The head nurse was right.
Of course, she was right.
Direct and unflappable, her words were clear.
My Mother had dementia.
But the head nurse was the only one who used that word. Even a year later, her doctors hedged their evaluation:
“She has significant cognitive difficulties…” wrote the neurologist.
“The results…are consistent with early Alzheimer’s disease…” wrote the internist (emphasis mine).
I understood their delicate choice of words; I realized there couldn’t be a definitive diagnosis.
But it took me years to learn what those careful words meant. And even after our “decade of dementia,” I am not sure I understood it at all.
Dementia/Alzheimer’s is a myriad of conditions; a multitude of behaviors; each with an unpredictable path; all of it painful.
But more than just painful; dementia has the power to shame.
And that shame is compounded by the underlying sense that if she just tried hard enough, she could think of the word; tell the story; find the road;
Recognize her daughter.
I believe Dementia is the New Scarlet Letter.
I say this because a friend’s father is forgetful and confused. To her, the signs are unmistakable.
But her sister claims he is faking; he just wants attention.
I say this because a friend’s mother has Alzheimer’s; once vibrant and popular, no one comes to see her anymore.
Suzanne is alone. Is it just too painful to witness her decline?
I say this because when I first said dementia, people said I was disrespectful. Friends would visit my Mother for twenty minutes and declare: she is fine!
For years I heard the chorus: she is fine.
I say this because I had tremendous difficulty finding resources to guide me through the labyrinth of physical, legal, social, moral, and financial issues. I received a lot of flawed advice.
For years I doubted my every decision.
And I say this because up until the moment of my Mother’s death, I never completely grasped a simple truth:
I could not ease her pain.
For years I confronted my mother’s dementia as if it were one more challenge. I came from a world where if you studied hard; you did well in school. You worked hard; you got a promotion. You picked the right partner; you got love.
Nothing prepared me for this.
I share these experiences with no small amount of trepidation. I am not a doctor, nurse or social worker. I do not have encyclopedic knowledge or answers to profound dilemmas.
But I do have stories: what we witnessed; what helped; what I would do again; a lot I would do differently.
I hope through sharing these stories, A Swift Current can be the source of ideas and even refuge. I welcome you to share your stories with me.
And together we will say the word
And not be ashamed.