We spoke to Lori about her experience of caring for her husband John who was diagnosed with PCA in 2014.
What were the early PCA signs that you noticed in John?
For a good twelve to eighteen months before his diagnosis, I noticed subtle changes in John.
As these changes coincided with John’s retirement and also stopping smoking, we put some of it down to that.
John was always a brilliant driver and suddenly started to hit the curb and wasn’t able to park properly. He also seemed unable to discern lights and signs at night.
I started to notice other changes in John which were out of character.
John is meticulous in everything he does but when I came home and he said he’d been filing – I discovered his version of filing was taking a variety of important papers and putting them in the bin.
The biggest change was that John started to put everything in one drawer. He said that it was easier to find things if everything was in the same place. That's when I knew something was up.
What challenges have you and John faced together?
The first challenge was getting a diagnosis as John could still articulate himself well and had no awareness that anything untoward was going on.
When he was diagnosed we were shocked. I didn't even know the difference between Alzheimer’s and dementia, let alone know what PCA was.
Our biggest challenge was to not be defeated when we learned that the future we had planned had disappeared. We had to find a way to accept advice and support and take small steps to creating a new journey for ourselves.
How have you coped with these challenges?
Alzheimer’s Society was key in providing us with information and steering us to who to speak to. I immediately signed up with the local council's carers agency so that we could have their support and advice which was invaluable.
Through them, we learned about applying for Attendance Allowance, Power of Attorneys, and planning for the future. They even ran courses on how to keep our flat safe and dementia-friendly.
