The question I have been tasked with answering is: Why are you making a website about your life with dementia? It's an exciting challenge, and my answer is that there is not just one reason, but several different ones. Here are some of them: Living with Alzheimer's dementia has been challenging, but also an eye-opener for me. The diagnosis has forced me to see life from a whole new angle and has allowed me to appreciate small and big moments in my life. Although I have experienced loss and stigma, I have also found strength in new friendships and communities. I have had the honour of speaking at major conferences and collaborating with politicians, health professionals and many, many more. In an attempt to improve the lives of those of us who have dementia, I will share my experiences through my website and give a voice to those who cannot or do not dare to speak out about their life with dementia. I would also like to pass on my own thoughts and those of others who live with early-onset dementia, about how Denmark and other countries can become better places for us to live in.
Dementia-friendly initiatives are often made without input from people living with dementia. We should be involved in initiatives that affect our lives, because we are the ones who are affected by the decisions that are made. Including those of us living with dementia in advocacy work is crucial, too, if we want real change, because to make the right decisions we need the voices of those with lived experience. Being part of a community, with like-minded people, gives life with a terminal diagnosis joy and value, and we know that it is life-prolonging. On the other hand, it is equally destructive and leads to increased vulnerability when the ties are cut and that community is suddenly closed off to us, without taking into account the consequences it has for our lives.
I share several thoughts on a good life with early-onset, on my website, in an attempt to spread knowledge about how YOU can help us. Of course, I must also tell visitors to the website about my life with dementia, so you get an insight into a life that is very different from what most people associate with living with dementia. For example, I was drinking coffee with Queen Silvia (pictured), when I gave a speech in Sweden! I also share my expereience of going by myself to a large concert for the first time in my life, where Norah Jones played her music. I did that because I want to challenge myself, and because I use her music to comfort me when I feel lonely and scared of what the future might bring.
I still create art, still exhibit my art, and I still teach art to all 60 of my students, four times a year at the Folk High School where I used to be a teacher. Ever since I entered the world of dementia, the wonderful people I have met have been a watershed in my experience of a valuable life. Once such person is my dear friend Jens and you can watch a video of a conversation I had with him at Aarhus Cathedral, on my website. Despite the fact that I try to live by the motto: “Embrace this damn life, grab it, catch it before it's over”, it's difficult some days. The fear of the future has become a condition of my life, which means that I try as much as possible to fill my calendar with meaningful appointments, so I don't have too much time at home, alone, to think, feel and fear. My life with a deadly disease is all of this and much more, and I want to tell everyone in the world about it, so I try to do that in this way, as well as in many other places. And at the same time, I save memories, both for my children and myself.
Visit https://mindemens.dk/ and share it wherever you can think of. You are all welcome, and it is always open. You have to bring your own coffee, but I try to provide a topic of conversation. And please come and visit often, because I'm not done yet. I have a lot more on my mind!
