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.

Yes, I think Bluetrews has it right. Whilst she is actively improving they have to press on but if she takes a turn for the worse then it would be entirely reasonable to ask that no new intervention is started, unless it is for comfort.
I just meant that I found the staff sometimes seemed to look for good news to tell us, as though it was what they thought we wanted to hear. So we might get told about minor improvements in blood results which seemed trivial when Mum was barely conscious. Sometimes it felt like we had to drag the negative stuff out of them and it seemed like they were afraid how we might react.

Oh and you don't sound heartless. Anyone who has lost a loved one to Alzheimer's or similar will inderstand I am sure. I was very sad when my Mum died but also hugely relieved that the suffering was over for everyone.

You're the opposite of heartless MortyFide as you want what is best for her, and what you know she had wanted for herself.
I currently work with the elderly, primarily, and have worked in oncology. I have also lost both parents. I fully get that any life is not better then none at this stage. Not everyone can contemplate or comprehend this, so they still insist on pointless, distressing and painful CPR for themselves or their relatives.

Thanks so much, you're both very kind.

Mum was unresponsive on Tuesday and Wednesday but came around after that. She is very drowsy and spends most of the time asleep, only waking when prompted, and is able to comply with requests (to open her eyes, turn her head or whatever). I wouldn't call that "brighter" really, but compared to barely conscious I suppose it is.

I know everyone's experience is different, but I wish someone could say either that the small improvements are meaningful, things are no longer serious and she could make a good recovery; or that in isolation they all mean very little in someone elderly, weak and frail with the heart under strain, and in all likelihood she is only going one way and it's just a matter of time.

We seem to be somewhere in between.

Thank you both for your insight and kindness, I must be rambling like a fool and going around in circles but it is helpful for me to talk about it.

for you OP

I would want the same as your mum, it seems so wrong to keep someone going just because you can. Hoping for a peaceful end for your mum and hope it doesn't drag on xx

I think this is possibly the toughest part for you. You lost the real person quite some time ago, you have had time to get used to your eventual complete loss, and when it actually happen it really will be a blessed release for her and consequently you and your family.
Oh, MamaMorty, may you be free soon.

Thanks Liferips.

"Mama Morty" ha she'd like that! Yes, I think I have remained clear headed throughout because I have had to be very practical throughout the decline - watching my clever, spirited, sassy, beautiful, super intelligent mother start forgetting herself and become a totally different person. She was aware of it too, which was very painful for her. It's taken 3 years to get to the stage where she doesn't know me, so I think I am acclimatised to the new version of her - it's only when I think of the old her that I want to break down, so I just don't think of it. Even when I built her Life Story for the home, I did it as though it were a project for a stranger - because the idea of her going into care was so horrific I couldn't dwell on it, just had to do it for her safety.

I just have to get her to the end of this life, this shell of a life that she hates, see her over and deal with everything that comes after that. And THEN, I can drop the act and start properly grieving my beloved mum.

Today she is just the same - the positives being that she is off all oxygen but still maintaining 95% sats, infection markers down, awake some of the time and responsive, sugars low (a bit too low now, unbelievably), heart rate normal.

The negatives are that she is eating and drinking very little so she is still on fluids, that she has no balance to even sit in a chair, and had difficulty following instructions.

The antibiotics finish today, so they will keep an eye on those infection markers. We talked about a future care plan, about discharging her back to the home (probably in a week if all stays well and she is drinking more), and that she wouldn't want to come back to hospital for any future infections.

Sorry mum, looks like you're stuck going back to the care home and you've got to go on a bit longer, whether you want to or not.

OK, so if she has no sitting balance she will be nursed in bed in future (or hoisted into a reclining chair which is virtually the same for positioning.) This means that she will definitely get another chest infection in the future. It's good planning to agree on no further hospital admissions. And if the next infection is not treated you can guess the result.
If she won't drink she will need IV fluids, which you can't get (unless I'm mistaken) in resi homes. So that makes discharge planning difficult.
Next few days will show if the infection is gone for good.
Oh you poor love, MamaMorty. It's not nice, this limbo you are in.

