help getting a different dx for dad

[ringle]

Hi, I would appreciate practical guidance on how to explore a new dx for my poorly dad, (looked after by my poorly mum).

My dad has a working dx of Alzheimers. This has opened some doors and given mum recognition as a carer. But neither I, he, his sister (nurse) or his BIL (ex GP) think it is correct.
Pretty much everything is wrong with him brainwise (movement, speech, visual perception all poor). But he has an intact personality, short-term memory, long-term memory and sense of humour! He can also create workarounds to his own difficulties (so when he cannot "see" where to go he figures out things to memorise so he knows where he is). He's at his best on the telephone.

So - his ex GP BIL has noticed that his symptoms appear to be more consistent with Parkinsons and has told them this. Dad is pleased because there is a chance medicine might help his movements and also he might face fewer incorrect assumptions about him.

Mum is fairly overwhelmed with her caring responsibilities and has her own "issues" so this news is hard for her. It is important for her that her role is recognised.

She is saying that

• their GP won't believe them
  
• the rest of the family are just "in denial" and won't accept dad has alzheimers because we don't realise how hard her life is (so it's kind of about her)
  
• she's too ill to go to GP
  
• no one else understands how hard it is to transport dad to see the dr
  
• we could pay to go direct to a consultant but that would cost money
  
• if the GP did refer we could then use their health insurnace to pay for a consultation with an appropriate neurologist privately.
  
• we can't think about it till she (mum) is feeling better.
  

You will be picking up that there is family dynamic going on here and that mum needs calm, recognition and practical support whereas dad (may) need a trial of Parkinsons medicine double-quick. Which could lead to improved movement and them being able to stay at home longer.

Questions:

• can one self-refer to a neurologist privately without GP? I have my uncle's emails....
  
• are GPs reluctant to refer if there is a working dementia dx?
  

Basically any ideas on getting this properly checked out without causing aggro/arguments/more stress....

thanks!

[ringle]

sorry last question:

am I right to assume that an NHS referral to neurology would take ages and result in quite a short appointment?
the concern with that is that mum talks over dad and will dominate any shorter appointment.

[ringle]

Bump

[astrantiamajor]

Does your Dad have a Local Authority Care worker assigned to him. If he is able to speak on the phone and make him self understood, I would encourage him to call the Elderly Care Dept. Preferably when your mum is out.

[Slightlyperturbedowlagain]

Could one of you arrange to accompany your dad to his GP? Maybe framing it as to help your mum because it's such hard work for her might help? Alternatively you may be able to make an appointment to discuss it on the phone with his GP- they won't be able to talk about any of his details due to confidentiality, but you would be able to outline your concerns so the GP can keep them in mind during a consultation. Or could your Dad ask his GP to discuss it with one of you?

[ringle]

Thank you both. You've picked up on the dynamic without criticising mum for which I'm grateful.

Ages ago they did sign a document giving their GPs permission to talk to me. It's a privilege I have only used once because mum is apt to feel there is a conspiracy against her.

I wonder if I should speak to the practice manager. Can they talk to me about dad (and can I send on my uncle's emails) without mum finding out this has happened? She will feel betrayed if she finds out.

To be clear, dad sometimes regrets not leaving her when they were younger but his priority now is to stay at home with her. He wants her to continue as his carer and she is prepared to do so.

[astrantiamajor]

All GPS seem different on whether they will listen to/talk to Relatives. My mother's GP would speak to her husband (who was in total denial) but not to me. Do you have PoA?

[ringle]

Thanks for replying. Sounds like you had the opposite problem to me.

It's worrying. If mum was onside it would be fairly easy I think. But her undiagnosed MH problems -and the background problems in their relationship -make everything harder.

No, I don't have PoA (except financial).

[astrantiamajor]

Might be worth getting both types for both of them. I understand they have reduced the price and made it easier to get. The hardest part, of course, is getting them to agree.

My Mother and Stepfather died last year. The Health PoA was really useful on so many occasions for them. My mother's husband did not want to live after she died. I have to say that the hospital were wonderful on his final admittance to hospital. No ICU at my request, once I explained things to his doctor.

[ringle]

I will take that advice. Thank you.