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DM rushed into hospital and I feel so helpless

276 replies

MortyFide · 27/04/2020 16:57

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.

OP posts:
MortyFide · 18/05/2020 21:35

Oh gawd, don't say that @Alsohuman...I'm hoping the powerful nursing manager will talk the GP around a bit earlier than that!

Sorry it's brought it all back for you. 8 days, is that all? Mum was mostly unresponsive for 3 days with the initial sepsis and the development of the blood clots, then has pretty much slept for 20 days.

I had a call mid morning to say that mum had rolled out of bed no less than 3 times over the weekend. Entirely uninjured - the bed is at it's lowest setting and she has thick mats and pressure sensors both sides - but 3 times! Apparently having cot sides up is more dangerous for escapees, in case she attempts to climb over (unlikely, considering she can't even hold a cup) and gets caught up. How is she moving so much that she falls out? I suppose they are quite narrow.

They said she'd run out of the dermol soap substitute lotion she gets on prescription, and there was "a shortage" (??) - could I find some or something similar and bring it in? And also, she has terribly dry lips and could I bring in a pot of vaseline. I said I brought her two brand new chapsticks just before lockdown when I noticed her lips were dry - they obviously go walkabout don't they. Hmm

So I got vaseline plus a huge bottle of dermol from our local pharmacy, and also found some simple jersey nighties in Sainsburys which are tumble dryable, so I got 6.

I took all that in and dropped it at the entrance doors, astonishingly timing my arrival with the appearance of Nurse Ratchet who was pleasant, and brought me a copy of mum's future planning notes from the hospital.

I asked how mum was, and she just said, "She's okay, for now."

At least I feel like I've been able to do something practical for her today, even if I can't see her. I was talking to someone experienced in dementia care earlier, and she helpfully said that she could go on like this for quite some time. It's unbearable, but she did say that for mum, the last 3 weeks is just another day and she's not aware of any of it. I hope she's right.

OP posts:
Alsohuman · 18/05/2020 22:02

Sorry, I didn’t mean to upset you. The care my mum got in her care home was exemplary - tender, loving and touchingly gentle but the GP practice was awful. The staff were really pissed off by them. It sounds as if Nurse Ratchet will go into battle for your mum.

You’re doing all you can. I know that must be very little comfort to you now but it will be one day. I hope for you and your mum that it’s soon over. Not being able to see her must be breaking your heart. I really feel for you.

MortyFide · 19/05/2020 18:05

Oh you didn't upset me @Alsohuman! Yes I think Nurse Ratchet is terrifying but she's certainly a good person to have in mum's corner.

Our GP practice is normally very good, I'll give them their due. She might have been annoyed with one doctor who wouldn't dance to her tune and prescribe the white card for now, but when she called to convert mum's meds to liquids they did it without any hesitation. She mentioned his name and it's the same doctor who apologised before giving me the world's most painful cortisone injection in my foot, and who also reviewed all of my own medication and put it on a recurring prescription for me not that long ago!

I've only had 2 frustrating incidents with this practice, otherwise they are excellent.

No news on mum today. Someone said that if I'm told she has stopped eating, that's when to brace myself! At least she hasn't fallen out of bed since yesterday.

OP posts:

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gondrinkin · 20/05/2020 15:25

Any news Morty? Thinking of you Flowers

MortyFide · 20/05/2020 17:11

No, nothing specific gondrinkin - only that she rolled out of bed again last night. As it's rather traumatic having to hoist her back in again every time, and they are not keen on putting any cot sides on, they have decided to place the mattress on the floor, surrounded by the thicker mats - they did that at 3am this morning, and apparently she seemed far more comfortable and they left her to sleep in this morning!

She is taking her medication with thickened liquids while they await the liquid replacements. She is eating and drinking reasonable amounts, no mention of infection brewing, so all stable for the moment. Thanks for asking!

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ShaniaPayne · 20/05/2020 17:51

Nothing helpful to add, mortyfide, just another internet stranger wishing you strength in these horrible days. When my DM was in the final undignified stages of cancer, I remember feeling so dark and guilty inside when the GP/nurse cheerfully pointed out microscopic improvements, and pretending that was great news when I just wanted her to slip away in peace, and for it all to be over for her.

You are being a wonderful daughter, and you really are doing absolutely everything you can. This feels like nothing now, but as PP have said, when you look back on these days it will be a comfort.

Ikeatears · 20/05/2020 17:58

If you would like her to have bed sides on and have power of health and welfare, you can request a meeting to discuss 'best interests'. We had to give my mum's home specific permission to is the bed sides as all involved felt it was better for her to have them.

TheFutureMrsB · 21/05/2020 01:01

@MortyFide re the pads and underwear, it depends if she has on a full wrap like an adult nappy or slips (as in pads) sometimes they will use own underwear or disposable stretchy underwear if the resident has run out. Thanks

MortyFide · 21/05/2020 17:35

Had a call from the nursing home earlier - mum is going down again. She's just started oral antibiotics for another UTI - she's very drowsy, blood sugars up, blood pressure up, and isn't taking any fluids.

