Cockroach cafe - summer

[GnomeDePlume]

A new thread.

This is a place where anyone dealing with elderly parents/relatives/friends can rant, vent, scream into the void.

There is no judgement just understanding, support and good advice.

thanks very much @Mumbles12
living with me was suggested but i am not sure it would suit either of us!
she was fine. lived on her own. i am near by, just half an hour.
issues with getting doctors appointments for urinary tract/chest infections. and these seemed to be more frequent.
she is very determined! . as i imagine most 91 year olds are.
after an illness in March this year she bounced back, albeit with a stick, was walking to her club every week, her charity shop was on hold until the summer

I heard or read something the other day about the link between hearing loss and cognitive impairment. It was suggested that everyone over the age of 60 should get their hearing checked annually, and start using hearing aids even when the hearing loss is fairly minimal. There are two benefits to this - you adapt to using hearing aids, rather than suddenly having to use them where your hearing is really bad, which is a very abrupt and difficult adjustment to make, and that even minor hearing loss has a very negative impact on cognitive function as our brains are meant to process sounds.

Hello. I've just posted a long post ('Overwhelmed') about my aunt who has dementia and is alcohol dependent. Could do with a bit of advice from others going through similar. It's really tough. What I didn't say on my thread was that I'm also trying to care for my mum who has COPD and angina and is showing some signs of cognitive decline, although it could be normal ageing.

Welcome @TheRemainsOfTheDayCream that certainly sounds very challenging and hopefully you will find support here.

Up and down week last week for us - some good days, some not so good days. Multiple days of missed meds/wrong meds taken again, mainly in an evening despite every reminder system possible being in place which I think nails the answer of "do we need to get an evening carer in". Mind you even then there's no guarantee they will get taken as a few times there have been multiple verbal prompts needed even when sat next to them.

Also starting to notice a little bit of push back at times - questioning decisions they were actively involved in making but don't remember and a few accusations of being treated like a child and too much nagging (they aren't I promise! ). There often seems to be step missing in decision making and don't even ask about technology - if it's not one device that's been locked out of its another!

Onwards we go though.

I went and got hearing aids for that reason @Seeingadistance. All I have to do now is start wearing them.

F

Thank you for the welcome @Lzzyisgod.

It turns out that my aunt has been refusing to let the carers in. I hope I can use this as evidence that she needs care in a home instead (which is what she wants).

That’s a difficult one @TheRemainsOfTheDayCream (love your user name BTW). DM has a keysafe installed so the carers let themselves in. I guess she would have to give permission for that. We have a charity locally that makes adaptations like that to enable people to stay in their home. I think most councils have them.
But it does sound as if a care home is the best option so you may not want to go down that route.

She has a key safe, @BestIsWest, but she's locking the door on the inside!

Oh no! @TheRemainsOfTheDayCream. I’m not sure then!

@TheRemainsOfTheDayCream I've read your other thread, and it sounds like you really have a lot on your plate. I see you've mentioned your mum's cognitive decline as well as other health issues. Having been through similar with my own mum recently I would say if she is in agreement it's best to speak to her GP about concerns with cognitive ability sooner rather than later. There seems to be a very long wait from GP referral to being properly assessed - we waited over 6 months and it would have been longer if new symptoms had not meant the GP asked for it to be expedited. For some forms of dementia there are medications that had help slow the progress so I assume the sooner they are started the better. I've found that having a diagnosis has also opened up access to quite a bit of local support (eg. specific dementia day centres, social groups etc) if the elderly person is willing to accept it, which I think is more likely before the decline has gone too far.

Just to update on my own situation, over the weekend Mum and brother have been making a lot of comments about Mum possibly not wanting to go away with his family as planned (surprise, surprise). I have reiterated that I told them when they planned this that when they will be away I am exceptionally busy at work and absolutely cannot look after Mum and it is too late now to organise formal respite care as I suggested 6 months ago. So if she is not going with them they will need to find someone else to watch over her (she is adamant that she cannot be alone at night, which at least means they can't just go and pretend they think she's OK on her own). Who knows what will happen next. I would like to think that this might demonstrate to brother that she really does need to have some paid carers involved but unfortunately I don't think he will move on that unless/until there is a big crisis.

At a work event at the weekend I happened to bump in to a group of people I've know for ages but hadn't seen in a while. They were asking how I was and commented that they'd not seen me for ages and it would be lovely to meet up socially again soon. When I briefly explained how much of my time is taken up with Mum now, and the fact that Mum/brother will not consider paid carers they seemed genuinely horrified. If anything I had played down the situation and hadn't even mentioned the unpleasantness from brother. It was a bit of an eye opener to be honest- I think I have become so used to the increasing demands that sort of assumed people in real life would think me the unreasonable one for stepping away. It really is like boiling a frog, with a side note of being in an echo chamber surrounded by (mainly well meaning) family, friends, social workers etc who act as though it's perfectly normal and reasonable to expect you to 'just' do a little bit more all the time.

