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.

@WinterFrog you are right. I have had a good read through the information about the mental capacity act. It isn't a straightforward situation.

My worry is that because the staff are stretched thin, none of them have spent time with DM. They don't realise that DM doesn't really understand what is going on.

@PermanentTemporary ward rounds are conducted outside of visiting hours. DB is with DM every day and gets almost no chance to speak with anyone other than care assistants.

I feel like we are all just dangling at the moment, waiting for the next crisis to occur.

DB was able to speak with a doctor yesterday. The lack of eating has resulted in damage to DM's heart.

The hospital now recognises that DM doesn't have capacity to make decisions on her treatment. I suspect the hospital anticipates some difficult decisions will need to be made soon. DB and I are named on the LPA so those decisions will fall to us.

DB and I are going to have a call after I visit DM tonight. As either of us could be called on by the hospital I want to make sure we are in agreement and that there will be no recriminations later.

My opinion is that we should focus entirely on DM's immediate comfort.

That's good that you finally have the info @GnomeDePlume I'm horrified that we have to work so hard to get this info. It makes it very hard to advocate for our elderly loved ones. I think you are doing the right thing 💐

I can kind of see it from the hospital perspective.

They don't want to have to contact relatives for every procedure. Early on a doctor said that they see all sorts of families from only calling once a week for an update to daily visits.

But I guess it reaches a point where a crossroads is looming and then they would rather have someone else making decisions if that is possible.

Glad you've got some form of answer from the Drs @GnomeDePlume. A conversation with your brother sounds like a very good idea, maybe after you've spoken put it all in an email to him so that you've both got something to refer to?

My dad is going back to the urology department on Thursday to see if he can have his catheter removed. He's had it since his hospital stay in August and seeing as he was already having incontinence issues for months before that I'm not sure that the appointment will get the result he wants, but he's adamant that he wants it out.

Thank you @CaveMum that is a good idea about a confirmatory email.

I am sorry about your DF, it is so difficult when an elderly relative doesn't understand (or doesn't want to understand) why something is necessary.

Things like catheters, bed pans and commodes must feel quite demeaning. I hate the way catheter bags are just slung on a hook on a hospital bed. I know it is necessary but I still hate it.

@GnomeDePlume finally you have something to work with and a plan is always a good thing. Im sending good wishes your way

@CaveMum I totally understand the catheter dread, I hope your DF gets a positive outcome. Thinking of you also.

I'm so sorry about this OP. It's our underlying concern - that what now amounts to 5 months of barely eating has caused permanent damage.

My mother is still on a medical ward despite the issues she was admitted for from rehab a month ago being sorted. They are considering tube feeding her now (which she would hate) as one on one feeding doesn't seem to be working.

However, her delirium is becoming more pronounced. All the tests have found no concrete cause and she's either asleep all the time or awake but confused. She doesn't think she's in hospital, not sure where she is really, but continually cross that my dad isn't following the thread of her conversations (such as suggesting that he's the one ill in hospital) and that he isn't taking her home with him. It's been nearly 3 months of this now and they're considering moving her to a 'delirium bed' - does anyone have any experience of this? I'm guessing that the focus is more on continuing care and one on one treatment so they can reanchor the patient somewhat.

What that does mean though is that she seems further from returning to the rehab, physio, mobility, and more reliance on catheter and bed pans. I feel so little hope that she'll ever get back to anything like normal again. Continence and mobility seem like such key things to hold onto, and she's lost reading and writing, listening to the radio. I just don't know how she can get back

@Borgonzola so tricky for you. Is there any chance of organising a ‘best interests’ meeting? Some ward doctors are relieved a family member request this as it means they get SW and OT involved and it moves on the ‘person needs nursing home care’ conversation.

@Borgonzola it is so difficult isn't it?

I am guessing that a delirium bed is set up so that the patient can't climb out of it.

My DM could probably do with one.

DM's delirium takes different forms. At the start of a visit she can seem quite lucid. As she tires she starts to get more disorientated. Sometimes she knows she is in hospital other times she is somewhere else.

The common theme is that she doesn't want to be where she is and if the visitor isn't taking her home then she will take herself home. This then puts her at immediate risk of a fall as she can't walk and is tethered to the bed by a catheter.

@BlueLegume a 'best interests' meeting would be useful for us as well. The ward wants DM gone but IMO she needs somewhere with onsite medical care. All the local NHS rehab units only have a visiting GP.

I am finding DM's anger difficult to deal with. Outbursts are often accompanied by shouting, swearing and even throwing things. DM is gone and we are left with an angry, frightened old lady who is a bit of a stranger.

@BlueLegume the issue is that docs appear to be convinced that delirium is temporary, as is my dad, and my dad is actually consenting to everything so far (though tube feeding may not go well), despite not thinking she's in hospital. So having Googled best interests, I'm not sure what the outcome would even be - everyone agrees they want her to get 'back to normal' but it's the endless lingering.

@GnomeDePlume my mum wouldn't try to get out of bed even if she could mobility is too limited and she's not a wanderer, she's just not with it. My dad told me that she called 999 in the first week of hospital - had t told me that at the time - as she was convinced she was in the middle of some huge police sting.

