It was her makeup application that first made me think something was not right. Foundation that was a few millimeters short of her hairline, and a few more from her jaw.
Odd, I thought.
In hindsight, I recognize the irony—misapplied camouflage attempting to conceal a slow deterioration. A failed cover-up.
What gradually followed for my mother were lost words and mild disorientation.
As with addiction, when reaching out to someone with dementia one can only prod, and suggest, and hope. Often, however, there must be a bottoming out—a physical or psychological cellar, a darkness through which the ill cannot see without guidance and advocacy.
My mother fell into that cellar this past April.
The woman who had, after her own mother’s passing, assumed the role of family matriarch, was being crippled by the mysterious demons of dementia and delirium.
The transition was gradual: at first forgetfulness and disorientation, a solemn diagnosis of Alzheimer’s, and ultimately a terrifying psychosis triggered by the unforgiving combination of a urinary tract infection and slow cognitive decline.
Two weeks earlier she was misplacing keys and struggling to comprehend Visa statements. Now, her apartment betrayed a scene of violence: a chair strewn in the hall, food and Corningware on the floor, and stories of strangers creeping up the back stairs where no stairs existed. To her uninitiated children, it was a psychological supernova; a terrifying introduction to the enigmatic and sometimes violent world of delirium.
Emergency Room, restraints, antibiotics, examinations, time.
Seven months later, the urgency is struggling to be replaced with acceptance, balanced with fatigue; the responsibility of a child towards their parent is wrestling with the responsibility of a father towards his children, and that of a grown adult granting himself the gift of self-care.
ACCEPTING THE LOSS OF THE PERSON WHO WAS
In my experience, most adults have complicated histories with their parents, which inevitably colour any present day interactions. There are incidents which are both unforgiven and unforgotten. Our parents try to compensate for their own regrets by regularly offering course corrections on our own parenting voyage. Nearly every adult child / parent relationship is a full plate drizzled with appreciation and overbearance; with affection and exasperation.
Dementia unplugs the pool of personal history. All that was is drained away, one day at a time, and is replaced by a new iteration of a being who is not quite whole.
Reconciling one’s self with that, means learning to find an escape route through which you can permit yourself to be free of that history. It becomes a frank exercise in acceptance and objectivity: those arguments unresolved, and those wounds unhealed, can no longer be allowed to demand your energy, or your time, or your impatience.
Your parent, in almost every definable fashion, has become your child.
It suddenly became necessary for me to re-centre my thought process. I found it often useful to imagine my mother a stranger. How would I care for the elderly mother of a close friend? Which version of myself would I want to present to a septuagenarian in crisis on a street corner?
Those answers were simple: patience, kindness, and advocacy.
A relationship with acceptance, and absolutely no sense of a shared history.
Those touchstones of my relationship with my mother forty-five years in the making—my parents’ divorce and its consequences; personalities in conflict; disapproval and debate–must be buried in a grave alongside what used to be the healthy psychological profile of my aging parent.
Alzheimer’s and dementia: the ultimate arbitrators of any relationship.
DAD, WHAT’S HAPPENING TO BUBBY?
As a child, I have become responsible for my mother’s well-being. As a parent, I am constantly standing on a teeter totter’s fulcrum, trying to credit my children’s intelligence by keeping them informed, while balancing that against the preservation of their memory of their grandmother who used to be well enough to host them for sleepovers and lead them on subway trips to see the Nutcracker.
Protectionism was my first instinct: euphemize recent stories of screaming, physical restraints, and terrifying hallucinations by replacing them with, “Bubby’s okay, and she sends her love.”
Much of that language trots alongside the timeline of the disease. During the first weeks, diagnoses are uncertain, and prognoses are hopeful. Time, though, slowly absorbs equivocation. Now, in early December, it is likely my mother is as improved as she will be. Throughout these months of treatment, bevies of conversations with physicians, nurses, mental health professionals, with my sister, my wife, and my mother’s lifelong friends, have helped me become comfortable with my own understanding of this disease. The result is my being more able, and more comfortable, being truthful and straightforward with my children.
They are old enough to understand that if I am not bringing them to visit their bubby, it is probably best they are not exposed to what lies on the far side of that hospital door.
My answers to their questions have finally become frank. We speak of depression, and dementia, and Alzheimer’s. At a psychologist’s request, we send videos of the grandchildren. I explain to my children that bubby becomes agitated and sad, and seeing them, even though a tablet’s screen, brings her great comfort.
It is one of the cruelest dimensions of this type of psychological disintegration: there is just enough residual intelligence and understanding for my mother to recognize the grandchildren, and to ask after them, and to be comforted by their image. However, enough logic and dimension has been stripped away that every day brings with it bursts of fear and anger, and outbursts of tears and confusion.
“How is Bubby?”
She’s not well. She gets very sad. But she misses you. She loves hearing stories about you, and seeing pictures of you.
And she probably won’t get better.
