What it’s like to have early onset dementia
Linda Willis hadn’t reached her 65th birthday when she was diagnosed with early onset dementia. Here she explains what it’s like to have the condition and how she’s used it to become a more confident, outgoing person
My name is Linda and it has been nearly seven years since I was diagnosed with vascular dementia.
I had a stroke at the age of 50 and have since had a number of transient ischaemic attacks, or mini strokes.
I don’t know how many of them I’ve had as most of them are silent and just showed up on my brain scan.
It took me nearly two years to get a diagnosis. I was fobbed of by the doctor – “It’s normal at my age”, “you have depression”, “you are going through the menopause”.
I managed to see a different doctor who thought I did have a problem with my memory and referred me to a consultant.
I had a cat scan and was told I had Pick’s disease but he wanted a second opinion.
Another six months went by and I had a MRI scan. I remember them telling me: “Luckily, you haven’t got Pick’s disease, you have vascular dementia”
I asked about the shakes which I was experiencing and was told it was Parkinson’s.
I knew I hadn’t got Pick’s disease as I looked it up online and most of the symptoms didn’t relate to me so I knew the diagnosis was incorrect.
My shakes are getting worse and I now have to wait 36 weeks to see a neurologist.
Once I was diagnosed I went into a deep depression. I found out later on that this was normal.
I wouldn’t go out as I didn’t want to talk to anybody in case they thought I was going mad.
I thought that I may not be able to answer their questions as I don’t always understand what people are saying to me, especially if they have a strong accent or speak very quickly as all the words roll into one.
All I wanted to do was to sit at home and vegetate on the settee.
I had a visit from the Alzheimer’s Society who advised us about obtaining power of attorney.
They offered me the option to go to a memory café, a Singing for Fun group (I said I cannot sing) and art classes (I said I cannot draw a straight line let alone anything else).
I thought I would give the memory café a go and see what it was like and I have never looked back.
Meeting like-minded people at the group helped me with my confidence, they talked me into going to the Singing for Fun Group and art – and to have a befriender.
I now sing in the Younger People with Dementia Choir and I have performed at St David’s Hall in Cardiff and for the Welsh Proms.
We now sing all over the place. Sometimes I give a talk on what it is like to live with dementia which always goes down well.
We have art once a week at Llantarnam Grange in Cwmbran and some of our artwork has toured several hospitals.
I am very proud of that as I cannot draw a straight line due to my shakes but I do like to Zentangle with pen and ink.
I have a befriender, now known as a support worker, who I go out with once a week for two hours.
We go all over the place, shopping, visiting museums, going to the pictures, walk round the wetlands, take bus rides and we always end with a coffee and something to eat (this is my lifeline).
Now my life has changed and I feel I am living very well with dementia.
I talk at conferences, workshops, with student nurses and the general public.
I also sit on several boards so that I can help to improve the lives of people living with dementia and also for their carers.
There is still a lot to be done and I will fight for the cause for as long as I am able to.
I also attend a craft class once a week to make cards and sell them to make money for my non-profit making charity called “ETA MINED” (this is an anagram of dementia).
I started up a younger people and carers’ charity to help with day trips, transport and equipment.
I am trying to raise £5,000 to become a charitable organisation.
I also attend a crochet and natter class in a wool shop in Newport.
I do my knitting but I find I am nattering more than working but it is fun and we all have a laugh each week and go home feeling happy.
I sit in interviews for Alzheimer’s Society, and am volunteering to become a Peer Support Person where I will be going out to newlydiagnosed people to give them support and encouragement to attend different groups.
I have also given support to another woman with dementia who has now become a true friend.
I have learned I can live a positive life while living with dementia.
I can talk about my illness and I have become a good listener. I have put plans in place for my future.
I live every day as it comes and if there is something I cannot do I just throw it over my shoulder and out of the window.
I now concentrate on the things I can do and not the things I am unable to do.
I have become a much more confident person, proactive and I like to support others. I now have a very active and full live.
There is still a lot to be done and I will fight for the cause for as long as I am able to