They're right or course, it could well just be hospital delirium mixed with the affects of not eating for months. But she's not reading, writing or listening to the radio anymore - her three main activities usually. She doesn't really do anything. She just seems to be lingering there being taken care of by nurses, there doesn't seem to be any action!!!

@GnomeDePlume the anger sounds terrible, I'm so sorry. Mum mum has started getting quite cross with my dad over small things but... this is nothing out of the ordinary! She also apparently told a woman in another bed who kept moaning at the nurses to be quiet which again is not out of character but quite forward...

@Borgonzola I know what you mean about the lack of doing anything. My DM is the same. She only starts trying to get up when she is riled up in fury.

The lack of communication is a worry. DM has now been declared fit for discharge back to the rehab unit. Move to take place on Friday. In the meantime planned blood tests to test her electrolytes haven't taken place but her knees got x-rayed with no explanation (she broke the top end of her femur).

Unfortunately, DB is not really helping matters. He gets cross, patronises or is actively rude to staff. He wants to be in control but still hasn't reconciled himself to the thought that NHS care is not set up to be controlled by patients let alone their families.

They are probably moving DM on so as not to have to deal with him!

DM is now at a lower ebb than she was last time she was in the rehab unit. I guess we now all wait for the next crisis which will see DM back in A&E.

@GnomeDePlume was she any more lucid in the rehab setting? It seemed more positive for us, though still with confusion.

I've realised the potential horror that is Christmas is coming up. We normally spend it with ILs as family Christmases have been horrendous in the past (joyless, tense affairs) and ultimately caused the estrangement between my brother and mother. This year I wanted to do minimal travel as I'll be 8m pregnant but I can't stand to think of my dad alone, visiting my mum then going home alone (he has a brother who is next to useless). My brother won't be going near them and I thought the best case scenario would be mum back in rehab but now with this 'delirium bed' god knows. I don't know how Christmas even works in hospital!

@Borgonzola 💐 what a horrible lot of worry when you are pregnant as well.

I am studiously ignoring the Christmas question.

DM was more lucid at the rehab unit. Unfortunately, by the time she went there last time, the not eating was entrenched. DM now has a heart murmur and has also had a stroke. Both possibly caused by the not eating (severe electrolyte imbalance).

I have got in contact with PALS as I do feel that the lack of communication from DM's HCPs is adding unnecessary stress to all of us. The ward acknowledge that DM lacks capacity to make medical decisions but are not telling DB and I anything to help us make decisions on her behalf. I have requested a 'best interests' meeting as suggested by @BlueLegume .

Let's see what happens next. As DD said, for a person who is bedbound, DGM does seem to get around a lot!

Have they ever come up with a concrete reason for not eating? I just cannot work it out. My mother's doctors seem to think her delirium is exacerbated by malnutrition and dehydration but still not moving forward with proper feeding and it seems to be a vicious circle.

And after saying that 'escaping' isn't an issue, she is actually trying to do that (despite 0 mobility) and so they're having to fit her with an alarm so they can catch her doing it. Aghhhh. I still just cannot fathom that this is simply hospital delirium

Dad had an appointment today to see whether he was able to have his catheter removed. They were at the hospital from 9.30 till 4pm. Dad hasn't passed enough urine for them to be satisfied that he can manage without the catheter despite his bladder being pretty full. However he has refused to have the catheter put back in so they are discharging him to come back tomorrow.

I get that he doesn't like the catheter but if the choice is between catheter or ending up hospitalized with another urine infection? My mum is being typically passive about it all and just saying "It's not what your father wants."

Have they tried either of your mothers on the meal substitute drinks like Ensure, @GnomeDePlume @Borgonzola ?

@Holesintheground she's got a bit of a gag reflex and said the drinks made her feel sick.

When I was going through all of this 10 years ago with my elderly great aunt she said 'they've given me all these drinks but I don't need them, I don't want to put on weight, you have them' I was a healthy and well built 25 year old and she was 88...

@CaveMum it's so familiar. My mother won't eat but cannot see beyond the end of her nose as to why it's not a good idea. My great aunt didn't want mobility aids in her house (and died of a fall at home). I guess the part of your brain that sees reason just ... goes?

@CaveMum that is so worrying. Urine retention can be very serious.

The problem with the silo approach in hospital is that they dont see the whole person. People also get moved around a lot. My DM is about to move to her 7th ward (in 9 weeks). This excluding A&E.

Hospitals dont have processes to deal with patients staying for an extended period of time.

Nutrition isnt seen as being important until it becomes a problem. Food is dished out and untouched plates get taken away. Because of changing staff the fact that someone hasnt eaten for a number of days can be easily missed.

@CaveMum , sorry it didn’t work out today with the catheter. My DMs sepsis started as urine retention, that then caused problems with the kidneys. I don’t want to worry you but the reality of not passing enough urine can be very serious as I’m sure you know. Fingers crossed tomorrow brings progress. Best wishes.

Thank you for the heads up @Anjo2011 urine retention is becoming a problem for DM. She has a catheter but it seems to get blocked.

In news that will surprise no one, mum had to call out the district nurse in the middle of the night as dad was unable to urinate. He’s now got a new catheter fitted. In typical martyr fashion when I asked mum how she was her reply was “we’re dealing with things as best we can”.

We’ll see what the hospital say when he goes back this afternoon.

@CaveMum add that to the cliche bingo card!