Almost 14 years ago, our family was sitting around the Christmas dinner table when my mother began speaking to my brother as if he were her brother, not her own son. That confused exchange lasted only a minute, but it left everyone — including Mom — speechless or in tears.
That was our first indication that Mom was heading down the dark hole of Lewy body dementia, a frightening, painful and yet somehow life-affirming journey for her and our family. Along the way she lost not just her memory and grasp on reality, but also her vision and her ability to walk unassisted or feed, bathe or dress herself.
It also, at least indirectly, cost Mom her beloved husband of 61 years. Although she remained mercifully unaware of that loss, my father passed away in 2015 under the constant stress of being her primary caregiver for more than a dozen years. Even at age 83, Dad's death was quite sudden and unexpected, as we were all focused on Mom's terminal illness. It was only after Dad passed that I learned a shocking statistic: Of family caregivers age 70 and older, 70 percent die before the loved one they are caring for. Sadly, Dad is now part of that statistic.
After my father's death, my wife and I moved to Ohio to care for my mother in my parents' home. With support from my brother and other family members, as well as an extraordinary part-time care worker and in-home hospice services, each day until her recent passing filled a full spectrum of emotions, from tremendous sadness and anxiety to occasional joy and even a new appreciation of what it means to be alive.
Here's some of what that experience taught me, and — while I wouldn't wish my mom's condition or my family's situation on anyone — how caring for her changed my perspective on life and love forever.
- Preserve human dignity. We would never speak about Mom in the third person when she was present; we wouldn't "feed her," rather we would "help Mom eat." Yes, Mom was profoundly diminished, but that had no bearing whatsoever on her human dignity.
- Rethink the meaning of "hope." I realized that despite everything we were doing for Mom, her condition was terminal, and in the end we would lose this good fight. Accepting this has given me a new perspective on "hope," one that has helped me to maintain my emotional stability. I began to hope simply that Mom had a good day, or even that she'd smile when she woke up in the morning.
- Never sell your loved one short. Like many late-stage dementia patients, my mother could no longer use language to effectively communicate her wishes, but she could do so in nonverbal ways (she could definitely make it known if she didn't want to do something). In the absence of communication via language, it was easy for outsiders to assume that Mom was far less able than she in fact was.
- Be here now. I never mastered the true art of living in the present until I started taking care of my mom in this final stage of her life. For Mom, there was only the present — fleeting thoughts, random words, partial outward reflections of her world. I finally, fully, resigned myself to the fact that I had to visit her there, in her world, rather than continue to attempt in vain to pull her back into ours.
To my surprise, I found that living entirely in the moment with her was strangely comforting and joyful for me, and, I feel certain, for her as well. Being there in the present, with Mom, was where I wanted and needed to be.
Jeff Yeager, AARP's savings expert, is the author of How to Retire the Cheapskate Way, Don't Throw That Away!, The Cheapskate Next Door and The Ultimate Cheapskate's Road Map to True Riches. His mother, Joyce Ellen Yeager, passed away June 3 after a 14-year battle with Lewy body dementia.