Advice needed

[AJay]

Hi everyone and a slighly belated Happy New Year to all

As per usual I'm strugging to understand things with my Dad and feel I'm getting to the end of my current tether.

Dad's dementia seems to be getting increasingly worse, he took a 'turn' and was very distressed by hallucinations a couple of weeks before Christmas and a visit to the NHS drop in centre (his doctor wouldn't come out immediately and said it would be at least a 10 hour wait if he did) resulted in the doc there saying it could be a UTI though Dad was totally unable to provide a sample, and gave a course of antibiotics anyway. He did warn me that it could also be his dementia moving on a stage.

We eventually got the course of antibiotics down him - Dad constantly forgets to take his tablets, and when reminded prefers to put them at the back of a drawer rather than in his mouth! - and he seemed to settle down until New Years Eve when he started to hallucinate quite badly again. He's now like this most days, doesn't know what time of day or what day it is, insists that every time he goes outside people are being aggressive to him and shouting at him, constantly hears things and can be quite aggressive towards me because he's obviously distressed about it all.

As he insists that no care worker ever darkens his door, I have no professional person to check on him and who I can ask if this is 'normal' and what action, if any, I need to take. I'm getting really frustrated because I just don't know how to handle all this and find that I then take it out on Dad. I feel sometimes that he would be safer and much better loked after in a care home (I work 30 hours a week) but there's no question that Dad will accept going into one. If I reduce my hours any more, I'll have to give up my job as I communute quite a distance and it wouldn't be cost effective for me, and jobs don't turn up on your doorstep the next day. Also, I discovered on collecting his latest prescription that his doctor has now reduced his dementia medication, possibly because Dad now has very low blood pressure and it's maybe having an effect on it. However, I'm not convinced that it was working anyway.

Can anyone give me any reassurance on his behaviour and how to cope with it? I'm starting to feel that because of my own frustrations with it all I'm making life very difficult for Dad instead of making his final years peaceful and happy.

AJay

 

[BeckyJan]

Hello Ajay:

You are in an extremely difficult position especially with your Dad not appearing to want help.

You mention his medication has been reduced - does that mean he has a Mental Health Consultant or CPN. He should have! If so, then I do believe the best practical advice should come from the CPN. I hope that he or she is good, as standards do vary.
Do I understand that he has not completed the antibiotic course? Obviously that is important so as to eliminate a UTI. Once any infection is cleared up then it may be easier for someone to comment about his dementia progress.

Sorry I am not being very helpful. You are obviously very very concerned but you can only do what you can do. If your Dad does not want help you may just have to stand back a little until he become more desperate.

I am sure you will get other helpful comments here.
Best wishes and good luck Jan

 

[Grannie G]

Hello Ajay.

I think you are being wonderful with your father, you are doing all you possibly can and are still so worried about him.

It`s a sad fact of Alzheimers that some sufferers just will not accept help. Who can say what`s going through their minds, it may be fear, paranoia, total confusion, denial, anything.

BeckyJan`s suggestion you contact the CPN or consultant is good advice. Only they can discuss your father`s condition with you and give you some idea of the future.

It does sound as if he`ll have to be considered at risk, before intervention can be taken without his consent.

I don`t think anyone will be able to reassure you about his behaviour or help you cope with it. I wish there was an answer. I`m so sorry.

Take care xx

 

[AJay]

Hi both

Many thanks for your replies. I'm going to have to be totally and utterly ignorant here and admit that I have no idea what a CPN is! I really hope for my sake that this is just because I'm not in any social services loop and Dad isn't very keen on visiting doctors these days, I think he's worried that they will 'have him put away'. How do I get a Mental Health Consultant on board? Does this have to be done through his doctor? I was thinking about trying to have a talk to the doctor on my own very soon anyway to see if he can persuade him to accept more help, I hate to see Dad so distressed and confused about everything now. I think my biggest question is can dementia take a turn for the worse very suddenly? He did spend a 10 day spell in hospital at the beginning of November for heart problems and he was definitely worse while there but was so happy to be home afterwards he's seemed absolutely fine since until his turn before Christmas.

Dad did take the full course of antibiotics eventually, probably over nearer 2 weeks rather than the 7 days he was meant to take them over, I kept finding them stashed at the back of his pill drawer. Maybe he still has the infection so the quicker I talk to the doc the better. I'm just hoping it is and I get Dad back, I think it will be the end of him if he has to go into a care home, I'm trying so hard to keep him in his own home and familiar surroundings but I have an awful feeling that his refusal to accept care workers is going to end in that because I just can't give the level of care he's going to need.

AJay

 

[Grannie G]

Dear Ajay.

A CPN is a Community Psychiatric Nurse.

I`m sorry, I thought your father had been through all the channels.

Has his GP not referred him to a psychiatric consultant for his dementia? Has his GP not asked a Community Psychiatric Nurse to home visit? Or is it the fact that like my husband, he refuses to have anyone in the house.

Have you tried to contact your father`s GP? If not, can I suggest you make an appointment with him, by yourself, to discuss your father`s condition and what can be done to help him. Write down all your concerns so that you don`t miss anything out.

 

[AJay]

Thanks Sylvia and worry not, it's me that should be embarrassed, I'm so ignorant of what should be done!

No, Dad's GP hasn't referred him to anyone, but Dad is very good at hiding his dementia with quite wicked humour so his GP probably doesn't think he's as bad as he is. The Social Worker at the hospital was very concerned but as soon as Dad refused all help said that there's nothing that could be done.

Dad does refuse to let anyone he suspects of being a care worker/warden or similar into his house, we tried to get him to accept a worker in to sort him his lunches out after he came out of hospital but he ejected them after 2 days. He happily lets everybody else in without question though, maybe they should wear a meter readers uniform!

I'll make an appointment with his doc this week and have a good talk to him.

Thanks again.

AJay

 

[BeckyJan]

Hello Ajay:
I think we assumed your father had a Consultant and CPN because, certainly in this area, one can only be given 'dementia' drugs through a Mental Health Consultant. With us our GP referred my husband and he then had assessments by the mental health team before being prescribed Aricept. I do not think GPs can prescribe it without referral.

I agree with Sylvia - you do need to see the GP armed with notes and I do think he CAN involve the Mental Health team in some disguise so that your father can co-operate.

Do not worry too much. My husband was very unco-operative at the start but as time went on I was able to persuade him to take advantage of the help.

Good luck with all this. Jan

 

[gigi]

it's me that should be embarrassed, I'm so ignorant of what should be done

Dear Ajay, I think we've all been there-the problem with this disease is that everyone who suffers from it will be different!
the professionals are the people who can and should be helping you to help your father.
See his GP as soon as you can and as others have stated go armed with notes and questions and be prepared to stand your ground until you get some help for your father.

Wishing you all the best

Love Gigi xx

 

[Grannie G]

Dear Ajay.

You have nothing to be embarrassed about. I presumed too much and we are blinded by jargon and terminology.

My husband cancelled his first appointment with the consultant. It was my turn to be embarrassed then, as I felt he was wasting people`s time and being a niusance. They were fine about it, obviously used to unpredictable behaviour.

So even if your father refuses to see anyone, take the first step and get a referral for him.

When my husband became so distressed about himself and actually asked to see a doctor, I was then able to phone the consultant`s secretary and make an appointment there and then without having to go back to the GP.

Please post an update when you`ve seen your father`s GP.