Here’s the latest from the crossroads of faith, media & culture: 01/11/23
Finding light in the darkness. During years of caring for her mother who lives with bipolar manic-depressive disorder and mixed dementia, Jessica Lizel Cannon has gained hard-earned insight she shares to help other caregivers find empowerment and purpose via her Proactive Caregiver Podcast and her book The Proactive Caregiver.
JWK: Why’d you to write this book?
Jessica Lizel Cannon: I had a story locked inside of me that needed to be freed. I felt compelled to speak openly after being silenced and dismissed growing up in a dysfunctional family. This book was written over the years as I stepped into the role of essential caregiver for my mother, Lizel. Then as I met more caregivers, I kept hearing repetitive questions with little to no answers available. As I researched for the answers, I found far more than what they needed to know. I could finally connect the dots between our dysfunctional family and how dementia creeps into our lives like a thief at night. Instead of stealing our sentimental items, Dementia stole our relationships, confidence, and identity, along with Mom’s ability to thrive without us.
JWK: What is a Proactive Caregiver?
JLC: The Proactive Caregiver came to be as I stepped away from the corporate world as an accountant. I was still in the mindset of reviewing historical information, trying to find a trend, and trying to predict an outcome. I coined this as a caregiver because I was exhausted and emotionally beaten down by constantly reacting to situations. A Proactive Caregiver is one who deliberately prepares for uncertain outcomes financially, legally, and spiritually. Proactive Caregivers also guard their health to avoid needing a caregiver themselves. We cannot care for our loved ones if we do not care for ourselves.
JWK: What are the primary attributes of a Proactive Caregiver?
JLC: Attentive, compassionate, and organized. What Mom taught me is that every little detail matters. Paying close attention to day-to-day changes is the difference between having time to make plans and being stuck in crisis mode. Being compassionate has a learning curve because if it’s not taught when we are little. Family or marital bonds are broken during times of need. Being organized is vital to manage the care of our loved ones because it helps to reduce the overwhelming amount of information covering many different areas of their needs.
JWK: What are the major challengers they face?
JLC: Rejection to change, depression, and loneliness. Even when the best-laid plans are in motion, the human factor is still involved. Caregivers learn how to become many different professionals to provide care on multiple levels for their loved ones, yet their loved ones reject them for various reasons. Mom wanted to prove to me that she was a survivor and did not need anyone but her living conditions and declining health proved otherwise (at) every time. These repeated rejections lead to feelings of not wanting to stay and create guilt, shame, depression, grief, and loneliness. These challenges lead many caregivers to search for tips & tricks on how to care for their loved ones to reduce these other feelings. An individual with a deteriorating brain or abnormal behaviors needs far more than tips & tricks at some point, so the caregiver faces the mourning process of letting go and the emotional rollercoaster along with this realization.
JWK: What does the term “caregiver compliance” mean and how can caregivers achieve it?
JLC: Compliance applies to the family caregiver, whether an adult child with a parent or spouse to spouse. Caregivers should have created five legal documents as soon as possible to assist them in legal and medical matters regarding their loved one’s care. In addition to the documents, there is also the need to choose a type of trust to have created in establishing their estate. It is in the caregiver’s best interest to be proactive in obtaining these documents while their loved one is still mindful of their preferences.
JWK: You have a chapter in your book titled Creating a Cultural Shift. What sort of Cultural Shift are you talking about and how can it be achieved?
JLC: The stats of those living with dementia are increasing, including those younger and younger. Dementia is no longer the older person’s forgetful disease to be diagnosed in a person’s 80s or 90s. No. Dementia is also affecting those my age and younger. When I dug into Mom’s history to track her symptoms, it was shocking to realize she was in her 40’s when we started to dismiss her as just being “crazy.” I intend to share my story to help others understand how this silent killer of dementia took over our lives and destroyed our family. I believe it will make others aware of specific areas, such as environment, managing stress, and lifestyles, that need change and how to go about it to help them prevent dementia in the long run.
JWK: How is dementia presented in movies and television shows? Have you seen, for instance, Anthony Hopkins in The Father and, if so, was it an accurate presentation of the disease and what caregivers go through? Or do you have other examples of how the subject has been dealt with dramatically?
JLC: I have not seen the entire movie but it is finally a more accurate depiction of a person struggling to live with Dementia and how it affects their loved ones caring for them. The Notebook romanticizes the decline, making it sad but not genuinely showing the day-to-day struggles. The problem with information related to dementia is that it is focused on memory issues, so people understand Alzheimer’s to be a disease separate from dementia or only an older person’s disease. In actuality, Alzheimer’s is the most common form of dementia and can affect anyone, regardless of genes, as early as their mid-40s-50s or younger. The more extended preview for The Father shows a man interacting with a lack of judgment and anosognosia – a symptom of severe mental illness experienced by some that impair a person’s ability to understand and perceive their condition. This growing epidemic of dementia is why I fight to bring awareness for prevention.
JWK: What do you want people to know about dementia prevention?
JLC: For several decades, the consistent lessons learned related to dementia have been surrounded by talk about our genes. Minimal emphasis has been placed on prevention because the idea that our genes decide whether or not we will live with dementia means we stop trying to be healthy. The problem with this mentality is that unless we have our genes tested and explained, we don’t know if that is true.
Researchers now understand the need to focus on the precursors of dementia regardless of genetics. Just because my grandparents may have lived with a form of dementia does not mean I will too. It means I have to take better care of myself regardless. I want people to know the power to prevent dementia is up to them because dementia is a disease of accountability.
JWK: You say that healing the heart will heal the mind? What do you mean by that?
JLC: Because when the heart is broken, we engage in habits meant to numb us from the broken heart but end up destroying our mind in the process. These daily habits over some time cause deterioration of the brain which exposes us to dementia, including Alzheimer’s. I used painkillers to avoid feeling back pain. It took many years before I realized PTSD was causing most of my emotional pain. By then, I was already in a cycle of using painkillers to sleep, numb from the world and then drinking tons of coffee to avoid feeling hung over by the morning. I was creating my own state of delirium and accepting it as aging. When I learned to fall in love with myself and cherish my body as a gift, I stopped treating it like a 1970s Pinto and started treating it like a Ferrari. The cliché is true – self-care is not selfish. It’s liberating.
JWK: Anything you’d like to say as we wrap up?
JLC: Once I understood Mom’s patterns and history, I recognized some similarities in my life – so I took steps to be proactive by going to therapy. Then I began to change my daily lifestyle habits, spiritual regimens, and financial planning. Many of the issues I stressed about before stopped being such a daunting trigger of fear by picking the details apart. Being proactive was learning how to heal my inner child, who also helped me understand why the fractured parts of me existed. After that, I began recognizing Mom’s fractured parts with her mental programming to self-soothe her fractured parts. I believe this is what society does in reaction to marketing mixed with the overwhelming demands to survive challenges we are not emotionally equipped to handle.
The behaviors we laughed at with Mom for so many years were the early signs of dementia. We also selfishly ignored them because we did not want to take the time to address those uncomfortable issues since we could barely handle our own painful problems. Even when we were bold enough to handle matters, we remained quiet as children because some topics were not allowed to be discussed openly. As adults, it is essential to know that every detail matters. We all have a story to tell, and once we do, the healing begins, and preventing more illnesses, such as Dementia, is possible. It doesn’t have to become our reality.
John W. Kennedy is a writer, producer and media development consultant specializing in television and movie projects that uphold positive timeless values, including trust in God.
Encourage one another and build each other up – 1 Thessalonians 5:11