Active discussions

Please or to access all these features

Talk
Dementia and Alzheimer's

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

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:
itsgettingweird · 06/05/2025 06:57

I’m so sorry.

your love for your mum was ringing out of every post.

Take time to heal and look after yourself. You are for her amazingly to the end Flowers

Nellephant10 · 06/05/2025 06:58

I'm so sorry for your loss. It sounds like you have been the most amazing daughter and carer to your mum, and also tower of strength to both your parents for years. Your mum was incredibly lucky to have you by her side. My thoughts and prayers are with you all at this horrendous time. Hand holding and hugs

Carlou · 06/05/2025 07:03

whoops... I didn't read the entire thread. My apologies. So sorry for your loss. It must have been a tough few weeks and you gave your all by the sounds of it. Your mum must be so proud of the way you looked after her!

Original poster
Ankleblisters · 06/05/2025 07:08

Thank you so so so much everyone. I wasn't expecting so many responses. I thought just a couple of people who posted initially a month ago might like to know the news.
Although she slept for the first week of April she had really rallied and was back to a sort of normal (for the stage of dementia). She was awake for most of each day of her last couple of weeks and we, not knowing, of course, how little time we had left, accidentally made the absolute most of every day.
My sister who lives overseas had returned, with my father, and Mum just lit up when she had her first born back. It was like the sun coming out. My sister brought her new partner with her for us to meet for the first time and he bonded wonderfully and treated her such gentle smiley kindness. She was utterly delighted (and a little besotted) with him. It means so much to my sister that she has been able to share Mum with him before we lost her.
We had some lovely days and some great (very slow and short) walks and we met up with one of my cousins, Mum's niece, the last week of April.
It's a great comfort that she had such a great last couple of weeks and lived and loved life right up to the end.
On Sunday, the day she died, both my sisters and their partners came over straight away and we were together in the initial shock and grief. We toasted her and we got instruments out and played and sang all Mum's favourite, most raucous Irish songs.
Yesterday I hadn't slept because the image of turning her over and seeing her face so starkly and obviously dead (and face down for several hours) after such a massive seizure, was looping in my head. I couldn't stop thinking, what if I'd been there, could I have saved her? What if I'd put the ottoman beside the bed, might she not have fallen and therefore have survived? But I know those questions are futile and it was almost certainly a very quick 'good' death which nothing could have prevented. She has been spared the worse ends that could have come with this terrible disease.
I did manage to sleep last night and I'm feeling less shaky and sick with shock. I unfortunately can't take time off work - I'm a self-employed tutor (it fit around caring for Mum) and my students all have important exams coming up. I don't want to let them down. But I will be trying my best to take it easier and reduce my hours where I reasonably can.
I think it still hasn't properly sunk in and the worst of the grief is probably to come, but I'm clinging on to how loved and safe and well-cared for she knew she was and how enormous her love for us was, right up to the end. ❤

OP posts:
Dymaxion · 06/05/2025 07:16

It sounds as though you gave your Mum absolutely the best care anyone could wish for and her last few weeks, were lived surrounded by loved ones and their love Flowers

nomas · 06/05/2025 07:18

I’m so sorry, OP. Your mum sounds like a lovely lady and you sound a lovely daughter. Focus on the lovely times you gave her, that’s what made her happy and would make her happy now. Do you have some support around you now? Flowers

2cubesoficeandasliceoflime · 06/05/2025 07:20

I'm so sorry for your loss Ankleblisters.

You say you were lucky to have been loved so profoundly. Your mum will have felt how much you love her too. Even when she was ill, she will have known.

RosesAndHellebores · 06/05/2025 07:22

Condolences and may she rest in peace, as of course she will, having been so loved.

Flowers
gmgnts · 06/05/2025 07:30

Sending sympathy and condolences on your loss. Thank you for updating us - so good that your Mum's last two weeks were full of happiness Flowers

Wholikesbreadandhoney · 06/05/2025 07:44

So sorry for your loss OP.

It sounds as though your Mum was blessed with a wonderful caring family.

You did everything a loving daughter could do and the fact she had pleasure in her final weeks on this earth should be a comfort to you as you try to come to terms with her loss.

Sincere condolences to you and your family.

BunnyLake · 06/05/2025 07:49

Aw I am sorry to hear that. Your first post sounds exactly the same as my own mother and she also passed away not long after. 💐

romola · 06/05/2025 08:09

I'm so sorry for your loss. You are part of a lovely family and I hope you can take comfort from each other. Take care of yourself and take some time for yourself too.

Newnamesameme · 06/05/2025 08:10

I have just read the thread and feel compelled to tell you how lucky your mum was to have you. She was so loved by you I'm so sorry for your loss but you did her remarkably proud x

YourAzureEagle · 06/05/2025 08:13

Ankleblisters · 05/05/2025 22:33

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.

So, so sorry, my dad had dementia and passed last February, his final week was like your mums, it is thought that a stroke or seizure causes it. Whilst stressful for the caregivers it never seemed like he was in pain, hope it was the same for your mum.

All I can say is the pain will fade, so will the bad memories of caring and only happy ones will remain and the happy knowledge that the suffering with this awful disease is over.

Isometimeswonder · 06/05/2025 08:13

You are a kind and lovely daughter.
Sorry for your loss x

CaptainMyCaptain · 06/05/2025 08:21

I read your pinned update before the rest of the thread and, thankfully, it stopped me telling you that this was the beginning of the end for my mother. I am sorry for your loss, it was her time to go.

ElBandito · 06/05/2025 08:24

Sorry for your loss Flowers
May I recommend looking at lots of old photos of your mum? In a similar situation I found it really helped replace the images in my head with memories of happier times.

catofglory · 06/05/2025 08:26

I was thinking of you yesterday OP, but I didn’t see your update until this morning. I am so sorry to hear about your mum. But she had a good last few weeks surrounded by family which I hope is a comfort to you. It sounds as if she did have a ‘good death’ and with this horrible disease that is the best you can hope for. She sounds a lovely lady, as do you.

Chocolateismylovelife · 06/05/2025 08:29

You gave your mum comfort and love right until the end, I’m sure she is now at peace. Sorry for your loss 💐

Starlight7080 · 06/05/2025 08:36

So sorry for your loss. You sound like a wonderful daughter 💐

LucyCheesey · 06/05/2025 08:40

I’m so sorry to hear about your mum. I can sense your profound love for her and your family in every post. What a privilege to love, and to be loved so deeply. It must be such a huge loss for you and your family, but remember you are how her spirit remains in this world. She must’ve been so proud to have raised such a loving daughter

LaceWeightWool · 06/05/2025 08:52

I am so sorry to read your updates, although it really does sound like you and your familly were able to have some precious, lovely times with her these last few weeks.

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

To cherish each other like that is lucky indeed, your words had me in tears.

ruethewhirl · 06/05/2025 08:57

So sorry for your loss, OP.

Properchips · 06/05/2025 09:16

@Ankleblisters I'm clinging on to how loved and safe and well-cared for she knew she was and how enormous her love for us was, right up to the end.

What beautiful emotive words. Your beloved mum did well. You did well. Sad for your loss. 💐

LaurieFairyCake · 06/05/2025 09:18

You did such an amazing job of looking after her Flowers

your mum sounds lovely and she had such a good last week, you couldn’t have done more