Cockroach cafe - Spring in autumn

[GnomeDePlume]

A new thread for those of us dealing with elderly family members. All welcome.

A place to rant, discuss, vent, decompress. No judgement just solidarity.

@PermanentTemporary being pragmatic I think the purpose was to work out how to manage DM's end of life. At the moment DM isnt in pain but that could change.

As I understand it at end of life the CH are able to hold a number of prescription medications on a 'just in case' basis.

We seemed to have moved to a new stage with DM. Up until now I wasn’t totally sure she actually had dementia as despite being bed bound and more or less unable to speak, she seemed a bit more with it than DF. But now she has become fixated on tasks that I must do for them right now - despite them not being urgent and the relevant people not being available at the weekend- and has started a campaign of texting and phoning about this very non urgent matter ( a subscription to the Daily Telegraph not due until February). I tried copilot’s technique of being vaguely reassuring and saying not to worry and it was on my list, but instead she has come back demanding to know what else is ON THE LIST. I am trying to remember that my actual DM was not demanding like this, but it feels like at each stage I have to mourn her all over again.

DH is going up there today - wasn’t planned. I am so over all of it. I have panic attacks before I go in and I am terrified to go on my own in case I find DF in his own excrement since DM told me he doesn’t remember to go to the toilet.

I had a proper conversation last night with DH about care homes, but we both agreed DF would likely refuse to stay in one and the upheaval of getting them in is high. He still naively believes that some of this is sortable and that working through the Sisyphean list is possible and will bring relief once completed, oh and more visits will bank up credits so we can go on holiday without worrying, rather than them just getting used to a level of increased services from their admin helpers.

I wish I had found this thread a few years ago. I’ll read back and then come back to offload if I may?

Sitting here waiting to discuss mum’s Respect form with her GP. They left me a message last week to say they needed to speak to me about it after numerous calls from an unknown number which was apparently them (I don’t answer those calls, they are usually spam). Why they couldn’t leave a message before is beyond me. I had to google the form as had no idea what it was.

Argh, I’m offloading already...

@rookiemere The urgent/non-urgent tasks sound very familiar. My DM now tends to put off discussing anything that is actually important but will fixate on something unimportant and insist that it must be done NOW, regardless of the day or time or what ever else I may need to do, and I am letting her down by not having done it already. Like you, I think it's a symptom of her dementia as it's not what she would have done a few years ago.
Unfortunately I've also tried making a list of tasks I need to do for her and visiting more frequently for a while in the hope that I can get through them and have some time off. But all that seems to happen is the list gets longer and she/B convince themselves that I clearly have unlimited spare time so complain when I can't/won't keep up the same level of visits etc permanently. Hopefully less of an issue for you if you don't have a sibling adding to the problems but with the benefit of hindsight I realise it's been a mistake to ever do more than I am prepared to do long term; they don't think 'Ah, teaandbigticks has spent loads of time getting on top of things over the last few months so now that's done she can have a well earned break', they think 'Teaandbigsticks has been here loads so she can obviously take as much time off work as she likes (does she even have to work?) and can't really have anything else to do. Why is she swanning off now when we obviously still need her.'

Its the marathon bit which is getting to me. Siblings (both moved many thousands of miles away) are both convinced DM will drop dead soon so keeping talking about saying goodbye and nursing home care. None of that is even vaguely likely as shes 75 and mostly independent with some carer visits. A home wouldn't take her.
They have no clue of what's ahead and I am the bad one for not enforcing their wishes. Not that they are offering to pay for anything or deal with the admin of anything of course.

I do feel for those of you still trying to manage elderly relatives at home. It must be hell on a stick. At least I can walk away from the CH knowing that DM is being looked after.

Thanks @teaandbigsticks it’s good to know I am not alone, although sad for both of us. Sadly DH still thinks the more he goes up ( an hour each way) the more he can prevent any issues happening so the two of us can go on holiday, whereas I am now minded to take a huge step back and let the chips fall.

