Where do we go from here?

[GnomeDePlume]

Up until 4 weeks ago DM(85) was doing fine. Lived alone in a bungalow with family member close by calling in regularly (most days) for general chit chat.

Then she took a fall and broke her leg requiring surgery.

In these 4 weeks DM has declined so much. Her short-term memory is shot. She has stopped eating, she still chooses food but then just pushes it around a bit without managing more than a mouthful. She still drinks water but isn't interested in any other drink (she used to be a big tea drinker).

DM is now in a ward waiting for discharge to another hospital where she will do some physiotherapy.

It all seems too little, too late. She isn't getting out of bed. Her world has shrunk from bungalow, well tended garden, clubs, to the tray over her bed.

Is there any coming back?

I'm not sure what answers I'm looking for. It all feels a bit miserable at the moment.

I think the high level of pain relief needed after a fracture and surgery plays merry hell with appetite.

Chuck in the fairly dreary food and weird meal times and it is surprising if anyone eats anything.

I know it is probably cost and admin related but the insistence of squashing breakfast, lunch and dinner into a very short period does not encourage eating.

💐@AInightingale bloody awful sums it up

My mum isn't even eating sweets or biscuits if offered, that's very out of character for her! It's as if her appetite has just been switched off.

The same with my DM.

I notice that she has also got quite adept at pushing food around to make it look like she has eaten. That probably stops people bothering her about not eating.

DF did the same thing as his appetite disappeared when his cancer returned.

I have no advice but just sympathy, I'm in a very similar position. Mum 78yo mum went in at the beginning of sept with one health condition (which she had been ignoring symptoms of for a couple of months), spent a month in, tried to come home, could not cope so went back to a rehab unit (wish they'd just recognised that this was needed in the first place) and is now back in hospital due to more health issues. She has completely lost her mobility, is basically in nappies, barely eats (though that was an original symptom), has lost all interest in reading/crosswords, and is now sleeping a lot. She had to go back to main hospital last week due to more emerging, small health conditions.
My dad visits every day but the prognosis always seems vague. She told her rehab she wanted to get 'back to normal' (very sedentary life spent mainly at home) but she seems to have no drive to get better and also seems so vague about what is happening to her. She just seems to be accepting things happening rather than actively trying to get better, which sounds harsh but it seems to be the only way to describe it.

I feel like she went in for one pretty serious condition but all other aspects of her health went out the window. It's great that her original issue was under control but she got no physio or help with food while she was in there and the nurses treated her like a child which didn't suit her already spiky disposition.

Sorry, that's turned into a rant, but I just wanted to say that I understand the feelings of helplessness and confusion. I am trying to help by supporting my dad but I live 100 miles away, am pregnant with a toddler and already have a difficult relationship with her. It's so hard to know what's going on in her head as that generation sometimes just don't talk about it. I've told my dad that she's likely very depressed but he doesn't really like to talk about it.

My mother has had recurrent episodes of this, they called it 'ICU delirium'. She thought she was in a film, called my dad at 1am to ask him to bring her shoes as she said she needed to evacuate everyone to the car park. It's distressing and I am still not convinced that there's no underlying cognitive decline (she's been pretty vague on some things for a couple of years now) but all the professionals she's seen seem cheerily unconcerned and again, my dad doesn't see it, or want to.

Sorry OP, I've just read on further and seen that things seem to have taken a turn for the worse. I'm so sorry to hear this. In a way though I'm glad I've found this thread as I have few people in real life that seem to understand really. My partner doesn't like her much so he tends to focus on the 'why doesn't she want to get better' aspect, my brother is estranged from her, and none of my friends have elderly parents.
Really hoping that you get some clarity at least of what's going on.

@Borgonzola I do understand.

We are fortunate in that, at least for now, this has brought me back into contact with my DBs. We are not on the whole a close family but somehow we are managing to pull together for DM.

I don't think a lot of people understand the impact this has. It is shocking to see a someone you love turn into an angry frightened person you don't really recognise.

And there is nothing you can do.

@GnomeDePlume thinking of you and sending love and solidarity to you and yours 💐

Best wishes to everyone else here who has elderly parents going through similar 💐 And of course to the poor patients themselves 💕

I'm feeling a bit like the little boy in the emperor's new clothes story. I've had staff telling me how well she's doing, brothers saying she's telling them she's eating like a horse etc. Yet each visit i find cold tea, abarely touched plate of food, uneaten food gifts ( sweets/fruit) If I manage to coincide with mealtimes then I assist her with eating as she's not managing very well at all. Still eating very little when I help her. She will drink tea when I'm there though.

She's barely continent- in pads and knows when she needs to go but can't wait long for assistance. So every day I'm taking home wet clothes to wash. The ot keeps telling me how her cognitive function is improving and yet Mum is telling quite tall stories about what goes on in the ward and makes very loud and inappropriate comments about staff and fellow patients. She can hold it together well for people she wants to 'impress' (for want of a better word) in short bursts.

