Newbie caring for mum, post stroke

[Pimple]

Hi there,

I'm a full time carer looking after 79 year old mother who had a hemorrhagic stroke four months ago and it would be really good to talk to someone with similar experience.
Mum was previously healthy, kept fit and active and was happily independent, walking to and from town every day and gadding off on outings on buses and trains.
She was in hospital overall for 10 weeks and I was told that she'd had some cognitive impairment, which is why she needs 24 hour supervision, but that it was early days and no one knew what recovery she could make. She's been home now for 7 weeks but she seems to be regressing and it's just beginning to dawn on me that perhaps she's not getting better.
I understood that fatigue can cause many of the problems she's experiencing and up until very recently she has been very tired indeed. I managed it by encouraging her to lie down for 20 minutes after she'd completed a strenuous activity, or if she fell asleep in the chair got her up into bed for a quick lie down, but over the last few days she's resisted this, assuring me she doesn't need to, and indeed she hasn't seemed tired. She's been able to watch TV all evening for two nights now without dropping off and has been awake and pottering about all day.
Does any one know if post stroke fatigue resolves suddenly like this? or is it possible she's fighting it somehow, or it's just a blip? If she's no longer tired and the confusion is still there then is it dementia? She can't hold onto what day it is despite asking many times, and she just seems lost and aimless a lot of the time
Any advice would be greatly appreciated as I really don't know what to do.
Thank you x

[melanie masters]

Hi there
cant say anything constructive, but ... welcome! hold tight someone with a wealth of experience will be along to help soon!

[Pimple]

Thank you Melanie! Am feeling better already It's really good to have people who know where you're coming from x

[Worrywart]

Hi Pimple
My 73 year old mother had a brain haemorrhage 14 months ago - assume that is the same as haemorrhage stroke? Anyway my mother was inhospital on and off for 7 months and came home in feb this year. Like your mum, prior to this she was vry independent and worked part time drove a car etc so this was an overnight change for all of us and we are still learning. As for tiredness well yes I think this is very common. My mother gets exhausted very easily. She also has some physical and cognitive impairment. Despite this - she does live alone with carers and family support. I can give you much more info if you want it - just wanted to give a quick reply for now as I know what it feels likexxx

[india77]

Hi and welcome
I don't have any experience of this sort of care, but just wanted to say hello!
India.x

[crocus]

Hi pimple, does your mum still have outpatient appointments after her stroke? Could you ask about her confusion at the next one? Unfortunately, strokes are all different as it depends which part of the brain is affected, so you really need to ask someone who knows about these effects. I do know that strokes can continue to improve for a year afterwards and sometimes even beyond that.

[silverday]

Hello Pimple
Sorry, I do not have any relevant experience, but just wanted to say Welcome.

[Bluebird]

Hello and welcome

[Pimple]

Thank you everyone for your welcome.

Mum is having physio & OT but there has been no other follow up from the medical side. I took her to see her GP when she first came home, but I probably didn't handle it properly because she didn't offer any particular advice.

I had a really helpful conversation with a friend of a friend who is a GP over the weekend, and who has recently had to sort out care for her own mother. She said that very often GP's get very little information from the hospitals because communication is so bad and that I need to do a number of things urgently so I thought I'd post them in case they helped anyone else.

1) Inform both my own GP and Mum's GP that she needed full time care & that I was providing it.
2) Request a psychogeriatric assessment; apparantly 20% of elderly people have some form of dementia so with mum's stroke as well there's a fair chance.
3) Like my mum her mother was above the £23000 threshold and she said she battled for months and months with social services and got nowhere, and in hindsight felt it was a probably a waste of her energy, so that's worth bearing in mind I suppose.
4) That I need help quickly, and she gave me a number of contacts to try, which I did, but unfortunately none of them had the capacity to cover what I need. It seems care is hard to find even when you can pay for it!

I'm trying to work from home but I'm not pulling my weight and I'm in danger of losing my job. I've got so behind that I need to give it more than a few hours here and there which is all anyone locally can offer me, so I'm left with little choice. I've booked mum into a local care home, initially as respite but they know it's with a view to keeping her there permanently. It is a really lovely home, she is familiar with it because she visits a friend there and it's just down the road so her friends can visit easily but I feel like a complete traitor. I've told mum she's going there because I have a holiday booked (which isn't true, but I can't worry her about my job) and I'm going to have to tell her somehow at some point that she's got to stay there.
If anyone has any top tips on the best way to handle telling her I'd be very grateful.

Thank you all xx

[Sajehar]

Hi Pimple, I'm a newbee too and my story is similar to yours but not as bad. My 83 year old mum had a mini stroke just under 4 months ago and was hospitilized for 12 days. She lost a lot of weight and my biggest battle to start with was helping her gain weight. She too dozed a lot and would tire easily. She was diagnosed as anemic and now takes iron pills daily. Perhaps your mum might be too, its very common even in fit elderly people and usually goes undiagnosed. Your mum might have been anemic for years as they suspected mine had been. Being anemic will only make other symptoms worse so it might be worth while getting it checked out.