I spent this morning ringing up all their banks and building societies to do an audit on their finances ( didn’t have time to phone the Telegraph subscription line !) The upshot is they have loads. Enough for both of them to go into a care home for 4 years without touching their main or rental property. I do wish they had just enjoyed the money. But I hope both of them will reach a point where they agree to go into residential care soon, which does require more things to go wrong as I know even if DF agreed to go in now, he would take himself out quickly enough.

DM phoned again this morning. I can’t really understand her anymore. I told her DH was going up today and that pleased her, but of course we can’t go up every day. It’s so hard in the thick of it to remember that she/he is unable to process the fact we have independent lives that we would quite like to live and if something is wrong on their shopping list, they have about 5 more of each item in the freezer.

Just popping in to welcome the new posters and because I don’t know whether to laugh or cry. FIL has dementia, DH (only child) and I agree should be in care home, MIL adamant she can manage. They live 200 miles away. DH arranged to visit from Wednesday to Friday as dementia nurse and another professional (we have no idea who) is due to visit on Friday.

MIL asked him to go next week instead as she is having her hair done on Thursday afternoon so no point him being there. It’s a mobile hairdresser who comes to the house and it can’t take more than an hour.

MIL said she will ask dementia nurse to call while she is there so DH can speak to her over the phone. So fed up of her thinking we can just change plans at the last minute like this. DH is sticking to going this week.

Yes, I’m so grateful to have reached that stage relatively quickly, with only several years of managing DM at her home, albeit 2 hours away.

phone call this morning, mum had (another) fall at her care home, only this time she banged her head enough to get a cut and bleed. “Do you agree for us to call an ambulance” was met with a “no” from me. She seems fine to them and she’s stopped bleeding. She’s on blood thinners for stroke risk and of course they’re worried about a bleed on the brain. But as far as I’m concerned she’s for palliative care only so I’d rather she didn’t have to hang around a&e.

(She keeps falling/slipping because she forgets that she has no strength in her legs any more so tries to get herself up from a chair and goes before the carers can catch her, even though they have the clip alarms and shout at her from across the room to stay put.)

@teaandbigsticks and @rookiemere my DF does this too, phones incessantly about small tasks that he deems should be done right now. He was barking orders again at DH last night. I think it is a way of still feeling in control of his life and the more his mind is going the more the need to control tightens as it is his way of knowing what is happening. He phones everyday asking what is going on.

@rookiemere it does sound like you are in a letting the chips fall stage, you can't keep dropping everything and rushing there when it doesn't solve the root of the issues. Hopefully your DH will realise that soon. I had to sit on my hands in the end with my DAunt and tell the neighbour to stop doing temporary fixes that they couldn't commit to long term as it was masking the problem so that social care felt could ignore the situation and DAunt's safety completely.

@Tupperwarelid I wonder whether your MIL doesn't want him there when the dementia nurse is there because she is worried that he will contradict any untruths about the reality of their situation that they tell them. She is likely scared of having to accept the massive change to her life of FIL going into a home, so will pretend she is coping. Good that he is going anyway.

Gosh I can so relate to some of these posts. I do think we are at the beginning of this journey and know it’s only going to get worse but the fixating on trivial stuff that needs fixing NOW rather than the important things as well as the constant made up words used to describe objects which MIL thinks are correct is testing DH and I.

@Choconuttolata we think that is very much the issue. He was always very domineering in their relationship, tight with money, very routine driven and we think she actually likes being in charge now and would be very lonely if she was in their massive house by herself.

We’ve suggested overnight careers so she can get proper sleep, her moving into a retirement complex so she has company and assistance if she needs it if he goes into a home but she won’t even consider any of it. Guess we are waiting for a crisis to force the situation.

@turkeyboots 75 is a bit young for your siblings to be rolling out the crocodile tears. Maybe get a few stock phrases so they know they can’t expect you to do their bidding, although I would be tempted for them to be rude ones.
I bet they tell all their local friends how dreadfully worried they are about their elderly DM and how they wished they lived closer.

