It is 4 years ago on Tuesday that I was diagnosed with early onset Alzheimer’s Disease…
Not a big thing now, as I’m used to it – but it came like a bolt of lightning from the gods when I was given the diagnosis at the Queen’s Medical Centre in Nottingham.
As a carer for my Mam and stepdad who are both now in the latter stages of the illness, the enormity of realising my fate, coupled with the fact that I was still helping to care for them, left me in a very dark place indeed.
However, after the help from the social services and teo lovely social workers – coupled with the help I now receive from my support worker for 6 hours per week… and my Mam and stepdad both now safely in full-time care at their nursing home, I am in as good a place as anyone can be with our condition… and I also know that when the time comes that I myself am unable to make decisions for myself, my support worker and framework structure will make sure that steps are taken to protect my interests and well-being.
I am now officially entering ‘moderate stage dementia’ whatever that is supposed to mean – I can still do things for myself, to an extent physically because of the secondary condition caused by my dementia, Parkinson’s Disease… I can still communicate, type (although my writing has gone downhill fast, both in legibility and spelling – on computers you can use a spellchecker), access the internet and use my computers and devices and also go out with my support worker – but the day-to-day things that people take so often for granted have all but gone for me.
Remembering peoples’ names, stuttering when talking, trying to say the right words, but getting them twisted as I’m trying to communicate them – remembering to take my medications without alarms going off on all my computers, devices and phones – are all commonplace – you get used to it – and the stark fact of the matter is that you have too – because there is nothing you or the medical world can currently do to stop the onslaught of gradually losing everything that makes you… you!
I’m in a good place though, both physically (to an extent) and mentally (to an extreme) – and I know that my future is secure with the help that I have – so I can go into ‘oblivion’ when the time comes and not really worry or care about it anymore!