She won't wake up

[Ankleblisters]

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.

@Ankleblisters I’m joining in with the comments having read your initial thread and your pinned post to send my sincerest condolences. You’ve been an amazing daughter caring so lovingly for your mum. It probably won’t be easy to bear that in mind in your immediate grief, but please do be reassured that you did everything you possibly could to protect her and keep her safe.

I’m writing with the memory of my own dearest mum, who - like yours - was frail and had health challenges but was so very alive and inimitably ‘herself’. I too had a terrible period of caring for her completely on my own when she was suddenly ill and faced a very similar situation to your original one, but in my case complicated by it being the time of Covid and being banned from visiting her in hospital when she was blue-lighted in. But we managed to get her home finally and her last couple of days were spent there - this was a massive comfort to us and I’m sure it is to you that your mum was with you too. Take care of yourself.

I'm sorry your mum passed. From your first post I thought this is v similar to what happened to my MIL and she passed away 3 months later, although wasn't 'sleepy' like that at first, that was more towards the end.
She may have had cancer, it wasn't 100% diagnosed as she was too ill by then for a biopsy but it was that and the sepsis from infection that killed her (those are the causes of death on the certificate).
She also had a failed discharge from hospital, even though she was in for weeks.

You did well by your mum. You can be proud of the care you gave her. My mum died when she was alone, as did my father, my father in law, my aunt. All of them had good regular care, but it is often the way that people hold on til they are alone to die. Your mum would thank you for being so lovely to her. Please be kind to yourself now

What a wonderful woman and caring daughter you are.
Your mum is at peace having been much loved.
She was very blessed.
Mind yourself.

I’m so sorry. What a tough time it must be for you. Go easy on yourself.

I agree, a good death is where you spend lots of time with loved ones, sleep more and more and then (one night) never wake up, preferably without pain or fear.

I imagine you’ll look back on your time caring for your mum towards the end of her life as a very special time, even though it was exhausting.

So sorry for your loss OP.

You did a wonderful thing in looking after her so well.

So sorry for your loss. Your mum sounds amazing. What a lovely start to life she's given you, and how marvellous that you could return the love at the end of her life. XXX

@Ankleblisters be kind to yourself.
Work is a good thing otherwise you'll be sitting thinking and dwelling. Any distraction is good. Maybe try and mix with new people? A walking group or something? Or bereavement group.

Guilt is one of the first things everyone who loses a close loved one feels. What could I have done differently ? But no one could have done more than you.

My own dm was elderly when she died. Too outing to go into details but an ambulance should have been rung. She refused so her dp didn't ring one. She died a few weeks later. I did ring social services for advice and they eventually got her in hospital. She had no quality of life in the end. You still think what could I have done? She wanted to live forever. Unrealistic of course. But I stayed with her by her side in hospital for over a week. I didn't have as good a relationship as you did with your mum. We did do a lot together but clashed.

Keep chatting to us. We're here for you lovely.

I'm so very sorry for your loss. Holding your hand and sending love your way. You did a beautiful thing, taking care of her and letting her now how much you loved her. May the love you shared and the memories you have hold you. Xxx

I was going to suggest this. I stayed on a campbed by Mum's hospital bed on her last night. I didn't mean to fall asleep and had only laid down to rest my neck but I did doze for an hour and woke to find Mum had died. For the 1st days after whenever I thought about Mum I immediately had the images of how Mum looked when she was dying and after she'd died and it was horrible. But we made a memorial album on FB and as I've seen her photos on there, as well as her photos in her home it's definitely worn off and getting better.
I just need to get through her funeral tomorrow 😪
Best wishes OP x

So sorry for your loss. My mom passed away aged 70 and I felt she was too young! Be strong and remember she knew she was loved by you and you did your best x

So sorry for your loss.
You sound so lovely, being able to look after your mum like that.

So sorry for your loss. Reading your posts I thought what a kind, compassionate and considerate daughter you were, dealing with difficult decisions in the best way you could and advocating for your DM. Reading your update I thought how you had some good days together towards the end and that must be a comfort. I also had dreams about the person after similar but I've heard it's very common and is your brain trying to process the whole thing. It wasn't too disruptive in the end. One day at a time.
Condolences to you and all your family.

I'm very sorry for your loss.

Sorry for your loss @Ankleblisters.
Grief will of course take whatever path it chooses and you can’t predict, but you might find as I did that it’s not as severe as expected. I think when someone has been ill for years, you are half expecting it at any moment, so you will have been living with a ‘half death’ for quite some time.
And as one of the old village ladies said to me when my mother died, there is often relief and happiness that your not having to do all the unpleasant jobs that come with dementia and your life is your own again and then you feel guilty for feeling free again…completely normal. You’ve been an amazing daughter who has gone above and beyond.

So sorry to hear that❤️

I’m so sorry for your loss. Sending you a handhold. Your mum will have been so grateful for how wonderfully you cared for her.

Thinking of you x

Another one here to say sorry for your loss. You did a wonderful thing, your mum was fortunate to have you.

Feeling very touched by the obvious compassion and love you had for your mum.

I'm so sorry you lost your mum. What an amazing relationship you two had. You were so lucky to have her and she was so lucky to have you.

Troublingly the coroner feels her death is unexplained and there now has to be a postmortem. She had been in good health and she was on medication that should have controlled the seizures the dementia was causing.
My absolute worst fear is that she just rolled out of the bed (the position of the body was face down on the floor right beside the bed, so she can't have been trying to get up - she never tried to do that or we would have taken steps like getting a baby monitor. She always slept well and she couldn't get up by herself even from a chair anymore) so my absolute worst fear is that somehow rolled out and died unable to move and desperate for one of us to find her but we didn't hear her or get to her in time.
I've been so busy at work that I closed my bedroom door that night to prevent the cat from bothering me (he thinks I should get up with the first signs of dawn). If I hadn't, would she still be with us?
I wish I could stop replaying the moment that we rolled her over and saw her face and how awful and obviously dead it looked.

But those who suggested looking at photos of happy moments, thank you, it does help. I also made lots of videos of her being wonderful in the last few years. I keep replaying one of us doing the Hokey Cokey together. She is enjoying herself too much.
I can't believe she's gone.

@Ankleblisters Have you considered asking the coroner if they’d be comfortable with a CT postmortem? Would that give them the answers they’re looking for perhaps?

I know it’s hard, but try not to get stuck on the what if’s. You’ve done everything right by your DM, and she was lucky to have you on her side advocating for her. You could say, what if she didn’t have such a loving family by her side, advocating for her and ensuring her final weeks were filled with such fun and love.

Sending you condolences 💐 OP
your mum was very loved. 🥰
what a lucky family you are
grieve well when you get the chance.

It wasn't your fault. X
Even if she did fall out of bed without you hearing, it doesn't make it your fault.
Your mum wouldn't want you thinking that and it doesn't sound like she would think that either.