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Dementia and Alzheimer's

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Original poster

She won't wake up

183 replies

Ankleblisters · 08/04/2025 13:51

My mum, who is 71 and has late stage fronto-temporal dementia, has been asleep basically since Friday. Called 111 on Saturday late afternoon and they took her to A+E. We (she and I) were there for 10 hours and they couldn't find anything wrong except that she has an infection they can't identify (tests showed it was not a UTI or COVID). They released her with strong antibiotics but nothing has changed.

I live with and care for her full time but I am looking after her alone all this week because my father is away for work. This is also my absolute busiest time for work (luckily I WFH but I have clients coming here) and I'm exhausted with work and worry and failing to catch up on sleep after being in A+E with her all night on Saturday.

Trying to feed, hydrate and take her to the loo is incredibly hard because she is unwakeable and incredibly shaky and wobbly on her feet. She's been sleepy before when she's been under the weather but it's passed quickly and isn't this profound.

I'm really worried. I'm going to see if the GP practice will send us someone to come to the house. I can't think of anything else, I can't put her through the ordeal of A+E again.

I just need a handhold really. It feels like a horrible responsibility and juggling act.

OP posts:
Original poster

Ankleblisters · 05/05/2025 22:33

Pinned

She passed away yesterday morning. She was on great form for the last week or two. Bouts of sleepiness but we had some lovely days out. We think it was a massive seizure in her sleep. She never moved at night, we would put her to bed and when we got her up in the morning she'd be in the same exact position. Yesterday when we got her up she was face down on the floor next to the bed and when we turned her over it was immediately obvious she was dead. I can't get the image of it out of my brain.

I don't know how we're going to cope without her - she was the cornerstone of everything. 💔

But I know I am lucky to have been so profoundly loved and to have been given someone to love so profoundly in return.

vriirfblred · 08/04/2025 13:54

So sorry to hear this OP. I can't believe they discharged her like that.
Is she literally asleep when you're taking her to the toilet etc?

crumblingschools · 08/04/2025 13:55

Can you get carers to come in and help? If you and your Father both work how do you juggle looking after her?

I would phone GP and say you can’t get her to the surgery and need a home visit from someone (might not necessarily be a GP)

NewtonsCradle · 08/04/2025 13:58

You're doing everything that you can in a really hard situation. Your mum is lucky to have you advocating for her. Hand hold

Welshwhales · 08/04/2025 14:00

she needs urgent medical attention , this is not normal . Make sure she's hasn't developed sepsis or is having a strong reaction to the antibiotics.

MounjaroOnMyMind · 08/04/2025 14:01

It's really not in her interests to go back to A&E, particularly when she'd be hanging around there for hours.

It sounds incredibly difficult for you. Could you afford to hire a temporary carer to come in a few times a day, short-term?

Welshwhales · 08/04/2025 14:03

Rule out any medical problems before worrying about carers.

Gettingbysomehow · 08/04/2025 14:03

Your GP should really refer to the rapid response team who should then make a plan for her.

Original poster
Ankleblisters · 08/04/2025 14:15

We got to the toilet with her sort of shuffling zombie-like with her eyes shut. It's hard to get her to move her feet and she is so shaky. I'm terrified she's going to fall and I'm taking most of her weight. She's been a bit more lucid in the afternoons but still very very groggy and she does this thing where her eyes are half shut and kind of rolled up in her head (she does that normally though).

The funny thing is, she hates hospital so much she was hyper awake and alert the entire time we were in A+E (we were in resus). They wanted to keep her overnight to monitor her but they had already said there was nothing wrong so I judged it in her best interests to go back home because she was agitated. She fell asleep the second we got back home (it was 3am) and has barely woken up since

OP posts:
CatsChin · 08/04/2025 14:17

Gettingbysomehow · 08/04/2025 14:03

Your GP should really refer to the rapid response team who should then make a plan for her.

This is good advice. Please ask for this. They should put something in place for the short-term to assess/monitor and come up with a plan.

Original poster
Ankleblisters · 08/04/2025 14:25

We usually manage the work balance fine but she is fairly self-contained, Dad's work is sporadic and I usually only work in the afternoons for about 3 hours and I build breaks into it to change incontinence pants etc.
It just happens that he has a business trip this week and it's the Easter holidays so I'm working a lot more hours and much more spread through the day than usual

OP posts:
Original poster
Ankleblisters · 08/04/2025 14:47

The GP said we need to go back to A+E and has called an ambulance. I also just can't see how that's in her best interests but she would not be persuaded otherwise and said the Rapid Response team wouldn't see her.

