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.

The maternity ward comment amused me @GnomeDePlume You really do need to look for the humour wherever you can in such a stressful situation, don't you?
My mum is actually eating reasonably well at the moment, but I resonate with an 85 year old having been told all her life to eat less. Born at the beginning of the war, rationing being part of life into their teens, gaining weight being a sign of absolute decadence.
These habits are so hard to break. My mum was very controlled ( and tbh quite contolling) about food. Even this year when there's been concern over her losing weight, she'd take one biscuit and then tell me to put the lid on the tin ( in case, God forbid, she'd go mad and indulge in a second one!)
As an aside, my DH, unlike the rest of the family, is quite 'curvy', and she'd get the biscuits out then ask me if he was allowed to have one.

Good luck with the continuing mother migration @GnomeDePlume The homes we've looked at have said they will come to meet mum in the ward to assess her. They will take her anyway, no doubt, but it's about which floor she'd be on ( they have general residence, and then dementia/nursing/care floors) Not sure if my mum's needs class as nursing care or not at the moment. She still thinks it's temporary and is adamant that she'll be better than before. The OT was trying to encourage her to be realistic but I spotted the glint in the eye and the set of mum's jaw which are oh so familiar!
Continuing to wish you and everyone here all the best!

Horrible visit with DM last night. This was the first time she hadnt been certain of who I was. She was in the grip of delirium.

DM wanted to leave with me and was making some effort to do this. I had to wait until a member of staff was around in case DM tried to get up unaided.

We are back to waiting. But I'm not sure what for. Assessment? The next health crisis? DM is not currently scheduled for a ward move but at the same time I dont think she is currently receiving any specific treatment.

I'm so sorry, @GnomeDePlume That must be really difficult! Who have you been able to talk to regarding her care? Is there a frailty team at the hospital? Has she been seen by a doctor recently on the ward? It does seem that the care and nursing staff chug along doing the obs, issuing medication and keeping them clean, watching for sores etc ( not dismissing the work involved in that, of course) but with no real plan in place.
It's really hard seeing this decline, and the not knowing is so stressful. It would be good for your stress levels to have an idea of what those in charge of her care are thinking about it, I think.
Hugs 💐

I bought some little Christmas cake bites in Waitrose yesterday as I thought they might appeal to my DM who is in the same situation re appetite/hospital.

A nurse there told me sweet things usually work best with the very old who have gone off food.

@WinterFrog nobody seems to be responsible for DM. This is the frustration. As you say, the care team just chug along. DM isnt on the the right ward for her needs but I'm not sure there is a 'right' ward.

DB (named as NOK) seems unwilling to try and push things along. He is worried that DM will be pushed out to one of the satellite facilities which will make it difficult for him to visit. Given he is doing the heavy lifting regarding visits 6/7 during the day I'm not sure I can argue with him on this.

I suspect that last night my presence was just disturbing DM more. I had somehow got mixed up into her delirium dream.

I will be visiting again tomorrow night but will aim to leave sooner. The longer I stayed, the worse DM was getting.

Is this sundowning a PP mentioned?

My mum age 78 until 3 months ago was working, driving, totally independent.
She then had a stroke and was in hospital for a couple of weeks, she then got out of hospital and her first night home fell down the stairs and broke her neck. She went back to hospital again for another couple of weeks. She's now home but is so different. Can't go upstairs, can't be left alone for long and is very confused. It seems to happen a lot after an older person has an illness and hospital stay.

@ilovepixie 💐 for your mum and you.

It is so horrible isn't it.

The hospital atmosphere especially in an acute ward is so disruptive. Obviously a lot of it can't be helped. However, last night it was very noticeable just how loud some of the staff were being.

Loss of routine, familiarity, control are difficult enough for the hale and hearty. Much, much worse when elderly and unwell.

