In my journey to find out more about Alzheimer’s disease, I quickly realized that the most effective healthcare professionals were going to be those who combined scientific, quantifiable knowledge and skill with that all-important ingredient of compassion. I feel blessed to have found such people and, in this and future blogs, will be introducing them to you, too.
One such medical professional is neurosurgeon Keith L. Black, Chairman and Professor, Department of Neurosurgery, Cedars-Sinai Medical Center in Los Angeles.
When I was first told that Dr. Black would speak with me, I wondered why. According to Dr. Black’s biography, he seemed to specialize not in Alzheimer’s disease, but in neurosurgery; since 1997, Dr. Black has performed more than 5,000 operations for resection of brain tumors. He was featured on the cover of Time magazine in the Fall 1997 special edition of Heroes in Medicine, and his book, Brain Surgeon: A Doctor’s Inspiring Encounters with Mortality and Miracles,” was published in 2009.
On the day that I met with him in his office at Cedars-Sinai Medical Center, Dr. Black’s schedule was very tight. Although I expected him to be rushed through our interview, he was quite the opposite. He carefully walked me through some foundational information about Alzheimer’s Disease and about how disease activity and symptoms are distinct from other kinds of cognitive decline, including “normal” aging and brain disorders, such as Parkinson’s or other forms of dementia. He also helped me understand how diagnoses are made now and how they might be better and more quickly made in the future.
But it was when we began to go beyond the purely medical aspects of Alzheimer’s disease and speak about how it affects the person who has it and his or her caregivers in their daily lives that we arrived at the true “heart” of the matter – and I understood why the interview was taking place.”My mother passed away in May from Alzheimer’s disease,” Dr. Black told me. “As a neurosurgeon who deals a lot with brain cancer, I’ve always thought that brain cancer was the worst disease you could have. It takes away the very essence of who you are, your ability to speak and to interact with your loved ones. But, at least the bad part of the disease is very short.”
He continued: “The difficult part with Alzheimer’s disease is that the bad part of the disease lasts a long time. You’re not talking about having a bad period that’s measured in months, but in years. That could be five years, that could be ten years, when you have to interact and care for your loved one, family member, who’s not able to speak to you or have a conversation with you and not be able to care for themselves. That takes a real toll on the family, the caregivers. In fact, the stress and toll on the caregiver is more than on the patient because the patient is going to have their disease course. But the emotional, economic and social suffering really occurs on the part of the family and the caregiver. That’s what makes Alzheimer’s disease such a bad disease.”
Dr. Black paused a moment. “So, I’ve changed my opinion. Alzheimer’s disease is probably the worst disease, much worse than brain cancer because of the time that the family and the loved ones have to suffer. Alzheimer’s disease will test faith, relationships, bonds. All of those things will get tested.”
When a loved one is diagnosed, Dr. Black said that one of the most important things is for families to understand the timeline of Alzheimer’s disease and to make appropriate plans, including how much assistance they are going to need now and in the future.
He added, “While everyone is focused on the loved on with Alzheimer’s disease, they forget the stress that’s on the caregiver. You’re going to change the diapers, feed mom or feed dad, make sure they’re bathed and get to all those appointments. The stress on the individual can be significant, and it’s important for the family and that caregiver to keep things in balance. It’s also important for the caregiver to be aware of [their stress] and reach out for help. Because we all know that added stress can increase health problems for the caregiver who may be under stress.”
Dr. Black’s generosity in time and insight is important as we go through the rest of November and beyond. Awareness of Alzheimer’s disaese’s medical components and issues is vital to erasing the stigma, raising support for research and patient advocacy. But along with it is the need to shed light on what caregivers experience and need, for theirs is the unsung role that is crucial to the journey. The more we appreciate those in the medical community who will understand and articulate this, the better off we will all be.
For more information about resources for caregivers and people with Alzheimer’s disease, see Beliefnet’s special section “Cause of the Month” under the Inspiration tab at the top of your screen.
Blessings for the day,