His paranoia is getting me down

[DMWalker]

I have been trying so get advice and help through the professional services but I am at a loss at what I can do now.

My husband Dave, has been seeing the specialist quite frequently of late because of the changes in his behaviour.

Last week he was prescribed a small dose of an anti psychotic drug to calm down his paranoia, he sees 'men' in the house and thinks I am in cahoots with them.

It is so bad I have had to take all the mirrors from the walls and try to cover up the large mirrored wardrobe in his bedroom.

I had to put him back into his bed twice last night, then at 2am he refused to go into his room saying the men were there, I put him into my bed and settled myself on the settee, he again got up at 4am (he takes a tablet to help him sleep), I took him back to bed yet again but he came down at 5am, I'm exhausted I don't know how he keeps going.

He is constantly talking about 'me and the men', it's getting me down, I took him out yesterday, he caught sight of himself in a mirror and started swearing and calling for the police.

How do I keep going on with him like this? Does anyone know if these episodes are short lived? He goes to a day centre twice a week but that's a battle, my stomach churns each time the bus turns up because he could refuse to go.

I knew this wasn't going to be easy but never imagined it would be so tiring.

Sorry to moan,

Love Dee

 

[sunny]

Unless you ask and actually DEMAND the help that you need, the professionals will let you get on with it. Have you phoned the Alzheimers help line or your local office to get further information about how to get further help and advice.
If you are not able to sleep you and he are going to be suffering sleep deprivation and you and he will become exhausted.
This is a brain disease and so therefore it affects people in different ways depending on the type of Alzheimers they have and your husband acting in the way that he is - is by no means unusual for this disease and how long it will go on for if left without further treatment or intervention is a guessing game.
As a carer you have rights and benefits too so I will ask you are you getting all the help you can and have you found out what help you can get. Now you will have to make decisions about how far you want to go with his care and when you want respite or your health will suffer as well. Its not his fault or your fault he has this disease but you will have to be very pushy/pro-active about what help you need. If you dont ask from the relevant professional bodies then you wont get. You need to tell his medics what he is doing at night and how you and he are being affected. Dont be sorry and dont apologise for moaning - its very natural - but get the help you need from the professionals before you drop with exhaustion. It does mean that you will have ask for it and literally sometimes you have demand it for your own sanity. Also if there are others in the family i.e. daughters/sons - can they lend a hand temporarily whilst you are sorting further care out so you can have a good nights sleep? Dont be afraid to ask them - too many people dont ask their sons/daughters to help out as well - but this is a family crisis so I think they should afterall it is their father.

I can understand, when you are tired and then you have to phone people to get the relevant help and sometimes its like a brick wall - it just exhausts you but a bit of foot stamping does not go amiss.

 

[DMWalker]

Thank you Sunny, I will call the doctor on Monday.

I have told him the problems and he will have presumed the anti psychotic medication would work but other than making Dave drowsy he still rants.

I have a daughter who lives close by, she is Dave's step daughter and has two children and a baby so she has enough to cope with. Dave has no family who keep in touch.

He should be going for two nights respite on Tuesday, the last time it was arranged he flatly refused to stay so I had to bring him home again. I wish I had someone else to go with him, I am dreading taking him.

I think the tiredness makes the problems seem so much worse.

Regards Dee

 

[sunny]

of course it does and there does not appear to be help with the care of people with alzheimers at NIGHT at home which is when most of the action is going to be. Their day and night become very confused and also with the hallucinations he is having are very real for him and obviously distress him. I got a link for the hallucinations from the AS website.



http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=172

Mum used to have the same thing about mirrors, but she did not get upset about it - in fact she was fascinated by seeing herself in the mirror although she did not know it was herself she thought it was somebody else and she used to wave and smile at that person, but your husband obviously sees himself as another love rival for your affections and is really obviously very put out and upset.

Its the brain playing tricks on the eyes. Sad isnt it.

 

[Grannie G]

Hello Dee

You do not seem to have been getting appropriate support from day one. Now you need it more than ever.
There`s no point in seeing the speciaist more frequently if so little constructive help is given. It just sounds like a `keep taking the tablets` situation. That`s OK if the `tablets` work but in Dave`s case he might as well be taking smarties.

Are you really letting the specialist know you just cannot continue at this level?
Has residential care been suggested?
Could it be you are trying to put off making a decision about residential care?

You have been struggling for such a long time Dee. I wonder how far you are prepared to go.