@GnomeDePlume im so sorry to hear the update, the delirium is extremely upsetting to see and listen too. The nurses just say this is ‘normal’ for the environment. I have found them reluctant to discuss what is actually happening. Did she recognise you?
My DM has been in for four weeks, I had a meeting with the Dr yesterday, there has been no improvement in this time. She has an ongoing infection, a bigger and bigger catheter, now added in she has a severe kidney injury. The IV antibiotics have been changed yesterday, the next couple of days are crucial, she advised if no improvement they will withdraw treatment. She is not eating or drinking now. The difference in her over a couple of days is a shock.
I agree that there is no magic fit in terms of the ward, they are all firefighting nothing is pro active. If you can try and speak to the Dr about further steps and what is the plan moving forward. It’s like wading through treacle. My thoughts are with all of you, our stories are all so similar. Look after yourselves.

Sorry to read your update @Anjo2011. Your poor dad too, he is very old and vulnerable to be dealing with such a fast-moving situation.

@Anjo2011 I am so very sorry.

I have a question:

Does anyone know how we can get DM's capacity to make medical decisions assessed please?

While the ward DM is on has copy of the LPA naming DB and I, they (or at least one of the ward managers) are still saying DM has capacity. Neither DB or I want DM frightened into accepting procedures simply because she is too frightened to say 'no'.

@GnomeDePlume I would ask for a meeting with the Dr as your first port of call, if they can’t help they should be able to point you in the right direction. I agree that when a patient is very confused it is not sensible for them to be making important decisions.

@Anjo2011 Thank you I will try to do that. Unfortunately so far requests have been ignored.

I do worry that DM could be very easily manipulated into making a decision because someone has suggested XYZ treatment or procedure could make it possible for DM to go home. All DM would hear is 'go home' and would consent to anything.

It isn't easy for hospital staff but they can get caught in a 'try everything' loop even if it has little chance of success and much chance of causing more pain and distress.

@GnomeDePlume yes absolutely getting any kind of direct answer is much harder than it should be. It’s like an assault course. There must be someone who is managing the ward, express your concerns and request a
meeting or at least a phone call from the Dr. Since my DM took a turn for the worse I have had two phone calls from her Dr keeping
me in the loop, this has only just happened after one month in hospital. Apart from that as I said in a previous post communication has been dire. Your DM is very lucky to have you in her corner. Sending good wishes.

DM now has a heart murmur though neither I or DB really know what this means. Also waiting on results of a CT scan of her head.

The hospital are still acting as though DM has full capacity to understand her treatment. All this despite DM not consistently knowing that she is in hospital or on the increasingly rare occasions when she does know this she doesnt know why.

My DM passed away yesterday, so many complications from the infection. She was admitted after a fall and otherwise was relatively well. Four weeks in hospital presented one complication after the next until it all became too much. Thinking of you all and your own situations.

Very sorry to read your update @Anjo2011 . Must be a terrible shock for you all to see such a decline in four short weeks. 💐

Oh I am so sorry for your loss. Hopefully you can find some comfort in the fact that she is at peace now.

So sorry for your loss @Anjo2011

I am so sorry @Anjo2011 . This has happened in such a short space of time to all of you.Thinking of you and your family.

@GnomeDePlume there needs to be a specific decision in mind for which you think she doesn't have capacity. So she might have had capacity to consent to that CT scan because it's not a very complicated decision - yes to 'help the doctors' no to 'not help the doctors' If they have a medication change or surgery or something else in mind, you could certainly raise that you think she might not understand the full picture. Same if they're talking about discharge home with/without a care package.

Ideally, be there at the ward round.

So sorry about your mum @Anjo2011
Things can happen so fast after something like a fall. I hope you're as OK as you can be.

I am very sorry for your loss @Anjo2011 💐

@GnomeDePlume none of this is getting any easier is it? The mental capacity act seems to be very complex. In our experience it was when the occupational therapists got involved, that they started looking at mum as a whole person with varying degrees of capability and understanding.