Dementia Support Line
Adjusting to my diagnosis of early-onset dementia - Alison's story
Since being diagnosed with early onset Alzheimer's, Alison Bolus has worked with Alzheimer's Society on our rebrand and features on many of our posters. Find out how she's adjusted to living with dementia, and read her poem about her experience.
A shocking diagnosis
Early-onset Alzheimer’s isn’t the end of everything.
Don’t get me wrong. Initially, my diagnosis seemed horrendous, unbelievable and it took a lot of getting used to. My short-term memory lets me down and my organizational skills are poor. Sometimes I can’t believe how much I have changed from my old self...but in other ways I have changed very little.
In my case, I developed epilepsy first, then was diagnosed with Alzheimer’s by my specialist after many tests and a stay at St George’s.
It felt like the end of my life. I was given the diagnosis of Alzheimer’s on my own, which I thought was badly managed.
That was a very lonely time. My specialist noted later that I seemed to be “somewhat shocked at the news”. Well, wouldn’t anyone? This was not something I had even thought of.
Learning to live with early onset Alzheimer's
But after the dust had settled, and all the tests were done, I realised I was still me. Still loved my family and friends. I still enjoy my hobbies of gardening, singing in a choir, going to the book group I had started in happier times. I still enjoy going out for meals with my friends, attending classes in Pilates, Zumba and keeping fit.
Friends and family are happy to help in any way. Especially driving me around, since my driving licence was snatched away, leaving me to get me around with a bus pass instead. Good. But not the same as a car.
I lose the plot a lot, figuratively and relatively, but I can still do most of what I used to do before I became ill, albeit slower and guided by a rather random logic! My short-term memory is appalling, which is very irritating to everyone. My husband refers to it as my “gnat brain”… We take our humour as we find it!
Writing into the future
I started writing about my condition as away of dealing with it, and it has become very comforting. I was an editor before I was ill, and although my brain is rather wobbly now, just writing my thoughts down is quite cathartic. Words are my tools. You might like to use them yourself.
Looking ahead, I know that my horizon is not one I had thought of, even considered, but it is my horizon now. It is up to me to make it as good a one for all of us as possible.
I understand that my life will be different to the dreams I had nurtured, and poor Steve will have to bear my decline, but the sea keeps flowing and I keep dreaming and hoping.
For a cure? Maybe. I don’t look too far ahead. One day at a time is just fine with me…which is just as well with my memory…!
Alison's poem
‘Am I someone I know, or just a copy of what I used to be?’
Am I a mirror of my old self, now pared down to the bone?
Am I still viable as a person, or just a memory of what I once was?
Perhaps the memories I have are only mirages of the mind…
More and more, my brain takes me back to childhood, muddling the brain.
Semi-remembered times and places dance before my brain,
Is it now common for one to time travel?
But…
Oh brave new world, please take me back to “Go” so I can have another chance at the muddle that is my life...
There is more to me than the diagnosis of Alzheimer’s.
There is me.
Would you like to share your story?
We're always looking for real stories to share on our blog. If you don't want to write a post yourself, you can also share your story with us, and get involved in our press and campaigning work. Find out more about both options.
Alison Bolus
saysPlease get in touch with the Alzheimer's Society. I am sure they would be very interested to hear about this approach.
Martin Corrick
saysDear Alison, I am only just realising, after six months, that I can still do things despite my Alz diagnosis. Medication has now helped me a lot, and I would like to help other patients if I can.
Because I was a university lecturer, I feel I could help with things like the courses that patients and carers are often sent on. My partner Annie and I both feel that some of these courses need the stimulus of patients who have found positive ways of living with dementia - this was emphatically NOT the case with the NHS course that Annie (a former Head Teacher) and I went on!
We would like to know about any ways in which we could contribute.
Best regards,
Martin Corrick9
dot schwarz
saysAlison your story was touching and inspiring. And a greart help to me . MY husband was diagnosed with Alzheimers last NOvemeber. He is 86 I am 79.
Good luck with all your endeavours
Dot Schwarz
Dp have a look at our website if you have time
Moira porter
saysWhat a fantastic way you are accepting early onset dementia.
My mum was quite elderly when she started with dementia, at the age of 85 It was my, idea that she should live as normal a life as she could,everything revolved round helping with cooking dusting gardening and the things she enjoyed in her full and active life
I lived in her world not contradicting anything only the past became my past as she could remember things I didn't even know about. When she asked about family that had died many years before, I just made stories up about them and and in her mind they were still here,but it gave her piece of mind which very often was forgotten in minutes
Right to the end mum had a fantastic smile and laugh,it was a pleasure to know I made living with dementia for my mum a little easier, she lived to the good old age of 92
Helping mum had given me such a passion for passing on what I had learned from her, I did a dementia Champions course but due to family commitments haven't been able to make the most of it with group session it was a great experience, and I am able to pass on to individual people what I have learned
Alison being able to lead your life with a loving family and friends round you. And being able to write about it will help and inspire others, understand life can still can go on
Ceri Holmes
saysAlison what brave young woman you are and highlighting the issue of early onset. My mum was diagnosed with Alzheimer's at 52 and her mum had what was then senile dementia at around the same age. I think that early onset affects younger sufferers in a very individual way. My mum lost her vocabulary very quickly and lost her confidence which had a huge impact on the bright, lovely person she was. It sounds like you have great family support which will make all the difference and you are not letting it stop you living your life. Your approach to managing it is refreshing and inspiring.
Pamela Linskey
saysThank you Alison for telling me about your story. My husband has Alzheimer's and your story is very similar to my husband's. He also has memory loss and cannot remember our children when they were small or the holidays we had together. But like you I also hope there is a cure sooner rather than later. Enjoy life as much as you can and accept whatever each day brings. Good luck!
Alison Bolus
saysHi Pamela
Thanks for your kind words. I try to be positive but don't always succeed! But there is another day to look forward to. And once I start on a new poem, I'm as happy as Larry!
Alison Bolus
saysBest wishes