I know I'm not the only one but I am lost to what I can do next

[Feelinglost]

Hi, I know I'm not the only wife living with a husband who has vascular dementia, so I know I'm not alone.
I have tried but I am getting so lost.
All the nurses, doctors etc tell me there is nothing that can be done when it comes to my husbands dementia.
I wanted a second scan to see if he had any other strokes no matter how small like the first one that caused his condition, but no.
No medication nothing, get on with it.
In the end I just list I just asked if they wanted me to shove him in a cupboard and forget about him, that's how they made me feel.
He has attacked me, broke my nose, black eyes bruised cheek bones, the police took him away and it was me who felt bad. He was charged with assault, but this was before they gave us a definite diagnosis.
I searched fir him and found him. I brought him home and persuaded everyone concerned that something was wrong and to give him a second chance. We knew he was acting out of character but the doctors brushed it off even then.
That was 5yrs ago, it took me nearly 2yrs before they would do anything, it's so wrong.
I don't want to be a victim and I am not going to be a villain.
He is 62 & had to stop smoking last year when he had fluid drained from his lung, I buy the lowest alcoholic lager so he can have some pleasure but all it does is make him moody and won't eat.
I I refuse to get any, which is only 12 cans of 2% lager he gets so angry.
I get blamed for everything, it was me who caused it, then another day he is fine.
I guess I just want to get it off my chest, and im sorry there are more of you out there with far worse than I am dealing with.
There is only him, my mum and me, thanks for listening

 

[nae sporran]

Welcome to TP, Feelinglost. You are certainly not alone in struggling with this awful condition, and should not feel bad if your husband has to be taken away by the Police. Your safety is important too. Is there a safe room you can lock yourself in if it happens again ?
My partner has vascular dementia and has never been offered any medication to combat it either, but you should ask your GP if there is any medication to control your husband's moods. Others n here with more experience will be around to give better advice, but
https://www.alzheimers.org.uk/get-support/national-dementia-helpline and
https://www.alzheimers.org.uk/about...is/symptoms/aggression-looking-after-yourself may give you some information.
A previous thread is a useful guide to better communication, though much of it is easier said than done. https://forum.alzheimers.org.uk/threads/compassionate-communication-with-the-memory-impaired.30801/

 

[Kevinl]

Hi Feelinglost, welcome to TP
Sadly you're in a place a lot of us has been, in my case the violence got so bad the police put her in the cage in the back of their van (paramedic wouldn't touch her) carted her off to the local hospital where she was sectioned.
After 6 months in a secure assessment she was "well" enough to be moved to an EMI nursing home, been there for 2.5 years now.
My wife liked to drink but I gave her grape juice that I put in a wine bottle and she smoked her head off which apart from the health implications cost a fortune, deny her a cigarette and the minute you turned your back she'd go for you.
The situation really seems to be one of crisis intervention or no help at all other than soothing words and get on with it.
I managed to stay on top of it alone for 7-8 years and to be honest when the crisis came it was a relief. Sorry to sound so negative but I never got any help at all and that seems to be the norm on here.
In the meantime have a room with a lock on it and a charged up mobile as unpredictable behaviour can escalate. Stay safe.
K

 

[canary]

There is no mediation for the Vascular Dementia as such, but there is medication for the aggression.
See if your GP will refer you back to the memory clinic or the Community Psychiatric Team for help with medication.

 

[Guzelle]

My husband had vascular dementia and Alzheimer’s, he can be aggressive and violent. He now takes mirtazipine an antidepressant which calms him down. He has been much better since taking this. Have you asked for something to calm him down ?

 

[Feelinglost]

Hi thanks for your support, they, the medical powers that be, have told me on more than one occasion that there is medication they can give him,
No mood stabilisers or anything, they did give out a prescription of mirtazapine, but is was for me.
I wouldn't take it for a long time I didn't want to be dependant on anything, and I needed to be alert but as time went on I thought sod it I wil give it ago.
Now when they ask me if it's helping I can honestly say I don't know, which took them by surprise, but how do I know if they work or not.
I don't feel any different, maybe my life would feel shittier than it does if I didn't take them.
I have arthritis and on one occasion when it was really bad I stayed in bed for an extra 1/2 he, he went ballistic and said he was the one supposed to be ill.
Anyway he's in bed now so I can watch a bit of tv without the constant muttering and nasty comments.
Thanks

 

[canary]

What???!!!!!!! I cant believe that. Many, many people with dementia get medication for aggression.
Has he actually been diagnosed with dementia? Does everyone know the extent of his aggression?

Make sure that you always have a charged phone on you and do not feel badly if you have to call the police. Your saftly is paramount. Also make sure you have a safe room that you can lock from the inside that you can go to in an emergency.

 

[Guzelle]

I should give him the mirtazipine! I have a mental health nurse that comes out to see him regularly and monitors his moods . You need to shout more at medical people you should not have to put up with his aggression!

 

[Feelinglost]

Firstly thanks again for your support.
They know about his behaviour, one nurse from the Memory Clinic told me to "step back, leave the room for 5 mins" when the shouting started, great advice eh!!
He isn't angry all the time which makes it worse in a way, you don't know what's next or who you will wake up with.
I am in touch with Dementia Care, but they only call once in a blue moon, the nurse from our practice is not helpful, like I said after his diagnosis was confirmed they said there was nothing they could give him, as it wouldn't help.
I asked again if they could do anymore tests to see if it had worsened, I don't mean in his behaviour, but if there were signs of a second stroke, but she said no it would be a waste of time and just bombard his brain.

