Carol's Alzheimer's Journey
A Beautiful Woman, Inside and Out
When my Aunt Carol died in 2011 in the late stages of Alzheimer's, my memories of her were fond ones. She'd been my staunch supporter and encourager for as long as I could remember. Carol Clark became a presence in my life when I was a toddler, when she and Uncle Don were courting. Her gentle voice and kindly manner are among my earliest memories. Carol loved me and I sensed that instinctively, as children often do.
Every time she laughed or smiled, deep dimples formed at both sides of her mouth. Those dimples fascinated me. I wanted to touch them with my little fingers and feel them deepen when she smiled. Carol's dimples were as much a part of her as her kindness.
Uncle Don was one of the heroes in my early years and Carol soon became his female complement. She introduced me to classical music, taught by example what it meant to be a lady, and brightened my young world with humor and love. She carried kindness and compassion like an aura around her. No wonder Uncle Don loved her from the moment they met! She'd always been beautiful inside and out, and even the ravages of Alzheimer's couldn't change the person she was.
Carol often expressed the belief that she and Don lead a charmed life, and that "somebody up there" watched over them. Because of that conviction, her life path was one of harmony and generosity. She and Don lived by the words of that old song: "You gotta accentuate the positive, eliminate the negative, latch on to the affirmative and don't mess with Mr. In Between."
I'm sharing her story here because it's one of hope and joy.
All photos are from family archives.
Dancing -- a Shared Joy
Weren't they just the cutest couple? I love this picture of Carol and Don, taken at a dance. A great part of their courtship in the 1940s consisted of dancing. Carol lived in Topeka KS then and Don was a student at Kansas State University in Manhattan. He'd enlisted in the Air Force and was waiting for his military assignment when this picture was taken. Whenever time, finances, and transportation allowed, Don and Carol danced to Big Band Music at the Meadowlands Ballroom in Topeka.
They made a great team, the Fred Astaire and Ginger Rogers of their generation. Dancing was a joy they shared for decades and Don made sure that tradition didn't die when Carol had Alzheimer's. They laughed and danced together every day to Big Band music, even on the day Carol died. I can't imagine a happier conclusion to Carol's life than sharing that one last dance with her sweetheart.
BIG BAND MUSIC - Get your exercise & have fun!!
Find all the greatest Big Band tunes here.
Married at Last!!
After World War 2, Don returned to his K-State studies and focused on marrying Carol. They'd been preparing for this day since Don was a senior in high school and Carol a junior. For several years, they'd shared their thoughts, feelings, and philosophies through letters and long talks. Soon all their hopes and dreams would become reality, together, side by side.
She planned for them to marry the same day Don graduated college, and when Carol put her mind to anything you could count on the outcome. While Don kept his nose to the college grindstone, Carol worked and saved money to start their new life as husband and wife. She created a trousseau, filled her hope chest with niceties for their first apartment, and dreamed of the day she'd become Mrs. Don Ford.
Two soulmates married in June of 1948. Following the wedding reception, they raced from Topeka to Manhattan so Don could graduate. Then, after a two-day honeymoon in Kansas City, they settled into an apartment near campus and began a marriage that lasted more than sixty years. Carol said it best: "We're gonna be one hell of a team!!"
Time passes, life changes
Don got his first two degrees at K-State then moved to Penn State to work towards his PhD. The mountains of central Pennsylvania were quite a change from the plains of Kansas but the young family thrived in their new home. First Don became a full professor, then a Dean, and through it all they worked as a team to accomplish their goals. As their strong bond grew as a couple, they added four sons to their family.
A Happy Valley Family
Happy Valley is the nickname given to State College PA by its inhabitants. Don and Carol loved their life in Happy Valley. Both had struggled and pinched pennies for years while Don worked towards his PhD. Carol typed theses to earn extra money while Don enhanced their income through every opportunity that presented itself. By the time this family picture was taken, their penny pinching days were over.
After years of working in the Division of Counseling, Don was appointed Dean of the new College of Human Development at Penn State. Carol was proud, of course, but also pleased that Don's new position allowed the freedom to pursue some of her own interests. She'd always been creative, and dreamed of learning how to paint visions of Mother Nature -- the mountains, streams, forests and flowers she loved. And traveling had always been a dream of Carol's. Now it would be possible for Don to make his sweetheart's dreams of visiting exotic climes a reality.
The picture is Don and Carol surrounded by their sons: Russell behind Don; twins -- Doug behind Carol and Martin kneeling in front of her; youngest Cameron on Carol's lap.
