By Caryn Sullivan | St. Paul Pioneer Press | TeamWomen Member and Guest Columnist
As seen in the St. Paul Pioneer Press on March 10, 2019.
It’s been a painful slide into the sunset for Patty Sagert and her family as the man who was a successful entrepreneur and family patriarch has slowly left them, another victim of Alzheimer’s.
Alzheimer’s is the most common form of dementia, a group of symptoms that impair one’s capacity to remember and think and to exercise judgment or reason. As the disease progresses, the ability to express oneself or control one’s behavior declines, rendering the maintenance of relationships increasingly problematic.
Lucidity is fluid. Even the closest family members are intermittently recognized and forgotten.
It’s heartbreaking to witness. It requires patience and stamina for loved ones, for we can live a long time with the incurable disease.
The youngest of three children, Sagert, a resident of Roseville, reached a reluctant reconciliation with a disease to which she was no stranger. While two of her grandparents succumbed to it, observing it in her 20s was a wholly different experience than managing it as an adult child.
The worst day of her life, she says, was luring her father into his first memory-care facility under the auspices of a white lie. Ten years after his diagnosis, tears flow as she recalls that day.
But that was just the beginning. Her caregiving duties intensified when her father experienced a stroke and multiplied when her mother was diagnosed with ovarian cancer.
We all deal with challenges differently. Some of us run toward them, others run away, yet others become paralyzed or immobilized. That’s certainly true for families dealing with Alzheimer’s.
For some family members, it’s just too painful to remain engaged.
Some assume there is no point in visiting the patient, for he doesn’t recognize them anyway.
Others commit themselves to doing whatever it takes to care for their loved one.
Sagert faced her father’s challenges and needs head-on, driven by her innate optimism, faith, and a determination to do everything she could to ensure he is afforded the care and respect he deserves.
Yet, their visits are unpredictable. “It’s never easy to put the code into the door, not knowing what you are going to walk into. You never know. But if you don’t go, what’s worse?”
She recognizes that adversity arrives with a choice to become embittered or to find a way to become better.
For her, living the better choice has involved being present wherever she is, whatever the circumstances. “Wherever my feet are I’m just going to do the best with what I have,” she says.
It’s surely not easy.
An app on her phone connects to security cameras she installed strategically in her father’s private room to ensure he would receive help if he fell, as he often does.
With the technology their ally, both she and her sister-in-law maintain a constant state of vigilance, though there is a fine line between ensuring a vulnerable adult’s safety and respecting his privacy and dignity.
Because individuals can live with Alzheimer’s for many years, it saps energy and causes prolonged sadness and grief for loved ones, as well as social isolation for both patients and caregivers.
There’s a term for what Sagert and many others are experiencing.
According to Minnesota author and Ph.D. Pauline Boss, “ambiguous loss” refers to a state in which one finds herself living with one who is gone but not gone, physically present but psychologically absent. While there is a distinct sense of loss, unlike a death there is no closure while the disease persists.
In “Loving Someone Who Has Dementia: How to Find Hope While Coping With Stress and Grief,” Boss explains that while we can’t control dementia we can control how we manage and perceive it.
Embracing, rather than combatting the ambiguity, allows one to live with it, she explains. Even that small measure of control can make an untenable situation tolerable.
Understanding that she is experiencing ambiguous loss has been helpful for Sagert and helped her to find purpose in the midst of grief.
Though the world as she knew it has contracted under the weight of caregiving duties, it’s also grown through connections she’s forged with kindred spirits online and through a grassroots organization called Elder Voice Family Advocates.
She’s testified twice before the Minnesota Legislature about safety and security issues for the elderly and the value of installing cameras in their residences.
She’s alarmed by the dearth of information available to consumers who are investigating memory-care options. She’s advocating for more transparency and accountability in an industry that is not subject to the same regulations as the nursing home industry.
Her goal is to make a difference. Though she may not help her dad, she wants to help the next generation of families like hers by pushing for information about staffing ratios and complaints lodged against and addressed by memory-care facilities.
When they are informed, she can help others to make residential and caregiving decisions based on facts, not emotions.
With the sun setting for Sagert’s father, the family has added an additional layer of care. Hospice will make his last months or days as comfortable as possible, be it through medication, therapies or an additional set of eyes.
Given the family history of Alzheimer’s, Sagert’s been ruminating over which would be worse: to not remember or not be remembered. Though I can’t predict whether Alzheimer’s will visit her, I predict the loving daughter, servant leader, and advocate who chose the better way will not be forgotten.
Caryn Sullivan inspires others to find the “better” way in and out of life’s experiences through her columns in the St. Paul Pioneer Press, her award-winning memoir, “Bitter or Better: Grappling With Life on the Op-Ed Page,” and her inspirational keynotes. To learn more of her work, visit carynmsullivan.com.