I`m not criticising, I`m sure you know that. I just can`t bear to hear nothing is being done to help you.

 

[Grannie G]

He should be going for two nights respite on Tuesday, the last time it was arranged he flatly refused to stay so I had to bring him home again. I wish I had someone else to go with him, I am dreading taking him.

When I had these fears about Dhiren, our CPN and specialist said they would make sure he stayed. It might have meant a section but sometimes its the only way.

 

[DMWalker]

Thank you Sylvia,

Regarding the respite, I arranged it for him to go Tuesday afternoon because his outreach worker visits then and I thought that would be ideal, he took him there for his pre respite visit and left him, I picked him up, his mood was terrible.

Unfortunately Peter has arranged to see someone else on that day, I don't have anyone else that I could ask.

The specialist has not mentioned residential care, he said to Dave last Tuesday that he was prescribing him tablets to keep him at home for as long as possible.

Dave should have gone to the day centre today, I had a hard time persuading him to get his coat on, I have to tell him I have a hospital appointment, then they rang to say it was closed due to the snow - such is life!

Love Dee

 

[DMWalker]

Just another downer - Dave's CPN changed areas two weeks ago and we haven't got another as yet!

 

[sunny]

Everything seems to be against you including the snow! I am afraid that is typical and the changeover of staff i.e. CPN is typical too - so many changes of staff that you have to deal with and explain all over again to. Life is an absolute bummer sometimes no doubt about it. Thinking of you both and all you are going through! and when you speak to the Doctor on Monday dont pull any punches and let rip.

 

[sleepless]

Hello, I just want to say I agree with other posters -- you must ask for help from the doctor, or CPN (do they think problems go 'on hold' between times?)-- you have been left to get on with it, and that's not good enough.
Reading some of the posts on TP I find myself thinking 'Yes, wandering / incontinence / aggression etc. must be the worst thing about dementia,' but paranoia must seem top of the list when you are facing it on such a regular basis, and especially when it takes this form. My heart goes out to you, and I hope you can take the advice others have given, and soon.
sleepless.

 

[DMWalker]

Hi all,

Just an update on Dave. Thankfully the weekend is over, I always feel so isolated when I can't contact anyone should I need to.

My son's ex partner came yesterday for dinner with my young granddaughter, Dave sat upstairs all the time, coming down only for his dinner and saying' Is she still here?', I felt so embarrassed. He only spoke to her when she was going home.

This morning I rang the Alzheimer's Society for advice on Dave's respite tomorrow until Thursday, they said I should ring the SW, Dave's SW was off today so I was put through to the duty officer, she was so helpful and is arranging for someone to come and take him to the care home tomorrow. I haven't said anything to him, I don't know what to say. I mentioned convalescence some months ago and he went mad, I can't cope with that again.

Hopefully this time tomorrow I may be looking forward to a night's sleep, bliss! I'll let you know.

Love Dee

 

[Izzy]

Good luck. I'll be thinking of you. x

 

[Jo1958]

Dee, hi
Good luck tomorrow, I'll be thinking about you and hoping all does well. Well done for making that phone call and getting support getting Dave into resite tomorrow, they are there to help.
Take care of yourself, with kind regards from Jo

 

[Grannie G]

Thank goodness for the duty officer Dee.
Fingers crossed Dave will go without objecting and you will have some very well deserved rest. xx

 

[Helen33]

Dear Dee,

I can see that tomorrow is a big day for you and I hope it all goes as well as it can. Will look forward to hearing how you are once hubby has gone into respite.

Love

 

[DMWalker]

Such is life The care home rang to say the snow is so bad cars cannot get up the hill. The SW rang to say she wasn't confident at taking Dave there on her own as he can be difficult, also she hasn't seen Dave for 12 months so he wouldn't know her.
In light of this his respite has been delayed until 5th Jan.

I must say at least I have lost the stomach churning feeling I have had for a few days. Dave is blissfully unaware of what is happening.

The tablets the consultant prescribed are giving me a bit of respite as they make him sleepy so all's not bad.

Surely the snow will have gone by January!!!

Love Dee

 

[Grannie G]

What a terrible let down Dee. My heart sank when I read your news.

The tablets the consultant prescribed are giving me a bit of respite as they make him sleepy so all's not bad.

Its a necessary evil Dee. Long may it last. xx

 

[Izzy]

What a shame. You do sound positive though. I hope things go well for you. x