Where do we go from here?

Hope you don't mind me hopping on as I read this thread by chance. My parents and in laws are all gone now but I just wanted to suggest something.
You mentioned that one of the doctors muttered about palliative care.
Palliative care is more known for cancer patients or known terminal illnesses but there is such a thing as a palliative care consultant and they can be enormously helpful .
My DM declined over a couple of years but the decline was more rapid over her last three months. She remained mentally clear to the end but heart failure, among many other things was causing her to be in and out of hospital. One day when things were really bad mum said she had had enough. Very clearly and forcefully to a nurse. There happened to be a palliative care consultant on the ward and he saw mum. He was able to make things happen in a way none of the other doctors had and mum's last hours were peaceful.

He talked to me and my sister and said that for most doctors they struggle to move from striving to extend life at all costs to allowing a more comfortable end.

I don't know whether your DM is at that point yet but thought it worth a mention.

Sending love and solidarity to all 💐
We had a multi-disciplinary meeting last week with mother, and it was helpful to have the various professionals together.
I am relieved to know that if mother has mental capacity, she is still expected to demonstrate that she fully understands that what going back to her home will look like.
The staff paid a lot of attention to what mum said, which helped her to feel engaged in the process. It also clarified, as the family expected, that she doesn't fully understand that she won't be back to how she was three months ago, even when the rehab team have signed her off.
It's looking like a care home is the way forward for mum, and she's admitted to some disappointment about not being able to go home, alongside relief that so many things will simply be taken care of by others now. We're looking forward to being able to visit her in her 'new home' and do nice things with her as we won't be struggling with caring responsibilities as well. Mum's been fiercely independent all her life, plus in denial of her situation more recently, so we're hoping that she's entering a more contented phase, where we can enjoy each other's company.
Very fortunate that she is able to self fund as that means we can choose somewhere suitable. And although nobody would wish a stroke on anyone, the silver lining is her willingness now to accept help, and quite graciously to boot. It wasn't always thus!

@GnomeDePlume I hear and agree with your frustration at how difficult life becomes at the older end of ageing - and I too have heard the saying about pneumonia being the widow's friend.

Ps the above delight ^ with the care team comes after weeks in various hospital wards where we had to be there at mealtimes because nobody was helping her to eat, nurses seeming unbothered at her confusion, her various other ailments being untreated etc. Staff well meaning but rushed off their feet and often clearly irritated at being asked for progress reports. Also carer seeming to believe they knew more about our mum than we did - not helpful as it meant they sometimes didn't take information on board.
The real turning point came with mum accessing the rehabilitation unit so we fell on our feet there!

@GnomeDePlume and @CaveMum , thank you for responding. I agree that our loved ones will go from one health issue to the next never with any progress. I can’t carry on with daily visits for both as well as looking after my family and trying to keep myself together. It’s just so sad to see, all of the ladies in my mums ward are in a similar position. Re the care standards, when I visited last night over the two hour period I was there the only person that even stepped into the ward was the catering trolley with tea. No nurses to check on any of the six that were there. As it stands, this seems to be the norm. Sending you all best wishes, look after yourselves too.

@Anjo2011 I think you’ve summed up the whole problem with the NHS right now - reactive, not proactive. Keeping your mobility and your brain active is so important to manage ageing, the NHS should be running 60+ yoga/pilates/movement classes all over the country (I know 60 is not “old” but we need to be working on these things earlier to get the benefits, if we wait until our 70s/80s it’s too late) as well as meeting groups to keep people social and engaged.

My late MIL (mentioned up thread) was a former English teacher and history buff. She attended U3A classes on her favourite topics and even taught Shakespeare classes herself up until a year or so before she died. When she stopped attending her mental decline was rapid.