I don't know what to do now. I want to fight for what's best for her but it's just so difficult to know what the right thing to do is and what the best thing is

OP posts:
Original poster
Ankleblisters · 08/04/2025 14:48

We said for the start that the top priorities are her health, her happiness and her safety. Its hard when those priorities come into conflict with each other

OP posts:
frostyynectarine · 08/04/2025 14:55

Could the GP arrange for a home nurse visit? Or give you a reference to a palliative care team (they are not just for those with terminal illnesses)? I'm sorry you are going through this. My mother became very ill once or twice towards the end of her life and we were supported at home by her GP and the home nursing team and a palliative care team. A&E would have been awful for her. Good luck, I hope you are able to find help. (Edited to add: apologies, I didn't see your updates to say the GP has already called an ambulance.)

Endofyear · 08/04/2025 15:14

I do think it's in her best interests to go back to hospital - a home visit from the GP can only do so much and if she needs i/v hydration and further testing, it's much quicker and easier in a hospital setting. Hope they get to the bottom of it, sending a big handhold & sorry that you're having to deal with this on your own 😞

catofglory · 08/04/2025 15:16

Speak to the paramedics when the ambulance arrives, they may be very helpful.

My mother had advanced dementia and was very frail, and had a stroke. The paramedics were called and they very strongly advised against taking her to hospital as she would not withstand any treatment. Both me and the care home manager agreed, and she remained in the care home.

NoBinturongsHereMate · 08/04/2025 15:16

There's no gentle way to ask this question really, but it spunds as if you may already be thinking about this so it will be useful to have answers ready for your discussions with doctors. It sounds as if it may be sepsis - or something else causing generalised shutdown that would require an extended hospital stay for IV antibiotics, tests etc - which is likely to mean a significant and probably permanent step down in her general condition.

Given her late stage dementia, is this sort of treatment in her best interest? Or would staying at home with help from additional carers to keep her comfortable be her preference, if she were able to make the choice?

LimeQuoter · 08/04/2025 15:26

I would talk to your local pharmacist. It's probably a good idea to keep an eye, if there is infection. Take her temperature regularly too. No harm knowing the signs of sepsis too. Hopefully the antibiotics will kick in soon. A pharmacist could guide you to know how long they should take to show an improvement and when to take her back to GP/hospital. Hope she gets better soon

dotdotdotdash · 08/04/2025 15:32

If you can get compassionate leave from work, I would do that, so it’s one less thing to think about.

Original poster
Ankleblisters · 08/04/2025 15:39

Thanks so much everybody. It means so much to have some support and a handhold.

The paramedics have been amazing - so much better than the duty doctor on the phone who insisted on hospital. They have checked all her vital signs and everything is basically normal. They don't know what's causing it but they completely agree that hospital is not in her best interests so they have passed it back to the GP. I'm not sure what the next steps are but I feel so much better for being reassured and that she is not in immediate danger. Like many of you, I was thinking sepsis and was terrified.

OP posts:
PleaseDontFingerMyPouffe · 08/04/2025 15:39

Could it be low blood sugar? Hypos can cause a similar state.

Cannot believe they discharged her like this! She needs specialist care right now

Original poster
Ankleblisters · 08/04/2025 15:43

I agree NoBinturongsHereMate that it's likely that there is also a speeding up in her general decline. I want to take the best possible care of her and look after her with the utmost gentleness and dignity and love at all times and make sure her best interests are uppermost in our minds.
But I'm also absolutely nowhere near ready to lose her. I wish I could freeze time and keep her forever

OP posts:
Original poster
Ankleblisters · 08/04/2025 15:45

dotdotdotdash · 08/04/2025 15:32

If you can get compassionate leave from work, I would do that, so it’s one less thing to think about.

Thank you for the suggestion. I'm self-employed. If needed I will cancel some of my bookings and just take the loss in income. I mind the loss of income less than I mind letting my students down though - they are all coming up to exams and have booked up as many sessions as they can in the school break. I would hate not to give the most support possible
But Mum comes first. Mum will always come first.
She is my favourite person in the entire world and I just want to keep her safe and happy for as long as I possibly can.

OP posts:
notatinydancer · 08/04/2025 15:47

@Ankleblistershad she had a social work referral for carers ? It’s incredibly difficult to look after someone 24/7 on your own.

theickisreal · 08/04/2025 15:53

NoBinturongsHereMate · 08/04/2025 15:16

There's no gentle way to ask this question really, but it spunds as if you may already be thinking about this so it will be useful to have answers ready for your discussions with doctors. It sounds as if it may be sepsis - or something else causing generalised shutdown that would require an extended hospital stay for IV antibiotics, tests etc - which is likely to mean a significant and probably permanent step down in her general condition.

Given her late stage dementia, is this sort of treatment in her best interest? Or would staying at home with help from additional carers to keep her comfortable be her preference, if she were able to make the choice?

Edited

That
it’s not a nice thing to think about but it’s basically what happened with my mum, it turned out to be pneumonia leading to sepsis
To slip off quietly is a better death (I’m so sorry)

WearyAuldWumman · 08/04/2025 15:55

I'm wondering whether Hospital at Home is available for the OP's area? We had this for my late mother at one point - organised by a lovely GP.