Of all my personal experiences with Alzheimer’s disease, the memory of one is especially powerful. Sometimes gifts arrive to us when least expected if we open our hearts to possibilities…

I believe mom’s early emotional responses were shaped by her environment and cultural upbringing. Raised during the depression, she often spoke about missed opportunities and leaving school to help support her family. Her stories were not coloured with resentment or pessimism because she accepted with stoic resolve what had to be done. This practical acceptance of life’s imbalances was a true reflection of her personality.

Mom was never overtly physically affectionate and that was how it was growing up. There were no unpredictable hugs or “I love yous” just because. It wasn’t that she didn’t love us, but rather she did not allow the emotions to bubble through to the surface, and we felt that this was how it must be for everyone.

As her care needs grew, she was admitted to a long-term care home for her safety and well-being. Per my visit ritual, when it was time to leave, I would hug and kiss her goodbye and before reaching the door would say, “I love you. “
She would smile or close her eyes because the power of sleep would be an ever-vigilant companion. There was no expectation for “I love you” in return and I accepted this without question.
Then one day, it happened. She looked into my eyes and responded quite clearly, “I love you too dear.”

I gazed at her intently and repeated emphatically, “I need to leave now, and I love you.”
And there it was, that smile again, the twinkling. It was almost as if she somehow knew that the disease had erased the formal barrier that caused her to hold emotions deep below the surface where instincts defined her.

Those words that had escaped me my entire life were spoken. The barriers that prevented us from being real and in the moment were lifted by the shadow of her illness, freeing her “social filter” to express her true feelings.

And then, the next time I went to visit, she had forgotten me. I was merely a wisp of smoke in a fire: present, but quickly dissipating into the darkness. Although I deeply wanted her to return to me, I knew in my heart that this would not be so. And yet, in spite of both our our losses, dementia had given me the greatest gift of all: a confirmation that I was loved.

I believe on that day we both had an epiphany. Mom was released from the chains of reservation and was able to say the words that were there but always unspoken. And I found the mom that I knew really, really, loved me.

I do believe in the moments of darkness there is light, and throughout this journey there are many opportunities for light, we just need to see beyond the disease…

Epilogue

As you continue on your journey, the best wisdom I can offer is that there is no perfection when caring for a loved one living with dementia. We are all humans, and influenced by many factors like our relationships, emotions, environmental etc. Here are some rules to live by that might help:
• Be empowered: Contact your local Alzheimer Society for program resources and support group information.
• Be informed: Enroll in the care partner education series at the Alzheimer Society to learn about the disease and to meet other families.
• Be willing to negotiate chores: Could you use a meal delivery service, frozen foods for reheating rather than cooking every day? What other daily activities could you modify, share, or eliminate?
• Be willing to reach out: The Community Care Access Centre (CCAC) is a government resource that helps with navigation of the health-care system and explains about services covered by your Ontario Health card (OHIP).
• Be willing to accept help: Think about offers of assistance and make choices based on facts, not feelings of guilt, or fears of inadequacy.
• Be willing to take care of yourself: Are you taking care of your own health and wellness? What steps can you take to address your needs?
• Be accepting that no one is perfect: Throughout this journey I realized that there is no perfect caregiver. I spent a great deal of time analyzing my actions because we tend to focus on our own perceived shortcomings. Then, I reflected on mom’s philosophy and realized that in “her eyes” I found my lost perfection. That was all that mattered.

Lost Perfection

The piano keys would simply not obey
The wayward stumbling of childhood fingers,
Melodic apparitions floating into empty space,
But what you heard was harmonious intonations.

With smile transfixed, I realize
Perfection rests within your eyes.

The fumbled misstep foiled the race,
Adolescent limbs tumbled, in graceless foray,
My rightful place, now the victor conquered,
But what you saw was triumphant wins in effort.

With smile transfixed, I realize
Perfection rests within your eyes.

Teenage doubts eroding fragile confidence
To pursue my dreams, long waiting in the distance,
Self-Judgmental yardsticks measuring outcomes,
But what you saw was positive persistence.

With smile transfixed, I realize
Perfection rests within your eyes.

In Adulthood, I could never quite determine,
If rose colored glasses were aging misconceptions,
Or did you sense I lacked insightful vision
That failure measures only self-perception?

With smile transfixed, I realize
Perfection rests within your eyes.

And when the time arose that you required,
A beacon guide to share the dusty road of life,
I tried with great resolve, but lacked precision,
But what you saw was flawless execution.

With smile transfixed, I realize
Perfection rests within your eyes.

And now I miss the physical essence of being
A spiritual destiny fulfilled, time transcendent,
And when I despair that for you I was imperfect,
My heart is given solace by your memory.

With smile transfixed I realize
My perfection rests within your eyes.

Ann Chartier has been a practicing Registered Nurse, for almost 4 decades. As the founder of Elderpilot.com she advocates for people living with dementia and assists Seniors navigating LTC and Retirement Homes.