Oh thank you, for that practical overview - ok, yes they were a bit concerned about the lack of eating/drinking (especially when I confirmed that mum usually has a good appetite and drinks plenty of water).

They seemed to have a perception that her mobility was better prior to this incident than it really was - I explained that it has been declining since last August, with her balance worsening even more over the last few months since being in care. So it's not really new.

Right, so chest infections likely to become a frequent feature then. As the original urosepsis was triggered by her not being able to empty her bladder properly, will she end up with being discharged with a catheter? She self-catheterised before the Alzheimer's, but eventually forgot how. I did tell the care home that and warned she was prone to UTI's, they were good at spotting them (they weren't to know that this one wouldn't respond to penicillin).

Oh yes, they said that she'd had some irritation around the cannula site, so they'd removed it...so I was baffled as to how she is getting fluids?

Obviously I never think to ask these things until after I've hung up, and it took me 4 attempts between 12.30 and 5pm to get through today.

Tricky with the catheter. Having one in increases risk of UTIs, but not having one will increase risk of incomplete emptying and therefore UTIs!
So they will have to do some careful weighing up of the risks.

They can always put another cannula in somewhere else. And it sounds like that will be needed if her oral intake is reducing.

Have they stopped trying to sit her out? This would be difficult without the correct seating - she'd need a tilt in space chair or a good recliner if she's not got good sitting balance. I'm guessing they might need to hoist her out? Equally, I can see it might be easier for her if she is nursed in bed.
Not being upright will increase the chest infections, yes. It might be worth asking if ABx will be used if she should get another, or is it time to let her go, acting in her best interests? (Useful phrase to use.)
Do you have medical POA? That could be useful when it comes to these decisions.
(Hoping I'm not a complete Shipman with the ABx thing! - pretty sure this is done!?! )

A complete Shipman haha! Actually I discussed the infection issue with the hospital yesterday - I said she would definitely not want to go back in for further infections and would rather let nature take its course.

Yes, I do have medical POA. I personally think she needs the catheter - despite the equal infection risk either way, at least there is some dignity in that if she is becoming incontinent (I don't know if she is or not, she hasn't been, but after this massive infection...).

I don't think they are sitting her out now, no - she had a little sit on Sunday but was exhausted in minutes. At least at the home they have all the right gear to hoist her etc.

Good God, if she has any idea what's happening she's going to be fucking livid. A hoist! She rather nail herself to the floor. I hate this responsibility, my only comfort is that she trusted me to do the right thing for her and I'm confident that I am.

You are, rest assured.

Thanks Bluetrews.

Well, the doctor was pretty short with me this afternoon - I get it, they're busy and I call every day to ask questions so maybe they think I'm a PITA. But I'm always polite - apart from perhaps day 2, when I got annoyed that one doctor said she was confused and"out of sorts" due to the UTI, and I said rather sarcastically that it was more likely to be due to the advanced Alzheimer's. I just felt frustrated that they didn't seem to know, and I'd explained it and its right there in front of them in the notes. I didn't mean to sound snarky but that doctor has not come back on the phone to me since, it's always one of the others even if she's the one whose seen mum today!

This was one of the others, pleasant but quite abrupt and in a hurry. So I got very little information other than that there are slight improvements, I wasn't given the chance to ask anything because she quickly said that mum was brighter and talking so did I want to try and speak to her.

Well, she didn't sound bright to me. Her voice sounded weak and slow and she could barely form words, she was so drowsy. She repeated my name though, which was great - hopefully she remembered me in that moment. I chattered a little bit but she couldn't hold the phone up for more than 30 seconds (doctor said she held it for her), and after initially forming a few words (mostly just acknowledgement noises) her voice was indistinct. But I did manage to say keep drinking mum, the more you can sip the sooner you can get out of there - and I said I love you and can't wait to see you, and she managed to murmur "I love you too darling" before she sort of sighed and went silent.

I suppose realistically they can't discharge her back to the home until she's drinking can they? As they can't administer IV fluids there.

