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.

This must be such a terrible worry for you. So sorry she's taken a bad turn. I hope you get some better news from the lung specialist

Thank you both. The respiratory team decided that the chest x-ray indicated a new chest infection yesterday, and they identified exactly which bug was causing the UTI, so they started a larger dose of new antibiotics yesterday afternoon. But her oxygen levels were still poor, her heart was galloping and she was still largely unresponsive.

Today she is the same, no change and still unresponsive although they've been able to reduce her oxygen slightly. She has been somewhat restless, more uncomfortable than distressed, so they've added morphine which calmed her.

This afternoon they say that if there is no marked change by tomorrow afternoon, they will probably stop the antibiotics, leave her with the comforting palliative drugs and let nature take over. I said that would be absolutely what she wanted and that my brother and I were in agreement.

So now I guess we wait. My biggest fear is that she starts to rally, comes around, then has to live in a horrible bed-bound miserable state in the hospital or care home until the next infection hits and maybe kills her.

I want her to slip away peacefully now, go and be with her brother and sister and my stepdad and be free again. I said I wanted to see her and hold her hand, but they urged me to stay away until tomorrow when they make a call about pulling the antibiotics - they'll call if there is a sudden change before then.

Oh lovely, it's such a crap position to be in. I hope your mum is feeling peaceful, I'm sure she is being looked after well x

This is what happened to my dad. He had advanced dementia and went into hospital with an infection and then declined quite rapidly. We were lucky that we were able to spend time with him at the end. He really didn't suffer and after all the upset and confusion from the dementia it was a peaceful way to go.
I do hope that your mum has the same peace and that you find a way to be with her even if just by phone. I know we found it helpful to be able to tell my dad we loved him even if he didn't respond.

Thanks - that sounds ideal Nacknick. I'd like to believe she is comfortable and not distressed, and I'm praying for a peaceful end for her.

I hope it doesn't take long, I'm glad it's been quite quick. It's all we can hope for for them after the horrors of dementia.

I'm so sorry to read this @MortyFide.
I can completely relate to what you are going through, right down to the partner who doesn't really get it.
My husband was horrified when agreed to a DNAR order for my Mum, and said that I should be fighting fir her. Of course I WAS fighting for her. Fighting for her to have a dignified death and to be free from unnecessary suffering.
I don't suppose there is any chance of her being discharged if they move to palliative care is there? My Mum died in the Nursing Home as we asked for her not to be admitted to hospital again, and whilst it wasn't "home" it was more home like and the staff were very understanding of our position.
I realise it might not be possible, or even what you want, but I thought I'd mention it just in case.

Also, do ask them to get the palliative care team involved if they can, either in hospital or the community if you are able to get her home. They are not just for people with cancer as I previously thought, and we found them so helpful.

Poor you, I hope you are doing ok x

Thinking of you, Morty

I'm so sorry to read this @MortyFide I can't imagine how hard it is. I truly hope she slips away peacefully.

Yes we did the same @MrsAvocet - he went to the care home and we asked for no more interventions and he died there. It made it easier for us to with him whenever we wanted but appreciate it may well be different now.

I'm so sorry. It's such a difficult time. We had an almost identical time with my Grandma at the end of last year. She had dementia and was hospitalised with a UTI and sepsis. She was treated and rallied but only to a point. The UTI cleared but she was extremely weak and was discharged under end of life care and returned to her care home with anticipatory meds and with the knowledge that they would not treat her beyond making her comfortable when the next infection arose. She did not get out of bed again. She developed pneumonia a fortnight later and then sepsis. She died with me holding her hand and striking her beautiful hair and it was a peaceful and dignified death after such a horrible descent into dementia.

*stroking

I share your pain. DF taken to hospital at the weekend has been unresponsive ever since and is now on palliative care. DM had one visit and thought the hygiene/distancing standards of the staff were so poor she is scared to go back. We have now heard from elsewhere that they now have a Covid case on the ward. No one else can visit. Getting immediate family to the funeral is going to be difficult so DM is very isolated. Terrible times.

Thanks for the kind words everyone. I somehow doubt they would discharge her back to the home now, unless she goes on for a protracted period of time I suppose - I get the impression that whilst they are hoping she might brighten after a bit more time on the antibiotics, they don't really believe it and think she'll slip away fairly soon. They thought moving her to a CT scanner would be too much for her so I don't know how they would safely ship her back to the home again!

I will ask about the palliative care team tomorrow, thank for mentioning that MrsAvocet - what do I say, shall I just ask if the care team will be involved?

That sounds awful ShowOfHands - and is really why I don't want her to get better enough to be discharged, but not enough to ever be out of bed again. She'd hate it and it seems so cruel. There is a DNR and I've told them very clearly that mum would absolutely not want any further intervention, she'd want it to be over and done with swiftly. They said that helped them in terms of management, so hopefully they can be liberal with the end of life drugs so she can drift off peacefully. She fought the Alzheimer's so hard but succumbed eventually, and it is horrible to watch.

Sorry to hear that MrsCollins, hard times indeed. My DM is on a Covid positive ward but in a side room, so I'll certainly be exposed although they'll gown/mask me up. It'll be a pity if I can't uncover my face but hopefully she'll be able to hear my voice.

I haven't thought about the funeral, but mum would be absolutely thrilled that my horrible stepbrothers won't be able to attend. We always talked about how we could get them to stay away! She might yet succeed!

Im so sorry to hear how poorly your mum is & I know how worrying it is, the staff will be doing everything they can for her

Hello just wanted to say hello and I hope your mum has a peaceful end. I used to be a nurse. She will be getting great care.

