So bloody exhausted waiting for someone to die 3

[StiffyByngsDogBartholomew]

Carrying on from our first two threads..
https://www.mumsnet.com/talk/elderly_parents/4967638-so-bloody-exhausted-waiting-for-someone-to-die-2

I've asked for a care assessment... He's on a VERY long list....

Also when we actually get someone out here... He'll refuse to engage.!...

I understand re expense isn't always the best... I really do.... BUT it's a small market town there are only a handful.

I'd just go home, honestly, and make him realise he's got to arrange his own care.

You're becoming unwell yourself with the strain of this.

One home, which he could afford increased it's prices by 50 %, once it had an outstanding rating...

They don't have any spaces anyway

@IamtheDevilsAvocado I had the thing with my parents being in a small town with not many care homes. There was one close to the house my DM didn't want because of the ratings, a council one nearby she didn't want because the rooms are too small (this is for my DF who can't see or move!) and an expensive fancy one that's 20 minutes drive away from her house in the middle of nowhere. She went for the expensive one even although I asked her not too because it was going to be a pita to get to for everyone else and Dad's friends.

You do eventually get to the point that they've got to sort themselves out, you'll get ill yourself otherwise (been there, got t shirt).

My mum has early stage alzheimer's and is in a small town with just 2 care homes. One (A) doesn't take people with dementia, the other (B) is God's waiting room but mum hasn't been there so doesn't know. Every so often mum says she wants to go into a home to have company but insists it needs to be A as it has a bus stop outside. She hasn't caught a bus in years! She refuses to consider anywhere outside that town and I know she would hate B.

My mum now can’t swallow anything vaguely solid (doctor has stopped meds) and is in bed/asleep a lot of the time…tiny sips of fluid here and there…refusing food…might the end be near now?

I'm sorry, but it does sound like it.
Is she calm?

Yes, very peaceful. I said goodbye 2 weeks ago, as I live 100 miles away, so I rely on information from the NH staff. My brother and sister in law visit more often (most days) as they live close.

I'm glad she's peaceful @RosaMoline and that you've had a chance to say goodbye.

You learn all sorts of strange language don't you....deemed to have capacity for example.

Thinking of you @RosaMoline. I think the end is near once the person is no longer taking fluids onboard.

If circumstances mean that you cannot visit again, there is no need to feel guilty. Remember that she is almost always asleep now and it sounds like your brother and sister in law are visiting as and when they can. Everyone can only do what they can around our own commitments and logistics.

Thank you. That is very kind. I have been feeling an overwhelming sense of guilt, so your post has reassured me very much xx

How is everyone doing?

It was one of the DC's birthday at the weekend. My mum texted me demanding to meet up to see him. One of the days she suggested was a school/work day and the other was the day of his party - he's a teenager so wanted to hang out with his pals.

I explained we coudn't do those days but I would let her know when we could meet up. And I worked out a date we could visit and was going to message her.

Except before I could do that I got in from work on Friday and discovered she'd been round at our house (it's an hour away from where she lives and not close to anything) and shoved a card through the door.

She's really passive aggressive and attention seeking and now I'm at a complete loss. I don't want to suggest meeting up because it feels like I'm reacting to her coming to our house.

There is absolutely no point trying to speak to her to sort it out, she' told my sister she was going to the shop that day (shop is not particularly close to house) and she'll go into total DARVO mode if I say anything.

DH couldn't quite understand why I was upset but it's part of a massive pattern of behaviour. There has been a LOT of boundary shoving over the past few years to the point I've become mentally unwell and had counselling.

I did at one point visit her a lot but amongst other things discovered she was being nasty about me behind my back... DF is terminally ill but taking a long time to die and I just seem to be stuck in a terrible holding pattern.

That sounds very stressful @HoraceGoesBonkers

@HoraceGoesBonkers I think any convo with your mum needs to be on the lines of "oh well, what a pity, never mind"

@HoraceGoesBonkers i agree with Countrygirl - a metaphorical shrug of the shoulders and just carry on your usual communication/visiting routine as if it never happened.

