Caring for elderly parents? Pop in for support/advice/a bit of a rant...

[picklemepopcorn]

Pace yourself, it's a marathon not a sprint!

This is a safe place to offload- don't be embarrassed about how you feel. No judgement here...

There are lovely people here with practical experience of some of the issues which crop up who'll share their hard won knowledge!

Flaskfan...no. Mum has never had a formal assessment or diagnosis (is there even such a thing?). Her TEP states severe Alzheimer’s and her medical records must say it as well based on the fact that not a single sentence she has uttered a Dr make any sense whatsoever.

She has never been to the GP voluntarily and so it has all been after the event and sometime after her significant deterioration.

There is no medical LPOA so some medical staff will not speak to me (almost more closed up because of it oddly) and yet others (usually medics) are absolutely on it recognising that I’m her carer and excluding me is just ridiculous. She cannot consent to anything and again some NHS staff get really tied up over this quoting the MCA and describing their medical care as an assault unless they have consent. I appreciate their POV but this does mean she might not get healthcare.
MCA says (lots but key points here)

1. All adults are presumed to have sufficient capacity to decide on their own medical treatment, unless there's significant evidence to suggest otherwise and evidence of capacity changes depending on severity of decision. So the HCA getting knickers in a twist over taking blood that a GP has requested is disproportionate to a Dr deciding to draft a TEP

1. The MCA provides legal protection from liability for carrying out certain actions in connection with the care and treatment of people who lack capacity to consent as long as practitioner has demonstrated they have considered capacity and best interests.

These barriers have meant in the early stages that nothing happened, no diagnosis, no early intervention. Not protecting her best interests in case she has capacity....

She's already been referred, but won't go. As she's the driver, my dad can't make her go. I phoned her gp a couple of years ago because I was worried, but he wasn't tht concerned. She's worse now though.

Ps Pilates is great for sciatica.

TBH getting a diagnosis doesn't really mean much anyway, depending on where you live, as there is very little help out there. But I think the main concern would be if it affects her ability to drive?

Update on the mouse front. It turns out my mum did actually go to her neighbour to ask to borrow his cat. He laughed at her suggestion. She now feels humiliated and old and helpless, which is sad to witness.

I put two humane traps down in her house. God only knows what she will do if either actually catches a bloody mouse.

Cockroach all.

Hi all. yolo sending strength.
Good luck with the mouse nota!
Not much advice re doctors and dementia- would age uk or Alzheimer’s society be able to help at all with advice?
Sciatica- is acupuncture worth a try? Dm found this helped her for pain relief.

Thanks. I'm not sure he could do pilates as he struggles to move and if he does move falls over.

Acupuncture might be worth a try. I'm not sure what his reaction will be to my suggestion he has needles stuck into him!

Dm was up for it at 92! She was so desperate. Consultant at hospital said it could help. Does no harm.

I'll tell Dad. If a 92 year old can benefit then he can too!

Sorry all, it's all about me again:

Visit this afternoon was trying. She started off quite lucid, but then veered off into randomness again - this seems to have been a pattern of the last few days, the mornings are ok but afternoons/evenings she gets worse and worse.

DB and I put it down to extreme anxiety but as she has now had dioarrhoea again they are putting her into an isolation room while they test. So could be the toxic delirium again.

"How do I get better?" - eat and rest. "But I want to die, so I'll starve myself". Plus all the usual complaints: crap food, other patients too old/deaf/not her class, vicious sadistic nurses etc etc etc.

She is very cross with me because I dont listen to her and only like the sound of my own voice. She also wants to speak to a priest or a vicar as they would at least be intelligent - not something I've heard her say before.

Oh, and I am to bring in the entire contents of her medical and health insurance files for her to discover why she is paying extra money to stay in the NHS, and she would like her orthopaedic consultant's number as she would like to speak to him today.

The above are the sane bits; the random bits included 'when I was in that attic room in another place', 'when you get me the book I will look for the needles' 'two ladies were fighting in here last night' (we've had that one before).

They gave her a dose of oramorph overnight for pain, told them not to do that as will not help with the confusion and also makes her incredibly aggressive.

She will be in hospital for at least a few days, I should think more like 5-10 if last time is anything to go by. So that's another few days of trekking to 10 mile away town and back.

I dont think things will change really now until she dies, she will continue falling over until she does some real damage and/or ends up with pneumonia or something. Cheerful stuff. Oh and my very dull PIL came for lunch today in the middle of this chaos! I could barely string two words together.

