“Daughters care for their mothers. It is the great cycle of life.”
That’s what Dr. Barbara Ella Milton Jr. of Secaucus writes in her new book, describing her thoughts in late 2015 when she realized her mother was descending into dementia and could no longer care for herself.
“Heeding the Caregiver Call: The Story of Barbara Ella Milton Sr. and Alzheimer’s Disease” (Xlibris) is much more, though, than the recounting of the age-old, often heroic and heart-wrenching role reversal.
Milton Jr. -- a retired clinical social worker who wrote about Hudson County teens overcoming obstacles in the “Our Pride and Joy’' column in The Jersey Journal -- tells a powerful story in her book of coming to deeply love and enjoy the mother she previously resented and hardly knew. She gives affirmation to caregivers at every level and includes practical information that will be helpful to anyone on the caregiving journey.
And, at her mother’s urging early in the book-writing process, she also highlights that despite a general scarcity of diverse depictions in movies or online, Alzheimer’s affects African-American lesbians like Milton Sr., too.
“It’s universal and it’s a real crisis,’' Milton Jr. said in an interview this week. “It’s only getting worse.”
Born in poverty in Camden at the tail end of World War II and having helped raise her nine siblings, Milton Sr. was just shy of her 15th birthday when she gave birth to her only child in May 1959, Milton Jr. writes.
“I do not know the circumstances surrounding my conception,” Milton Jr. writes. “I have tried many times to get that story from my mother, but she never told me. I deduced from her silence that the facts would not tell a happy story.”
Things being different for a teen mother back then, the state put newborn Barbara into her grandmother’s care and it would be years before she and her mother even lived together. Missing the all-important bonding time between mother and child set the stage for a fraught and distant relationship.
Milton Jr. left Camden when she started college in 1977 and barely looked back. Her mother, meanwhile, built her life there, owning her own home, excelling at bowling and living independently through her Teamsters pension and social security after retiring.
All the blanks in each other’s lives started to fill in for both mother and daughter when Milton Sr.’s Alzheimer’s was diagnosed when she was just 71 and the independence she’d worked so hard for started to unravel.
“Mom knew it was getting harder,’' Milton Jr. writes, describing something all-too-familiar to those who have witnessed it in their own families. “You would see the defeat and surrender in her eyes. She hated asking for help. … She wanted to be the author of her story.”
Although living at the time in Jersey City – 90-plus miles and some two hours away from her mother – Milton Jr. heeded the caregiver call, as she says, and began a learn-as-you-go crash course in eldercare. She was also battling bladder and kidney cancer, for which she continues treatment today.
Barbara Milton, right, with her wife, Kay Osborn, has written a book about caring for her mother when her mother had Alzheimer's. (Reena Rose Sibayan | The Jersey Journal)
Milton Jr. describes how her wife, Kay Osborn, and her mother’s large family and circle of friends, along with home health aides and surveillance cameras, helped her keep her mother engaged and safe in her own home as long as possible.
When Milton Sr.’s condition degraded to the point that her safety at home was no longer feasible, Milton Jr. moved her to a nursing home in Bergen County. She died there in January 2019 at age 74.
“I want you to know that I am gonna tell your story,” Milton Jr. writes, recounting what she told her mother as she held her hand after she passed. “I promise. You will help other Black daughters and mothers. Thank you for being my mother. Thank you for trusting me. I love you, Mommy.”
Reaction to her book has been overwhelming, Milton Jr. said.
“I am just blown away,” she said. “I hear the most amazing stories.”
Readers have told her they’ve found the book helpful as they navigate a similar journey, that they were moved emotionally by its story and that it’s helped them on their own “grief journeys,’' she said.
Her hope is that it will bring attention to a dreadful disease, will help caregivers find resources and know they need to care for themselves first, and will inspire people to plan ahead.
“Have those hard conversations,’' she said. “They’re important.”
She also hopes it will motivate people to spend quality time with their seniors while they’re able to do things and enjoy them.
“Try as best you can not to have regrets,’' she said. “Seize the day.”
"Heeding the Caregiver Call: The Story of Barbara Ella Milton Sr." by Dr. Barbara Ella Milton Jr. of Secaucus
MORE ADVOCACY NEEDED
Among the themes woven throughout “Heeding the Caregiver Call” is the need for more aid for families affected by Alzheimer’s disease.
While many resources exist, it’s still practically impossible, for example, for most families to keep a loved one home as the disease progresses.
“No child in America should be forced to go into poverty in order to care for their parent,’' Milton Jr. writes. “But it happens every single day here. It’s a shameful condition of our nation.”
More funding is needed to help people stay in their homes longer and to better pay home health aides and nursing home caregivers, she writes.
She notes that as the population ages, more and more Americans will be affected by the disease or another dementia and that the word needs to get out that conditions like diabetes and hypertension are preventable and often linked to Alzheimer’s.
Legislation and reimbursements for more direct services can help, she said, saying the nation needs to figure out a way to reckon with the realities of the disease.
Milton Jr. is donating a portion of the proceeds from the sale of her book to the Hudson County-based advocacy, education and service organization the Act Now Foundation.
“Heeding the Caregiver Call” ($35.99 hardcover; $19.99 paperback; $3.99 e-book) is available through Milton’s website, heedingthecaregivercall.com, and at Word Bookstore in Jersey City and Brooklyn (wordbookstores.com).
Margaret Schmidt may be reached at mschmidt@jjournal.com.
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