Caregivers in the Home

Grace noticed her mother, Jacinta, behaving oddly after living alone.  She agreed to pick up her son at the airport but did not show up and did answer her cell phone. Grace found her at home distressed, sitting in her car, phone in hand. She could not recall where she was going.   Another caregiving journey began for Grace, a resourceful Christian leader; her husband, Dave, a videographer; and their two children.  

Grace said, “This was exponentially harder than when my father was ill (from cancer). I became more accepting when I said it's not about me." It was almost like dying to yourself for the sake of another.  They converted their garage into a bedroom and added a front porch so Jacinta could safely sit and wave to neighbors who waved back. 

On the journey they learned that entertaining volunteers was not needed nor was asking for help.  Neighbors offered to take their children to extracurricular activities. Others brought meals. 

When Jacinta returned home after surgery for a hip fracture, Grace learned the dementia had advanced.  She put her career on hold, “My mind was always on my mother.” Concern for Jacinta interrupted household activities and concern plucked at their frayed emotions.  “I just wanted to finish one chore,” Grace said.  

Dave said, “Until you go through something like this, you can’t know what it’s like. It makes me want to care more for others. Life is short and we are not promised about tomorrow. Makes the little things that happen not as big as they seem.” After hospitalized himself, he stated, “We need to also care for ourselves. Without our health, we have nothing.” 

In their youth sisters Grace and Jennifer danced to pop tunes with their mother. Jacinta now sat and swayed in rhythm while her daughters gracefully danced.  Jacinta’s eyes would brighten, the highlight of her day. 

Jacinta beautifully honored her family with a simile and her special “OK” sign, conveying comfort, love, hope and joy.

John was a formidable military aviator.  Robin had a vivid sense of humor and worked in fashion modeling. They met at a bar having arrived with different people. John wore a Harley-Davidson sweatshirt. She loved the shirt and him in it.  He gave the shirt to her. On his return from deployment they got married, launching a blended family with five children and creating the home of their dreams complete with a white picket fence.

The couple spoke candidly about living with Alzheimer’s disease, attributed to multiple concussions Robin suffered at an earlier age. Portents of Alzheimer’s pinched Robin. She complained she could not recall TV news tickers.  Limited side vision caused her to park her car at odd angles in the garage. Tooling along the wrong way on a highway put an end to driving. 

Robin resisted accepting help and felt terrible when an older neighbor had proposed he drive her to the gym. John appealed to her desire to help others saying: “He offered because he wanted to help, and therefore, you’re helping him.”

The neighbor later explained he used to be depressed. “I loved my days, driving her to the gym.” 

“What a cool blessing that was,” John said. “You made a difference in someone’s life.”

John and Robin endorsed the power prayer: “Our faith keeps us strong…and laughter keeps us young,” and the gym fueled their energy.   Crafting words carefully with a smile, John looked at Robin with humility and pride and said: 

“You make a better man out of me. That’s a huge accomplishment!” Robin gave hm a victory smile, “I need to write that down!” They laughed.

Alzheimer’s disease was no laughing matter, but laughter liberated them, and prayer elevated them.  They lived each day for each other with a light touch and welcoming heart.

Rosie had her eye set on Glenn in junior high. “I took wood shop,” she said, laughing, “just to be near him.” But Glenn did not notice her. “We were in church choirs. Nothing there."  But when they attended the same college, she received a Christmas card. “I found out later he had sent cards to four different girls (laughing). The first one that sent it back, that's who he decided to date.” 

Over their forty-year marriage, raising two children and welcoming three grandchildren, they lived in reciprocal harmony. 

Glenn was soft-spoken, devoted to his family, jocular, and diligent at work. He loved to bowl and taught Rosie to play. 

The hand tremors and the slow walking of Parkinson’s disease came in increments.  Glenn’s voice weakened, and memory faded. Rosie took up feeding Glenn. It hurt her heart to see him lose independence, requiring help with ordinary things.  She positioned him in the car and drove him to doctor appointments.  She assisted him to get out of bed, bathe and dress. She proudly displayed her ability to lift him and steady him to walk. A fall would be calamitous. She exclaimed: “He’s 6’2”, and I’m 5’1.” When seated, he looked shy and hesitant. When they connected, they reveled in the warmth and wonder of their relationship. 

Rosie ever gregarious was blessed with a contagious laugh. Her upbeat demeanor and cordiality belied a serious, creative and boundless dedication to meet the needs of her husband, the love of her life.  She never saw herself as a caregiver. “I just did what I needed to do.” Their daughters encouraged Rosie to get help: "I was like, I’m OK. I’m OK.” Supported by her family she did get help.  Rosie even went to a movie by herself: “It was awesome!”  

Timothy and his brother, Wesley, saw their father, Sims (Pop) as strong and dependable. They loved his offbeat sense of humor. Pop had worked thirty years as a New York City firefighter. Early in his career, a floor collapsed under him. His fireman’s helmet saved his life. 

Pop was living with Alzheimer’s Disease and myasthenia gravis, a chronic illness causing muscle weakness. Timothy and Wesley wanted to keep him at home. To do this, Timothy retired early from a rewarding career in law enforcement. 

Timothy began his caregiving journey in his twenties by assisting his grandparents. He conveyed a tranquil presence. “I was the youngest and single, and wanted to help.” Wesley exemplified an upbeat entrepreneur.  When he entered a room, the conversation grew lively. The brothers felt privileged to be their father’s caregivers. 

Barbara, Wesley's wife, had a novel sense of humor sprinkled with wisdom.  She cooked appetizing meals for Pop. 

“We all agreed,” Wesley said. “Pop’s care came first.” They learned from each other and from all who came to help. “We pay attention and take good notes,” Wesley said. 

Timothy saw the value of Pop being in their care, “He recognizes us.”  Timothy and Wesley guaranteed Pop had a constant companion, one of them. 

Wesley shared an unexpected quirk in his caregiving experience.  “Sometimes I can be with him all day, and he says nothing. But when Barbara arrives, she gets a hello and a high five.” 

Pop asked, “What are you talking about?” Timothy answered, “We are talking about taking care of you because you took care of us.” He added smiling, “You take care of yourself. We just give you a little bit of assistance.”