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.

@Hungrycaterpillarsmummy

Have you had your closest relative in hospital, being given antibiotics - perking up, then 2 days later, crashing and confused. Over and over again.

I have and my closest didn't even have dementia to contend with.

I wish she could have stayed home.

My heart aches for you and your Mum @Ankleblisters

It's definitely not a TIA as they did a CT scan when she was in hospital at the weekend. They did bloods which showed an infection but they couldn't narrow down where except that it definitely wasn't a UTI or COVID.
Even taking bloods was an absolute nightmare because her veins are so small - her arms and hands are black and blue and the nurses who were trying to put the canula in weren't that patient or nice to her about it when she kept trying to pull away.

She is passing stools and urine normally (for someone who has been doubly incontinent for 5+ years) and I've been able to get some fluid and nutrition into her although she hasn't opened her eyes or made any attempt to feed herself. She already has pressure sore booties and a pressure mattress and I think we're in touch with or waiting for all the services we need right now. Nothing can change the reality of what we're facing - if dementia caring teaches you anything it's just to roll with the punches and whatever you face can be moved through with love, humour and stoicism!

Since the paramedics came and with all the support on here I feel a lot about about deciding to use the LPA to go against medical advice and keep her home and just let her sleep it off for as many days as it takes. I don't think this is the end but if it were to be, I do really think she would rather be at home warm, safe, comfortable and relaxed.

I think those posters who have shared their own experiences of episodes like this in late stage dementia have been especially reassuring. Mum is obviously on a downward spiral and those on here who have shared some of their experience have really helped me feel a little more accepting of what is coming and all I can do is make sure she is comfortable and relaxed.

She opened her eyes, blinked and smiled at me for a second as I manoeuvred her into bed tonight and tucked her in.

I hope she will be more awake tomorrow but if she isn't I will just wait and hope and see and take care of her as well as possible.

Thank you all so much for all your support, advice and understanding ❤It's been a lifesaver today.

TIAs don’t show up on CT scans as they are temporary but from what you’ve said it doesn’t sound like it is one anyway. My grandparent was sleepy after having one but not to this extent. I really hope your mum perks up tomorrow, it sounds so stressful.

This is an extremely difficult decision for you to make, to advocate for your mum even though you don’t know what the outcome will be. Is she managing to eat and drink in all of this? I hope she will recover.

What a lovely daughter you are ❤️ You're doing so well managing all of these unknowns, and sound so thoughtful and compassionate.

The world needs more people like you x

Just reading your post & sending lots of love. Your mum is so lucky to have you on her side.

One thought that springs to mind - Have you considered engaging with a local hospice for support? We have one near us, and they aren’t just for end of life care (a common misconception). They can offer respite support, and hospice at home care - which can involve people coming to the house to provide care to your DM. Usually, if a patient is under their care for extended periods they get funding from the government. So don’t feel bad about engaging them at this stage of your mums illness. It might help lighten the load for you a little, and having healthcare professionals that know what’s normal for your mum might improve her overall care and happiness.

You are an incredible human OP and the best daughter one could ever dream of having. How utterly loving you are.

Sending a hand hold.

Sending you 💐💐 as you sound amazing. My mum is in a similar state and it’s so tough. You can only do your best. And you clearly are. Good luck.

So sorry OP. Hopefully she will rally soon. But she may not…
It may be that your mum’s system is gently shutting down. I agree that you need to keep her as comfortable as possible and since she hates hospital, the best place is home, but with enough support that you are ok too.

OP can I just say I think you are doing a fantastic job. Your love for your mum shines through and she must feel this.

This. My mum has stage 4 cancer and I would not be taking her to A&E under these circumstances, she would not want me to if lucid. You are doing the right thing.

I echo the comments about a local hospice charity though if you have one. They could be a great support for you.

You're amazing OP. My dad had a couple of such episodes in his late stage dementia. But we had two carers living at home (he needed double - handed care because he was a big and immobile man). The GP came and actually called us because he thought Dad was about to die. he did a lot of checking of toes and fingers though and concluded he wasn't quite ready!

Anyway, dad rallied, and eventually (just) outlived mum, who got felled by a stroke due to the stress of it all. I'm telling you that, because I want you to take care of yourself OP.
But yes, you're blimmin amazing OP xx

End of life dementia isn’t always traumatic and doesn’t always need to be medicated. My mum slept more and ate less, eventually not eating at all. She had no distress and we only had the doctor visit on the day of her death. She literally just went to sleep. Her death certificate said ‘old age’ as the cause.

OP be prepared she may get better but it can take a lot longer than we are expecting with an elderly person. if she does get better it won’t be in a week or even a month in my experience.

my close relative was similar and we used the LPA to keep her at home after one GP assessed over the phone and called an ambulance. Where of course like your mum she was super alert and agitated.

Anyway they didn’t eat for nearly three weeks except tiny nibbles and sips of water. So got weaker and weaker and It took 3 months to recover strength. She has a new baseline now but is very much still with us.

Quick update: she woke up on Friday and was awake and much more her usual self over the weekend and yesterday. Then this morning she has relapsed into sleepiness and dribbling again

My wife ann had vascular dimentia over 7 years as l nursed her sort of 2 years ago she sleep a great deal 2 days or so . I said she had well ann passed in feb in her sleep at home she had a heart attack and passed in her sleep . But this is ,they sleep lot . So it's part of the illness . Thus l am on mum's net as ann was so l kept up her being on mums net good luck ken oxford

It sounds like it is a progression of the illness @Ankleblisters
I am sure you will continue to take good care of her.

Wishing you and your Mum a good week. Thinking of you.

My auntie has dementia and this happened to her. It was hypodelirium and she was basically asleep for about 12 weeks. She did get somewhat better but it was very slow and her dementia deteriorated very significantly afterwards.

It’s very difficult. I really feel for you.

It’s sad and awful but it’s the reality of dementia. My mum is in a home now, I couldn’t manage to do what you do. There are about 20 others all in various stages and they are all in a communal room in the day. Most of them sleep the days away, it’s very normal. I think you should get her assessed for carers to come in and help 4 times a day, even if just for toilet visits. It’s a danger to both of you if you’re holding her up on your own. If you injure yourself or you both fall it could be worse! You are doing your best but there’s no medals at the end for keep going to the end alone, you need to accept help if you want her to stay at home

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.

@Ankleblisters I'm so sorry you found her in that way but so glad you were able to be there for her as she was at the end of her life.

Bless you, OP. And a hand hold.

You know, if there can be such a thing, that is a really good end. She was in her own home, surrounded by people who loved her and a seizure in her sleep means she was no doubt unaware of what was happening.

very hard for you to find her like that, but if I could choose, I think that would be in my top 5 ways of dying.

im sorry for your loss.