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.

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.

@Borgonzola 💐not eating certainly has severe impact. Knocking the electrolytes out of balance. However most of the symptoms are physical I think.

The catering in hospital seems to be aimed at people who are only having a short stay. Not eating much wont have too much impact. However, over a long stay, not eating can have a huge impact. Uneaten food gets tidied away and I'm not sure that any attention is paid to what has or hasnt been eaten.

I find the delusions very strange.

Before this I thought hallucinations, paranoia etc would be dramatic things. In my experience now they are quite mundane. An insistence that XYZ happened or was present. DM was very sure that one part of A&E was an industrial kitchen.

The mundanity of delusions, hallucinations, confusion and failing memory makes them easy to miss for staff. Especially as staff are changing all the time with different shift patterns. Another problem of the siloed treatment ward system. If you are in a diabetes ward, that is what they pay attention to. A member of staff was trying to move DM in her bed quite unaware that DM had a recent leg fracture.

If I am honest, I think DM is dying by degrees. As @CaveMum said, there is a domino effect.

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.

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

@Anjo2011 💐so hard when you are running yourself ragged trying to support two people.

I know others on this thread are in a similar position.

We are spared that at least.

I suppose the answer to the question 'where do we go from here?' is nobody knows.

DM is likely to be on the roster to move to rehab/assessment as soon as her chest infection is under control.

After that I predict a repeat of the cycle. There will be another health incident which will land DM back in A&E. With each go around DM's health will decline further.

But there isn't an alternative.

As a society we don't really think about/talk about this stage in life. In previous ages this stage was probably shorter as infections which didn't get better on their own would carry the patient off. Pneumonia used to be known as 'the widow's friend'.

@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.

@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.

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!

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.

Thank you @Poffy . We aren't yet at that stage but your message prompted me to check for this team at our local hospital.

DM had a good day yesterday. ABs are doing their work for the various infections.

@WinterFrog that's good that you are finally seeing a way forward. I hope your DM is able to settle quickly.

Now that ABs are working, DB is expecting the push to get DM moved on to somewhere else will start again. As DB has said, DM's problems are chronic rather than acute.

@Anjo2011 we see similar care standards in our hospital. I will be in this afternoon. I am fully expecting 'Sunday service'. Staff are stretched too thin and lack the authority to actually do anything.

Pneumonia, I've heard it described as the old man's friend.

It's very hard isn't it, keeping people alive because we can (and are obliged to) without consideration of quality of life. I think I would / will find this situation harder to cope with than grieving the natural loss of a loved parent.

Just found this thread. Sending my love op. I seem to be in a similar cycle with dm at the moment. She's just out of a 2 week hospital stay due to bradycardia. The decline both physically and mentally was quite shocking. Incontinence and weakness/difficultly walking etc (and she wasn't amazing at that to begin with due to needing new knees and heart failure) and the short term memory has gone kaput. She is slowly regaining movement and strength and seems to be doing better incontinence wise, the memory though... and I am just here waiting for the next thing. It's awful hard.

@PotterHead1985 💐the memory issues are frightening arent they.

Spent this afternoon with DM. Yesterday she spent the morning in her garden. Today she was in Yorkshire looking for her brother. She has left her suitcase somewhere.

DM hasnt left her hospital bed but was absolutely definite about the above.

The ward DM is currently on want her moved out. I dont blame them, it is an acute ward. DM doesnt have any acute issues for now. Therefore she is bed blocking.

Then where? We are back where we were 3/4 weeks ago. DM is likely to be moved to a rehab unit when there is space.

Is rehab even feasible? DM is still not eating significantly. In the 3 hours I was with her today, DM barely moved. She hasnt just lost mucle tone, she has lost muscle.

@GnomeDePlume its so difficult to watch. My DM says similar and talks about dead relatives a lot. I don’t even know if she knows I’m there, she knows it’s me but the majority of the visit is just confused conversation and going to sleep mid chat. Does your DM have many/any lucid moments? Sending you good thoughts and wishes, you can’t do any more than you are doing.

Don't want to alarm you OP but I was watching a video where palliative care nurses mentioned that talking about journeys and suitcases and travelling and so on is sometimes a sign that an old or very ill person is reaching the end. I know that you probably feel very conflicted atm. A slow decline is torture to witness but so is the prospect of losing your mother. It's all horrible.

@GnomeDePlume unfortunately as you’ve discovered a hip/leg fracture is a very significant injury at your mums age. You are right she will be losing muscle mass as length of immobility increases that makes it harder and harder to move well a real catch 22 situation. Delirium and post operative cognitive decline are both very common too in this age group and are made worse by the lose of normal routines etc.

Has your mum been seen by either the orthogeriatric team or a general geriatrician? It sounds like she might benefit from a comprehensive geriatric assessment. Looks at loads of different elements of functioning like balance etc, rationalises medication and considers ceilings of care and limits of escalation. Worth asking the ward staff if this has been done

@Anjo2011 it is hard isn't it. I guess failing to really know close family is the next and most heartbreaking stage.

DM is so very tired and lost. She wants to go 'home' but I am not sure if that is her bungalow or her childhood home which she has been talking a lot about.

When DM talks about things her timelines get very jumbled up.

@Deanefan thank you for that tip. I will try to speak to someone first thing.

I think residential care is probably the only viable option for her - it would present a huge burden on you to try and help her with living at home.
I would start working towards a financial plan that enables that
Do you have Power of Attorney? It sounds like she's losing or lost mental capacity so you need to take over to make the best decisions on her behalf
It's very tough - I've been through something similar recently.

Thinking of you @GnomeDePlume 💐

So sorry OP, I recognise so much of what you're going through.

@northernsouldownsouth we do have LPAs thankfully. DH had the experience with DMIL and no LPA.

Now waiting on the hospital to call me back with the next installment on DM's migration round hospital departments.

I do agree that residential care will be the best place for DM. Being somewhere with some of her own things would be best for her. DM will be self funding. There is a really nice looking place in her town.

To add some humour to the situation.

DB gave me the number for the ward DM is on. I phoned it only to find out it was the Maternity unit! Both ward manager and I agreed that DM, at 85, was unlikely to be in their care.

My Dad went onto hospital after a fall (because my parents hadn't adapted their house) was in hospital for weeks, got covid so couldn't do physio and was never the same again.

Dad, when he'd recovered from covid, ended up with a really sweet tooth and guzzled sweeties and cakes. Would it be worth trying them? Just thinking if she's eating very little then they've got a lot of calories.

It's worth trying anything Horace. My dad still loved a bacon butty in his last couple of years, after the dementia diagnosis, and occasionally people delivered generic advice about how he should eat healthily. I was relieved he would eat anything at all, and glad there was something left in life he enjoyed when most other pleasures were now out of reach. I would get some sweets or little cakes and offer them.

Sadly DM, previously a keen biscuit eater, is no longer interested. Same for her previously favourite sweet treat.

We really have tried. At the start of this DM would make a reasonable try at food but now she barely takes a couple of mouthfuls.

DM has spent her first 85 years being told to eat less. Now she is being told to eat more it doesn't compute.