Guest Post | Lisa's Caregiving Story
Zyprexa fails my mother after months of experiencing “normal” on the antipsychotic. Prescribed for her dementia, it produced delusions and hallucinations as she moved through a drug regimen recommended by the best medical minds available to us. Aricept and Namenda were introduced for her cognitive decline, Zyprexa, Risperdal, Abilify and Clozaril for her delusions, not to forget the many others which were prescribed for her depression. Now all that remains effective is Ativan for anxiety.
On her “lucid” days we discuss her love life. After 46 years of marriage to my father Jack before his death, dementia allows my mother one more love affair with David. David, albeit imaginary, is concocted through her illness, likely an amalgam of male doctors and caregivers who were kind to her. No matter, she’s deeply smitten. However, on occasion, my father’s afterlife and David’s imagined life collide in my mother’s demented world.
“Lisa, help me. I need to see David right away. His father’s buying me an expensive car before the wedding and I’m so nervous. Are you happy for me?” she asks.
By this point in her illness, I accept my mother’s perspective on life. I no longer question, argue or cajole in response to her remarks. “Of course Mom, I imagine it’ll be a grand wedding. Have you picked out your dress yet?” I ask while preparing the walker if it’s a good day or the wheelchair if it’s not.
Around town, we drive to my 83-year old mother’s melodic narrative, “Look, Lisa there’s the house David’s parents are buying for us. It’s quite lovely inside” pointing to a rundown structure at odds with her description.
Or, “Can we invite David to the condo for dinner this weekend, I know how much he enjoys the company of both you and Tom. Maybe we should give him a key”.
And, “If we drop by the hospital I know we’ll be able to see David. It’d be nice to surprise him, don’t you think?”
David is a doctor, I guess.
I’m filled with conflict. Her joy about David is palpable and I should be happy for her. But I’m oddly defensive over my long-gone Dad and suspicious of this imaginary man courting my mother. Some days I find myself fully absorbed into her dementia filled world.
At the condo and throughout our dinner preparations, she tells me all about the elaborate plans for their honeymoon. All the time she’s smiling like a naïve schoolgirl, an unfamiliar look. But we press on setting an extra place for David and delaying dinner for his arrival; when he fails to show I suggest we eat. But my mother’s response levels me, “Lisa, your father’s in trouble. David’s gone to help him and won’t be coming to dinner”.
The Dr. David delusion lasts for a year; he’s the most vivid and pervasive of her late stage delusions. Through this delusion, my mother imagines my dead father homeless and in need of money, injured and in need of medical care. Finally, my father reclaims his role as my mother’s greatest love. His last act leaves David to exist no more.
These delusions prove far more endearing than the terror filled fantasies that marked her dementia onset. The world has softened since knives, razors and winged monkeys came after her, often landing her in the emergency room with cuts, bruises and scars we couldn’t always explain.
For my mother, love indeed conquered fear.
When people hear the tale of my dementia caregiving journey they often suggest my mother suffered from Lewy-Body dementia, the same form of dementia that stole Robin Williams’ humour and ultimately his life. My mother however suffered initially from vascular dementia and ultimately passed from the whole-body deterioration that comes with classic Alzheimer’s disease.
I’m one of you. I did my best to survive the dementia caregiving journey with my mother. It proved the most challenging experience of my life. What have I learned? Until we remove stigma, associated with the dementias and begin to share our stories out loud, the caregiving journey will remain an isolating one. The story of our journey has driven me to connect with others who have taken or are currently on the path with a loved one. I hope my writing may be some small support to other caregivers who find themselves caught in the midst of this despicable illness.
if you struggle alone
you may drown.