On a recent trip the organiser - who lives full time abroad- said she had been there herself with her elderly DM as we were very last minute to finalise due to DPs - but I reckoned her Dsis who actually lived in the same country as her DM might be closer to the actual work.

@rookiemere have you started your new job yet?

Sadly the time has now come to unlurk on this board. DM (82) has Alzheimer’s – diagnosed five years ago, but 15 years of slow decline, now needing prompting to do everyday tasks like dressing etc. Doesn’t know who her grandchildren are, and doesn’t really think the woman in her 40s who visits is her daughter. Currently supported by DF (75) at home, but the strain is definitely getting to him. She’s now mostly contented after a long phase where she withdrew from seeing people and was very distressed about her situation, but entirely dependent on DF and he can’t leave her for more than five minutes, so he’s in the trenches 24:7. No way she could live independently, even with carers coming in.

I’ve spent the last few years gently suggesting that they should have a cleaner / gardener etc even if it wasn’t needed as a) it would get them used to having someone around and chance to get to know the person, b) mean we have something in place in case of any crisis and c) give DF some respite and help him keep DM at home as long as possible. DF refused this on as it would make Mum more confused and distressed, which I understand, but could tell it was going to lead to longer term issues having nothing set up (also think related to his life-long belief that anyone around the house is going to scout it out to rob it…).

At least we have POA, wills etc sorted after DF’s uncle caused a horrendous mess not having them, and they are fortunate enough to have plenty of cash. I’m an only child and we live abroad – will be returning to the UK next year, but still several hours travel from them. Also have a young family, so really not able to offer more than limited practical support.

So, we come to now. DF had prostate cancer three years ago – a six week radiotherapy course was needed, but Mum was ok to be left in the house for the daily appointments and he didn’t have bad side effects so could cope. Now the cancer is back although exact extent and course of treatment is TBC. DF’s best friend is taking both him and mum to the initial appointments / scans and sitting with mum in the waiting room, but that’s not going to be tenable for a prolonged course of treatment or if he needs to be admitted at all. With nothing in place at home, we’re realistically looking at respite care for DM, which will be a horrendous upheaval for her going from nothing to full time care. ARGHHHHH. Going to have to break it to my boss tomorrow that I’m likely to need to hop on a plane shortly to go at least for a few days to support them through this.

And what is DF’s main priority?? Hiring a storage locker for his genealogical records in case he’s not at home for a long time and the house become so damp they are damaged… To be fair, he has also been in touch with social services and is generally pretty organized and helpful so do appreciate how lucky we are compared to most on this board, but if I hear about this storage locker one more time I may explode!! It’s very unlikely the house will be unoccupied for more than a few days, and even if it is, we’ll make sure it doesn’t fall into such disrepair that documents are damaged. Guess it helps him to have something to focus on, at least...

Im just catching up and your post struck a chord. I am so glad I got the Doctor out to my Mum as her cognition was declining rapidly. We did her DNR but also a PEACE (sp?) that went through decisions like oral antibiotics = yes drip administered antibiotics requiring hospital admission = no.

The PEACE plan seems like an advanced directive to me and I found the questions helped the decision making. I will certainly be putting one in place for me.

I am fortunate my DDad had a heart attack when I was a teenager. Luckily he survived another 30 + years but it meant my DM and I had a lot of discussions about not prolonging life over those years. I know what DM wants and will not prolong her life.

The worry for me is who will do that for me. I know I’m going to have to write a very specific Health and Welfare LPA.

@TheBroonOneAndTheWhiteOne thank you so much for remembering! Not yet am due to start in February. I am already wobbling if I can do it or not, DH has been marvellous about visiting DPs since he retired but keen to book many holidays and I feel new job could be a barrier - however DPs are a much bigger one so there we go, plus I burst into tears on a dog walk today because I thought I had lost my door key so I don’t feel very emotionally healthy at the minute. However I am going to give it a go and switch my phone off Wed - Fri when working, come what may !

