Daisy lives with her husband Bob in Tulsa, USA. Together, they care for Daisy’s Mum, Gerda who has dementia.
Daisy shares her experiences and personal learning about dementia to support others and, championing several charities, works tirelessly to raise awareness through her posters published here.
Daisy shares her story of her family, her work and why she supports RAD below.
On Oct. 16, 2019 my art room was completely empty and ready for my 92 year old Mom with Dementia to move in. Within 24 hours I was shocked, angry and in tears. Why had I never been told about the things I was experiencing?
I thought visiting Mom one and two times a day had made me closer to her than I’d been in years. My sisters and I had seen the signs confirming that Mom could no longer be alone. But the more I saw of Mom’s bizarre behaviors the more angry I became. The more I saw, the more I felt sorry for her for having been alone longer than she should have been. How could my own Mother’s life be extremely foreign to me?
I decided that Dementia is treated like a huge evil secret that no one wants to talk about! But I WAS ready to talk! Fortunately I had my husband of 41 years going through this with me but he was shocked as well and we both needed breaks from it! I quickly learned how unless a person has experienced living full time with someone that has Dementia they won’t begin to fathom what you are talking about! It left me feeling alienated from the closest people in my life.
Just for proof I started taking pictures of Mom’s daily behaviors but then felt compelled to put words with them to make a revealing point. That’s when the posters began flying out of my iPhone! I never intended to become an advocate to get Dementia Awareness messages out to the world! At first I mostly needed to get these messages out of me!! But as the posters kept coming I continued to feel them being fueled by that first shock of how Dementia ignorant I was in that first 24 hours. It made me realize how much everyone needed to see what this awful and strange disease was all about.
My Facebook Days Eye Art Page was lying dormant. It still held the many photos of the mixed media art projects I’d created for years. But with my art supplies packed up in storage anyway I made an announcement on my page. With a brief introduction of mine and my mom’s new Dementia Journey together and a few posters I explained that I was officially converting Days Eye Art to a dedicated Dementia Awareness Poster page.
I continued making new posters regularly with my iPhone pictures and a free app. A few people caught on to what I was doing and warmly expressed appreciation. It encouraged me. But my page “Likes” and shares were moving slowly so I knew I needed help pushing my agenda to match the fierceness I felt to accomplish what was needed. I began to have people following my page that were working in the Dementia field. They encouraged me as well. I was even prompted to begin an awareness book publishing project with their help containing my poster images. But I opted to continue focusing on creating posters.
I was quickly learning all I could from excellent links at one of the largest Dementia Awareness pages in the world. I private messaged some of my posters to them and to my great surprise the founder agreed to start posting some of them. I sort of jokingly warned her that I’d have many more to come! My posters were now being placed in a worldwide setting! The response they were getting was absolutely remarkable with many of them reaching over a thousand “likes” in less than a day. This immediately drew people to “Like” my page including my now good friend and Dementia Mentor Alex Milne of Racing Awareness Scotland. Alex had commented on a poster and said he’d be contacting me in a private message, and he did.
For my first time I was connected with someone else’s experiences as a caregiver, or carer, as they say in the UK. Alex had cared for his wife for three years until she died. Again it was shocking to hear about his stories but in a completely different way than my Mom’s Dementia. As he explained I began pulling personal advice from him. I also felt deeply compelled to turn his words into posters, and I did. Even though he was sharing them to his page I knew that he didn’t know how much I was learning from him. I continued to push my poster agenda in his direction. I was honored to make him visible on my page.
Alex soon lead me to the nonprofit organization Race Against Dementia (RAD) that he supported through his racing. I began reading all about their researching and pursuing a cure for Dementia using scientists from around the world. With Alex being a race car driver I understood his personal connection to the founder of RAD, the Formula 1 Racing Legend Sir Jackie Stewart. But also like Alex this man too has cared for his wife Lady Helen, living with Dementia. Both of them share similar heartbreaking journeys.
The next thing I knew I had made a donation to them! It gave me a wonderful and unexpected feeling!! I felt a sense of ownership to the cause and to the cure!! Donating for that first time somehow freed me! It felt as if I’d given powerful wings for all of my poster words to fly! And now it felt good to me and for Days Eye Art to know I had a place where I could personally support a group that’s working on a cure! And I never dreamed that now months later I’m surprised to have been asked by them to share my story for their website!
My husband having created in Photoshop for years in the television industry had been seeing my posters and liked what I was doing with them. He decided to upgrade me with a brand new iPad and the high tech Apple Pencil! I downloaded a brand new program and began using creative concepts completely new to me!
I was feeling comfortable enough with my posters that when I saw a writing or comment that had an important impact on me, I’d contact the author and get permission to create something with it. This is when I discovered Dementia Awareness activist Norm McNamara, the published writer and founder of Global Purple Angel. I was taken aback by him because he was the first person I’d ever interacted with that actually had Dementia besides my Mom! And he presently still is the only person. But I mostly saw how he was changing the world in spite of it!
After I made a couple of his posters he shocked me in a thread comment by asking if I would like to become a US Ambassador for Global Purple Angel. I immediately knew my answer! I had already done enough research to know that this massive non profit Dementia Awareness organization was visible in 56 countries!! I jumped in with both feet! I’ve since had the privilege of working directly with the founder and co founder creating many global posters that benefits Dementia Awareness in ways I never could have imagined!!
My small Days Eye Art Page of nearly 500 may still be quietly nestled in a small corner of the largest social media entity in the world. But to know my posters are blasting Dementia Awareness messages all over the globe is an unbelievable thrill to me! There’s something mysterious about knowing I can turn my own toughest days with my Mom into a poster powerful enough that it somehow brings comfort to other caregivers around the world living in unbelievably painful and brutal situations, especially compared to mine.
After creating well over 150 Dementia Awareness posters in less than a year, the most personal and powerful one for me is still the one that marks those first unforgettable 24 hours!! Dementia’s ugly face stared directly into my eyes and dared me to do something about it!! And I am!! On behalf of my wonderful Mom and anyone else who will face this fatal illness in any way, this poster will continually be the reminder and fuel for my drive!
“Within 24 hours of being a Dementia Caregiver I wanted the world to know what I didn’t know! Learn what you can now.”
Daisy E Vest
