Alzheimer’s Caregiving: A Labor of Love

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This is a story of love, family, a promise and commitment.

Three generations of the Crane family have acted as caregivers. Alzheimer’s disease took Terri Littlejohn’s grandmother. Eight siblings of her grandmother – out of a total of 13 kids – had Alzheimer’s. Caring for family “it’s like learned behavior,” Littlejohn said. “My mother took care of Aunt Lucy and her mother.”

“Who did you take care of?” she asked her mother, Mrs. Dorothy Crane. “My mother,” Mrs. Crane said clearly.

Dorothy Crane, 86, is the matriarch of the Crane family. Stately and poised, she lives  with Alzheimer’s disease. She’s got a village surrounding her and providing care. She’s got a daughter, son-in-law, two granddaughters, two grandsons-in-laws and some great-grandchildren doing whatever is needed 24/7 to make sure she is cared for, loved and living in a stable environment. Mrs. Crane lives with her daughter.

It hasn’t always been easy. The stress of being responsible for her mother and living up to her own expectations can at times feel unbearable, Littlejohn said. “I want to be the best caregiver, I want to be the best daughter, I want to be the best,” Littlejohn said. “When I am not, does that mean that is wrong when you forget to do something?”

In the time that she has cared for her mother, Terri Littlejohn has had two heart attacks. She doesn’t want this to be one of those cases where the caregiver dies before the person she is taking care of. “I have talked to my daughters about that,” Littlejohn said.

November is National Family Caregivers Month. In the Miami Valley, 90,000 family and friends care for 30,000 people living with Alzheimer’s disease.

Most people living with Alzheimer’s are not in a nursing facility, and 83 percent of Alzheimer’s care at home is provided by family members, friends or other unpaid caregivers.

Caring for someone with Alzheimer’s or other dementias can be demanding. The level of assistance provided by caregivers of people with Alzheimer’s tends to be extensive, compared with caregivers of other older adults. For example, dementia caregivers are more likely to assist with activities like bathing or showering, handling incontinence, and giving medication. In addition, caregiving responsibilities often persist for many years – even decades.

Studies indicate that people age 65 and older survive an average of four to eight years after a diagnosis of Alzheimer’s. Yet some live as long as 20 years with the disease, which is a fatal brain disease that can not be prevented, slowed or cured.

In December,1998, Mrs. Crane had a stroke during a surgical procedure. Ever since then, Littlejohn said, she has needed a caregiver. “My father, I took care of him too. Since I was in the eighth grade, it’s been off and on. He had heart problems. My father died in ’02.”

As a result of her stroke, Mrs. Crane’s memory started to slowly fade away. “My mom is like a stairstep,” Littlejohn said. “It kind of levels out. Some years she remembers some things, sometimes she does not.”

“I do basically everything,” Littlejohn said. “Self-care, bathing, I have to pick out her clothes because if not, she will wear the same clothes. She does not cook, and I help with her medication.”

“Being a caregiver, I have struggles with it,” Littlejohn said. “I’ve always had to take care of her. Should I be mad? Should I be angry? Should I be happy? It’s a struggle at times,” she said. “You’ve got to do it out of love so that you won’t be mad, angry or sad. If you do it out of love, it gets easier, but it’s still hard.”

Littlejohn sees a caregiver therapist to help her process how she handles caring for her mom. She is beginning to attend an Alzheimer’s Association caregiver support group just to hear from others in her position.

Before Littlejohn’s father died, he talked to his family about caring for his wife.

“Before my grandfather passed away,” said Littlejohn’s daughter, Tonda Thomas-Bates, “he said to take care of our granny and when he passed away she said to me and Tierra ‘you’ll not going to leave me are you?’ We said no. Would we do that? No. It was a promise to always take care of her. She always took care of us, so it was not a question that we were going to take care of her.”

There are times when there are glimpses of clarity, that surprise even Littlejohn.

terri-littlejohn-and-her-family-care-for-her-mother-dorothy-crane.jpgWith her family talking around her and about her, Mrs. Crane matter-a-factly put her earring, that had fallen, back in place. “She always has to have her earrings, her red lipstick, “ Thomas-Bates said. “Even through all of her illnesses, she remembers to put her lipstick on and her earrings.”

Tierra Thomas, Littlejohn’s other daughter, said grandmother had a little bit more spark when she was younger. “How old do you feel?” Thomas asked her. Mrs. Crane replied, “35.” Littlejohn told her that she was 86 years old, “Am I?” she said with a sheepish grin.

For the Crane/Littlejohn family, family is everything as they honor the promise made over 15 years ago.

“The Alzheimer’s and dementia are not who your loved one is. It’s a condition that they have, it is not who they are,” Thomas said. “But that does not make me love her any less. It just makes me more aware and more empathetic toward her.”

If you need help, call the Alzheimer’s Association’s 24/7 Helpline at 800-272-3900.

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