My DM is getting weaker and frailer. I know I say it a lot and think that she couldn’t get much worse but then she surpasses herself. I noticed at the weekend that she can’t even lift herself up the bed from lying to semi-lying, despite the wedge pillows etc. I had to talk her through getting out of bed, shuffling towards the top end, and then getting back in it with her bum closer to the pillow. She was exhausted! I’ve noticed a lot of the carer comments include “repositioned her in bed”, which I presume is because they want to avoid bed sores. She does roll about in bed a fair amount so I hope it’s unlikely but good to know the carers are taking standard steps. She isn’t officially bed bound, just decided one day a couple of years ago that she couldn’t be bothered getting up.

i spoke to a neighbour of hers who was asking after her and i think my standard response is “she’s fading”. I can’t think of any other way of describing it. The neighbour has known her for decades, and admitted she’s surprised mums still going given how far she’s declined.

I’m still waiting for a crisis to force a change and like Horace it feels like my life is stuck. I know that this can’t carry on forever but my mum appears to be a tougher old bird than I give her credit for.

@countrygirl99 It's not exactly an elderly parent problem because she's always been tricky to deal with.

When DS was born she made up a weird reason that she "had" to drive to see my sister (Dsis also had terrible mental health problems). So then of course she was "just passing" the hospital and tried to gatecrash the operating theatre. I found out later from one of the nurses. It just felt so intrusive. When I told her I felt really uncomfortable about it I got berated like it was a completely normal thing for her to have done because she happened to be in the area and totally hadn't calculatedly planned to do something that massively overstepped normal boundaries... 🙄

The thing is she gets very angry that I don't speak to her more but yep, it is horribly stressful. When DF was in better health he would sometimes enable her (he was part of the hospital episode) but would sometimes stop her if she was going to go too far.

DF unfortunately gets weaponised fairly often. She will do stuff like phone me up and ask if I think he should get vaccinated or moved to another home then she will ignore whatever I say anyway - the point seems to be to rile me up with an emotive topic. I'm now very low contact although that seems to have spurred her into coming to the house.

I used to phone her once a week and visit once a month but I'm finding her impossible to deal with. I know I've posted about her on other threads but she makes any stressful situation much, much worse.

@funnelfan My Dad has been in a care home for two years now. He can't feed himself and is incontinent. My DM is determined for him to get every intervention going to keep him alive.

She riles him up too and he gets upset. Like he got taken to her house from the home a while back and she spent the entire afternoon telling him he would have to go back to the care home soon. The last time I spoke to her she was telling me he got upset when she was playing him sad music. She seems to feed off upset.

I’m sorry. Do you have your own line of communication to the care home for updates on your dad, or does it all go through your mum?

Regarding medical interventions, we are extremely fortunate in mums GP, who she has known for nearly 30 years. When the GP visited to do a DNR assessment, the GP said that with patients like mum with limited capacity, they are happy to work with the patient and family to decide the appropriate approach to any medical need based on what the best outcome could be on a case by case basis. She even brought up the example of antibiotics not being automatically prescribed for an infection if everyone felt that the quality of life was not worth preserving. That was hugely reassuring to me as DB and I are agreed we don’t want mum being kept alive for the sake of it, only if she’s getting something out of it, which she still is, albeit very marginally at the moment.

Mum has all the communication with the home. It's not the easiest place in the world for me to get to and she goes every day. I don't think I've got much chance of influencing anything.

Dad has an end of life document but it's not very coherent. Also the last time he went into hospital and nearly died I told the consultant he had a poor quality of life but my Mum shouted over me that he had a great quality of life. We both, along with my other sister and her husband, have POA.

dear me, what a situation.When I reflect back I see cognitive and physical decline and denial is a toxic mix.

Can I say argh?

Because DM hasn't died yet, after her "incident" last autumn, her CHC funding has been withdrawn. Oh well, it was good while it lasted.

She's still a breathing corpse, just one that can swallow a bit of pureed food three times a day. Every time my phone rings and I see it's the home, my heart quickens, but then I answer and they breezily say "Hello, it's nothing to worry about, could we just [insert request for consent to Covid vaccine, more toiletries, whatever]". And I think "ah bollocks."

Do you consent to the Covid vaccine? I’ve let mums boosters slide. I suppose in a residential setting there’s the staff and other residents to consider.

@funnelfan TBH I've been telling them to not bother. I really don't see the point. She caught it anyway in 2021 and bloody well recovered!