@rookiemere you cannot continue to put your life on hold because of DPIL, I find work good for my mental health. It may actually help your DH see that a change is needed as you cannot help on those days.

Spoke to mum’s GP about her Respect form and was a great relief to hear we are on the same wavelength in terms of any future interventions should her health deteriorate. He seems to look after all the residents in the care home mum is in and said last time he saw her she was ‘zooming around on her walking frame’.

I feel so much for those going through many of the things I am now finished with; the gradual deterioration, the unwillingness to have any help apart from family, the useless brothers etc. It only became clear how bad mum’s dementia was after the sudden death of my father. He had been putting on a brave face for a long time. It then took a few disasters, including being found wandering the streets in her nightclothes and a nasty fall in the bathroom, before it became clear to mum (and those who are supposed to help deal with these things, like social services) that a care home was the only way to keep her safe.
I think I aged 20 years in that 5 year period.

She seems content in the home and it is a huge weight off my mind to know she is safe and well looked after. She does not know who I am, just that I look a bit like her daughter...

Having said that, I still seem to spend a lot of time dealing with various issues, which I won’t go into in detail as probably quite outing, but I can say dealing with unfounded accusations made to the Office of the Public Guardian was one of the most stressful and unpleasant.

I think this all qualifies me for the Bad Daughters club as according to some in the family mum should have come to live with me, despite me having a full time job at the time and no room suitable.

@ThunderFog Happy Monday! I’m cheered up just thinking about you putting your best face forward. Gives me hope I can still find that will too. I hope we all made it through another day.

Great advice @countrygirl99 and welcome to all newbies.

Thanks also to @PermanentTemporary for showing the huge value of this board by explaining the difference between palliative and end of life care - sometimes you don’t know what you don’t know and some professionals use words without realising you won’t know what they mean in practical terms.

@TheEldestChild we are 'fortunate' that DM is the last of her generation in the family. So there were no suggestions made about DM coming to live with DBs or me when she finally left hospital after 3 months rotating round various wards.

But I have read the sentiment 'I couldnt shove my lovely DM in a home' expressed many times on MN. I assume these people dont have experience of the reality of dealing with an elderly parent who doesnt recognise anyone/thing, will lash out if frustrated etc etc.

But I have read the sentiment 'I couldnt shove my lovely DM in a home' expressed many times on MN. I assume these people dont have experience of the reality of dealing with an elderly parent who doesnt recognise anyone/thing, will lash out if frustrated etc etc.

DH and I have agreed that if one of us gets dementia there is no shame in putting them in a nursing home rather than attempting to be their carer as it isn’t the romantic scenario of just reminding them of their environment that some people seem to think it is. We don’t have DC so no help when we are old which really makes you think about what you need to get in place before this becomes a reality. However I hadn’t really thought of doing an advance directive but that is now on my list to do.

But I have read the sentiment 'I couldnt shove my lovely DM in a home' expressed many times on MN. I assume these people dont have experience of the reality of dealing with an elderly parent who doesnt recognise anyone/thing, will lash out if frustrated etc etc.

@GnomeDePlume Hear hear. I think it was another thread where I said that even if I lived with mum I would not be able to provide the quality of care that she gets now. The home has loads of helpful equipment and lovely staff who are well trained and have experience and patience. And I get to still have a marriage and a job and hobbies and a life!

I remember asking on one such thread if the OP had wiped her own mother’s arse. Sorry to be crude but it was my reality at the time and the ‘I couldn’t put my mother in a care home’ gang were out in force.
Thankfully we’re back to only urinary incontinence touch wood.

Agree , people have a idea that caring for an elderly is just about getting them a drink when they want one , and maybe helping them up the stairs to bed !

My mum is now long gone but I have memories of washing her genitals , changing incontinence pads , catching for vomit in my bare hands when she was suddenly sick whilst feeding her in bed as not to have the rigmarole of changing nightwear & bedding for the 3rd time that day .
Oh and changing a stoma bag .
In fact everything you never thought you'd have to do for another human being , and no it's not the same as caring for a baby , times than by 100 .