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Karin Gustafsson, member of the EWGPWD, writes about her diagnosis in 2014

Tuesday 25 April 2017

Gothenburg 2017-04-25

When I was diagnosed with mild Alzheimer’s in the fall of 2014, I was completely determined that there were other factors that affected me. I was convinced that my Alzheimer's diagnosis was incorrect. I felt that my changed behaviour was due to the fact that my mother, at the age of 94, had moved to a retirement home and that together with my two sisters, I was trying to deal with matters related to her home and belongings. It was an emotional time that affected me a lot, especially as my mother died of pneumonia quite soon after moving to the retirement home.

During this period of grief, I was in denial there could be something wrong with my intellect. I underwent tests and I was shocked when all the results indicated that I had mild Alzheimer’s disease. It was a diagnosis that I found very hard to accept. I had an image of myself as an intellectual, and for me it was unthinkable that I would have this disease, because I lived a healthy life - for 30 years I ran three times a week and practiced yoga regularly, deliberately chose ecological living and healthy foods. Since I had a lot of interest in health issues for many years, I ate organic. It was difficult for me to incorporate the disease into my self-image.

When I realised that my life would change in many ways, my husband and I gathered our three grown children and informed them of my diagnosis. The children were also shocked and we cried together.

At this time, I was a lecturer in Education at the University of Gothenburg, and also had a part-time job in the city of Gothenburg as a development director. At this point, I was employed by the City of Gothenburg at 50% and by the University of Gothenburg at 50%. Both my university work and my work with the City of Gothenburg were demanding positions: helping preschool teachers, participating in various research projects, and being responsible for development issues for preschool leaders and preschool teachers at an overall level in the municipality. My working week usually exceeded 40 hours and in my dissertation work, my commitment was yet higher.

I began to realise that my situation was untenable and that I was only able to change the current situation. I decided to stop both of my jobs during the summer of 2016.

EWGPWD

My husband Lars and I were invited to an Alzheimer's café and were asked by Alzheimer Sweden if we could consider joining the European Working Group of People with Dementia (EWGPWD). Both Lars and I thought it would be interesting to get involved and to help influence change in this context. For my part, it has been a positive experience to meet other people with a similar diagnosis and our joint meetings have given us both much strength.

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