It’s kind of funny to be preoccupied by mortality as a 24 year old. But the memory of my mom’s final year made me realize that the quality of life for many people in their later years is abysmal. In the last year of my mom’s life she was living in a nursing home—she couldn’t walk so she was either sitting in a wheelchair or lying down in bed all day. She was incontinent, couldn’t dress herself or eat whole foods, and she shared a room with a total stranger. I’m shocked by the life I accepted for my mom at the end of her life. But at the time, I didn’t even consider that a good life was possible for her. Now I’m realizing that it takes imagination and courage to design a better life for someone in their final years.
As I’ve been working on my book, I’ve been thinking about how people can create a meaningful life while living with Alzheimer’s or in old age. What we want in life doesn’t change much whether we are young, sick, or old—generally, we want to be of service, to engage in activities that interest us, and to feel connected to others and the world around us. What does change however, is our ability to hold onto our independence and autonomy. In old age or illness, people may lose their ability to walk, talk or eat, and this puts their lives in the hands of others who often make decisions for them in the name of safety and ease. When my mom became too difficult to take care of at home, my family decided to take her to a nursing home where we thought she would be safer. And though the nursing home did provide more ease and physical safety, it killed my mom’s spirit. In less than a year after being admitted, she was gone.
What activities are accessible to those who are sick or elderly that allow them to feel of service, engaged or connected? Sometimes, finding the answer is as simple as asking. In the nursing home where I volunteer, I asked one patient what she would choose to do if she was able to do anything. Her answer was simple—she wanted to design and knit small bags as she used to years before. Providing her with an engaging activity was as easy as purchasing a sewing kit, yet no one knew to offer this to her because no one ever asked. Similarly, as I was staring out of the balcony window from the third story of the home, I could see the bright blue sky and Kobe City in the distance. Though the view was beautiful, I felt removed from it. It was as if the outside world were only for me to see and not to experience. Everyday outdoor activities like going to work, stopping by the supermarket or grabbing coffee provide an opportunity to get some fresh air and come into contact with others. However, moments such as these aren’t available to most people in nursing homes. To offer the elders more time outdoors, I suggested that we take them out to a nearby supermarket where they can buy their favorite snacks and enjoy them in the park. This way, they could leave the home and have some autonomy over what they eat. Simple pleasures like this may be taken for granted in our youth, but can make a big difference in old age. Then, as I was leaving the nursing home on Wednesday, something small, but delightful happened: one of the elders asked me to “please come back to chat” as we bowed goodbye. I was really touched by this moment and reassured her that I would definitely be back. Forming relationships with others is vital no matter how old or ill we become.
If I could go back, I would have left New York to take care of my mom at home. There, she would have been surrounded by loved ones and familiar sights, sounds, and food. She could have heard the same birds outside, looked at the same view she’d seen for years and spent time with our dog. But being able to live out the final years of life in one’s own home seems to be a luxury these days. As children of old parents or people with sick loved ones, how much of our lives are we willing to change or put on hold to take care of them? This question is difficult to face. For me it brings up feelings of shame, selfishness, naivety, and regret.
My experience in Japan thus far has shown me that the challenges of Alzheimer’s and aging don’t differ much between the U.S and Japan. Though Americans and Japanese come from dramatically different cultures, the needs and desires people possess at the end of their lives are fundamentally human and thus, cross cultural boundaries. This work is tough and deeply personal, but many of us will face this reality at some point and I think it’s important to do so with less fear and more understanding. I hope my work can aid in that process.