Re the delusions/hallucinations yes they are often very mundane and almost believable. My dad was adamant during a recent hospital stay that someone was having loud sex on the ward (4 beds, all men aged over 50 with a variety of neurological issues) and another time I was at my parents house and he got up from a nap adamant that he had to go and help his brother load bricks into a van and got very angry with me when I wouldn’t let him leave the house. Possibly he’d been dreaming, but trying to reason with him was incredibly tough.

I’ve just found this thread and want to extend my thoughts to all of you experiencing similar declines with your elderly parents . I’m in the same situation, DM admitted to hospital three weeks ago after several falls, UTI was diagnosed. Since then she hasn’t walked a step. Has occasionally been hoisted into a chair for a few hours. Delirium has been present for the whole of the hospital stay. We discussed rehab two weeks ago but nothing happening. My DF is 90, deaf and at home alone. Between visiting him and hospital visits it’s challenging. Hospital care is patchy and reactive not pro active. Nurses are lovely but overstretched. Have spoken to one Dr and one physio in three weeks. They are now waiting on CT scan and more antibiotics for UTI. My story is so similar to many in here. Look after yourselves

Yes, I know what you mean, the curtain between real and imagined seems very thin. When mum was first admitted it was more grandiose - she was in a film, she needed to evacuate everyone - but now it's just small confusions and 'supposing' random things. Almost like making small suggestions to test what is real.

I have had a horrible feeling from the beginning that the end had started, however long that road was. Life will certainly never be the same for them, whatever happens.

It took me a while to finally accept that you can't fix this. Even if you gave up work, moved in with her, had 1 to 1 carers on hand 24/7 old age and ill health will win and prolonging that is not necessarily in the best interests of all concerned.

I go for statements very much in the moment like 'this is where you need to be at the moment' or 'when your feeling better we'll look at plans' etc.

Sorry to hear everyone's updates.

My mother is still in the main hospital as they have patched up all the physical problems but the staff have finally picked up on / my dad has finally pushed the confusion issue. She doesn't think she is in hospital, but she's not sure where she is. She berated my dad yesterday for not coming to see her for a month (he goes every day). She thinks that a lecture at the hospital being put on is probably being led by her friend's husband because they're both called Alan...

Ive been pressing this for weeks now but my dad has been reluctant to push it; but I think he's finally seeing it now. Staff kept cheerfully saying it was ITU delirium but that wouldn't go on for 2 months. They're now finally doing a brain scan and bloods, etc. it sounds awful but I'm so glad they're taking it seriously as I feel it will help shape plans if we know what we're dealing with. Though, like a pp's mother, I think she's still of the opinion that she'll be going home soon.

My dad thinks it's probably malnutrition due to her barely eating but the symptoms he listed from the NHS website also match vascular dementia. So he's being the optimist, and I'm being a (quiet) pessimist.

So sorry to read this OP, it does seem that a fall is the thing that knocks all the dominos over. We had similar with MIL, she went from being a fit and relatively active 76 year old living on her own in a 3 storey town house, had a series of minor falls (broken collar bone and cracked ribs but no major broken bones) that meant several hospital stays and within 3 years she had sadly died.

We’re now dealing with my 75 year old dad who has multiple issues (blind, hard of hearing, NPH, pre diabetic, slow progressing prostate cancer, to name a few!). He’s had a recent hospital stay due to a UTI and now has a carer coming in daily, alongside my mum doing a bloody brilliant job, but he’s angry about still having a catheter in (he has urinary incontinence due to the NPH) and seems to be losing perspective of how serious his issues are.

I hear you about the need to vent a bit!

Oh my, I hear you. It's all so confusing and ever-changing. I used to joke that my parents' state was a fast moving situation with slow moving people. I expended so much mental energy in going down the 'if this happens then we need to do this' permutations. Whatever decision we made quickly became redundant but only after having done lots of fruitless research.

One thing goes wrong and then it's a deterioration cascade.

I too absolutely agree with WinterFog's 'I have come to the conclusion that there is a fine line to walk between acceptance of the situation and advocating for my mother.'

