DM rushed into hospital and I feel so helpless

[MortyFide]

DM is 82 and in full time care with advanced Alzheimer's dementia. She's been declining slowly since the new year when she went into a private care home, with failing mobility, increasing frailty and constant falls.

Last night she lapsed into unconsciousness with shallow breathing, and was rushed to hospital to find that she was septic, with a "significant" UTI. She had almost finished a course of antibiotics at the home but her blood sugars were through the roof - turned out she was in retention and when the hospital catheterised her, pus poured out according to the doctor. Her chest x-ray was clear but she was so sick they warned that she might not last the night...but she did, and when I called this morning she was awake and had taken a little food. I chatted with the doctor who was so kind and helpful, I gave her some history, and she was cautiously optimistic that DM can get through this - with repeated warnings of course that she is weak and frail, and things can change rapidly. There is a DNR, and if DM deteriorates she won't go to critical care and won't be ventilated. I said DM and the family were fine with that, we discussed it all years ago.

Her oxygen sats are low and she has been tested for Covid19, but we won't have the results until tomorrow. They told me to call for an update this afternoon, so I did - but the phone was handed to someone who said she wasn't a nurse. This person said DM was "ok", had been "sitting in the chair" so she was a bit tired, and that I could speak to her. She passed the phone over and all I could hear was mum moaning, crying, saying "they're hurting me" and unable to speak properly. I tried to soothe her, told her she was ill but would get out soon, she just has to grin and bear it. She said my name, and I told her to just rest her eyes and sleep through everything.

Eventually someone took the phone from her and I asked to speak to the doctor for a proper update on her condition (is she responding to ab's, how's her oxygen, how's her temp, how's her kidney function, why is she slurring her words etc). She found the same doctor that I spoke to this morning, who told me very impatiently that there was no change since this morning (OK, but SHE told me to call again). I asked why she couldn't speak and she said patronisingly that "elderly folk do get confused when they're as unwell as she is." I said she's confused because she has advanced Alzheimer's, and that didn't explain why she couldn't speak. The doctor simply said. "Yes."

So I don't actually know how she is at all, just that she is "not a well lady" - so why did the nurses make her sit up in a chair then? Why can't she stay asleep absorbing IV ab's, insulin and glucose in peace, since she was septic less than 24 hours ago?

I just feel utterly distraught, normally I would be there holding her hand and speaking for her. I can't do anything, if she dies the last time I spoke to her will be when she was sick and frightened and I wasn't even with her.

Hmm sounds really similar. I believe the "treatment" only consists of the antibiotics for the UTI and chest infection - unless they've still got the insulin infusion going, but I didn't get a chance to ask.

The doctor today - the 4th one this week - was lovely, but a bit strident/ebullient and full of optimism that mum had responded to some instructions, acknowledged that she was in hospital and had tried to speak. She rattled off her spiel, said something about it being an improvement but that we weren't out of the woods, and then she was gone. I had all kinds of sensible questions lined up but I was rather thrown off track.

I feel like I'm going to hell but if she rallies, I'm terrified of her being sent back to the home to face months of immobility and indignity and probably not even being verbal for a few more months. I hope to God she's preparing for the end and it doesn't take too long for her.

Oh sorry yes, work have been excellent - very kind and supportive, quite relaxed and flexible.

How sad! Such horrible times atm! Surely they wont send your mum back to the home when she has been on a positive covid-19 ward?

I used to work on an elderly ward at the hospital and saw a lot of people at the end of their life! Don't worry she will have lots of nurses and HCA's talking to her and making sure she is comfortable.. I had many occasions when I would sit with a patient and have a good chat, talk to them about their family and things they loved (often with dementia so did not speak back) and I would go back on the next day and they had passed in the night!

I hope that does not upset you but I just want you to know your mum won't just be sat alone xx

No its fine, thank you! I'm really grateful. The hospital have been lovely and reassured me that they have been telling her that I call every day and send my love, there's even been a flicker of acknowledgement. On the 2 days where she was all but unconscious they assured me she would not be on her own.

I'm taken aback by a development that she's "improved" today, but I suspect it's a red herring.

Mum always said she didn't want any fuss, wouldn't want people crying at her bedside, didn't really even want a funeral, she just wanted a quiet no nonsense end to it all. By timing this right in the middle of a pandemic, I think she has worked it just right...

