Georgia (far right) with her mom and sisters Lisa (left) and Jennifer.
Thank you for this incredible opportunity to share our experiences and gain comfort and support from each other. I’d like to tell you about my Mom, Janice (pronounced Ja-niece).
The experience of caring for her in the last years of her life through adult day care all the way to hospice has had a profound, everlasting and everloving effect on me. I wouldn’t trade those memories for anything.
Let me start by saying my mom chose to marry “later in life” and had five children after the age of 40 (an unbelievable feat! And all natural births to boot!). An unknown blessing of that decision was that in her “senior” years, her five children, especially her three daughters (single, without children and still living near her) were still young enough and strong enough to care for her and devote much of our free time to helping her.
We made the group decision to help Mom get through this to the best of our abilities. I’m one of her daughters. Mom began showing signs of memory loss about 15 years ago at the age of 75 (then already a widow of seven years). There were subtle signs at first: repeated questions; confusion as to how to use the stovetop (eventually we had to remove the control knobs); repeated dialing of familiar phone numbers; and confusion as to how to apply her makeup.
At that time, my two sisters and I took turns living with her and providing daily assistance. Back then we didn’t “understand” dementia or Alzheimer’s disease. We all, admittedly, feel guilty for some aspects of those early days of her decline for not being more compassionate and supportive. Public awareness of this disease and how to handle those afflicted by it was really in its infancy at that time.
Our next decision was to enroll Mom (who was now about 80 years old) in a nearby adult day center. "You’ll be going to school,” we told Mom who had always prized education. That offered us peace of mind. One of us would drop Mom off on our way to work and pick her up on the way home. It allowed each of us to keep our full-time careers – and to know that Mom was safe, socially stimulated and receiving nourishing food! (As a dietitian, that was very important to me!)
We were able to keep up this routine, although very challenging at times, so that Mom could attend adult day care for nearly five years. During this time, she slowly lost her ability to talk in full sentences and let her needs be known.
This was one of the scariest stages of her decline. She could make sounds and pronounce some words, but it was a language all her own. We had to develop our skills at reading her body language. When it was a non-family caregiver spending time with her, we had the added worry of wondering if Mom was well cared for, since she couldn’t verbally report any wrongdoing to us.
At this time we began keeping a daily caregiver journal, fondly known as “Momma’s Book.” In this journal, whomever was with Mom would enter the vital details of their shift, such as foods eaten; fluids consumed; activities accomplished (she loved folding laundry); bowel and bladder movements/diaper changes (we called them her “special undies” to help her feel more dignified); and phone calls received and any other pertinent information.
When Mom lost her ability to walk at about the age of 85, she became an official “stay at home” Mom. My two sisters and I changed our work schedules to accommodate Mom’s needs for around the clock care. We found a couple of caregivers to assist with covering shifts when the three of us were not available.
I moved in with my Mom in April of 2000 to provide her care and companionship in the evenings and help get her into bed each night, always with a wish for “sweet dreams.” I truly miss those days; they were tender and sweet.
We rented and became proficient at using a hospital bed, wheelchair, Hoyer lift, wheelchair ramps as well as food processor to prepare soft, easy-to-chew-yet-good-tasting foods for Mom when she no longer desired to wear her dentures.
And through all this, the daily caregiver journal continued. They are priceless to us now. My Mom passed just over a year ago, just shy of her 90th birthday. "Entering Heaven at age 89 sounds so much younger than 90!" we imagined her exclaiming.
In her last earthly days, it was not Alzheimer’s disease, but an acute lung infection that she struggled valiantly to overcome that took her last breath. We are blessed that in her last 48 hours of life, she was loved and comforted by her three daughters, attended to by her hospice nurse, and listened on the telephone to the voices of her two sons that lived out of state.
I was honored to be with her at the last breath of her life; it was a sacred moment. She was beautiful, brilliant, a gifted writer, and the person I loved most on this earth.
I felt this love especially in her later years, when the independence and confidence of her earlier years surrendered gradually to Alzheimer’s disease. She became dependent, but an angel who taught me what love truly is. I miss her every day. She continues to guide my steps.