If you're quite an achievement-orientated person, as many of us are, it's hard to accept that actually there is no good outcome or solution, only levels of least bad. There is much inefficiency and poor communication in the NHS, that's true, but ultimately they can't cure octogenarians of the underlying issue (being in their 80s). We can do our bit to help set up care or find a care home or even offer to it ourselves (but like you, that was something I was never going to do) but again, we're building a fortress out of sand in a storm.

My father died a 15 months ago after a really horrible couple of years. My 83-year-old mother is now in a care home as she has very poor moblity and dementia. I feel I rushed the second decision (she did have a live-in carer at home, originally got for my father) because I panicked as there was muttering from the care agency about needing two carers (a road we ended up with with Dad) and I felt like we were delaying the inevitable. So I feel guilty about that and see her sat watching TV with little activity in her room. But she was doing that before, just in a bigger house but further from us children.

I don't know what I'm saying other than maybe just accept that all options are miserable and unsatisfactory.

@GnomeDePlume vent away. It definitely helps. As @WinterFrog said perhaps a nursing or care home is the logical option? Honestly the staff at the facility my Dad is in are utterly amazing. He is definitely in a better state now than when he was admitted. He is fading very slowly but no pain, he is engaged in the social aspects and he eats really well. Is there an option to speak to a doctor or social worker and arrange a ‘best interest’ meeting. I did this by airing concerns when my mother just would not accept what she was being told by OTs and other staff - that Dad needed nursing care 24/7. She just would not listen.

I have come to the conclusion that there is a fine line to walk between acceptance of the situation and advocating for my mother. Juggling with guilt re the level of care I'd be able to offer should she be deemed fit to go home, against the knowledge that this is what the sunset time looks like - and it is what it is, mother's failing health not being something we can control.

Nor can we control the way the NHS works of course. I'm mainly just clucking around mum when i go, keeping her engaged in nice chats and looking through photos together. Brushing her hair, little bit of handcream etc.

Oh mate! I don't even know what to say, except sympathies, once again! I wonder if her next move will simply be a nursing home.

We too are discovering the limitations that go with care of elderly patients, as well as some real kindness from most of the staff.

Hugs 💐

💐 @GnomeDePlume and well done to DD!

As a carer this situation is all too common, hospital stays making people go downhill. It’s heartbreaking.

Sending love to you all

So sorry to hear what you and your mum are going through at the moment. Frail patients just don't have the resilience to bounce back in the way a younger person would and each subsequent demand on their mind or body while they are still recovering from the first problem just sets them further back.

Medications can have a huge impact on the elderly, anaesthetics and strong pain killers in particular. It might be worth asking for a frailty review of the medicines she is prescribed to see if anything can be reduced or stopped. This could help her confusion, appetite and general well being.

I know exactly what you mean about wanting to impress the right people. My mum managed to get out of hospital the first time by saying my dad would help with her mobility, when in reality there was only so much he could and should do, and their house is totally unsuited to her using a walker. In reality she was stranded on their sofabed for a week, unable to get to the commode, before adult social care stepped into my dad's pleas for help and got her back into a rehab unit, this time.
My dad has said that in reality she can't go back home while in pads as it's very hard to 'change' an adult, and I see what he means.
And every time she has to go back to hospital with a new issue (not eating being one of them) the bit of mobility she's got back disappears.

So nice that someone understands that feeling @AInightingale though I'm sorry we're leading a similar life!
I think I'm going to have to put a bit of steel in my spine and be clear about being unable to be there 24/7. I've been a bit wishy washy about it as I have experience in care work and could do a lot of things, and would love to be involved in helping her live at home if it was as part of her rehabilitation. But also as a former carer I know what the decline can look like, with ever increasing needs, and I can't commit to dealing with that long term.

Viewing residential care as protecting mum from falls rather than abruptly ripping her from her home is a much healthier spin on things, so thank you for that 💐