My Dad was a well-respected, successful attorney for 30 years. He worked hard and was admired by many soon becoming the managing partner of his law firm and expanding the firm almost double in size. Suddenly, Dad decided that he was going to retire. Mom and I were very surprised by this announcement as Dad’s work was perhaps one of the most important things in his life, he was only 67, we thought retirement was a long time away. On his last day of work before retirement, he complained about being extremely dizzy. He was diagnosed with an irregular heartbeat by an emergency room doctor and told us that they would need to implant a pacemaker. Eventually, Dad would be diagnosed with congestive heart failure causing multiple doctor’s appointments and hospital stays. A few months prior to Dad’s first cardiac incident, my Mom was becoming quietly concerned about some minor memory lapses and confusion. After several months, the symptoms continued. Dad was forgetting things, repeating himself and confused. Not all of the time, but enough that we each noticed.
After a rigorous work-up at a prestigious medical facility, the physician told the three of us that my father had dementia which was likely caused by Alzheimer’s Disease. He explained that there was no cure, and it was time to get our “affairs in order.” He prescribed some medication to help in the short term, told Dad he should stop driving soon, and from then on he only addressed my mom and I. It was almost as if Dad was not there and that he could no longer think or make decisions since he had been diagnosed with dementia. Shocked, we gathered our things to leave and on the way out the door, the doctor looked Mom in the eyes and said: “I wish you all the luck, this will be the hardest thing you will ever do in your life.” So, we began our journey home feeling completely scared, lost, and hopeless.
Looking back, there are 5 things I wish I had known before Dad was diagnosed:
1. Dementia does not change the core essence of a person. It changes how they experience the world around them, but it does not strip them of the ability to love, laugh, and enjoy life. Though there were difficulties, my father was my Dad until the day he died. Your loved one is still themselves, living with a changing brain, and can still live well and experience the wonders of life.
2. Lack of dementia education results in stigma, poor care and lack of supports for people from all walks of life... Our world is not well prepared to support people living with dementia or their care partners. We knew nothing about the physiological effects of dementia, such as sensory difficulties, and the need for improved education. Having a place to turn to for assistance with this would have been invaluable as no network or referral system currently exists. The creation of this type of support system as well as dementia friendly communities would help families like mine better navigate the challenges ahead.
3. There are care practices being championed by families and organizations that hold the person at the center of the care experience. Individuals and organizations focused on the here and now of how to live with a changing brain — either one’s own or a loved one’s–are changing the face of dementia treatment and support. Teepa Snow and her organization Positive Approach to Care, the Dementia Action Alliance, and Kim McRae and Walter Coffey of Culture Change Network of Georgia are doing powerful work to support patients and families. The Eden Alternative is an amazing organization that focuses on changing the culture of care through education and provides training in support of their mission. I wish I had known about these people/organizations and how to access them. No doctor or anyone told us about these resources, only that there was “no cure.”
4. Caregivers and families are in critical need of support and often aren’t getting it. I wish I had known I would have to provide so much support for my mom. She was the one who really needed the most assistance throughout our experience with Dad, and I had my own overwhelming worries about both my of my parents to navigate as well. What I didn’t know at the time was that there were so many other people out there facing the same thing. When we finally connected, we shared so many similar challenges and fears. In order to fully take care of our loved ones living with dementia, caregivers and families need connection with each other to not feel so alone. Currently, there are not enough support groups that are appropriate or accessible. No network or system exists to connect these families who so need each other.
5. There is no clear treatment plan or path for dementia, and every diagnosis takes its own path. Unlike illnesses where doctors can give answers and a definitive treatment plan, dementia takes its own road and there is no standard course of care. This unpredictability and lack of concrete answers heightens the uncertainty, fear, and overwhelment that people with dementia and their families face. Medical professionals are often ill-equipped to satisfy the countless questions and concerns that families raise, especially if the person living with dementia is experiencing other medical issues. From emergency room care, to hospital care, to routine doctor exams, greater and more compassionate support for people experiencing dementia and their families as they face the unknown is urgently needed.
Whitney D. Oeltmann, MSW, and her Mom, Linda DeMarlo, MEd, Ed.S, started Dementia Spotlight Foundation in 2016 to help people living with dementia and their care partners. Anthony DeMarlo passed away in July 2017 after living with dementia for 6 years.