I realise people want to be positive, but I do see her continuing to need 24 hour care as she doesn't seem to understand her loss of ability, so can imagine her trying to get up to use the commode on her own, and falling. The ot said she wants to get mum in the kitchen and work on making a cup of tea...this week...when she's managing about six steps on the zimmer frame at the moment. What they are saying vs what mum is capable of doing are worlds apart. And I end up feeling I'm pouring cold water on the optimist they all seem to feel.

It also apparently is down to mum whether she goes home or to residential care, as she is considered to have the capacity to decide. This alarms me too, as like @GnomeDePlume I don't think she has the capacity to understand the ramifications of the decisions she makes. She'll certainly need four care calls a day, but unless my siblings are willing to take their turns with me in sleeeping/waking there overnight, that won't be enough. At the moment it doesn't sound likely and I'm not in a position to do it all. Mum will be staunch in her denial of reality, so I'm hoping that the staff involved in the decisions about her discharge will pay attention to what we say, and not just her.

Beyond stressed, writing all that down!

Hugs to all on here xx

You could be leading my life @WinterFrog !

Sadly it doesn't sound as if your mum will be able to live in her own home and stay safe; when the hospital staff social worker assessed mine re discharge, the biggest concern was that she would fall again very quickly, probably while getting out of bed at night to try to use the bathroom alone. At least that SW was realistic. A care home was presented as the only option. There is a mat with an alarm thing on it beside her bed so they can respond quickly. It will be a miserable worrying life for you if you have a very vulnerable person in their house with only carers coming in.

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 💐

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 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.

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

Sending love to you all

I feel we are now just waiting for the next big thing to happen. DM has a raging UTI which isn't really surprising as she has a catheter which she pulled out in one of her paranoid episodes.

No further update on the stroke so far.

DD and I visited yesterday. DD is so good with DM, she chats and doesn't respond to DM's less logical claims. She just goes 'Mmm hmm' and gets mum back to reminiscing about her childhood.

I agree that the general life of hospital isn't good for DM but I can't see an alternative. DM needs 24/7 care including 2 people to move her.

💐 @GnomeDePlume and well done to DD!

Yesterday DM was due to be moved to a rehab/assessment unit. All packed up ready to go then she had an ECG which caused some concern.

ECG needs to be reviewed by someone senior.

So now DM is bed blocking. Quite literally, the person due to go into DM's slot is stuck in the corridor.

Rehab unit won't take DM with a dodgy ticker as they don't have a doctor onsite just a visiting GP.

So today we wait to find out where DM will be sent next. If she isn't fit for rehab/assessment then she will possibly be moved to cardiology 'for observation'.

When I was sat with mum yesterday I could see how much weaker and more tired she had become since I saw her on Monday.

I'm having long discussions with DB who doesn't really understand the system and just gets cross. This doesn't help DM as she just gets wound up but doesn't really understand why.

The big problem for DB is that he doesn't drive. We are in a large county and the hospital 'estate' is spread across a few towns with poor public transport. DB is fighting against the fact that he has no real say in where DM is sent. They can't magic up a suitable bed space to fit with the bus timetable.

DB is struggling with the fact that the hospital is a treatment centre with individual specialist units within.

DM has lots of things 'wrong' but none of them are going to get better so treatment wards don't fit her needs.

Sorry for the long post! I needed to get that off my chest.

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 💐

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.

@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.

@WinterFrog I totally agree with what you say about it being a fine line.

DM still believes she is going to go home. She is unaware of how weak she is. In her memory she was walking around just with a walking stick not 3 weeks ago. She believes that DB is keeping her in a hospital bed unnecessarily. Also the fracture was 'years ago'. All this means that she tries to get up and has to be forcibly restrained adding to her sense that she is being unfairly treated.

The reality is that she hasn't taken a step since the fall which broke her leg 7 weeks ago. She has had almost no physiotherapy mainly because she is going from one problem to the next.

A nursing home may well be the next step. The problem will be finding somewhere which will accept her after her recent stroke and now iffy ECG.

I think you are right in saying this is the sunset.

DB is in a sort of denial. In his mind somewhere in the hospital there is a convalescent ward where DM could go and have 24/7 nursing and just get better.I don't think these have existed since the 50s.

He also talked vaguely about DM having a private nurse at home (a 1930s delusion). I burst that bubble by pointing out that DM would probably need a team if 8 or 10 nurses on shifts. We wouldn't see any change out of £350k/year and possibly more. She hasn't got this and neither do DB and I.

DB is very cross that the hospital won't bend to his will.

My role in all of this is to be soothing both to DM and DB.

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.

Thank you for all the kind and thoughtful messages

@Sittingontheporch fast moving situation with slow moving people sums it up very well.

I understand the guilt you feel. Perhaps try and find consolation in the thought that the alternative was worse.

Latest sit rep: DM has a chest infection to go with the ever-present UTI. Plan to move DM to rehab/assessment unit is shelved for the time being. No word about ECG or stroke as these are now old news.

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!

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.