I Need Some Advice

[Jan J]

Hi Everyone,

I joined this forum a month ago and have spent that time just reading everyone's heartbreaking stories and worrying myself about what lies ahead! I really need some advice but will give you some background info (I will try to be brief!).

My mum was diagnosed with AD about 2yrs ago, she is 85 yrs old, lives with my dad (her primary carer) who is 80yrs old and suffers from Rheumatoid Arthritis and they live about 150 miles away from me.

At the moment she has a carer who visits her for 1hr on Mondays and Fridays and for 2hrs on Wednesdays. Before Christmas she was attending a day centre for two days a week (Tuesday and Thursday) but found it too much and ended up not going at all.

At the moment she is at the stage where her short term memory is very poor, she constantly loses things and can become very irritable. I speak to her every day on the phone and generally just listen as, to have a two way conversation, is difficult.

She has been prescribed Aricept as well as blood pressure tablets but up to and around Christmas, was taking nothing on a regular basis. Just after Xmas the day centre (following discussions with the Carers) prescribed the antipsychotic drug trifluoperazine because she was becoming so paranoid and upset even though they hadn't seen her for weeks. She has not seen her GP for months and no one was aware that she was not taking the Aricept - her GP thought the day centre was looking after her and the day centre did not seem concerned that they had not seen her for months.

My mum is absolutely adamant that she will not go in to respite care to give my dad a rest and so, to help, they come down and stay with us for a week every 4/5 weeks, my husband picks them up one weekend and takes them back the following weekend. They are coming down next weekend their third visit since Xmas.

We have a meeting in 2 weeks with the Social Workers - and so to my questions.

1. Mum has started hearing voices and thinking that there are people in the
bedroom. She sees shapes and thinks that people are climbing up the wwardrobes. When I suggest that she might be dreaming, she gets mad at me. What can I say because she is becoming frightened to go to bed?

2. At the meeting with the Social Workers , I am worried that they will want to go
ahead with the antipsychotic drugs as her paranoia is getting worse. Does anyone have any experience with these drugs. I looked up some of the possible side effects and they include tongue movement, chewing motion, protrusion of tongue etc etc and that if these symptoms occur then they could be permanent! Has anyone any experience of this?

3. And finally, what sort of questions should I be asking the social workers? I do not know what sort of care is offered. I am so worried that they will suggest that she cannot stay at home much longer because I know it will be the beginning of the end if she has to go in a home - she will fight tooth and nail.

I am sorry this is so long, I have been debating whether to post this but have finally decided to bite the bullet.

Thanks for listening JanJ

 

[Sheila]

Dear Jan, I am so sorry to hear about your Mum. This is a very difficult time for you all. You are doing your best to support your Dad by having them to stay every 4/5 weeks, coupled by constant back up on the phone. What he needs now is a care plan. It would really benefit them both if your Mum could be persuaded back into day care. (its usually about 10 till 2.30 ish) This would give your Dad a break. Things will just carry on and he will get more and more exhausted without. I think he does need to put his foot down here if he is going to manage much longer at home. I had to. We started with One day a week, as things got worse, we progressed to five days. This and one nights sleep a week plus a regular respite week was how I coped. The last few months I also had someone in to help get Mum up and to bed. It gave me a support network which gave me strength each day in knowing I was not alone with it all. Your Dad may find it difficult at first, but your Mum will learn to accept. If he really wants to keep her at home, at least for now, he needs this help and time out. He needs to discuss these things with her GP or specialist or SW. It is the only way really. Thinking of you, love She. XX

 

[Norman]

Jan
Sheila is right Dad need help and back up.
He/you should ask the SW an assessment for Mum and himself.
Then draw up care plans for both.
There will then be a picture of needs for both of them which the SW should progress.
Hope this helps
Norman

 

[Brucie]

Hello Jan

Regarding the hearing of voices etc... have you put any light in her room that is always on? Once our eyes have become accustomed to the darkness, our brains often try to interpret shadows, and I have thought I've seen things moving myself, in the dark, when there was nothing there.

Lights may help.

Also, we interpret sounds that any house makes. When I was tiny, I could hear the blood pumping in my ears and was absolutely convinced there were mice in the oven downstairs.

People who are blind often find their body copes by heightening the other senses. This may happen, but in a less controlled way, when people have dementia. I know that my wife hears things at a certain normal frequency, but not at others. It could be that Mum IS hearing voices, but they are outside, downstairs, next door or something. She simply can't work out that this is the situation.

Try the gentle lie - say you can hear the voices too, but that it is.... then make up something. Maybe say you'll tell them to stop. Tell her it is nothing to worry about. If you suggest she is dreaming, that is saying she isn't hearing them, and from her viewpoint, she definitely is; that is why she gets angry.

Please, never be afraid to post things here!

 

[Jan J]

Thanks for help

Hi,

Just to say thanks for all your kind words and advice. She, we have managed to get mum back to the day centre for one day a week although sometimes she says that it is boring with a lot of old people (!) sitting around saying nothing. The alternative is to be sitting at home with no one to talk to!

And Bruce, thanks for the advice about the light, I will get one and see if it helps. I hadn't thought of that - still a novice as far as AD is concerned I'm afraid.

I would still be interested if anyone has had any experience of the side effects of the antipsychotic drugs.

Thanks again for your help.

Jan