brain injury acquired dementia

[Suziewong15]

Does anyone have experience with brain injury acquired dementia? My husband had his first emergency brain surgery in 2007 due to a large colloid cyst causing hydrocephalus. He then developed shingles, ME and fibromyalgia. 18 months ago he suffered a large brain bleed which has led to him having to have 24 nursing care for brain injury acquired dementia. Apart from all his mental cognitive issues he’s ok. It’s been heart breaking to watch this very intelligent, charismatic man suffer this way. Any tips on how to talk and help him as he thinks nothings wrong with him and thinks I won’t take him home but I can’t 🥲

[Leaf100]

Hi SW

I have a parent in a care home. I would say 80% of them have some sort of dementia. My parents doesn't.

So, I can see a few sides.

The staff often don't want to make people sad or worry. So , you get things like the case if the man who goes to the window and peers into the parking lot , looking for his car - they tell him it's inn the garage and his daughter will.bring it tomorrow. We'll, not quite a lie as it in her garage and has been the last 8 months. They don't remind him he lives there no as she gets upset. As long as he thinks he is 'just visiting' he seems OK.

And, what about those moments when people do remember and know they are being lied to? Those happen too, and then they get mad - and who would blame them?

I have talked to room mates and just people sat around. Some are in and out as far as being present goes. Some arectelling wild stories - except if you know what is going on with them the thread of the story is correct though the details aren't.

For example, one sweet lady I will call D has been angry ofblate. I saw she had gotten put the door one day and was getting away from.the place as fast as she could go, sheer glee on her face. A few days later I saw her sat somewhere and she looked really angry. She said 'I hate this store..they take you money and don't treat you very well and I want to take my business elsewhere and never come back'. Well, it is true she is paying to be there and she wasn't happy with a few things and she does want to leave. It's just not a store.

I try to keep the conversation as neutral as possible, make a joke or talk about other things and just go with the conversation.

Sure, I am.there to visit my parent and they may be getting care (I am not allowed in the room then) or I have gone to get them a drink and some poor soul is sat on their own wo I will say hi and pass the time of day if they care to.

It is not an easy thing by any means.

I'd say keep visiting and keep an eye on the care, and maybe talk to Headway re coping strategies, ideas of how to talk to him, etc.

I would say try to connect from.where they are if you can and do try not to lie because you don't know where their mind is - and if they know you are lying it makes them more frustrated. And then I have seen food thrown and attempts to kick staff. It looked like sheer frustration to me - the frusrration wouldn't have helped any, at minimum.

Best wishes to you both, it's difficult.

Keep us posted.

[Suziewong15 in reply to Leaf100]

Thank you for your advice. Today was a good visit, at first he didn’t want to see me but our son gently persuaded him otherwise. He had a game of table football with him and beat him again!! His mood was good today then drifted to wanting to come home. He’s betwixt between as they say. I managed to steer him away from issues that upset him, so I’m learning!! So hard sometimes. My lovely funny husband is still there at times 🥰

[Jumpingjack15]

hi I suffered total memory loss which was similar to dementia,not nice !but gradually comes back.

I had a bleed and a craniotomy

KR Les

[haverfordwest]

We learnt with Mum in Law not to argue or say she was wrong as that would just upset her, even if what she was saying was wrong. If she was upset by someone we'd just say things like "ok she/he didn't mean it, it was a mistake," and then change the subject. When she wanted to leave we'd say "we'll talk about that but let's just do this or talk about this first" Disagreeing was the worst thing to do as she was adamant that she was right, so it was always easier to ignore things and gently steer the conversation away to something else.

You could try saying "we'll talk about it later or tomorrow", you'll learn the right things to say, there will be many mistakes along the way but once you've mastered the art of calming the situation it makes every visit easier.

Good luck and don't take harsh words said to you to heart, they don't really mean it. x

[Suziewong15 in reply to haverfordwest]

Thank you for your kind words, and yes thats starting to make sense now. It’s hard not to take the harsh words to heart, it just takes time I suppose. I went with my eldest son today to see my husband. All in all it was a good visit which I was so hoping for. I managed to deviate from his questions about home and why I didn’t take him home at Xmas. He certainly remembers that!

[haverfordwest in reply to Suziewong15]

It's all a big learning curve and not an easy one, no two people react the same. You may end up being the one taking the brunt of any frustration from your hubby, hopefully not, just try to let it go over your head and don't think about it.

Wishing you all the best and a lot of patience, you will need it, but the times when he will be his old self will be treasured and the ones to reflect on.

Take care. X

[Suziewong15 in reply to haverfordwest]

Thank you very wise words I must remember

[litethatnevergoesout]

I watched as my dad declined rapidly from dementia, it was not due to brain injury though, he suffered from chronic severe headaches. sometimes he was present and sometimes he was not, he would tell me things like stop being so loud and lecture me and I would just say I’m sorry I will behave. other times he would be very frustrated over some tools or parts in the yard that weren’t covered up or secured and there were neighborhood kids coming into the yard and getting into his stuff, I said I will go take care of it right now and make sure the kids don’t ever come back, there was no yard he lived on a lake at this time and of course there were no kids as it wasn’t a neighborhood. like the others have stated, we help put their problems at rest as best we can and mostly that requires going along with the story or misdirecting it whichever way helps relieve their stress about things that are not real. dementia is unforgiving. he passed in 2022 of a stroke while sleeping.

[Suziewong15]

A blessing that he passed whilst asleep but so hard for you and any family to watch your father’s decline. Dementia is such a cruel, unforgiving disease.

There was a football table in the home when we last visited and my son and husband played. It was like old times watching them both try and beat each other then my husband won the game! That memory was still there but he was exhausted after and couldn’t remember what he had for breakfast. He’s no memory of time but he knows he’s not at home and asks me to come and take him home!