Dementia and Redefining Quality of Life

The idea of dementia or dependence appalled my mother. For many years, she declared, “If I ever get Alzheimer’s, take me out and shoot me!” Her definition of quality of life was firmly grounded in her ability to think and live independently.

Time has forced many changes, including that definition. After the death of her husband, my mother lost her home, the proximity of friends, her horses and her role as wife. Unable to live alone due to her dementia, she has been living in an adult care home for the past 3 years. She adjusted to her new life, often giggling with caregivers, and watching her favorite TV westerns while enjoying an endless supply of chocolate. I was surprised. Was her dementia a pathway to acceptance?

When my mother was hospitalized last year at the age of 90 due to a fracture from a fall, I understood the odds of this medical crisis resulting in a quick decline and death. Given her previous statements about what makes life worth living, I thought she might welcome the chance to leave this life. Because if I shared her definition, I knew I would!

Before her surgery, lying in her hospital bed, my mother stared into the empty space in front of her, joyfully
exclaiming, “I see you!” Recognizing she was experiencing a vision, I inquired who she was talking to. Although she was unable to tell me, the look on her face was joyful as she seemed to listen intently.

Drawing from my hospice experiences, I wondered if whoever had come to visit her would also ease her transition into the next realm. It felt like the door had opened to exit if she chose to do so.

Her surgery was completed without incident.

Back in her room again, my mother focused on the space in front of her again, mumbling and smiling. She then turned to me with sudden clarity and asked, “Is it OK if I leave?” Then she added, “It was easy for my mother. I’m ready for this to be over.”

I responded, “We will miss you….but” and she quickly cut me off with a disappointed “Oh, OK, I will stay.” I tried to tell her that that rest of the sentence was that she could “leave whenever she wanted to”, but she no longer heard me. Or perhaps she did not want to hear me.

I wondered, “Why did she wait until after the surgery to ask this?” If she was really, “ready for this to be over,” did she miss her window? Was she testing my desire to keep her on earth? Was I a bad daughter for wishing for her release from a life she had previously not wanted? Or was I imposing my own definition of quality of life on her now, not realizing hers had changed? Was this her new definition of quality of life?

It’s been over a year now since that hospital stay. Although my mother is wheelchair bound and requires total care, she is happy. She eats like a horse, and enjoys the attention of the staff who have become her family.

I admit to fluctuating between being surprised, sad, and happy for her. Due to her dementia, she is blissfully unaware of her limitations. She happily waits for the time when she can buy another house, drive her car, and take another trip to the Caribbean even though those dreams can never be fulfilled.

Is it her dementia or her hope that has transformed her definition of quality of life?

Will I have also experience a redefinition of quality of life with graceful acceptance one day?

I wonder.

If so, will my sons also wonder as I do now?

And will they take this same transformational journey with me?

About Tani

Tani Bahti, RN, CT, CHPN, offers practical guidance to demystify the dying process. A RN since 1976, Tani has been working to empower families and healthcare professionals to enable the best end-of-life experience possible through education and the development of helpful tools and resources. The current owner of Pathways, Tani is also the author of “Dying to Know, Straight Talk About Death and Dying,” a book that SevenPonds considers one of the most helpful books on the subject available today. Founder Suzette Sherman says, “This is the book I will have at the bedside of my dying parents some day, hopefully, a very long time from now.”