Yes, she will need to be taking fluids.
Glad you got to speak to her, hope it gave you some comfort.
She still sounds very unwell.

No change, still very very weak, still not really eating or drinking, and bloods show she is dehydrated despite fluids (is that normal?).

They did say that the physio had managed to get her sitting on the edge of the bed (briefly), which is frankly a miracle as she could barely do that before. The aim is to get her transferring from the bed to a chair, but again she was struggling with that before she was ill anyway. I did explain that to them.

They do believe she will need a fixed catheter now, accepting there was a risk of infection and that it will end up being an ongoing issue. We talked briefly about the likelihood of her being discharged, which will be reviewed on Friday, and what her level of care needs may be if/when that happens - I mentioned the potential for Continuing Health Care funding and the doctor has noted it down to be discussed at their meeting tomorrow.

As long as she needs IV fluids she won't be going anywhere - they say they are giving her a few more days to get some strength back now the infection has cleared.

In the meantime my tussle with the local authority has begun, they're asking questions about what mum was doing with her own money 3 years ago...

Oh lordy.
I would have thought she'd qualify for CHC funding, from what you've said.
Us physios are good, but we can't do miracles. It's great that they are having a go.
Hang on in there.

I know, they are being very thorough and seem determined! But yes, bless them, only a miracle could get mum transferring more than a couple of feet. Her balance and leg weakness was getting worse and worse and she had repeated falls, 3 in a week sometimes.

In fact the care home requested a visit from the community physio, but I got a letter from them in February saying she couldn't have one at the moment. Was a bit mystified by that, I guess it's down to resources. At least she's getting some physio exercises in hospital!

I think she should qualify for CHC, but it's quite difficult to tell. I'm not sure who instigates it either - if I hadn't mentioned it, would they? Maybe if someone is state funded, it all happens behind the scenes - mum is self funding.

Where I worked before (cancer setting) it was discharge nurse who would get the forms out, and I would have to fill in a bit, or at least discuss the movement part of it with them. Social workers were rare, but they may be involved in this in some settings.

Sorry to hear that the financial issues are difficult MortyFide
I found all that very frustrating and confusing. Our hospital had a discharge team that helped with all that side of things thankfully. It is possible that they have been redeployed at the moment of course but I would think that most Trusts are keen to avoid delayed discharges in the current climate so I would hope someone is still working in that area. I would ask if there is anyone who can support you. If it is an Elderly Care ward it must be something they deal with often.
How are you bearing up? Do you have support? Are you eating and sleeping enough. Its such a stressful time so please don't neglect yourself.

I'm OK, I think - still working although occasionally have trouble maintaining concentration. My DH is a good support emotionally, and my brother does his best from thousands of miles away - but I don't have anyone really who can help me wade through the funding worries, I'm just blindly bumbling my way along and hoping it all works out.

Mum had enough money in total to fund for 3 years, but three quarters of that is in her property - which of course now isn't sold. So we've burnt through all the liquid cash, and I'm hoping that the LA will agree to a deferred payment. I was warned that they would be very aggressive about it, but ultimately they won't see her out on the street as long as they're getting their money back...will they?

CHC would certainly solve that headache.

Discharge teams will be working as normal, they are with us.
Can you imagine the public outcry if they turned the elderly out on the streets? I'm not aware of this happening!

Haha I certainly hope not - but I'm so conditioned to everything going wrong that I don't expect anything to be straightforward!

The hospital actually called me today, to say that although clinical signs are all pretty good, and she's drinking a little more with constant encouragement, she's still very weak and her "base line is way off" - I assume that means she has no balance still.

The discharge planning team are handling it now - they are seeing whether mum's existing home has capacity for her on the nursing floor (I'm sure they have), whether they can accommodate her new needs, and if so she'll be discharged to there and she'll be assessed for CHC by the home after she's had some time to get stronger.

They probably mean she's not at her baseline, ie she can't move as well as she usually does. It will be very hard for her to improve physically with her mobility if she's getting little nutrition and she has been in bed for a couple of weeks. Therefore she will need a higher level of care than before.
Good that they are planning.