There are estimated to be over 5.4 million people with Alzheimer’s disease. For every person diagnosed, numerous others are affected, such as spouses, siblings, and caregivers. The disease accounts for billions of dollars in direct medical costs and indirect costs to caregivers.
For 10 years, Dr. Jon LaPook, correspondent for 60 Minutes, has been following Carol Daly and her husband, Mike. Carol has Alzheimer’s disease, the primary cause of dementia, and her husband is her caregiver.
The story began in 2008, when Carol’s dementia was just beginning to reveal itself. Unable to concentrate, she lost her job, and had to give up reading books and watching movies. Despite her limitations, Carol was active and conversational, and was determined to make the best of her situation. The couple said that Carol’s illness had brought them closer.
By 2011, Carol had no idea how old she was, and required assistance with all of her activities of daily living. Her husband Mike had to dress her and apply her makeup. He also did all of the household chores. Mike had gained 20 pounds, and had started taking medicine to reduce anxiety and help him sleep.
One year later, Carol required constant supervision and complete care. When she couldn’t find the words to answer a question, she simply laughed. Mike acknowledged that their lives were challenging, but insisted that he would never put Carol in a nursing home.
In 2014, life was much tougher for the couple. Carol could no longer remember her last name, or her husband’s name. She also began to lose the ability to control her hands and feet.
By 2016, it was impossible to have a conversation with Carol. She couldn’t do anything for herself. Mike reached the point where he could no longer care for her by himself. He hired a home care aide to help him during the day. This cost $40,000 a year, and caused financial strain for the family. Mike’s stress level increased and he began to have chest pain.
In 2017, Carol spent most of her days sitting in silence because she was unable to understand or answer questions. Mike felt isolated and lonely. His own health was deteriorating.
By 2018, Carol was completely unresponsive and confined to a wheelchair. She required 24-hour nursing care. Mike confided that he felt that Carol was basically a “vegetable,” and he never realized that she might be in this condition some day. His thoughts became dark, and he began to consider suicide. He decided to place Carol in a nursing home.
When asked if he still loved Carol, Mike replied that he loved Carol when she was Carol. But now Carol is not Carol anymore.
Dr. LaPook noted that when Carol was still Carol, that would have been the best time to discuss the kind of care-giving decisions Mike eventually had to make alone. Mike hopes that sharing the intimate details of their lives will help others be better prepared than they were.
Reference: 60 Minutes (April 22, 2018) Following a Couple From Diagnosis to the Final Stages of Alzheimer’s.
