Dementia, Me and How to Boil an Egg in Four Hours
In an emotional and heartfelt blog ForHousing tenant Drew Garty, who lives at the Amblecote Gardens extra care scheme, talks about his life living with dementia at just 58.
One minute you think Dementia is just a problem for the elderly, and the next you find yourself standing in front of the microwave unable to remember how to turn it on.
It’s Dementia Action week this week and I’d like to tell you my story of how it has changed my life. And how it hasn’t changed who I am.
I’m Drew, I’m 58 years old, a wheelchair user who was diagnosed with cognitive impairment 18 months ago. I live in ForHousing’s Amblecote Gardens extra care scheme in Salford.
But really I’m Drew, an outgoing, adventurous kilt-wearing Scotsman with an irreverent sense of humour and blessed with a large family, a huge group of friends and Simon, my boyfriend of six years.
The difference in the descriptions is important – one is what I am, the other is who I am.
All too often I am described (and judged) by my disabilities. I’m more than that. I am friendly, outgoing and optimistic with a life of memories behind me and many more ahead of me.
How did I get here?
I had careers in international banking and medicine. I was well educated, lucky enough to travel half the world and enjoy living in many places.
My world changed in an instant on Easter Monday 2005 when I experienced my first stroke. I was 42 years old and life suddenly changed.
Luckily I recovered and I was able to return to work part time, although in a modified role. But 10 years later two more strokes meant I was forced to retire. The change was overnight and I spent the next two years getting to grips with a complete lifestyle change.
How would I fill my days? Where will I live? What do I do about money? I had to set about tackling these issues.
The financial aspect was the most pressing as I was facing the prospect of half my life without an income.
I had resources but they would not last forever, I had never been unemployed and I had to enter the realm of benefits and the Department for Work and Pensions. Having worked from the moment I left school, nothing prepared me for the onslaught of confusing paperwork and regulations.
It took two years and three full medical assessments before I finally got my correct entitlements.
I have a bright disposition and always look ahead with excitement. I have a keen interest in the arts, love to socialise and travel. Ticking off the list of things that I never quite got round to when I was working gave me purpose.
I took classes in British Sign Language, Spanish, did the tour of Scotland I’d kept delaying and made sure I saw much more of my family and friends. Where did I ever find the time for work?
How did that get there?!
I began to suspect something was wrong around four years ago. My keen mind began to fail me at odd random occasions. Simon began to refer to me as ‘Dory’ (the Disney fish with the very short term memory). Despite being aware of the memory failings – wondering where I’d put my keys or that loaf of bread or my underwear – I dismissed them with excuses of being tired or a bit stressed.
The turning point was standing in front of the microwave and being unable to work it. The sense of frustration and fear made me realise I needed to seek medical advice.
The diagnosis is still a devastating blow. My ‘good days’ are still quite frequent and it’s almost as though nothing is wrong. Appointment times are a challenge to get right, wait a week for the next episode of a series? I can’t recollect the previous episode and how did that toilet roll get in the fridge salad crisper?
My home is in one of ForHousing’s extra care developments which means that I have 24-hour support from social care and health teams. This helps and gives me the opportunity to live in my own home and maintain a level of independence.
I was given advice to get routines going for my medication and appointments, set up reminders and make lists. These worked very well and I even set up ‘Alexa’ to assist the daily task of keeping me functioning. Alexa worked well until the day I couldn’t remember her name! I tried many names including some very insulting ones before someone on the television said ‘Alexa’ and she asked what she could help with.
The biggest advantage I gained was being honest with myself, my family and friends. At an early stage I met with a dozen of my closest friends and explained my predicament and also asked for their help in keeping my faculties intact for as long as possible. The support I get from them, Simon and my family is one of the biggest single factors in coping with all my health issues.
Facing this problem alone is isolating, depressing and lonely, so gather those closest to you and don’t be apprehensive in asking for their help.
Don’t get me wrong, I am fiercely independent and stubbornly determined to do as much as I can for myself. The value of a conversation or a companion to accompany me to the cinema, theatre etc should not be underestimated.
The pandemic brought a huge challenge to all our lives. Isolation and loneliness contributed immensely to a decline in my cognitive abilities. No amount of Zoom, FaceTime or Whatsapp makes up for the physical contact with a loved one.
The frequency of my ‘bad days’ escalated quickly. The title of this article is borne out of a particularly bad day. I kept trying to boil eggs to make egg mayonnaise and just couldn’t complete such a simple task. No matter what I tried I just couldn’t remember what to do. Four hours and several attempts later I gave up.
My humour and optimism are the rocks that often keep me anchored. I have dealt with the uncomfortable practicalities of Powers of Attorney and the Will. One of my sisters badgers me constantly with questions about funeral arrangements, scattering of ashes. All very necessary of course.
How do I see my future? Far from bleak. As we exit restrictions my bucket list is coming back in to play – the Wimbledon centre court tickets are booked for 2022, the next music festival is being considered, an art class is grabbing my interest. There’s nothing I can’t do.
Of course , my future will have to be thought of seriously at times but my humour will see me through the daily difficulties and the inevitable future.
I take a wicked delight in driving my lovely sister potty with my funeral arrangements. I play a game of ‘ fantasy funerals’ with my bizarre last wishes.
No weeping and wailing, my coffin is to be made of whiteboard where everyone can leave a message or picture on it – the naughtier the better. I’m to be buried in my kilt with a picture of Chris Hemsworth. My coffin is to be carried in by him, Gerard Butler, Dev Patel, Idris Elba, Henry Cavill and George Clooney. They are then to double as backing dancers to my final music of ‘It’s raining men’.
The wake is to have a dress code of Disney Princess and is compulsory for all men attending!
To anyone who knows me, these requests will be no surprise. You’re all welcome!