@bigdogpaws it's so easy to get swallowed up gradually into the situation and sometimes outsiders can help us see so much better

We had a big pow wow last night which I thought had gone well with agreement that having a regular carer was really helping and to advertise for a 2nd carer to cover the current uncovered days and as a back up. Woken up to an email from ddad saying that they totally disagree this morning and only will agree to pay a certain (unrealistic and tiny) sum for any carers. And absolutely none at a weekend (which is when almost all the crisises occur because there's no carer going in).

1 step forwards 3 steps back.

Edited for spelling mistakes

I'm so glad mum is in a care home now and I don't need to panic every time the phone rings. I'm going up for my first visit at the weekend. I was planning to go last Wednesday but it was too hot for a 4 hour round trip.

Been there got the T-shirt @Lzzyisgod. Don’t see it as a complete failure - you have laid out what care you think they need and your DF has chosen to push back. Had the same from my DF including a patronising line about being around for a long time and not rushing into snap decisions. If it’s any consolation ( it won’t be) they’ll agree to revisit the proposal when it’s long outweighed its usefulness and they’re onto the next stage.

What I wish I had done in this situation was - instead of redoubling my efforts and trying to break myself into two - to email back and say noted that’s your choice of course. I can visit once per week for x hours but am unable to support more than that because of job/DCs/my own life and sanity.
Love your DD ( not your chief bottle washer and sorter outer).
Then unfortunately you need to let the crisis unfold. It stinks but at least if they have some money once they finally cave the required help can be sourced quickly

I absolutely agree with Rookiemere. I'd acknowledge their choice but say I wouldn't be filling the gaps, and take three steps back.

Amen to care homes @countrygirl99DPs has the added bonus of being 5 minutes down the road. DM was asleep today- I popped in before and after chatting to DF but didn’t want to wake her up - so my entire visit took about 20 minutes including a chat with my favourite carer who happened to be on. It’s just such a relief from before when I could never relax and absolutely everything was taken up with what if DH and I get the telephone call ( inevitably we did) so it seemed pointless to book or look forward to anything. I was at an 80s orchestral concert with a friend at the weekend and was overcome by the fact I am now mostly content and happy, compared to this time last year where the shit storm was just starting to gather momentum.

@bigdogpawsyour DB is being so cruel particularly to your DM. One of my big regrets is not getting DM in a care home sooner when she could have had more time to adapt to her surroundings. Obviously not my fault that didn’t happen just as what’s happening now is definitely not yours. Do you think your DB is doing it on purpose so you have to pick up the pieces ? Or is he just wilfully ignorant. Or both possibly.

@Lzzyisgod That sounds horribly familiar. Mum's been staying with brother but getting increasingly distressed when she's alone for long periods of time (eg during the so I had persuaded her (on the back of a call with both of us and a local dementia support organisation) to 'think about' a paid carer to come in once a day to check on her and perhaps make her lunch/cup of tea/help her do her washing etc. This felt like quite an achievement as previously she's refused to even consider it. Brother (and therefore Mum) now say that weekends are unnecessary as 'no one' is at work then - missing the point that I actually often am working to make up for days spent with her in the week and he and his family often go out for the day (perfectly reasonable but does not help Mum). His (and therefore Mum's) suggestion is as she doesn't need personal care, just making a bit of lunch and a chat, there must be someone who would be glad to do it for just a bit of pocket money, say £50 a week. His rationale is that £10 to nip in and have a sandwich and a chat with an old woman is a great deal. Obviously missing the point that this is less than NMW, doesn't factor in travel/petrol and is time when someone can't be working elsewhere. Not to mention that fact that we need someone professional and reliable which is unlikely if it's a friend/neighbour doing it as a favour. Not to mention that none of us actually know of anyone in that fictional position of being a sensible, reliable, fit and well person who is available every week day for just an hour's work and happy to do it for next to nothing.
As @rookiemere says, I suspect that by the time they reconsider Mum will be well past the stage where this will make any difference. It's easier said than done but I am having to try to push back too and not just go running (or even make myself available on the end of the phone) every time. Unfortunately I think when people are so adamant that they don't want paid care they will only reconsider when there is a real crisis and the person they expect to fly in and make it all OK can't/won't come running.

@bigdogpaws I also think many elderly people are resistant to paid care because it does seem very expensive. Ironically if DPs had agreed to an appropriate level of paid care, it would have been half the price of their rather lacklustre care home because there is two of them. But then they still would have had house costs and I would have had to do all the administration and arranging.