Hi MortyFide.

How was your mum today and how are you holding up. A very harrowing time for you. Thinking of you and your mum.

When you talk to them tomorrow MortyFide I would just ask for more details about what is being done to keep her comfortable and you could then ask whether the palliative care team will be involved. The biggest difference it made for us is that they arranged for my mum to get pain relief and sedation through a syringe driver so it was continuous. Before that we were reliant on the nurses assessing her needs because of course she couldn't ask. And of course they are so busy, they couldn't always be there, even back in the nursing home. Obviously I don't know whether the same thing would be appropriate for your mum as was for mine but it can do any harm to ask.
Re the funeral, sadly a friend of ours was buried this week and only a small number of people were allowed to attend, so his wife had to inform the funeral directors who contacted the people she wanted. They are a big family so it was mainly close relatives but his best friend was invited. (Sorry, it seems wrong to talk about being invited to a funeral but I can't think of a better word.) It will be your choice who is there - your step brothers aren't relatives even are they, so don't feel in any way obliged to have them there, especially as you know your mum wouldn't want it. It is a difficult enough time as it is without having horrible people there. Just tell the funeral directors who you wish to be contacted and don't engage with anyone you don't want to be involved. Just focus on yourself and your beloved Mum now.
I hope she passes peacefully and that you are able to gain comfort from memories of happier times. She will always be in your heart.

Thanks all. No calls overnight so no changes presumably - I expect I'll get an update call mid morning.

I'm holding up fine, I think the waiting is the worst part. I do worry about how much awareness she has - I don't want her to feel lonely or frightened. Although she hasn't missed me in the last 7 weeks at the home, because she doesn't remember she has a daughter, so that's a small mercy I suppose.

I'm staying afloat because I need to deal with practical things. My brother is overseas fondly reminiscing about our childhood and our mum with his own children, and I'm glad - but I am saving my reminiscing for after mum has slipped away and I've dealt with everything.

I had a wobble when my brother said mum would be proud of me, and when I let my cousins know they said how fondly they thought of her which set me off. And I tried to find them some photos from before the dementia took hold and that made me really sad.

But I seem to be able to shut it down quickly, because I can't afford to fall into a vat of grief right now, I have to keep a cool head. Mum would expect that - no booing, no histrionics, get on with it and do your crying later. That's what she'd say.

Thanks for the advice MrsAvocet, appreciate that.

So sorry OP - what a grim time for you. Your love and care for your Mum shines through from your posts.

I think the care in hospital might be better than in the home so your instincts about wanting her to stay are probably correct. My Grandma's care home was wonderful but it wasn't a nursing home and they weren't allowed to administer the end of life meds. Not even the high dose insulin and her sugars were off the chart near the end. She also really needed better sedatives as she got quite agitated. When she was at the point of needing a driver, we waited and waited for a district nurse. The home then tried a locum and we waited and waited. Paramedics came in the end and they couldn't administer either but could prescribe a few other things that helped. It took 15hrs to get a district nurse out from the point of really needing her. She was 20 minutes too late sadly. Continuous hospital care would have provided better medical support.

I've been thinking of your lovely mum and you overnight. It's such a strange time. There's such sadness but a small relief that the terrible dementia is going to have to release its grip. There is some peace in a good death after such an illness.

Thanks Lark, steady on you nearly broke my core of steel then!

Sweet of you to think of us ShowOfHands. I haven't had an update from the hospital yet, I'm sitting on my hands as they may still be doing rounds - need to hang on until at least 12pm if they don't call in the meantime. I'm guessing no change - I hope to god she hasn't perked up enough to be discharged back to the home, I really don't want that and neither would she. I want a smooth, peaceful, swift end to it for her, preferably without being moved around any more.

Yes, mum's sugars went off the scale the night she went in - they were managing it with an insulin infusion, she does have type II diabetes but it was controlled with metformin, so they suspected it was due to infection (although I don't really understand how that works).

2 days later she was having glucose though, so I'm confused. Assuming she has responded very minimally to antibiotics and isn't showing any improvement today so they stop them, I wish I could ask how long she is likely to have to battle on for. I can't bear the waiting and I don't know what to tell work. I've cancelled a couple of more complex calls/meetings, I'm keeping myself available for emails and queries and keeping things ticking over but I feel a bit disengaged/in limbo. Unfortunately productivity depends on me holding video meetings with my clients...

The only update from the hospital this afternoon is that she is a bit more alert today and has mumbled a few incoherent words. But otherwise her clinical signs are exactly the same (laboured breathing, rapid heart rate). So they're going to continue treating and see how she goes I guess.

This doctor was very bright and breezy as if mum is going to walk out of hospital tomorrow and it was all a false alarm. It's a roller-coaster isn't it?

It is such a roller-coaster and there are no answers really. No idea of how long or in what order things will progress. My Grandma was type 2 diabetic too, originally on metformin but moved to insulin in her later years. She was in diabetic keto acidosis at the end, her sugars didn't come down and were unreadably high. She had laboured breathing, fast heart rate and some agitation and was mostly unconscious. From the point you're describing, it took 2/3 days but, importantly, she wasn't being treated. I know every patient is different but when we were going through it, I wanted rl experiences.

I won't wish her "better", much as I'd love to as that's not always possible but I do wish you both peace. Do ask them to tell her you're telephoning. It doesn't matter that she's in the end stages of dementia or what her level of consciousness is, I always made sure that people were speaking to my Grandma with kindness. I truly believe it makes a difference.

Are work supportive? It's hard when you can't give answers.