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.

Ah this is so traumatic and frustrating for you. No advice or answers sorry just wanted to offer sympathy. What a very hard situation for both of you and exacerbated by these awful lockdown conditions ☹️

I suppose the glimmer of hope is that the doc was cautiously optimistic. Not sure they would give you false hope at this time so try to hang in there. And I have had elderly relatives with UTIs before so I can relate to the worrying change in demeanour and general confusion.

I hope she does improve and you get some positive updates soon.

Nothing to add but just want to send you some 💐💐💐💐

My parents are 80 and 81, Mum disabled and can’t speak. I dread to think if either of them have to go into hospital now.

Oh and I say this as someone whose 88 year old dad is in hospital with water in his lungs. He's been in all weekend trying to clear his lungs. He's managing ok but no one is allowed in to see him.

Sorry your mums so unwell.

That’s a good sign surely that she could sit up? And eat! Wow!

They may have had to give her meds to keep her calm and reduce the pain from the catheter or stop her yanking it out or an iv out? That’s probably why she thinks they were hurting her. It had to be done unfortunately, poor thing.

She will be confused with a uti for sure, it sends old people doolally.

They would have sat her up if she was well enough. It’s easier for them to leave her in bed so it’s presumably been done for her benefit not theirs. Perhaps to help with bedsores or to keep her feeling more like herself, or to make it easier for her to eat her food or to prevent acid reflux after meals. I don’t know! Only that they do like you up and about if at all possible, perhaps an nhs person on this forum could advise?

I hope she continues to make good progress.

If they can sit people out then they will (if they are well enough), as it improves their oxygenation levels and prevents them developing pneumonia, pure and simple. This often kills.
Leaving her in bed will also make her decondition even more so her mobility gets worse, she has more falls and may break a hip or get a head injury.
Bed is not the best place for the elderly unless very sick indeed.
Hope she gets through this, I appreciate it's a very worrying time for you.

Thanks all. Yes I'm sure all is well and they're doing what's best for her, it's just that I can't see it with my own eyes and be her champion, if you like (what's that word, when you speak on someone's behalf and protect them - not vouch for them, what is it!?)

After typing my OP I received an email - from my cousin, saying that her mum (my aunt and DMs younger sister) is in her last days in hospital and has tested positive for Covid19.

I suspect DM is going to survive this round, whereas my aunt may not.

Cross-posted @Bluetrews25 - oh I see, brilliant explanation thank you!

I was hoping that some MNers would reassure me.

Advocate.

Sorry to see this is a rough time for the whole family.

My late Mum had Alzheimer's and her last years were a nightmare so I can really empathise. It must be awful not to be able to see her.
However, as others have said they will be sitting her out of bed in an attempt to help her I am sure. She is far more likely to get pneumonia, pressure sores and lose more muscle if she is left in bed, even for short periods. Plus eating is really important and lots of elderly people especially with conditions like Alzheimer's are at high risk of inhaling their food if they try to eat in bed. Its much safer if they can sit up properly. We had the opposite problem when my Mum was in a hospital ward - they wouldn't get her out of bed, I think because it was hard work. When she eventually got back to her nursing home the nurses there were horrified that she had been left in bed for long periods and they were shocked by the condition of her skin as a result. So although I quite understand your distress, it sounds like they are trying to help.
I am sorry the staff have been rude to you though. They must be very stressed at the moment but there is no excuse for not being polite to people. I hope things improve for you soon.

ADVOCATE for her, that's it! Thanks, that's been bugging me all day.

Thanks @MrsAvocet, yes it's been progressively harder since she was diagnosed in 2017. The last 9 months in particular, Christmas was an awful time of her wandering, falling over outside, falling in the bathroom, multiple paramedic calls etc etc. It was a relief when she was being taken care of full time, but then I had a massive financial worry as her cash was going to run out before I could sell her flat, and she didn't strictly qualify for LA assistance - it's only now we are down to her last £10k (less than 2 months care) and were in a pandemic lockdown that they've finally got in touch to assess her.

And now this. Thanks for explaining why it's better for her to be sitting up, even if it sounds like terrible cruelty to make an old lady feeling dreadful sit in a chair!

It might be worth double checking the visiting rules at present, a lot of hospitals have exemptions for patients with dementia so you may be able to argue you should be able to visit and advocate in person

I've just looked that up Sparkly and you're right, it counts as "exceptional circumstances". Maybe if I call them in the morning I could try and arrange something.