I know this probably sounds a bit mad Morty and I am normally not in the slightest inclined to anything woo, but I do believe that sometimes people choose when they are ready to go. I've known several people who have seemed to wait for a particular event to pass, or to see someone. So I can believe that your Mum has some kind of control of the timing.
I'm glad the nurses have been able to reassure you. It sounds like she has a very caring team around her. Its a shame the doctors haven't been more consistent but I imagine their work patterns may be a bit strange at present. My neighbour is a doctor in our local hospital and I know she has been working more shifts but shorter ones as they have been finding it too tough to do long shifts with all the PPE on, and she's been working different days to her usual ones too. So that's maybe why you are getting to talk to a lot of different people. I know that doesn't fix the problem but I sometimes find things easier to deal with if I understand why they are happening.
Take care of yourself and keep posting if it helps. I think a lot of people are thinking of you

Well, mum has definitely rallied today - she's brighter and talking a little, her oxygen levels have improved and she has even taken some food.

But as she was stable enough for a CT scan, they found that she has multiple and significant blood clots on both lungs, which is creating backflow to and pressure on her heart.

So although things have improved and she is responding to treatment, they warned me that she is still "very unwell" and we are not out of the woods yet.

Still, looks like it's not quite mum's time yet!

Such a hard stage for you.
I got three 'come in now' calls before my DMum died.
May she go softly into the night when it is time.

Yes, thinking about it I've had three "she may not get through the next 12 hours" calls. And now three "She's much brighter today" calls too!

I don't know what to think really. If she's going to be discharged that gives me a whole fresh headache as I'll have to go through the financial argument assessment with the local authority because she's run out of cash and needs a deferred payment while her property is still unsold - plus nursing care at her current home is way higher than dementia care, so I may have to think about finding somewhere else anyway as her needs will change so significantly. We're talking going from £1290 a week to over £1500. It's certainly lovely but even so!

She'll be so annoyed, she'll be completely immobile and will loathe going back to the indignity of a catheter bag and only getting out of bed to be hoisted into the bath. She'll HATE it. And I'll hate it for her. She'll wish she'd gone when she had the chance!

I'm so sorry OP.
Been there. Lost my mum 2 months ago, exactly the same way.
But I was lucky enough to be able to be there.
I slept by her side in the hospital holding her hand.
We stopped all drips etc. as well.
We just wanted her to go peacefully and be out of misery and pain.
She held on for 5 days!
I can't imagine what it must be like not being with her.
But, she wouldn't know any way.
Sending HUGS, it's a horrendous time!

Thanks HellsBells...at the moment they are more optimistic and I am trying to plan for her care needs to change if/when she comes out. The overall sensation is not that she could go at any moment, far from it - she's definitely improving. Yet they say she's still seriously ill, so who knows whether it'll be days, months or years???

Hi op, I am no expert but work in a hospital. We are allowing 1 family member in in exceptional circumstances eg end of life or if the patient is receiving bad news, but as your mother is very confused I would ask if you could possibly go in for an hour or so to try and reassure her and give her some comfort. It is at your risk and they should provide you with the PPE to sit with her. Also with reguards to sitting her in a chair she may have bed sores so we HAVE to reposition every 2 hours depending on the type, trust me it is for your mum. If I was you I would just keep ringing everyday maybe around 2pm after lunches and ward round so someone can give you an update and it's also a lot calmer at that time. Hope everything turns out ok

Also if you could, your mum will probably have a TV beside her bed with a phone if you could get that number you can call her whenever you want, The nurses or HCAs should prompt her to answer and you may feel a-bit better speaking to her, even if she is a-bit confused X

They are going to do a video call for us using an iPad later today. She does have a phone next to her but she isn't able to answer - even if she could remember what to do to pick it up, she is too weak to hold the phone and doesn't know who I am. She didn't know who I was when I phoned her in the care home a week before she fell ill, so she's even less likely to want to talk to a stranger now. She isn't really able to make herself understood.

If the doctors/nurses say my name she does acknowledge it, although she doesn't think she has a daughter. I want to go in person but they are doing everything possible to talk me out of it!

Aw bless her. I wouldn't wish that sort of life on anyone for their last days and have a DNR in place for anything that would leave me seriously debilitated myself. Nobody would want to exist like that. Hopefully she either makes a really good strong recovery or else passes away peacefully.

They let me talk to her on the phone today, the doctor kindly called me and then took the phone to mum - she can't really form words very well, but I could understand a couple of sentences.

I have mixed feelings, on the one hand I'm delighted that things are improving of course, but at the same time if she recovers, all she's got to look forward to is being nursed and fed. I was so pleased to think that it was nearly all over for her, but she's stuck with a crappy quality of life not knowing who anybody is, thinking her parents abandoned her in a convalescent home in 1947.

