Capacity and consent advice pkease

[janey106]

Try to make long story short. Mum has Alzheimer's, still knows family and dressing self etc but has no memory to speak of e.g, no knowledge of conversations, messages, visits, taking tablets, eating things etc within minutes. Spending many hours of each day now very confused saying her husband is her Dad and taking some persuading otherwise. 4 weeks ago went to GP for follow up visit (posted this stuff earlier so apologies for duplication), insisted on going in alone ( Sister and I didn't know about it) and GP gave her mass of tablets. Cutting lots out, Sister and I, with Dads full consent, agreement and signature, sent long complaint letter (lots of issues) and copy of POA. They say she has to give consent as she has full capacity!

Tonight she doesn't even know who her GP is, no memory of ever seeing him, no memory of her Consultant etc Explained why they have written and said she doesn't see him anyway and no memory ...... Surely this is not 'having capacity'. They want to show her our letter which will just upset her all over again to read her parents are dead, Dad been keeping diary of concerns, she isn't allowed to drive, she has Alzheimer's, hallucinations etc. how in heaven's name can they suggest she has capacity?

Should we get her OT and Consultant to intervene?

Thanks for any advice
Frustrated beyond belief

 

[Pete R]

Try to make long story short. Mum has Alzheimer's, still knows family and dressing self etc but has no memory to speak of e.g, no knowledge of conversations, messages, visits, taking tablets, eating things etc within minutes. Spending many hours of each day now very confused saying her husband is her Dad and taking some persuading otherwise. 4 weeks ago went to GP for follow up visit (posted this stuff earlier so apologies for duplication), insisted on going in alone ( Sister and I didn't know about it) and GP gave her mass of tablets. Cutting lots out, Sister and I, with Dads full consent, agreement and signature, sent long complaint letter (lots of issues) and copy of POA. They say she has to give consent as she has full capacity!

Tonight she doesn't even know who her GP is, no memory of ever seeing him, no memory of her Consultant etc Explained why they have written and said she doesn't see him anyway and no memory ...... Surely this is not 'having capacity'. They want to show her our letter which will just upset her all over again to read her parents are dead, Dad been keeping diary of concerns, she isn't allowed to drive, she has Alzheimer's, hallucinations etc. how in heaven's name can they suggest she has capacity?

Should we get her OT and Consultant to intervene?

Thanks for any advice
Frustrated beyond belief

Does your Mum have a Social Worker? If so get in touch and they can carry out a Mental Capacity Assessment.

 

[Bessieb]

It's a problem I have had too. Whilst both my parents have AD they can come across as remarkably lucid at times. They have fooled GP's, Estate Agents and lots of others who only realise the extent of their loss of capacity on a second or subsequent visit when neither of my parents have any recollection of them or their first visit (even if had only been the previous day). It's only if the GP is particularly well trained in dementia that they pick it up straight away.

I would try and form a relationship with your Mum's GP. I went to see the GP and explained my concerns and then arranged regular catch up on the phone (once every couple of months) with her and it helped enormously. She was hugely supportive. The GP could get a better picture of what was going on and I could input into any decisions. As long as the GP knows you have POA or agreement from your Mum to disclose information the GP is able to discuss things with you.

You can also request a capacity assessment through the GP or SW. It usually involves a standard memory test but then a general discussion with them about all sorts of issues. The memory test alone doesn't always highlight a loss of capacity (my Mum for example can score quite well on a good day)..but the accompanying conversation about issues such as current affairs, medical concerns etc generally highlights where someone is re capacity (my Mum couldn't tell the GP where she lived for example)

Good luck with it.

 

[EvaMary]

GP Visits

Hi my husband has just been told his has Vascular dementia which started 2yrs ago. The last 6 months his memory has got worse those he can remember family and friends he has problem remember what people say. I have there for started going with him to any GP visit and specially the Diabetes nurse has he cannot remember what he told. So I think it a good idea if you did go to the doctors appointments.

 

[janey106]

Thank you for replies everyone.

I hear what you say about being with her and building a relationship with GP we have been trying to do that for last 3 years and he has refused to listen to our 'evidence' of concerns, refused to look at the diaries they told us to keep, accused us of being part of the problem because we give her too much attention when she is anxious, said it was 'learned behaviour' to get her own way and in January told us that he knew our Mum better than we did! You can see why we kind of gave up telling him anything and have relied on the Consultant and Mental Health OT to manage all this (and they have been wonderful). We have now established he has ignored all the Consultant Geriatric Psychiatrist's letters where it is clearly stated Mum has alzheimers and vascular dementia so giving her medication in that quantity was really irresponsible.

We have been able to move it on now, Dad taking responsibility for all consent issues, Mental Health Team sending a letter spelling it out for GP and with Dad's permission spoken to another local Surgery (with excellent reputation for supporting people with dementia related problems) who are happy for them to transfer. Even managed to explain some of it to Mum who, when told what he had done said she didn't want a stupid man like that looking after her anyway, even if she didn't think she had ever seen him before!

 

[janey106]

Hi my husband has just been told his has Vascular dementia which started 2yrs ago. The last 6 months his memory has got worse those he can remember family and friends he has problem remember what people say. I have there for started going with him to any GP visit and specially the Diabetes nurse has he cannot remember what he told. So I think it a good idea if you did go to the doctors appointments.

Hi Eva,

Just noticed this was your first posting ... welcome to the Forum ... hope you will find it really supportive, whether it is advice, information, options or just a place to off-load that you need.

We do generally go to all appointments with Mum and Dad now but it sometimes is difficult as my Sister and I both have full-time jobs and they don't always tell us when they are going but as you will see from my separate posting, hoping that a change to a new surgery is going to help with this.

Thank you for replying and again, Welcome!

 

[janey106]

It's a problem I have had too. Whilst both my parents have AD they can come across as remarkably lucid at times. They have fooled GP's, Estate Agents and lots of others who only realise the extent of their loss of capacity on a second or subsequent visit when neither of my parents have any recollection of them or their first visit (even if had only been the previous day). It's only if the GP is particularly well trained in dementia that they pick it up straight away.

I would try and form a relationship with your Mum's GP. I went to see the GP and explained my concerns and then arranged regular catch up on the phone (once every couple of months) with her and it helped enormously. She was hugely supportive. The GP could get a better picture of what was going on and I could input into any decisions. As long as the GP knows you have POA or agreement from your Mum to disclose information the GP is able to discuss things with you.

You can also request a capacity assessment through the GP or SW. It usually involves a standard memory test but then a general discussion with them about all sorts of issues. The memory test alone doesn't always highlight a loss of capacity (my Mum for example can score quite well on a good day)..but the accompanying conversation about issues such as current affairs, medical concerns etc generally highlights where someone is re capacity (my Mum couldn't tell the GP where she lived for example)

Good luck with it.

Thanks BessieB, I did have a look at how they assess capacity and can see how this can be very different from memory etc (Mental Capacity Act info was good) and you are right, memory can be lousy but some days there are periods of real lucidity and capacity. It was heartbreaking at the weekend when Mum was able to recognise for about half-an-hour how she was struggling to remember things and she described it as like an 'out of body' experience, she could see hear all the conversations and look at everyone and 'knew' she should understand it all but couldn't join anything up and how terrifying it was and she was worried she wouldn't know us one day .... and ten minutes later that lucidity had gone again. In some ways I hate her realising as it just upsets her so much.

Thanks again