The White Rock Journey: Looking for Meaning in Dementia Care
The journey of my Dad’s Alzheimer’s Disease lasted 12 years. The journey was filled with many kinds of moments and many lessons were learned.
FRUSTRATING MOMENTS when he would not take a shower or when he wore the same corduroy pants everyday,and not the ones you just gave him for his birthday!
EMBARRASSING MOMENTS like the time at a large gathering when heput his arm around my son, as if to impart some “grandfatherly wisdom,”but instead pointed across the room and said:
“You see that lady over there, she must weigh 400 pounds.”
ANXIOUS MOMENTS like hearing that he was looking in the dining room for breakfast at 3am or when you let him walk the dog in your neighborhood, but frantically RUN around the corner and say you’d like to join himbecause you are afraid he will get lost.
SAD MOMENTS when you realize the type of relationship you had is over.
DIFFICULT MOMENTS when you pray he won’t really understand that his money is running out and he will need continued care.
GUILTY MOMENTS when you decide that you must forward his mail when you learn he has been sending cash to all solicitors. He is the target of scams. Yet, he looked forward so much to getting his mail.
PANIC MOMENTS when driving became unsafe and he found another set of keys that nobody know he had or he figured out a way to get the tire fixed after you let the air out!
OH NO MOMENTS when what you thought what would work did not!! He loved giving Christmas checks to his 8 grandkids, so we “thought” we would help him out with this and prepare the checks and put them in envelops for him to give. He became very angry.
JOYFUL MOMENTS when you sing and dance together, share a favorite meal or go for your weekly ice cream cone, his favorite outing!
MEANINGFUL MOMENTS when you see grandkids connect with compassion and love with their granddaddy (even though he cannot remember who they are)
FUNNY MOMENTS when everyone can laugh… We laughed the time we visited him when my son had long hair and a hat on. As I introduced the kids to him (“It’s your grandson Chris, he came to say hello”), he stopped and said laughing,“Oh, I thought he was a girl!”or the time I had flown from Dallas to New York to visit and said “I was in the area and just dropped in for a visit!”
EXCITING MOMENTS when we watched baseball on TV together, when he cheered over and over for the homeruns his team, the Boston Red Sox, kept hitting. Actually it was the replay each time, but, for Dad, total excitement!
SPECIAL MOMENTS when his face would light up from across the room at the sight of a familiar face. When you realize that deep inside the HEART remembers even when the mind does not.
SPECIAL AHHA MOMENTS when you realize that your DAD is not the person you once knew, BUT this new guy is kindof FUN. It is possible to embrace meaningful moments.
For Dad, he called them “FLASHES.” He would say that the thoughts came like a flash bulb going off and then they were gone.
In the 12 years he struggled with the challenges of Alzheimer’s Disease, he was an active participant in LIFE for most of them.
- He continued his love of walking and won a medal in the CT Senior Olympics
- He continued his lifetime pattern of helping others by folding church programs
- He continued to demonstrate his social graces by picking up trash, pushing in chairs, and trying to hold doors open.
- He continued to love his country and the flag that represented so much to him. Even when he could no longer get the words out, he was always pointing to the flags.
As the disease progressed the activity that became his most cherished was walking along the beach and searching for the perfect white rock. His collection grew and grew and grew 1-2-3 containers.
BUT what we noticed was what the white rocks meant to him. They gave him peace and strength and meaning.
He proudly showed off his white rocks. Our job was to enable and validate his efforts.
Our job as caregivers and professionals is to find or create the opportunity for each person to be successful, to connect with meaning to objects and people in the environment and to use their strengths. You are the catalyst to improve quality of life in the face of Alzheimer’s Disease.
It’s not easy to let go of habitual patterns of relationship, to accept that your Dad or other loved one cannot “do”what they once did. Letting go of “what was”and embracing “what is”will provide connection and meaning to both the person with dementia and those that care for them.