She does have a DNR - but it's do not rescuscitate, they only stop proactive "treatment" if there's no hope. They obviously feel that there is sufficient improvement to continue.

Dementia is so cruel.

My grandmother had it for the last 20 years of her life, and it was heartbreaking to see her thinking her family had abandoned her when we were very much around but she had no idea who any of us were. We experienced the roller-coaster of doctors/carers wrongly thinking she was in her final days, several times over. She eventually died, aged 95, peacefully in her sleep.

Thinking of you, OP.

Still no change really - they say she's sleeping mostly but can be roused and can converse to a degree. She's also eaten a bit of yoghurt apparently, and she's off the oxygen completely - she objected to the nasal prongs but is managing to maintain her oxygen now anyway.

But her heart is under a lot of strain and the big clots are still there on the lungs, so whilst they consider there to be tiny improvements in her condition, they still describe her as "very unwell".

I learned yesterday that my aunt, mum's younger and last surviving sister, passed away on Friday night. So I've been mentally telling mum that she outlived them all - she is free to go!

Oh MortyFide so sorry this is still ongoing.
Very hard when quantity overtakes quality.
Totally understand your wish for this to be resolved. And we all know it's only going to happen one way. But it is going to happen, and likely, IME, she will not leave hospital.
It's really rough on the family when people have a strong heart that just carries on, and on, and on....

Thinking of you MortyFide
It is a horrible situation. I hope your Mum can be at peace soon.

Actually Bluetrews, unlikely to leave hospital is the kind of thing I need to hear. I don't want her to be suffering - when they tell me she's "a bit brighter" I'm just filled with dread that this will drag on and on. She's never going to fully recover is she - 82 year old semi-mobile old ladies with advanced Alzheimer's don't bounce back from something this catastrophic, which was the word they used when she went in. She'll be heavily medicated with insulin and blood thinners, she may never be able to speak, feed herself or go to the loo voluntarily again. Having Alzheimer's is bad enough, being 100% immobile, non-verbal and incontinent is worse.

Thank you MrsAvocet. I wish they were able to be a bit more forthright - yesterday when I referenced being "discharged back to the care home" there was a thread of something in the doctor's voice, a kind of surprise that I might think that was ever likely to happen, but she felt she couldn't say it. They just keep saying, there are some small improvements but we're not out of the woods, or there's a long way to go, etc, but there are good signs all the same.

Today the nurse said they'd got her sitting up for a very short time, but she was exhausted in a matter of minutes so they put her back in bed. She'd eaten some breakfast, but only ate a pudding for lunch (good old mum, she taught me well - I've only eaten jammie dodgers today too).

That doesn't sound like a woman on her way back to some kind of fitness to me, but I guess they are trained to focus on the positives - and as long there are tiny improvements they'll keep proactively treating instead of moving to palliative care.

Oh mum. I wish I could sit and chat to you.

I think sometimes the hospital staff are so focused on getting people better that they think that is what everyone wants to hear. We had to actively ask to talk about treatment limitations and a DNAR for my Mum and they seemed very surprised that as a family we had already discussed it. They kept talking about "well we will just try this" even when it was clear that they were just tinkering at the edges of a massive, insoluble problem. I guess it is what they are trained to do though, I don't mean to sound ungrateful. That's why the palliative care team were such a breath of fresh air when they were finally involved as their idea of success was so different.
You have it much more difficult though. These are hard conversations to have face to face, and it must be so much worse on the phone.

Well, we have had the DNR conversation and I was very clear that the outcome mum would want for herself, was for it to be over swiftly, as we'd discussed it long ago. Even her best friend has said to me that she told her 2 years ago that she wanted to die.

But I suppose now they've seen some improvements, such as no longer needing oxygen, they are focused on being proactive rather than withdrawing treatment. I assume they won't turn to the palliative approach as long as she is responding, and she has been, albeit slowly. She is still on the antibiotics, the blood thinners, insulin (injections, they stopped the infusion), and fluids - nothing else to my knowledge.

I can't ask for them to stop treatment now can I. I wish she could see my face so I could talk to her, even if she sees me as her sister and doesn't know where she is, she'd be honest with me about how she feels. With medical staff she might be putting on a brave face and being sweet.

The antibiotics will finish at some point. If she worsens again, that might be the time to discuss no further active treatment.

I never thought of that, it didn't occur to me that something might change when the antibiotics finish.

Thank you. I probably seem heartless talking like this, as though I "want" her to die - but all I want is what mum would want.