GUILT VS SELF-CARE
Summers, for me, are a period of lighter workloads and more flexible hours. If there was good fortune to be found in what was transpiring with my mother, it is that the crisis was born in late April.
This resulted in my sister (a school teacher with similar flexibility during the summer months) and I were in a temporal position of being able to become full-time advocates during an emergent situation.
Each of us was on-call either daily or every second day at the hospital, asking questions of the medical staff or being bedside attempting to digest a prognosis. We were able to be present during her UTI diagnosis and treatment, and then throughout the decision-making and healing process of a double craniotomy. We were there to provide recognition and comfort when she was moved for a short period into a residence, and then researched on her behalf and advocated for her readmittance to the hospital when her cognitive and behavioral condition became once again unstable.
Summer’s end brought with it the fall of our flexibility, and the onset of not only real life (school for my sister and my children, and my more demanding workload), but also with it the complicated logistics of my mother no longer being at a residence down the block from me, but rather in a hospital which would demand extra hours of weekly commuting were I to attempt to maintain my previous visitation schedule.
I was also beginning to understand the toll of caregivers’ fatigue. I was short-tempered with my family, not sleeping properly and was slinking back to fast food and potato chips as dopamine delivery systems while I was stuck in rush hour traffic. (It became a ritual that I meet my sister outside her house prior to hospital visits with a McFlurry for each of us. What she never knew is that, when I was alone, I upsized my small to a medium. Here lies the confession, sis.)
Therapy helped. Although guilt is the world’s most sensitive hair-trigger. Every call from the hospital elicits a churning of regret. My ability to overcome and assuage my guilt is directly related to the nature of the conversation.
The calls I have learned to most easily recover from are those from the nursing staff informing me my mother has fallen, but is unharmed (a several times weekly occurrence), or the necessity of hiring someone to care for her toenails, or the connection or disconnection of the television.
Conversely, guilt perverts itself into shame and sorrow when my mother calls asking if I have any room in my house, even for just a day or so, so she can live with her family while she obtains a new credit card and shops for a condo. The pleas are tear-filled. I can hear my mother fighting to sound as rational as possible, as though she were aware that her psychological health was tenuous, and under constant evaluation.
(Even in relaying these details, my guilt coerces me into justifying that, during those same conversations, she will confide in me that there are men chasing her, that she had been out for a drive earlier that day, and that she has been caring for her cat. All this while not realizing she has not left the hospital for months.)
Many people who visit a counselor for their marriage or other relationships are told: you cannot love others unless you learn to love yourself.
That seemed to me the mantra of ethereal hipsterism until a few months ago.
Now, I accept it as a truism.
My mother is in a place where she is being cared for. We are fortunate that, despite the nurse’s salary she earned throughout her career, she was a careful and steadfast financial planner and we are thankfully able to provide companions for her.
I am learning to give myself permission to be my own first priority. Who do I want to be? How do I want to feel? What kind of energy do I want to reserve for my own family?
Finding the answers to these questions is far easier that implementing their solutions.
My mother’s friends and more distant relatives, who are satellites to her predicament, grasp for news and explanations and understanding. Helplessness can be excruciating. I have learned to answer only when it is convenient for me, and only truthfully. I have accepted that, if my mother’s condition has worsened, or improved, or stabilized, it is not because of what I have not done. It is because this is the nature of this disease.
No amount of my attention can scrape away plaques and tangles, or frighten away hallucinations, or defeat depression.
Her bedside will welcome me when I am available, and will wait silently during my absence. All the while, dementia will creep in through the cracks, whether I am posted guard or not.
The gifts of a long-term illness such as Alzheimer’s are as few as the memories the disease leaves in its wake. However, its lessons can be ironically abundant and fruitful. Discovering those lessons, and drawing meaning from them, is the slog.
I relentlessly try to remind myself that each day offers rewards in some form. A hug from my children, my wife’s humor showing up in a text, driving in the middle lane while absorbing an hour of my favourite podcast.
Forever in the shadow of those moments lurks the awareness of the life my mother is “living,” a grey room in a geriatric hospital. Sadness. Fear. Loneliness. Confusion. The cruelty of a disease which strips away not only mental souvenirs, but with them wedges of personality and understanding.
Since beginning to speak aloud (and write) of these circumstances, I have met many peers and friends who have been affected by dementia in those people dear to them. Many who suffer from Alzheimer’s are left docile and accepting, even from within their cognitive blindness. Others, like my mother, are treated more cruelly. The remaining aspects of their personality are darker embers, sediments not deglazed.
Why? What determines one’s experience with dementia? Genetics? Personality profiles? Environment?
The only certainty seems to be all the things which will forever be uncertain. And acceptance seems to be the only state which allows us, the satellites to the disease, to continue to function from a place of patience, and gratitude for ourselves and for our own families.
It is a mental exercise of daily personal challenge and learning. Should I ever become afflicted by Alzheimer’s intellectual invasion, I hope that—at the very least—I can remember a life lived without regret.