The years passed, dispensing joys and sorrows. Carol planned two new homes and established her own craft shop where she sold beautiful creations and oil paintings to support many charities around State College.
Carol's mother and aunt died of Alzheimer's, a worry Carol contemplated as she aged. Their sons married and added grandchildren to the family. Don made sure that all of Carol's travel dreams came true. And always, they faced life as a well-matched team.
Their joy at dancing together still radiated from them at the turn of the 21st century as it did in the 1940s. The troubling symptoms of early Alzheimer's had begun to appear but nothing could dampen Carol's spirits when she had a chance to dress up and dance the New Year in with Don.
In Don and Carol's world, Alzheimer's was just another problem they had to face together. They would choose a medication regimen, plan for unexpected developments, and live each day as they always had -- as a team. Don was determined that, no matter what, Carol's life would be as pleasant and meaningful as possible.
She loved to dance so they would continue to dance together whenever possible.
She loved music so listening to all her favorite music would be part of every day.
She loved old movies, especially musicals, so watching movies would be a frequent pleasure.
She loved to reminisce so looking through old picture albums and rereading old letters together became a daily activity.
Everything and everyone Carol loved became a part of her daily life with Alzheimer's.
A Person, Not a Patient
Don believed that humans should be treated like whole persons, not impaired patients.
He knew that hidden inside Carol were the shy little girl who loved music and dance, the radiant young woman who played piano and loved old movies, the talented painter of Mother Nature's beauty, the devoted daughter, wife, mother, grandmother and friend.
He had to devise a way to reprise those memories.
Alzheimer's had been gradually progressing for seven years when Don received a great honor in September 2007 and Penn State dedicated The Donald H. Ford Building. Carol had always been a gracious hostess and not even Alzheimer's would change that. Her speech had become garbled and she tired easily, but she played the proud hostess like a champ that day. She greeted attendees with her familiar, radiant smile, shook hands, gave and received hugs, and beamed her pride throughout a long, tiring day.
The picture here was taken that day in front of the Donald H. Ford Building. Just look at Carol's face, with her signature dimples deepened by a happy smile. Her joy is almost palpable.
The Final Separation
Don and Carol had been separated during World War 2 and vowed to never be apart that long again.
August 2011 became their final separation. That day had been like any other as they followed their normal routine. Don and Carol laughed and danced to Big Band music before lunch.
After lunch was Carol's nap time but on this day she didn't wake up. She passed peacefully while sleeping. Her warming presence and happy smiles had gone beyond her sweetheart's reach.
After Carol's death, Don wanted to share her history and the Alzheimer's care model used to bring joy and pleasure to her life. How to fit those pieces together was a puzzle that had no immediate answers.
To pass time, he reread old letters he and Carol had exchanged and sorted through boxes stored in closets throughout the house. He found a focus for Carol's story in cards and letters, and from a source he hadn't expected. Throughout their life together, they had solved all problems and set all goals by talking things out until they reached a satisfactory solution. One night, Don spoke his frustration into the dark, asking Carol's opinion about his plan to write a book that might help others dealing with physical and mental impairments. He asked if she thought writing a book about their experience would be a good idea. Her answer came as clear as if she were still in the bed next to him: "You bet your boots, Buster!!"
Carol's journey towards Alzheimer's began the day she was born, buried deep in the DNA of her maternal line. Every joy, sorrow, struggle, accomplishment and gift that made Carol the person she was also defined her daily life with Alzheimer's. Don used his knowledge of Carol's history to create a model of elder care that would add moments of joy and meaning to her life. He believes that simply warehousing a person and keeping them safe is not enough. This book is written in an effort to share his elder care guidelines and philosophy while telling Carol's story.
A LINK TO CAROL'S JOURNEY WEBSITE - Information, advice, questions & answers
Here, Carol's husband and others provide information about elder care and Alzheimer's in a blog format. Readers can share questions or concerns and receive answers or advice.
- Carol's Journey
The purpose of Carol's website is to provide hope, help, answers, or advice for those needing information about elder care, Alzheimer's, and other related topics.
Alzheimer's is the 6th leading cause of death in the U.S.
More than five million people in the U.S. have Alzheimer's.
In 2012, 15.4 million caregivers provided more than 17.5 billion hours of unpaid care valued at $216 billion.
In 2013, Alzheimer's will cost the nation $203 billion. This number is expected to rise to $1.2 trillion by 2050.