Anyone with experience of vascular dementia after a stroke?

[NormaLouiseBates]

My darling mum suffered a massive stroke in November last year. She spent 6 weeks in hospital but made zero recovery so we made the difficult decision to move her to a nursing home just before Christmas.

She has slowly but surely deteriorated since then and is now a shadow of her former self. It's utterly heartbreaking and I'm holding onto my sanity by the skin of my teeth. In the last couple of weeks things have gone downhill even more and she's now shouting and crying and incredibly confused pretty much all the time that she is awake. The doctor who covers the home prescribed a low dose of anti anxiety medication and the only time she is calm now is when she's had that and she just sleeps. I've been reading up on the after effects of stroke and it seems that around 25% of stroke patients will go on to develop vascular dementia and we are now thinking that this is what is happening to her.

I'm going to call the doctor today and have a chat with him hopefully but I was wondering if anyone has any experience of this? Her behaviour when she is awake is just horrific. She's either crying and shouting random things that make no sense (and this can go on for a couple of hours at a time) or she's swearing and ranting at the staff/me and this is absolutely NOT her. Before all this she was the most polite and kind person you would ever meet. Everyone who knew her loved her... typical Irish mammy type of woman for those who would know what that means ❤️

In my darkest moments I think it would have been kinder if the stroke had just took her that night and then of course I am wracked with guilt. But this is no life for her. She has no quality of life at all and I feel like I am mourning my mum who is still here but really the mum I knew and adore has long gone now 😢

I am so sorry for you. My heart goes out to you. My father developed vascular dementia after a series of heart attacks/strokes. He had one heart attack while in hospital and they told us he wouldn’t have survived it had he been at home. at the time we were so relieved but then he developed vascular dementia and rapidly lost the use of his arms and legs and rarely knew us. It was a long eight years but fortunately he was in a good nursing home. I wish I had words of comfort for you. I know how heart rending it is to watch a parent go through this and I fully understand how you feel that you are already mourning her. Try to hang on to all the good memories that you have of her. Hopefully the disease will enter a different phase and she will quieten down. In the meantime, take care of yourself and allow yourself some treats. Best wishes.

My father had vascular dementia. It was "quick" and he had it for 3/4 years.

It's a really long hard road.
The carers were amazing. I coped by emotionally distancing myself early on.
My situation was different though as he wasn't a pleasant man pre-diagnosis. Think classic Irish fond of the drink daddy...

I found it very clearly amped up his previous personality traits and quirks significantly. I also found once correctly medicated he was WAY calmer.

• He was totally obsessed people were taking his money.
• he was a talented tradesman and would take tools from the service repairs guys and hide them. He'd then start projects and go round repairing and fixing things. He also opened a pipe and caused a huge leak
• He talked for hours every day about me and my mother who had divorced him 15 years previously and how she stole his money and had tried to ruin him and turn his child against him. (My mother was a Saint to stay do long)
• when we ruened up No one at the nursing home knew he had a son... but had heard ALL about me heartbreaking for my DB.

It's hard all round unfortunately...

@NormaLouiseBates I could have written that about my grandmother. She had vascular dementia after a stroke - she changed completely. It's absolutely heartbreaking to see.
Please see the GP and ask for further tests.

This exact thing happened/ is happening to my grandmother. Very sweet little old lady is obsessed with someone stealing her clothes very angry shouting a lot. She saw the older people mental health team and has been started on mirtazepine and memantine which has hugely improved her mood and reduced the intensity of delusions. I’d recommend getting her assessed by the appropriate professionals who are the specialists in prescribing for dementia. Good luck x

Thank you all so much for sharing your experiences with me. I've just called the surgery and the doctor is going to call me back this morning. I don't even know at this stage what benefit there would be to her getting a diagnosis. She's bed bound, only has feeling in her right arm and right leg and is doubly incontinent so an official diagnosis won't make a huge amount of difference I guess.

It's so fucking hard. I'm just on my way up now to see her and the familiar sense of dread is starting to wash over me. Then I feel so terribly guilty for feeling this way... she was an amazing Mum and Nanny so being there for her now is the least I can do.

Didn't want to read and run as my heart goes out to you and I am another one who has experienced some of this .
My Ddad had vascular dementia after a series of small strokes and it was heartbreaking.
What I can say though is that we experienced the worst of times when he was moved to a hospital and it did improve when he was more settled .
Please don't feel guilty for how you feel - you are experiencing something so awful your feelings are completely normal .

My mother had an aneurysm burst in October and her behaviour has been really challenging ever since. However, she finally got some specialist input on her medication and is now on a mood stabiliser, a major antidepressant and a tranquilliser they can give when she is very anxious.

Rather than the diagnosis I would focus on the symptoms. Let the doctor worry about what it's called. I would explain the distress and worrying behaviour you have seen, that it's a complete personality change and you are finding it very difficult to believe she's not suffering like this.

As far as wishing your mother wasnt having to endure this - so do i. Every morning I hope that I will hear my mother has died, because I know her, and this is no life for anyone. Having said that, some proper medication has hugely improved the situation.

Thank you again for sharing your experiences with me. I appreciate it so much.

The doctor is going to see her tomorrow; we had a good chat on Monday and he agrees with me that there is almost certainly something else going on. He ordered some blood tests a few weeks ago to just check there was nothing else medical happening and they all came back clear as I thought they probably would.

DM has vascular dementia following several strokes (and also alzheimers). Not sure which symptoms belong with which diagnosis (or maybe its impossible to tell) but she's paralysed on one side, doubly incontinent, paranoid that everyone is stealing her stuff in the nursing home (stuff goes missing in the laundry), confabulates stories and conversations, and has forgotten her parents, siblings and DF have died. We just tell her they're having coffee/gone to shops so as not to upset her - and then she forgets. She's prescribed ADs as she became very agitated and depressed after DF died. She does hallucinate from time to time and "sees" DF (half dreaming I think) which she's confused about. So she does have some recall occasionally that he's gone.

I feel so sorry for her and part of me wishes she'd gone following her first stroke.

@Chocolateis1ofyour5aday

DM has vascular dementia following several strokes (and also alzheimers). Not sure which symptoms belong with which diagnosis (or maybe its impossible to tell) but she's paralysed on one side, doubly incontinent, paranoid that everyone is stealing her stuff in the nursing home (stuff goes missing in the laundry), confabulates stories and conversations, and has forgotten her parents, siblings and DF have died. We just tell her they're having coffee/gone to shops so as not to upset her - and then she forgets. She's prescribed ADs as she became very agitated and depressed after DF died. She does hallucinate from time to time and "sees" DF (half dreaming I think) which she's confused about. So she does have some recall occasionally that he's gone.

I feel so sorry for her and part of me wishes she'd gone following her first stroke.

I have very similar conversations with Mum. She often thinks I'm one of her dead sisters and she seems to have mostly forgotten that dad died 3 years ago. She kept saying the other day that she needed to go and get home as "my husband is there and he's dead so I need to go" 😢 we mostly just go along with what she's saying now as it's better than upsetting her.

I know it's hard, but you do just have to go along with what they say. Placate them is the best way to keep them calm and happy.

My GM forgot her husband (my grandpa), and she didn't know anyone else in the family apart from my ex even though he never visited her. She'd tell people that her son-in-law would arrest them! God knows why he stuck in her mind!

Just another thought, have you thought about contacting the Stroke association for support? Has anyone ever sat you down and explained the extent of your mothers stroke and what she is / isn't able to understand etc? If not it might be worth contacting her stroke consultant at the hospital that treated her, or possibly the speech and language therapist or occupational therapist that I presume would have worked with her?