Dementia Positive

Eva Grill

I am Eva Grill, 43, and I live in South Germany.

My mother was diagnosed with Alzheimer's Disease about 2.5 years ago, shortly after my father had died of cancer. My mother still lives at home with some – but not permanent – assistance from us three siblings. I was very afraid of what the future would hold for us, and it took me a long time before I could face this situation.

What helped me a lot, was finding and joining two online support groups. One of them is the AlzheimerSupport yahoo group, a very supportive group consisting mostly of caregivers for their partners or parents living with dementia. The other one is DASNI (Dementia Advocacy and Support Network International. I joined them because I wanted to learn from people who actually live with dementia, so as to get a deeper understanding of how my mother may experience what happens with her. Encouraged by the brave and kind people I met online at DASNI, I hope to find ways to deepen the bond with my mother, to see, validate and support the person that she is. I'd like to enable her to do what she likes to do as long as she can.

Looking for further information and resources on communication and dementia, I recently discovered John's and Kate's site. What they do reminded me of my ideas in my other field of interest, which is arts. John and Kate encouraged me to write about this here, because there may be others who could just be dealing with the same ideas or wish they had another one with whom to share their thoughts.

25 years ago, just after leaving school, I discovered drawing and painting for myself when I did a volunteer year in a home for mentally ill and handicapped people. Already then, I felt that art had a great potential to connect to others, show that I feel with them and that I care. It was my aim to do something for others in my life.

When my application for training to be a nurse in a mental hospital was accepted, I was convinced that this was my call, this would be my way, my sense of life. But it didn't go so well - too much fear, helplessness, a skin 'too thin', doubts whether I could do well enough... at the end of the first half year they terminated my training contract. That was like losing the sense of my life, shortly said. After that experience I didn't have the courage any longer to train for any kind of healthcare or social work, so I had to take another direction. (I've been a software developer now for nearly 12 years.)

But I continued with my own trials and errors in drawing and painting, which helped me through this difficult time. I experienced the healing effect of allowing myself to do this.

The ideas of doing something for others by means of art remained and developed in my mind and heart ever since then. Ideas of encouraging others to discover new ways, new aspects of themselves and the world, to give a visible form to thoughts and feelings that are not yet ready to be put in words.

I'm no professional, neither (as said) in healthcare, nor in arts. But the ideas I mentioned above would not require a professional therapist/patient relationship, but rather inspiring, encouraging partnerships, friendships actually, between people that are willing to share their experience, listen and respond to each other. For example, people could exchange mails, along with digital photos of pictures.

One of the things I learned from software development is that it can help considerably if someone tries to understand your problem, think about it together with you, asks you questions about it ... And you can be helpful for others all the same just by being there and doing the same for them when they need it. I can imagine that giving or receiving such creative help could be an important experience for someone with dementia because it means it is not so terrible to have to ask for help or accept help.

From DASNI as well as several on-line blogs and comments dealing with dementia, I've got the impression that many people living with dementia today use the Internet to reach out to others, and this means they could benefit from such email partnerships, too. Sometimes they may feel very lonely because they experience other people keeping away, saying goodbye, stop calling and visiting, though they are still whole persons.

For people like me, on the other hand – i.e. full-time workers – an email partnership could be just the only way how they could volunteer. This might therefore be a possibility to build bridges between people living with and without dementia to connect, where otherwise there would be no such bridge. Surely I've just scratched on the surface of what is possible and what is already done in this field.

I'm interested in connecting with others who are thinking and/or working on similar ideas and projects. If you feel there's a way I could contribute ideas, experience, thoughts and inspiration to your project, you can reach me by email. The same, if you would like to try and find your own special approach to art and you would like to have some email encouragement and inspiration.