Need help on post stroke dementia

Hi My hubby had a severe right side stroke 2 years ago, he is paralysed on his left side and bedbound due to ill health after his stroke, lately he has been having hallucinations he does not have a UTI and believes he is not in the uk, i am struggling as I now think he might have mid to late stage vascular dementia, I would love to chat to someone in a similar situation for advice etc, I am finding it tougher to deal with everything. thanks

How old is your husband?
Have you spoken to his GP?

Hi Kim welcome to the forum
My late husband had mini strokes, a major one and then suffered with vascular dementia along with other health issues. It’s very heartbreaking and emotions go all over the place.
Somehow your husband should be assessed for dementia.
Have you ever been in touch with the stroke society? They may advise.
In the meantime, in my opinion there is not much point in trying to correct your husband. It will cause more frustration for him.Try to distract, change the subject of the confabulations.
Do you get any help, any time for yourself? Both are very important.
I feel for you

Hi hubby is 66, i know there is no medication he can take as he has low blood pressure had a heart attack last year and now has increasing angina attacks, i am going to try and get the gp to come visit as soon as we can get a home visit as hubby is bedbound which makes things a little more difficult, he is on anti depressants as well as pain meds.

the thing im struggling with is his nighttime terrors/nightmares/hallucinations he keeps saying there are snakes in the room, inside the pillow cases and last night he was laying on one which according to him is so big and strong would take three men to move! nothing i say will change the fact or help him he was really scared. He is awake when he tells me these things, even sees spiders coming out behind the picture frames, so I took everything off the wall and now they are on top of the cupboard, I just can’t win

In that case, consider using your mobile phone to take a short film recording what he says.
Then go and see the GP yourself.
What help are you getting from Social Services. Has anyone assessed your husband for NHS Continuing Healthcare?

yes he has CHC now, I did start recording his conversations to be able to prove to the gp in the hope it will help as i have carers pop in four times a day I don’t know if they will also help with night shifts as im only getting around 3 or 4 hours sleep sometimes only 2 hours woken up then another 2 hours, i can’t really sleep in the day as i have to do all his medications via his peg feed look after the peg, his meds, any appointments etc, I did have counselling but that has now come to an end as I’ve used all the sessions they would give, his mental side of things is what i am seriously struggling with, the gp did refer him to mental health but they don’t do home visits and he cannot talk well and his vision is impaired so ph and pc meetings are out of the question as i would have to be in the room to help him that wouldn’t give him the freedom or privacy to be able to talk/vent to someone.

If he has CHC already, then insist they increase his hours. Would you like him to have respite to give you a much needed break, and enable his needs to be reasessed, or do you feel he now needs to move into a nursing home?

Hi Kim

I wanted to wish you a warm welcome to the forum and to highlight some of the options for connecting with fellow carers and for getting support from Carers UK should you need it.

Carers UK are running online weekly meet ups for carers to take some time for themselves and chat to other carers. Feel free to join if you’d like to and there’s no pressure to share anything you don’t want to. I’m sure you’ll find others in a similar position to yourself.

You can find information on how to register to our online meetups at the following pages:

Care for a Cuppa: Online meetups | Carers UK - the next online meet up is today (Monday 23 August), 15.00-16.00 with further sessions shown in that link. This social is a great way to have a little break if you are able to and spend some quality time talking to people who understand what you are going through right now.

Share and Learn: Share and Learn | Carers UK - these sessions range from creative writing activities to beginners Latin dance sessions.

There is also Carers UK’s helpline should you need advice or support - Our Telephone Helpline is available on 0808 808 7777 from Monday to Friday, 9am – 6pm or you can contact us by email (

Carers UK also provide information and guidance to unpaid carers. This covers a range of subjects including:

Benefits and financial support
Your rights as a carer in the workplace
Carers’ assessments and how to get support in your caring role
Services available to carers and the people you care for
How to complain effectively and challenge decisions.