They tried to sound positive, that she might rally with the antibiotics, but they have finally secured the "white card" drugs (midazolam, morphine patches etc) in case she declines suddenly over the weekend. I am going to call daily for updates, but they'll notify me if anything significant changes - but I can only go in for 30 minutes, and only once.

She was terribly apologetic about that part, but what can you do - they have to protect the rest of the residents. She was also very kind, said they would call the moment they thought I needed to be there, and I said they could call me at any time.

She's just sleeping, so she isn't agitated or in pain. I don't feel very much at the moment, just distracted and disconnected and weary of the stop-start roller-coaster again.

OP posts:
MrsAvocet · 21/05/2020 18:15

I don't have any words of wisdom I'm sorry Morty but I just wanted to say that I am thinking of you and I think I have some idea of how you will be feeling. I am pleased to hear that your Mum is not distressed though. Flowers

thornyhousewife · 21/05/2020 18:16

Hi @mortyfide I've been reading your thread and thinking of you and your mum. Your situation is in some ways very similar to my nan, and I understand entirely your feeling of weariness and the roller coaster of it.

We found that these last stages were actually the most peaceful for my nan as the dementia made her very upset. The secondary infection was a relief for her in some ways.

I hope your mum is comfortable and it sounds like her home are doing everything they can for her which is great.

Do look after yourself and don't give yourself a hard time for your feelings - you have a lot on your plate and it's clear what a great daughter you are.

All the best.

MortyFide · 21/05/2020 18:47

Thanks as always @MrsAvocet.

That's a good point @thornyhousewife - sleeping is a better alternative to being horribly confused all the time, or feeling unwell. I must say I think the home is doing her proud, I'm really happy that she's there. Dignity is so high on their list.

OP posts:
Alsohuman · 21/05/2020 19:30

Thinking of you 💐

Bluetrews25 · 21/05/2020 19:33

Oh Morty.
So sorry.
She is probably blissfully unaware of all of this, and will not be aware that you are or are not there.
I was not there when either of my parents died, for which I am eternally grateful. My last visual memory of them is of them alive.
That may not be what you want, of course.
Thinking of you, checking in every day still.
The circle of support is still here.

Cantchooseaname · 21/05/2020 19:51

Dignity is very important, and the drugs will help.
We did end of life care for gran recently at her home, and the district nurses were phenomenal. The “just in case” drugs were hugely helpful, and the end was calm and peaceful.

Cantchooseaname · 21/05/2020 20:01

That was obviously also meant to say, thinking of you, and I hope things are equally peaceful.

MortyFide · 21/05/2020 21:02

Thanks everyone. Currently stuck in the bathroom with a terribly upset stomach - don't think I've eaten anything that would set me off so it's presumably worry related. Sad

OP posts:
Thisisanillegalbingogame · 21/05/2020 21:54

MortyFide, I’ve been checking in daily for news of your mum. I’m so sorry that she’s I’ll again but it sounds as if she’s peaceful. I know exactly what you mean about the stop-start rollercoaster-it’s exhausting. My dad has dementia and I dread it dragging on for his sake-it’s such a cruel bastard of a thing.

I am sending you strength and peace for whatever may come and know that lots of total strangers are here thinking if you and your mum.

MortyFide · 21/05/2020 23:20

Ah that's so kind, I'm oddly reassured knowing there are some internet strangers quietly holding onto me. I don't feel quite so alone and at sea.

And in other news, I got off the bog eventually. Grin I'm currently binge watching YT videos of Billie Eilish, although I'm struggling with the song "I love you."

OP posts:
MortyFide · 22/05/2020 15:35

Had a call at lunchtime to say Mum was not taking liquids and was unable to swallow medication, and could not sit up or respond. Her breathing has become very shallow.

On the advice of the GP, all medication has now been withdrawn - antibiotics, insulin etc - to allow nature to take over. They do of course have midazolam injections and morphine patches ready in case.

They have just called again to say that mum is sleeping peacefully, and they were getting confirmation that I can come in to see her "for a few minutes every day, now she is at end of life" so I'll probably get another call soon.

Sounds like she has nearly made it to the end, I am so glad for her. She doesn't seem to be in any distress, so that's good.

OP posts:
Alsohuman · 22/05/2020 15:59

So pleased for you that she’s peaceful and is drifting gently to the end. And that you can go and sit with her for a little and hold her hand. That will help so much. I’ll continue to think of you. 💐

Pianokicker · 22/05/2020 16:48

Another internet random thinking of you mortified 🌹

hellsbellsmelons · 22/05/2020 17:34

It's truly heartbreaking to read OP and you've set me off for sure!
But... this is exactly what we had to do.
She did hang in there for 5 days though so if she's a tough old bird it will be a few more days yet. My mum did need pain meds. Although she wasn't responsive at all you could tell exactly when she was in pain and she needed pain relief.
Hopefully your lovely mum can be a peace soon. Something we so so wanted for my poor mum.
Hand hold from me.

venusandmars · 22/05/2020 17:51

Mortyfide wishing your Mum a peaceful time and a sense of connection to the love that surrounds her.

And wishing you fortitude and self compassion for the next hours and days. Take good care of yourself.

Defiantly41 · 22/05/2020 19:04

I've been silently following your story. Wishing you and you Mum peace Flowers