My husband was diagnosed with Alzheimer's in mid 2014. He had been showing symptoms for 6 months and I (an ex GP myself) had been pressing his GP for definitive testing with no real luck. In fact, the GP prescribed several Alzheimer's medications long before he consented to specific testing. During those 6 months we lost so many opportunities and made some bad decisions. We panicked and sold a very expensive house on a terrible market and lost a lot of equity (probably $1M+). Next we bought an apartment that turns out to be unsuitable for the medium term and will have to move again.
When I first alerted my GP to my concerns, my husband had legal capacity. When we finally insisted on testing by a clinical neuropsychologist he had lost legal capacity. You can have no idea how important that distinction is.
The neuropsychologist understood and referred us to a Patient Advocate (also an RN) called Dorothy. She specialises in assisting with patients with new diagnoses for "cognitive" disorders. This service has been amazing. There are just too many things to explain but she has designed a pathway for us to refer to that assists us plan medical, legal, financial, social & residential matters and be ahead of the game a bit.
The illness is bad enough but the sense of frustration with my GP and the anxiety about the planning was affecting my health. We use the plan we drew up with Dorothy as a guideline and she spends a couple of hours a month reviewing and revising it with us. We are 3 weeks from moving to a wonderful 2 bedroom, completely independent apartment within a campus in Sydney that includes a dementia facility, a nursing home and respite care. We will be TOGETHER here until we die.
If you are worried about your health management, get an independent patient advocate. Do it early. It pays!
"Patient Advocacy for Alzheimer's worked so well!"
About: GPs in the Warringah Electoral District GPs in the Warringah Electoral District MANLY 2095
Posted by Amy from Mosman (as ),
Do you have a similar story to tell? Tell your story & make a difference ››