I think it's a bit of both. His general approach to life has always been that he knows best and to refuse to actually properly think things through or listen to anyone else- then he expect someone else to be there to sort out he mess when things inevitably go wrong (this was usually out parents in the past). It is, of course, always someone else's fault that things have gone wrong or at least entirely unexpected/could have happened to anyone etc. So I think this is mainly an extension of the same mentality. Plus I can't help thinking that he sees paying for care as wasting money that should end up as his. I do think that to some extent he believes that if there is a crisis I will be forced to become mum's carer. I agree with you that ideally I would like to get mum settled in to residential care sooner rather than later so that we can do it slowly (starting with respite care etc) and she is in a better position to adapt than she will be further down the line. But I think Brother's idea is that as long as he and Mum refuse to consider professional care I won't be able to force them but will have to take responsibility for making sure mum's care needs are met if/when there is a crisis- which will mean doing it myself. So I am trying to plan for an early, smooth transition and Brother is pushing to delay in the hope that either things are magically OK or if they are not I will have to look after Mum and his inheritance is preserved. I agree that it's cruel. Mum denies it when we are speaking to social workers etc but he is not even keen on her going to day care sessions etc that have been suggested. I have to be careful because Mum gets very distressed at any suggestion of 'telling tales' about Brother and I don't want her to stop trusting me or the social care workers. In our last meeting they stressed how important it is for alzheimer's sufferers to have social interaction and I think I said enough for them to read between the lines without upsetting Mum. Of course, he's usually far too busy to attend these meetings but when he does he says all the right things and promises the moon on a stick.

My DB was very convinced that there was some sort of convalescent hospital that DM could be transferred to once she ran out of road at the general hospital.

I think he had got caught in some sort of 1930s fantasy. Nurses in crisp uniforms, hospital corners, doctors in white coats etc etc.

He was a bit miffed to find out that if we didnt sort it DM would be transferred to an assessment care home where ever in the county there was space. Him being able to get there by bus was not relevant.

He dislikes the care home DM is in but there isnt an alternative so he just grumbles away.

This hot weather has really taken its toll on DM. I havent been to see her since getting back from holiday but regular reports from DB indicate she has slid a bit further down the ramp.

My mum has slid down the ramp a bit too, although she is still behind yours @GnomeDePlume. She has been assigned a “special chair” in the lounge. She keeps sliding down a wheelchair and falling forward out of the standard high back armchairs. So she now has a rather nice looking leather recliner armchair where they have her in a half recline position surrounded by pillows. She looked particularly twisted and stiff and didn’t respond to me apart from to smile when I held her hand and talked to her directly.

The staff say on her good days she does say a few words and take notice of what’s going on around her so they feel there is benefit for her being in the lounge a few hours a day.

Eek. I'm back again.

I feel like I'm on the edge of a big crisis.
My mum fell over last week, she's uninjured.
However, they've picked up something in a blood test which requires further investigation and there were threats of her having to stay in over night for monitoring. She managed to convince them that she could go home and come back later in the week.

But, I've just had a weird moment with her...
Called her to confirm that I'll take her to the appointment at 8am. She repeated this back me and was slightly grumpy about the earliness.
10mins later she called me back to check the time.

There have been a couple of other instances where she hasn't followed a conversation fully.

The blood test result result, can cause confusion and I really hope that they get to the bottom of the issue.

I'm also going to have to step in during the appointment to mention this, when she says she's totally fine.

Eek! Argh! Eek!

Handhold @MittensTheKittens , you've got this. It is scary in the early days of cognitive decline when your loved one does things that are out of character like this. It was a hospital appointment that hit home for me - Mum used to attend 6-weekly appointments eye appointments for her macular degeneration. I arranged with my boss to WFH from her house, drove a hundred miles in rush hour traffic to get there for my first online meeting at 10am, got her washed, dressed and out the door and in the clinic only 5 minutes late for her 11am appointment, only to have them look at us and say - but your appointment is cancelled Mrs Fan, we rang to tell you this morning.

Which they did, mum admitted to receiving a call first thing but didn't understand it. My number was on her notes as primary contact, so I had a mild grumble at the clinic and got them to delete mums home number entirely so they had no choice but to call me not her and then took her home.

I must admit, while the eye care at that clinic was excellent, there was absolutely no cross-over for consideration of common co-morbidities of their mostly elderly patients. There was ONE high backed chair in the waiting room, hardly any room for walkers/wheelchairs and at least one member of staff was impatient with mum's shuffling and inability to answer the question.

my dm is due to be discharged after a week following a night on the floor, uti, chest infection,
bloods a bit of concern
however the package as suggested above thank you for that, is for 3 times a day for 3 weeks.
she now will have 2 zimmers,
how does 3 times a day work? up in the morning, lunch and to bed
what about her evening meal.
i have bought her ready meals for the microwave but can she manage those with a zimmer frame?
or do her carers make a sandwich for later, she doesnt like sandwiches she tells me, she likes toast

@funnelfan
Thanks for the reassurance.
We went to the hospital for the follow up today and it hasn't really made anything clearer.

But has confirmed that my mum is wobbly and slightly confused 😕

I think I've reached the mothering the mother stage.