Contemplation

A tremendous toll is exacted on family in the early phase of dementia and Alzheimer’s disease as we move from denial to acceptance. We live in fear of what will happen next, but in greater fear of hearing the diagnosis of this dreaded disease. A disease that will steal memories, relationships and ultimately life.

Because of the strength and courage of advocates who now speak “out loud” about what it’s like to live with Alzheimer’s and dementia, caregiving can evolve. Although there will be difficult times, by giving voice to those living with the disease, more effective coping strategies can result.

Your perspective, as advocates, helps caregivers to comprehend that diagnosis is not death. Your strength gives license to live life more fully and to appreciate what we have for however long we have it. Before it’s gone.

 

               Thank you for leading the way down this dimly lit corridor,

                                 through a most valuable life lesson.

 

 

Is what I just experienced normal?

I don’t know anymore.

Because my definition of normal

Keeps changing.

 

My mother and I were always very close. We became buddies rather than the average parent and child as I grew. As the youngest in our family, I was still living at home when my father’s work took him out of town frequently.

 

We relied on each other, my mother and I. We had each other’s back. Maybe that’s why this unique relationship developed. Or maybe she just couldn’t handle the burden of adult responsibility and parenting. Responsibility was a task I naturally gravitated toward even at a young age.

 

No matter, I push aside thoughts that swirl about the evolution of complex family dynamics.

 

So when mom comes to live with us after dad dies, she and I fall into familiar patterns. I pay her bills, balance her checkbook and manage her investments exactly as my father did throughout their co-dependent married life. And we spend magical afternoons shopping, sipping champagne and dining as if that’s how the rest of the world wiles away its free time.

 

Only through contemplation does it seem unusual. I play a part in my mother’s aging process; a part likely masking her early decline into dementia. I’m the codependent enabler, now.

 

Possessing an imaginative nature my mother sees shapes in clouds, makes words from license plate numbers and dissects the meaning of her dreams over morning coffee. Through the years I manage to acknowledge, yet never fully participate, in these rituals with her. But at some point our lives change and her developing behaviors become too difficult to ignore.

 

After sharing a glimpse into the elephants and giraffes she sees hanging in the trees outside, Tom positions her in the window and through the open glass asks “Here, Mom?” pointing to the undulating landscape. “Yes, but you’re hurting them. Stop!” she tensely replies. Being ‘the rational guy’ in search of a solution, my husband responds, “but they’re only leaves and branches Mom,” shaking the shrubs as my mother pleads with him.

 

I walk hand and hand with her past the living room windows; I can almost see those animals coming to life in the branches as if wanting to be discovered. Then I hear the sharp snap of reality yanking me back from the delusion. Apparently it’s a sound becoming fainter and more distant for my mother.

 

Is what I just experienced normal?

I don’t know anymore.

Because my definition of normal

Keeps changing.

  

Sitting with a family friend for a morning visit, mom joins us. Instead of sharing her dream analysis from the night before, as she enters the room my mother pulls her sweatshirt up over her head to reveal her bare breasts and calmly says, “I have oatmeal every morning with my coffee.” She pulls herself back together while crossing the dining room floor, pours her coffee and sits down at the table.

 

Modesty has always been my mother’s middle name. This was abnormal by anyone’s standard, but we sit together as if nothing happened. A sideward glance and silent judgment cuts through the air like a sharp knife.

 

Is what I just experienced normal?

I don’t know anymore.

Because my definition of normal

Keeps changing.

  

It’s the night of the winged monkeys prying their way into her bedroom windows that finally rocks my perpetual denial. “Get out, get out, get out,” she screams in the middle of the night. The blinds are askew and she’s sitting half in the bed, half on the floor with blood coming from her lower lip and just above her left eyebrow. Her beautiful green eyes are vacant and her 80 year-old screams remind me of a helpless child.

 

At the Memory Center her Geriatric Psychiatrist asks, “Vera, can you accept what you see in your delusions? Can you tolerate them in your life?” With the strong will I know my mother possesses when pushed too hard, she responds, “Could you doctor, could you really accept them?” He shares a story about a man who sees rabbits while watching the news each day and punctuates the story by saying, “He knows the rabbits aren’t real, but he can’t make those damned bunnies go away, Vera.” And so we find ourselves at the stage of dementia delusion and hallucinations.

 

This was too early in her decline for such intense delusions and hallucinations according to all the literature I read. If only I better understood my mother’s point of view, the experience through her eyes. Although still a difficult journey, maybe I could have been a more effective caregiver, to both of us.

 

Lisa B. Capp is a writer, activist and dementia caregiving survivor. She serves on the Alzheimer’s Association Leadership Board for the Desert Southwest, is a member of the Alzheimer’s Impact Movement (AIM) and AlzAuthors.
As a High Tech Change Consultant, Lisa worked with leaders of global business, governments and non-profit organizations around the globe. Her passion now is focused on empowering dementia caregivers to survive their journey with grace.  
Join Lisa in a conversation about grace on Twitter @lisabcapp and LinkedIn at LisaBCapp.