So we've finally got the appointment for my uncle with a geriatric specialist but we had to go private. So, if nothing, we should have an official diagnosis soon. It's clear from his symptoms (and quiet advice whispered from my doctor cousin) that he is in the mid stages at least, if not the start of the end stage.
The issue is that my aunt has....ideas. A major problem to date has been him controlling what she can say. So, to combat this, we've written up a detailed breakdown of his symptoms and we plan to give this to the consultant.
However, my aunt is still in denial about my uncle and believes that if he gets the right medication, he will improve and she'll have her husband back again. Thus, she actually has left out huge chunks of his symptoms from the description we wrote because she " doesn't want him written off that there's no drugs to help him". On top of this, she asked my uncle's sister to go to the appointment with him instead of me because his sister has a reassuring and stablising effect on him, which is fine, but it means that I, the person who is actually doing the full time care, won't find out anything save what she chooses to share with me. I understand their wish for privacy, but this is my life now, and it effects how I can live for the next five or ten years, it also effects how I can help my uncle manage the progression of the disease.
We've come to the compromise that she will give the consultant leave to speak with me by phone or email. I know this is bad but I actually intend on emailing the consultant before the appointment and filling her in on the missing details and describing the care situation as honestly and in as much detail as possible, without my aunt's knowledge.
I'm going to send a couple of questions to the consultant as well. At the moment they are;
(1) what stage is he in (2) what's his life expectancy (3) what will his care look like in six months to a year and a half from now (4) do we need to start making adjustments to the house to help him (5) what therapies can I use at home to help him in his symptoms.
I wondered if you guys had any questions you think I should add? Thanks.
The issue is that my aunt has....ideas. A major problem to date has been him controlling what she can say. So, to combat this, we've written up a detailed breakdown of his symptoms and we plan to give this to the consultant.
However, my aunt is still in denial about my uncle and believes that if he gets the right medication, he will improve and she'll have her husband back again. Thus, she actually has left out huge chunks of his symptoms from the description we wrote because she " doesn't want him written off that there's no drugs to help him". On top of this, she asked my uncle's sister to go to the appointment with him instead of me because his sister has a reassuring and stablising effect on him, which is fine, but it means that I, the person who is actually doing the full time care, won't find out anything save what she chooses to share with me. I understand their wish for privacy, but this is my life now, and it effects how I can live for the next five or ten years, it also effects how I can help my uncle manage the progression of the disease.
We've come to the compromise that she will give the consultant leave to speak with me by phone or email. I know this is bad but I actually intend on emailing the consultant before the appointment and filling her in on the missing details and describing the care situation as honestly and in as much detail as possible, without my aunt's knowledge.
I'm going to send a couple of questions to the consultant as well. At the moment they are;
(1) what stage is he in (2) what's his life expectancy (3) what will his care look like in six months to a year and a half from now (4) do we need to start making adjustments to the house to help him (5) what therapies can I use at home to help him in his symptoms.
I wondered if you guys had any questions you think I should add? Thanks.