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Wayne has had dementia for almost two decades, during which he has become a trainer in dementia awareness, a walk leader for Stepping Out with Carers, an ambassador for multiple organisations, a blogger for Dementia Diaries, a lecturer at a variety of universities, and a vital carer for his friend Lorraine, who also has dementia.
I have so many apps I use daily but this top 5 defines my state of life and happiness always.
1) Contacts - contains all the contact, personal & address info on all my people with 5 vital ones flagged as "favourite" for easy connection.
2) Calendar - all details, locations, notes and attached info required for each day with timed reminders set to mark lead up.
3) Bus times - UK wide connection to all buses, routes, times, bus stops and zoom-in map showing current location.
4) Google Maps - used to check and organise route and method for every event every day.
5) Google Photos - date, time and GPS locates every photo and video taken so it can be retrieved as a memory or hint.
I was a lecturer in IT so my abilities and confidence with technology were there before dementia and due to current daily determined efforts to stay 'in the know’ and constantly exploring new options, my skills seem to stay top notch although the increasing physical issues: sight, sound, touch, dexterity, shaking, do act as a hindrance.
I am really glad to say that because of detailed and careful planning built around tech knowledge I’m also able to help my friend Lorraine who also has Alzheimers. Due to my my capabilities and her trust in me, any ‘trouble’ we might have on our travels always seems to get avoided or minimised to the point that it becomes just an interesting 'bump' in the day instead of a trauma!
Once, back in 2017, Lorraine was a little uncomfortable not knowing where she was after the travel company Dementia Adventure put her up overnight at a Travelodge in Essex prior to attending a meeting there the next day. We spoke on the phone and I talked her through using the free Google GPS tracker so she could automatically send me the co-ordinates. From that I could see exactly where she was and even what her surroundings looked like from Aerial and 3-D Street View. Lorraine looked out of the windows and confirmed all I said. It gave her the confidence and security to enjoy the rest of the night and the trip.
What Lorraine and I have in common is a savage determination to stay independent as long as possible. The phone and apps and the fast changing technology always keeps me alert, challenged and entertained as I seek to stay safe, secure and confident, so that I appear a 'normal' part of our amazing world. It helped me do the planning and research to lead a SteppIng Out Walk in Rochester. It’s so gratifying that people still mention how much they enjoyed that walk. Even though I can’t remember it I can still feel the glow.
I wholeheartedly believe and live with the principle that we only have one life, one crack at it, so make the most of the chances and choices you have. You only live once so make moments even if you cannot make 'memories' haha!
Yes, the whole of life is a joyous adventure to be freely enjoyed. Maybe I treasure it even more by surviving a 2004 major heart attack and then 2 decades of increasing dementia challenges. Each moment deserves to be savoured as it only ever exists once and is gone in a flash. There are dark times, but the phone is 'usually' a safe and always available connection with the world outside - even when I have days when 'going outside' feels too risky and traumatic to be undertaken. Like the COVID times when I was 'locked away' in the care home environment for 13 weeks behind doors, technology and online video chats around the world kept me functioning and sane.
My phone can’t do everything - make me tea, keep me warm when out at cold bus stations, beam me home instantly, and help me understand people's 'double and hidden' meanings. But it’s vital to my life with dementia. I just wish it could suggest things to do and places to go based upon its years of knowledge about me but AI development (often including sessions with me!!!) is working on this one.