Wonder why they didn't mention that. Unless they didn't consider her to be distressed without me being there. I haven't seen her for 6 weeks as I can't visit the home. And she doesn't always know me.

I'm sorry to hear she poorly, I work on a medical ward and I completely understand why they had her sat up in a chair. I know it probably doesn't sound right to you but they will be doing it for her to be able to eat her food properly, as well her chest will be much better sat up in the chair then lying in the bed. It's a horrible, confusing time for older people who arent used to the staff and the ward especially when they have dementia, the fact that you cant visit will not be helping. I have alot of faith that the staff will be doing there best to help and support her in everyway possible! I hope she gets better very soon 🤞

Where I work there is no visiting at all, unless the relative is actively dying. Throughout the hospital.

Now I've seen that there are exceptions I feel I should ask...even though the thought of going there terrifies me. Not because of the virus, just seeing DM looking so ill and upset when she might not even recognise me so it won't make any difference to her anyway.

Op when you say unable to speak do you mean she had no voice? My grandad was in hospital recently and was dehydrated but even as he improved, he had no voice. We think oxygen etc dried his throat out. He couldn't even whisprr, just mouthe words. It did slowly improve.

No, she was saying words but it was as though she couldn't move her jaw - like a ventriloquists dummy. Very feeble and high pitched. I made out a couple of sentences but she mostly just sort of keened. It was horrific.

My elderly relative has had a few bad urine infections and he is confused and his speech very unclear, please don’t panic, she sounds like a fighter. 🤞🏼

She would have been extremely confused and possibly not even know she was talking to you.

You need to have her assessed for continuing healthcare funding, which is not based on her finances. Also, if she does not qualify, most LAs will be ale to put a charge against her property which they will recoup as soon as it is sold, so try not to worry too much about costs.

I really don't think they'll let you in to see her, for two reasons. She may test positive, they don't yet have her results, or you could be infectious and so pass it onto others on her ward. As hard as that is, she more than likely won't know if you're there or not.

Thanks, yes I know - I spoke to her by phone in the home last week and she didn't know who I was, but that's not unusual. Whilst she recognises that I'm a familiar face, for the last couple of months she has mostly thought I'm her sister and it's 1958. And that's when she doesn't have a UTI.

No I don't think they'll let me in either, but DH is very judgy and will think I'm a vile human being who doesn't care about their own mother if I don't try. Part of me is desperate to see her to try and comfort her, the other part of me is too scared to see her so poorly.

Heath care funding wasn't really in the running until now, as she didn't have a condition that qualified (to my knowledge) - maybe she still doesnt. I was told that our LA only allowed a deferred payment if you had over 4 years of care costs in the property (she doesn't, she has less than 3 years), and the 12 week disregard was only applied if she had less than £23k to begin with (she had £40k, which has almost gone - her care is £1290 a week). But they reassured me that whatever happens she won't be out on the street!

Thank you for the extra reassurance, I've been on my own with it in my head for months. I have a brother but he lives overseas.

My mum has Alzheimer’s and when poorly it’s stressed her speech went like that- it did improve. When we were face to face I found we could have a pretty good ‘conversation’ with no real words.

I did find hospital visits so sad as she wasn’t herself at all- she got moved into a lovely residential care home and was much happier. Hope you get to see her.

Hospital called me mid morning to say that whilst she was negative for Covid19, she had taken a significant turn for the worse. Her oxygen levels dropped, breathing was laboured, her sepsis markers had gone back up and she was unresponsive.

They said I could go in, but strongly advised against it - partly because its a Covid positive ward (she's in a side room), but also because she is very unwell and I might prefer to remember her as she was.

They've since called again to say she had stabilised a little and muttered a few words, and that were going at the UTI with a stronger antibiotic - but that they think there there may have been some kind of other catastrophic event causing her breathing problems, like a blood clot on her lung. The only way to know for sure is a CT scan, but that will involve a lot of moving her around and they are concerned she wouldn't survive the trauma of that (particularly that she could suddenly decline in the scanner).

So I'm waiting for them to call again after a respiratory specialist has looked at her x rays instead. They might just treat for a clot, but warned me that the problem may not now be reversible.

In a slightly more lighthearted vein, my DH was being very sweet and asked me earnestly if DM was "being seduced."

After a quizzical look it turned out he meant "sedated", but it gave us a good laugh. Mum would have found that utterly hilarious.

*@MortyFide * so sorry to hear your Mum isn't getting better . I hope you get to see her soon