Learning to live with Alzheimer's disease
Overcoming challenges 31 July 2014 is a date I will never forget – that was the date I was diagnosed with younger onset Alzheimer’s disease at the age of 58.
Receiving a diagnosis of dementia can be devastating, but I was also relieved that it finally put an end to all the uncertainties I had been feeling over the previous 18 months. I had been experiencing some memory problems for a while. I was forgetting words and colleagues’ names, but when I left my office one day and I found I didn’t know where I was, or whom the voices around me belonged to, I knew it was more than normal memory problems associated with ageing.
Following my diagnosis, I was prescribed medication but in York, where I live, information and support was hard to come by. In that situation, it’s very easy to feel abandoned, but I found a wealth of support from the Alzheimer’s Society and the advice they provide online became a real lifeline for me.
There are many ways my life has changed in the past year, but I always try to remain positive and make the most of what I can do. I have continued to do the things I love – walking, reading, and writing. I have started a blog (www.whichmeamItoday.wordpress.com) that now serves as my ‘digital memory’, helping me to record my thoughts and experiences. Over the past year and with the help of Alzheimer’s Society, I have taken part in social and medical research; spoken at universities, conferences, and the House of Commons in order to raise awareness of dementia; and even had coffee with Hollywood actress Julianne Moore at the premier of ‘Still Alice’. Despite retiring from my job in the NHS, which I loved, I have been anything but bored!
I continue to live happily on my own in Yorkshire, with the support of my two daughters who live close by. My independence is really important to me, and I’ve made changes to my day-to-day routine that allows me to continue living life to the full. I now have a clock that tells me what day it is, a weekly calendar that reminds me what I’m doing each day, and ear plugs to dull harsh and distracting outside noises. These are all simple strategies, but they make a huge difference to my everyday life.
To anyone who has just received a diagnosis of dementia, my one piece of advice would simply be - don’t panic. Try not to focus on what you might not be able to do, and instead think about what you can change. There are so many ways you can adapt and continue to do all the things you enjoy in order to live well with dementia.
Wendy is an Alzheimer’s Society ambassador, and a member of ‘Join Dementia Research’, a national database that supports people to take part in dementia research and studies.
A message from Jeremy Hughes
For many of us, Christmas is a wonderful time of year when we catch up with friends and family members we might not regularly spend time with. It’s often much easier to notice changes in the behaviour of others when you haven’t seen them for a while - this can be worrying.
That is why Alzheimer’s Society receives so many calls to our helpline in January from people concerned about relatives they’ve seen over the holidays. People tell us they’ve noticed their family members are struggling to remember things, seem confused or find it difficult to follow conversations and they don’t know what to do. We would encourage anyone to get in touch with us whether they are worried about dementia or just want to find out more. The earlier people seek our help, the sooner we can provide information, advice and support.