Oh yolo I am so sorry. What a crap day. So hard for you and having to endure a dull lunch. There seems to be no possible respite for you- I am sorry. Huge hug and Double cockroach

Yolo, I feel for you so much

Yolo.

Bless you both.

How's everyone today?

Just wondering, has anyone had issues with siblings refusing to help? Not sure how I feel about my sister right now. I do respect her right to keep out of it, but the fact that she doesn't want to support me is problematic.

yolo thinking of you.
Light... hollow laughter from me and this has been the story of so many of us..... s£&# siblings has been a wail from so many.
Three brothers here.... who exist for ceremonial purposes only which are much praised by dm..... after major angst I am resigned to communicate with them re dm in a very factual way, ie telling them when we are away and prompting them to call/ visit. It’s when they meddle and do nothing is the very worst. But also get all the glory..

Sorry- rant over. I think being clear yourself about your boundaries, and getting outside help in however much resisted and telling siblings they have to back your decisions up is the only thing that works sadly.

No sign of DNR papers and GP doesnt have it, have asked hospital to do mental capacity test and talk to her about DNR (assuming they decide she has mental capacity).

Reasonably lucid this morning although starting to lose it again when I left at 12.30. She thought I was unreasonable for refusing to drive 15 miles home and then back again to bring her a toothpick from the bottom of her handbag, which might be next to her chair in the living room at home, or possibly in the kitchen?

Also she wants to be transferred to a private room (she's in a private (NHS) sideroom and it's pretty ok). Pointed out that as she is a) potentially infectious and b) recovering from an accident the private sector wont touch her at the moment. Having paid private med insurance for donkeys years she still doesnt understand that private med is no use at all for emergencies.

I do feel for you whose siblings are either useless at best or interfering at worst, the best of this is that DB and I are pretty much on the same page about everything. I do the day to day stuff and every so often he rides in like a knight on a white charger to save the day and stays anything for 3-7 days which is when I get a break (and make the absolute most of it).

Siblings- one who lives close by but has anxiety issues which are made worse by coping with an argumentative mother with Alzheimer’s and another who lives a couple of hours away, has a fair amount of free time but doesn’t visit all that often unless I specifically request it.
I suspect they feel a bit guilty but bury it quickly ...and then have an afternoon out at the weekends ...when I’m over there coping and caring. Bitter. Ha!

Yolo I hardly know what to say. A few weeks ago my life felt like a merry go round with inpatient stays, crises and developments. It’s a bit more settled at the moment. I felt utterly physically exhausted when it was like that.

Yolo, how old is your mum?

Thanks for comments re siblings. I guess I'm finding it hard to forgive mine for just swanning off on holiday in the middle of a crisis. Not sure where I want to go with that but will probably act neutral as there'll be other things to deal with.

oh mrsm8. viable lesson just as good as a valuable one?!
pierce I slept 12 hours last night and managed to do some work today - reclaiming 'me' which is so important.
lighthouse yes maybe keep powder dry for your sibs, can you call in extra (social services/private) help in the meantime?

I keep meaning to learn the art of distancing myself, and it is a damn sight easier when they are in some sort of care (home, rehab, hospital). I found the hardest thing was setting up private 24 hour care at home, and IME it is not actually any use unless the 'patient' is compliant and has particular needs which can be met ideally by one person for 22 hours of the day and someone to sit in for the other 2 hours (which could have worked for us if DM had been an easier patient, both physically and mentally).

But it didnt work (big time) and so we are where we are... even the (very nice and so caring) care home couldnt restrain her from just getting up for a walk and mashing herself up.

Dm fell and broke her leg- major drama for several weeks. Not until dm was in naice respite home several weeks later did any of 3 Dbruvs visit.....
Light, do keep your powder dry.Vent away here-we get it. But they do not change.
yolo glad you have slept and got a bit of you back. I know that feeling- losing the sense of who we are. Hope there is better news for you and DM. cockroach

DH has a DSis and a DB. DSis gives me the rage. She will tell you that she has given up work to care for her mother full-time. What she actually means is that she pops in twice a week and does MIL's shopping abd washing. She now has PoA with DH, but doesn't want to do anything with it.

DBIL is just not interested. He drops in occasionally if he's that side of town, but was dead against MIL being assessed and he does nothing at all for her. He is semi-retired, but when DH was trying to get PoA done against the clock it was three weeks before he could make himself available to sign the bloody thing.

We've just had a crisis which has left MIL in a very vulnerable position. DSIL has gone on holiday and DH is trying to cover all bases and work as well.

I've just turned down a promotion at work because I know things are only going to get worse and DH will need my support.