Feel like I’m drowning

Hi, I care for my mum , she had a stroke the week before Christmas, which was a big shock , she was discharged Christmas Eve as her mobility was deemed ok and a physiotherapist visited to see if she could manage at home .
I have been looking after her , with the help of my 85 year old Dad(!). And she’s doing ok but I’ve noticed she’s becoming quite vague and forgetful… is this normal? We have had no information and no follow up appointments/visits. I hate to see my mum like this and feel so bloody useless. Please ., a little advice would help so much , this is all very new and scary .

Hi Caroline
I doubt many of us will still be online this time of night so just a quick hello to say you are not alone. Stroke is frightening, as is caring, but you should not have to do this a lone
Here’s a link to Stroke association to call tomorrow

Am sure others will be along in due course with more knowledge than me (my main caree is a young adult with anxiety issues)


Hi - bear in mind that had it not been Xmas your mum might not have been discharged from hospital (they threw out loads of people to free up beds) - so it would well be that she is, in fact, an ‘unsafe discharge’ and whatever the physio etc said, she should have been in hospital longer…

Definitely contact specialist support organisations for Stroke…and you’ll need to start jumping up and down to get ay responses. The advice on the forum is always to be a HUGE ‘pain in the neck’ as in the end being ‘good and quiet’ will only get you to be ignored (sigh) (totally insufficient resources as ever.)

It is very early days. I am sorry you were not told what to expect before your mother was discharged. From memory of what I was told about my husband, she will be very tired, could experience mood/character changes, be forgetful and have poor concentration.

I’d suggest you involve your mother’s GP. If she/he says they can’t talk to you and your Dad, then write a letter setting out how your mother has changed and exactly how much you are both now having to look after her and ask for her to be given a review appointment either at the surgery or the hospital. That is because you are not the expert, so you cannot tell how much is or is not normal for post stroke.

Please - take a moment soon to think about what help you both need to look after your mother properly and ask the GP how to get that set up. Don’t try to be wonder-woman.

Do you live full time with your parents, or have a home elsewhere?
Does mum have any carers coming in to help her?
What does she need help with?
Do you parents have over £46,000 between them? (yes/No)
Does anyone have Power of Attorney for mum AND DAD?
How old are you and mum?

What would you like to help you most of all?

Hi Caroline

That must be so difficult for you to try to come to terms with. Stroke is a shocking event to experience not just by the one who suffers from the stroke. It is a life changing event. My experience when my husband had a stroke was much like Dusty’s. Exhaustion, confusion, anxiety, lack of comprehension as to what has happened. And yes my hubby was discharged two days after it happened with no support, guidance or knowledge given to me as to what had taken place.

My friend immediately contacted The Alzheimers Society who came out to our home almost immediately … They were amazing in not only explaining what was happening but in initiating immediate support through the GP who I could not get an appointment with. I felt totally ‘lost’ before that help … they helped me to ‘ground’ and take the practical steps I needed to take. It seems that the Alzheimers Society is full of those who really ‘get’ what can happen to the brain and its consequences.

I love Jenny Lucas’s response to become a ‘huge pain in the neck’ until you get the attention and help you need. It might go against a Carer’s normal behaviour but in this day and age it is what we sometimes have to do.

I wish you and your family well and hope you get the support you need x

In Hampshire, it seems that the only way of starting to make headway is by making a Formal Complaint, and even then it might not work!