Caretaker Memoir Chronicles Milton Family's Journey Through Dementia
Milton residents John and Kathi Bourke discuss "Her Final Year: A Care-Giving Memoir" a book that includes the parallel stories of Kathi's mother's battle with Alzheimer's and the experience of another family in Missouri.
Often times, caretakers of dementia patients feel isolated and alone. In reality, a very similar situation may be playing out with complete strangers in an unknown place.
Thus is the case with Her Final Year: A Care-Giving Memoir, a book released last summer that follows the story of two men, caring for their wives’ mothers as their health gradually declined.
The book takes place on two different sides of the country, but the parallels are deep.
Here in Milton, John Bourke served as 38-year Milton resident Georgia Smith’s primary caretaker. John, his wife Kathi Bourke and Georgia all lived together in the Milton home the mother and daughter shared most of Kathi’s life.
During Georgia’s last four years, John, a technology consultant, worked primarily from the home while Kathi continued her career as a commercial baker.
Around the same time, a similar story was taking place in Columbia, Missouri with Jim Downey, his wife Martha John Jr. and her mother, Martha John Sr.
As the title suggests, the book follows a calendar-like flow, condensing a few years into one. The chapters tackle specific topic areas. Throughout the months in the book are four distinct voices, those of John, Kathi, Jim and Martha Jr. The final third of the book begins a new year—the year after the death of Georgia and Martha Sr.—and include just the voices of the male caretakers.
John moved in with his new wife and mother-in-law after their wedding on April 27, 2003. According to Kathi, Georgia’s mental capacity took a dip while the couple was dating, around 2001, but she had seen symptoms back into the 1990s.
“I think my mom was starting showing signs of [dementia] before John even came on the scene,” Kathi said.
Following the wedding, an appointment with a doctor from her past ended with an Alzheimer’s diagnosis for Georgia, who was active at St. Agatha’s Parish and worked as a Tax Preparer in Braintree for 15 years.
John was able to rearrange his schedule to be with Georgia during tough tasks, like cooking, but still met clients out of the house. During the earlier stages of the disease, Georgia put herself in charge of caring for the two dogs.
Throughout the Georgia’s illness, Kathi kept working her physically demanding 9 to 10 hour days, up to six days per week. When John eventually stopped working, she bore the entire financial burden for the family.
“It made more sense to have John do [the caretaking],” said Kathi.
After some time, John recalls becoming less comfortable leaving Georgia alone for long stretches. John eventually cut back on his consulting; electing to bring Georgia with him to the offices of clients he knew would understand the situation.
John recalled he and Georgia getting dressed in matching business attire for business meetings.
“He’d scour her closet to find something to match him,” said Kathi, remembering a matching tweed blazer combination the pair would wear.
John and Georgia would typically get lunch after a meeting and go visit Kathi at work.
“They would embarrass me,” Kathi said with a laugh.
The adventures back into the corporate world were exciting for Georgia, and helped build a good relationship between Kathi’s mother and husband.
“Her mom and I established a relationship where she trusted me,” said John.
As the months, of both the book and real life, moved on, the caretaking became even more time consuming, to the point John stopped working.
Throughout the passage of time as a caretaker, John was writing online. He’d write about politics, his passion for science fiction, Georgia and the dogs and the challenges of his role as a caretaker.
“You need to have some form of release,” John said of his blogging. At the same time, here in Milton, Kathi was writing her thoughts in a journal.
In Columbia, Missouri, Jim was running his book-binding business out of his home and taking care of his wife’s mother. Like his Milton counterpart, Jim was also active online, penning entries about politics, science fiction and caring for a loved one.
John said he and Jim found each other’s blogs around the same time.
The journeys in Massachusetts and Missouri began around the same time and coincidentally ended within three months of one another with Georgia’s passing in December 2007 and Martha Sr. losing her battle to Alzheimer’s in February of 2008.
According to John, experts often say it takes about a year for a caregiver to recover from the death of a loved one. This concept prompted the final third of the book titled, His First Year: A Journey of Recovery.
“You get a lot of guilt as a caretaker,” said John.
Separately, John and Jim considered gathering blog posts, emails and journal entries for a book. They eventually decided collaboration would work best. They met just once in person and the idea of unfolding the stories chronologically developed naturally.
“We were finishing each other’s thoughts with the book,” John said.
Kathi said her portions of the book include real world checklists to help caretakers and families deal with realities of a family member with dementia.
“We had our fumbles, but this is how we did it,” said Kathi
John said the book wasn’t created for financial gain, but as a resource. “We really think people are benefiting from it,” John said.
Beginning July 14, the one-year anniversary of the book’s release, Her Final Year: A Care-Giving Memoir is available for free download on Amazon.com.
A Kindle is not a requirement to download the free ebook. A free Kindle reader is available here.
Excerpts of the book and additional resources are available at www.herfinalyear.com.
There are also two copies of Her Final Year at the Milton Public Library.