My Personal Story with Dementia

Personal Story of Dementia

On this day 12 years ago, my Grandma Marie was diagnosed with Vascular Dementia. This launched part of my career path, motivating (and inspiring) me to take a campus ministry focus and turn it into a vocation. Living with dementia is difficult and sometimes dark, but never without a flicker of light as long as there is joy, compassion, love, and we strive for better care, a better way of life, and work towards a cure.

Her Signature

Personal Story of Dementia

My Grandma Marie’s signature is on everything I do. Well, you can argue that all of my grandparents and parents have their signature on my life as well, but when looking specifically at dementia, it is my Grandma Marie. My grandma had Vascular Dementia and lived with the disease for 6 1/2 years (a diagnosed 6 1/2 years). I always ask myself whenever I am about to develop a program, lead a training,  or sit with someone with dementia, “How would Grandma Marie need me at this moment?” For as many people there are with dementia there are as many forms the disease takes, but with my grandma in mind I am always reminded that this person is not dementia, they have lived a life I do not know and have stories that far exceed what I see before me. With Grandma Marie’s guidance and in remembering her, I have set forth into this work. These “pages” will be filled with stories of my personal experience with dementia, but primarily filled with information that may become a resource for us, to better communicate, care for, and sit with those living with one form of the disease or another. I seek to make sure the voices of those diagnosed with dementia are present, and that this may be your guide through the often difficult journey of dementia.

In April I went to visit an assisted living where I once worked and the phrase Bonae Memoriae fit with all that I was thinking about regarding dementia. It is the working title, and one that I hope becomes a reminder for myself, and you the reader about what I believe to be the current running through dementia work. Of Happy Memory. A person with dementia may not remember what they ate for breakfast, or what they did an hour ago, but they will remember how they felt, and the impressions the individuals around them left. So let’s help them make it a happy one.

Thank you for coming here, reading, and hopefully sharing with me and others your own experiences, thoughts, and questions. As my knowledge of dementia grows, and as we as a society and field learn more about dementia I will make updates to any information that becomes out of date, or no longer best practice. I will share with you resources I use and have come across.  I hope to balance information learned from the lens of the artist, the creative arts therapist, the medical professional, and most importantly the person with dementia.

All of us are living with dementia, and a cure is not certain (at least not in our lifetime), but we can care, we can give, and we can learn from the millions of individuals with the diagnosis of dementia and their caregivers.