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 to almost double in size. Suddenly, Dad decided that he was going to retire.

The early stages

Mom and I were very surprised by this announcement, as Dad’s work was perhaps one of the most important things in his life. And he was only 67 — we thought retirement was a long way 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 that he would need a pacemaker. Eventually, Dad would be diagnosed with congestive heart failure, leading to 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 getting confused. It wasn’t all of the time, but it was enough that we each noticed.

Receiving the news

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, only addressed me and my mom. It was almost as if Dad was not there — that he could no longer think or make decisions. Shocked, we gathered our things to leave. 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 scared, lost and hopeless.

Looking back, there are 5 things I wish I had known before my dad was diagnosed.

1. Dad was still Dad

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 Dad until the day he died. Your loved one is living with a changing brain, but can still live well and experience the wonders of life.

2. Education is lacking

Lack of dementia education results in stigma, poor care and lack of support 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. Having a place to turn to for education and assistance with this would have been invaluable, yet 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 is human-focused care

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 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 and organizations and how to access them. No one, including doctors, told us about these resources — they only told us that there was “no cure.”

4. Caregivers need support, too

Caregivers and families are in critical need of support and often aren’t getting it. I wish I had known that 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 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. No Alzheimer’s case is the same

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 and fear 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.