that expectation (that I think most of us find on here regardless of the distance long or short) that at the slightest issue you can drop everything and pop up/respond immediately. And that you will always be available for every appointment/meeting or checking diaries that second because you are only 3 mins away. If only life was that flexible!

At the moment I'm finding this mostly coming from the care team and not dps though.

Hello.
Thank you all for the warm welcome and wise words
it’s such a tricky decision.

@rookiemere Why does The Madness (in other people) always emerge at these times? I don't know why. It just does.

@BlueLegume so right about the "new baseline". Unfortunately. Looking at that now :/

@NeedMoreTinfoil yep it just double-dips on your time. Because trips aside, you're then that extra bit knackered and stressed, so the normal healthy habits wither away.

@Eclipsing oh I am always big on "mentioning" to HCPs/carers that we live in (place 2 counties away).

We have just "bought" a couple of days of freedom by sacrificing our afternoon and evening to travel down and visit ER in hospital. She was very weepy "I feel I've let you down". Like getting sick is a moral failing FFS. [FX: grinds teeth].

It transpired she'd got the lunch she'd ordered but hadn't eaten any of it, well that's not going to help with mood really. I tried not to bang my head on the wall and instead made her eat some of the snacks on her table.

The doctor apparently implied she might be booted out home tomorrow without any physio to get her walking again. Hospital discharge IME is weird and random and I was not going to wade into the reeds on that topic.

Luckily dinner arrived and I jollied her into polishing it all off 🏆.

I know she could still stay at home even if she can't walk (she has more than enough money to pay for any care needed fortunately).

If she wants to go into a home though it's blooming well going to be near me.!

I looked at her today and did have the, "this is no life" thought cross my mind. That if the hospital rang up tomorrow and said, "I'm very sorry, but...", maybe it wouldn't be the worst thing.
However I reckon there might be a couple more years of this and as you lot all know, you really can't tell.

My cousin, bless him, had sent her some photos and one of them was of a dinner table with WINE. I don't drink much at all but I definitely fancy some tonight.

Hi @EmpressaurusKitty there's marshmallows in the cupboard if you like them on your hot chocolate.

Hello.

Can I sit down with a hot chocolate and listen to the talk, please? My 77-year-old dad is in the process of being diagnosed with dementia. I’m not ready to talk about it in detail but I think I need to be here.

I agree with @EmotionalBlackmail. do think about it very carefully. Looking after elderly parents can literally be a full time job! I’m actually regretting not emigrating (like my brother did!😂). If you don’t work and are happy to be a full time carer that’s fine but if you have a job as well as your family it will become untenable.

Both me and my sister live about 45mins in opposite directions from our parents and there is often an expectation that we will take them to appointments which in actual fact would be a 10/ 15 minute taxi ride each way for them (which they can easily afford) But for us could take 3/4 hours out of our days and are now happening almost every week. We both have families, full time jobs and heaven forbid social lives! The more you do for them them the more they expect and it does them no favours in the long run because by doing nothing themselves they become more incapable.