Full Circle –
The Cycle Of Death and Life
One Year Later
I never expected my life would be so impacted and drastically change due to illness, any illness. I never really gave it thought to be honest. I was too busy living my own life. Those kinds of things always happen to “others.”
Then one day, none of us really know which day, dementia knocked on my beautiful mother’s door. As always my mother open the door and greeted the stranger with grace. Not knowing, not judging, just interested in what was before her. And soon as she watched and listened closely, she figured out what this stranger had brought into her life. Initially, she did not share her findings with anyone, not my dad.
As time wore on, she could no longer hide or be in denial of the guest who came knocking. Things were changing and impacting her life. They were impacting others lives too. Independence as she knew it was gone. She couldn’t remember things. She had difficulty completing everyday routines. Driving stopped as she was terrified of getting lost or hurting someone. She withdrew socially, fearful of misspeaking.
Others started to notice the changes too. Many friends and even family reacted by pulling away not understanding or not interested in learning about why the changes were occurring. As a one of her primary care partners, I must also say I was not good in the beginning with being honest with others as to her diagnosis or symptoms. I think this is common as care partners are so worried about people rejecting them for being ill. We disguise our nondisclosure by saying we are “protecting them” or “helping them“ maintain their dignity.
Bottom Line –
No One Should Feel Less Of A Person Because They Are Ill
In a perfect world, no one should feel less of a person because they become ill, but as we all know there is no perfect world. I found by hiding the disease it created a false world. One which frustrated all of us. There was no true understanding. Authenticity was lost. There could be no honest compassion as others were not allowed in.
Like in any relationship when trust is gone, the relationship changes. We may not know why but things shift and usually that means breaking apart or falling away from one another.
Through the lack of understanding and the loss of compassion I saw, it changed my life. This horrible disease ignited a passion in me to make life better for not only my mother but any one, anywhere in the world who wanted to believe better way of living with dementia was possible. This was the start of a beautiful journey for both my mother and I down the road of dementia. As mom always taught me from childhood …
Always Be Prepared
And so I tried my very best to be prepared for just about anything, anytime. To have alternative plans, to be spontaneous and be open to new ways.
Living with dementia gave all of these teachings a new depth and meaning. Each wrapped in unconditional love and acceptance. It was no longer about being prepared to control things as much as it was to be prepared to find joy and peace and to learn to create it in any environment at any time, no matter how crazy and out of control things may seem.
The Shift In The Tornado
During this 30 year journey with mom and dementia there was a shift in the tornado. Instead of feeling like I was being sucked up and into a turbulent and destructive wind storm, I started feeling and seeing the amazing gifts of life I had been missing prior to her illness. The velocity of the storm rewired me. I saw things through new eyes. I heard things with new ears. I felt things on a level I didn’t know was possible.
Gifts Appeared Before Me On A Regular Basis
The gift of simplicity. The gift of stillness. The gift of a smile or giggle. The gift of a simple glance that melted my heart. The gift of deeper connection and consciousness. The gift of unconditional love which unfolded in many levels which I didn’t even know existed. Life became peaceful and filling. Judgement and guilt left the building and it was amazing what this shift did to my soul. How it affected everything I did even though sometimes in a very subtle fashion.
One year after mom’s death I was shocked to not still feel a great sense of deep loss, but to my surprise more often then not I am just filled with gratitude of having the privileged to live life with her, disease and all.
Now don’t get me wrong, I still have aching pains of loss which can overcome me at the strangest times and crocodile tears can stream down my face and my stomach turn to knots, but they have dissipated greatly. Now these times that once made my soul feel as it were drowning have been replaced with overwhelming sense of gratitude, peace and love.
The Cycle Of Death and Life
During this year of loss my daughter Danielle gave birth to her beautiful daughter Charlotte RuthAnn. (Charlotte’s middle name came from my mother’s middle name “Ruth” and mine “Ann”) So touched by the gift of this precious little grandchild who we all feel strongly mom picked out just for us. So many loving things have come into my life during this past year. I would foolish not to recognize and embrace them. They help fill my heart where emptiness once stood.
The Legacy Of Life
My daughter Danielle and Steve gave me this lovely bracelet which had rings for my mother and father who have passed, and my grandchildren Charlotte and Mickilah. The circle of life continues and brilliance of life lessons is passed on.
My Wish For You
May you all find joy in our lives no matter what comes before you. May the life lessons you have learned you pass onto others as gifts. May you find peace in your soul and feel a true sense of belonging and engaging to all who come into your your life. I thank you each for your support and love in my life and my work.
My Mom And I Raise a Glass And Toast You And All Life Has To Offer
Lori La Bey, founder of Alzheimer’s Speaks