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Elderly parents
Original poster

Where do we go from here?

510 replies

GnomeDePlume · 16/10/2024 23:25

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.

OP posts:
Original poster
GnomeDePlume · 20/11/2024 15:10

@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.

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BlueLegume · 19/11/2024 18:36

@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 · 19/11/2024 17:43

GnomeDePlume · 19/11/2024 06:40

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.

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 Sad

Anjo2011 · 19/11/2024 15:52

@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.

Original poster
GnomeDePlume · 19/11/2024 14:17

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.

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CaveMum · 19/11/2024 10:27

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.

Original poster
GnomeDePlume · 19/11/2024 09:28

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.

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WinterFrog · 19/11/2024 08:23

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 💐

Original poster
GnomeDePlume · 19/11/2024 06:40

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.

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Original poster
GnomeDePlume · 18/11/2024 09:01

@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.

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WinterFrog · 18/11/2024 06:41

@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.

WinterFrog · 18/11/2024 06:35

I am very sorry for your loss @Anjo2011 💐

Holesintheground · 17/11/2024 22:16

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.

PermanentTemporary · 17/11/2024 21:17

@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' Hmm 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.

Original poster
GnomeDePlume · 17/11/2024 21:00

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.

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CaveMum · 17/11/2024 15:04

So sorry for your loss @Anjo2011

PotterHead1985 · 17/11/2024 13:06

Anjo2011 · 17/11/2024 10:14

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.

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

AInightingale · 17/11/2024 10:20

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

Anjo2011 · 17/11/2024 10:14

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.

Original poster
GnomeDePlume · 16/11/2024 09:41

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.

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Anjo2011 · 13/11/2024 22:24

@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.

Original poster
GnomeDePlume · 13/11/2024 22:01

@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.

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Anjo2011 · 13/11/2024 21:51

@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.

Original poster
GnomeDePlume · 13/11/2024 20:33

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'.

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Original poster
GnomeDePlume · 13/11/2024 13:37

@Anjo2011 I am so very sorry.

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