He will disappear in to the kitchen and come back with a cuppa, just one for him, or a sandwich.
He prefers to make his own meals, simple ones.
I was told to let him do if while he still can, which makes me look like a cow for not cooking his meals.
I'm sorry you all know what its like, the thing is we have been married for over 30yrs and for everything he had done to me and said to me he's still my husband and I love him, sometimes I don't know why, but I keep telling my self its not him saying and doing these awful things its the disease that lives in him.
My dad had to go into a care home, his Parkinson's meds accelerated his dementia and my husband is scared to death that he will end up like him.
Right im going to watch tv with out using the eyes in the back of my head.
Thanks again

 

[canary]

Who exactly are these doctors and nurses who are giving you this poor advice?
Are you talking about the doctors and nurses in your GPs practice? GPs ofen have little understanding of dementia, Im afraid. Have you been back to the memory clinic or been referred to the Community Psychiatric Team?

 

[JennyC_123]

Wow, it's terrible the doctors gave you a prescription instead of your husband. I'm sorry you have to deal with unhelpful doctors.

I'm wondering if it would help if you recorded a video of his violent behavior on your mobile phone? Maybe if the doctors saw what his behaviour is like at home they'd be more willing to act -- "a picture is worth a thousand words" and all that. Perhaps a video would help show the reality of what you're living with instead of the notes they've put down on his medical record.

You mentioned he isn't angry all the time. Maybe the doctors don't see his violent behaviour when he's in the hospital, but the video will help? Only record the video if it doesn't put yourself in danger, your own safety is important...

 

[AliceA]

Our new GP unsuccessfully requested a second Memory Assessment as it was three years since the first. The reply was there was no point the disease was just progressing.
At the time the GP thought it would be helpful to me. I was uncertain because as far as I could see it would not provide any practical help. I think it may have helped her as I feel in spite of all the good work of the Alzheimer's Society there is little understanding in the medical profession.

I feel every surgery should have a dedicated person(s) for Dementia guidance for Staff as well as patients. A first port of call.
Every hospital especially A&E should have a procedure in place for dealing with people who have cognitive decline through to a dementia. Dimmer lights and a quieter area.
It would save time, money and energy.

This lack of understanding was very noticeable when I was admitted to a geriatric ward. My age alone qualified me rather than my illness. In my bay of six three had full blown dementia.
One kept trying to escape, the bed sides were raised so she tried to climb over. She rang her bell so it was put of reach. I used mine on her behalf and tried to soothe her until help arrived. Another miscounted numbers from the moment she woke until she slept affecting the whole ward. I had to translate for another. I was in for an expected heart attack!
Staff were too busy, there was too much paper word and little training. Bank staff were a feature so not always experienced to the needs of the ward.
I do feel that just like with AIDS we need more education. I was doing a course in the early days of that and there was so much confusion even among people who were well qualified. That is another story.

I praise the Alzheimers society but people outside seem to think the dementia is Alzheimer's, where as vascular is very different but with many similarities. Every relationship is different, every situation is different.
We all have our strengths and weaknesses, it is never greener on the other side of the fence. It is never simple, a knowledge of person centred care rather than illness centred care helps, but people without the natural ability to do this need training.
Dealing with aggression needs more help, not easy when it comes out of the blue. Short advice such as walk away is not enough.

 

[kindred]

Hi, I know I'm not the only wife living with a husband who has vascular dementia, so I know I'm not alone.
I have tried but I am getting so lost.
All the nurses, doctors etc tell me there is nothing that can be done when it comes to my husbands dementia.
I wanted a second scan to see if he had any other strokes no matter how small like the first one that caused his condition, but no.
No medication nothing, get on with it.
In the end I just list I just asked if they wanted me to shove him in a cupboard and forget about him, that's how they made me feel.
He has attacked me, broke my nose, black eyes bruised cheek bones, the police took him away and it was me who felt bad. He was charged with assault, but this was before they gave us a definite diagnosis.
I searched fir him and found him. I brought him home and persuaded everyone concerned that something was wrong and to give him a second chance. We knew he was acting out of character but the doctors brushed it off even then.
That was 5yrs ago, it took me nearly 2yrs before they would do anything, it's so wrong.
I don't want to be a victim and I am not going to be a villain.
He is 62 & had to stop smoking last year when he had fluid drained from his lung, I buy the lowest alcoholic lager so he can have some pleasure but all it does is make him moody and won't eat.
I I refuse to get any, which is only 12 cans of 2% lager he gets so angry.
I get blamed for everything, it was me who caused it, then another day he is fine.
I guess I just want to get it off my chest, and im sorry there are more of you out there with far worse than I am dealing with.
There is only him, my mum and me, thanks for listening

Sweetheart, can you carry on or would you like to start to think about residential care? It's not easy but I am concerned for you. We could start to work on ideas pointing that way. At the very least you need respite. What is your contact with the social services? warmest, Kindred.

 

[canary]

Ive been thinking about this @Feelinglost and I think you would find it helpful to talk to an Admiral Nurse. They are nurses who specialise in dementia. I dont know if there are any where you live (they are a bit thin on the ground), but they have a helpline - Admiral Nurse Dementia Helpline on 0800 888 6678 or email helpline@dementiauk.

Im sure they would be able to point you in the right direction to get some help.

 

[margherita]

can you carry on or would you like to start to think about residential care? It's not easy but I am concerned for you.

That's what I was thinking while I was reading the thread.
The situation sounds unmanageable.

 

[kindred]

That's what I was thinking while I was reading the thread.
The situation sounds unmanageable.

Thank you, it does sound unmanageable, I so agree. In fact so many of the situations described here are unmanageable. People are living in fear. Kindred.