During my visits with Mom, I tried to be present at the moment with her, enjoying as much conversation as possible. I knew once I left her apartment for the day, the moment I stepped out of her community, my mind would fast forward to the scary unknown of her final days. Each moment of laughter or painstaking effort to pull her focus from seek-n-find word puzzles to meet my eyes was my desperate attempt to hold on to her in this present moment. Her smile revealed contentment. Her laughter revealed happiness despite diminishing abilities.
Each time I received an update from the nurses or med techs, I felt grateful for the knowledge but alarmed at the same time with an invisible sand hourglass that became my elephant in the room. Aside from conversations of final wishes and pondering what life after death might look like, I felt the need to take more pictures and videos of Mom while I had the chance. I did not do as much with Dad because I assumed we had more time together when we did not. My cellphone shots of Mom, were nice memories to have in between visits, but I had to secretly steal these memories because Mom hates having her picture taken now.
Even if I am lucky to catch her in a good mood after a shower to be in a picture with me, Mom is quick to push her hair down into her face in an attempt to cover what she calls her "Big egg forehead." As Mom's Dementia progressed from Vascular Dementia to Frontotemporal Dementia, her hairline receded with noticeable balding. When she was still concerned about her image, bangs would cover her forehead, and she would continue to smile with confidence. That confidence waned over the years, and the smile became a grumpy or disgusted posture more often than not. As Mom's self-awareness disappeared, her forehead would only be an issue when a camera appeared to capture the moment.
As the holidays approached near the end of 2021, Carmen Davailus, nurse practitioner, photographer, and author of "Just See Me, Sacred Stories from the Other Side of Dementia," gave me a gift to treasure for years to come. Carmen is also the founder and president of the non-profit Doggies for Dementia Foundation. Thanks to her foundation and talents, Carmen provided studio portraits of Mom with a heartwarming video from the photo session. As a nurse practitioner, Carmen came face to face with many families dealing with Dementia." One afternoon as I finished a visit in the clinic, I heard, 'You need to tell these stories. The world needs to know.' Even with no formal education in writing, photography, or business, I embarked on a venture in unfamiliar terrain with incredible certainty as every tool I needed showed up."
Right away, Carmen and I were divinely connected on a similar goal to share stories about the unknowns of Dementia, so the world gains a clearer understanding. Too many assumptions mixed with the common denial reaction make sharing stories of those affected even more important. And when divine intervention touches your soul, then your innate gift comes to life. Carmen speaks in her book about buried talents from long ago, returning to give her life meaning beyond her career as a nurse practitioner.
I loved that Carmen refers to the families as opening their hearts to give us a glimpse of their experiences with dementia-body, mind, and spirit. These stories are what my family needed back in the early 1990s when we had so little knowledge of what Dementia is and how it would affect all of our lives. Our family dismissed the possibility of Dementia for Mom because she was far too young to consider Dementia based on what we knew during the 1990s.
We could always dismiss a behavioral response on one thing or another yet never stop to reflect on the details around each occurrence. We could have identified a pattern and pinpointed environmental factors that could have been changed early on, but we did not. We dismissed her while symptoms progressed until we could no longer avoid the looming safety issues. We dismissed her until her level of dependency grew to just about every activity of daily living, except the need for transference. Then the disease of accountability stared us all in the face through Mom's vacant eyes of confusion.
Years later, after stepping into Mom's world, I was able to see her. Truly see her reasons for holding to such a strong survivor's identity. We may have had a difference of opinion at the beginning of what surviving versus existing meant to each of us, but I could see the need to be seen as capable. So many families bring their loved ones to the doctor's office in hopes of receiving more information or help with care, only to receive a mixed response because their loved one is judged based on their capabilities. We drop them into a category of mentally challenged, which drops our confidence with them as being capable caregivers.
Carmen asked me two very important questions as we prepared for Mom's photography session. I will share my answers, but I want you to consider your answers because every story is significant to learn from and share.
What has been the most challenging part of your Dementia/Alzheimer's journey?
My biggest challenge along our dementia journey has been the lack of education for the public through big agencies down to family members. When I suspected Mom had Dementia and not just Bipolar tendencies, I shared my concerns with family members, neurology doctors, and even her first assisted living director. All of them told me I did not know what I was talking about because, to them, in their limited interaction with Mom of the present day, said she was "fine." Mom's first neurologist said she was fine, so I took Mom for a second opinion. I knew she was not fine.
The second opinion was well worth it because the 2nd neurologist acknowledged my concerns, admitted her limited knowledge of FTD dementia, and requested forensic testing, which later confirmed my proposed diagnosis. My career as an accountant, paying close attention to detail, paid off for Mom's well-being by paying close attention to her movements, routines, moods, changing appetite or sleep patterns, and loss of passion for the life she once thrived in.
The caregiver's job is already hard enough without people telling you what to do and not listening to your concerns which only adds insult to injury. This treatment hurts even more when they do not know better because denial can be a strong persuasive distractor.
What has been the best part of your Dementia/Alzheimer's Journey?
The best part of our dementia journey is the transformation I have gone through. I already knew life would be too short, and we only have this one go-round to make it count. Dementia changed my mindset in how I viewed my mother as an individual, not just Mom – the woman who gave birth to me.
This journey has changed my mindset of proactively taking care of myself and my family. Even as Mom declines, we have been able to heal from our past and appreciate each other more in the present moment. This journey also became why I finally had the courage to seek therapy to cleanse our past. A past that affected me as a caregiver, wife, and mother has now been transformed for a higher purpose. Mom and I did not have a strong Mother-daughter relationship until much later in life, which I am grateful for having now, even as Dementia robs us of more time.
There is no cure for Dementia. The best we can hope for and live for is through prevention. Many powers that be do not want to hear the word "prevention" because it stands to affect their profit margins or donations received. My truth is that I choose to use my free will in preventing this form of demise by learning from Mom's journey.
The U.S. Society can name diseases because there is money to be made from our ignorance. For example, the newly termed Type 3 diabetes is now linked to Alzheimer's. Who do you think gets to benefit from naming a new walk for a cure? We can be the beneficiaries of shared stories to learn from each other and stop the cycle our culture has fallen prey to from convenience, greed, and emotional suffering. Only you have the power and will to heal the heart, to heal the mind. Learn about Dementia and harness the power of change.
In the meantime, I encourage you to seek Carmen Davailus through Doggies for Dementia to capture your loved one at the moment for lasting precious memories. Please keep in mind that she operates a non-profit foundation that is dependent on donations. She provides priceless memories to families and needs our help to bring more awareness to Dementia.
Thank you for joining in and listening today. I hope this episode gave you more food for thought. Until next time, BE PROACTIVE. Take care, everybody.
"Just See Me" https://amzn.to/3DJbor6
Intro: Vacation Time by Khris Paradise
Outro: Misty by Khris Paradise