Full Circle – The Cycle Of Death and Life
Full Circle –
The Cycle Of Death and Life
The loss of a brilliant woman who lived life beautifully, even when dementia knocked on her door over 30 years ago. Mom I so miss you and thank you for being in my 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.
Joy Is Possible
Uncontrollable laughter is a good thing!
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
Enjoy Life
Lori La Bey, founder of Alzheimer’s Speaks
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Beautifully written, Lori. Yes, this horrific disease has taught us much. Rose
Thank you Rose. You know the the story all too well.
Lori
Lori, this is so beautiful and eloquent. How wonderful that you were able to find the positives in your mom’s journey and that she is still touching you today as you shift roles to being the grandma. Thanks for sharing and give lots of kisses to that new babe!
Thank you Monica. The shifting of roles is very fun with the new baby that is for sure.
Lori
Lori, how beautifully said and what a wonderful tribute to your mom. And I’ve said this before, what a blessing your mom was to you and to the world. Thank you for sharing your story with the world…what an encouragement to know joy can be found in living with dementia.
Thank you Beth. Your friendship and support means so much.
Lori
great post Lori, I shared it on my Facebook page 🙂
Thank you Susan
Very well written Lori. Hugs to you, Danielle and your beautiful granddaughters.
Thanks Jan I hope all is well with you and your family.
Lori
Thank you for sharing Lori. I hope that together we can help today’s daughters, sons, wives, and husbands find happiness during and after caregiving. What a tough but rewarding walk you have taken which will inspire and improve the lives of many because of your willingness to help and share.
HI Mike
Thank you for your thoughts. I apologize, I thought I replied to this before… Yes together we will make a difference in others lives as well as our own. Keep up the great the work.
Lori
I learn every day how to cope with this terrible illness that circles the world. Thanks for telling me to enjoy the gift of a smile, laughter, a song, a short memory, a kiss, a feeling, privilege of cleaning her, a warmth beyond words, and my nights of watching her breath. My advocacy for a miracle and the brilliance of my grandson a PhD in computational chemistry who is spending his life with a great team in Toronto working on AD. He has been given a large grant from a London group and continues his research with so many dead ends but not giving up. This plague is beyond counting and must be eradicated for the future but those suffering are like your mom either in heaven or on that final journey.
This is a comment from heart as a husband who has been married to my English Rose for 71 years and should be printed entirely
Thank you Norman
Lori
Thank you Norman for writing. It’s so critical we share our stories with one another. So many lessons can be shared and learned when we just take the time.
Lori
Thank you for sharing Lori . . You have no idea how much comfort your knowledge has provided me over the years. I first met you 30 years ago, at a home you were selling in Oakdale (I lived next door & was curious) .I have been privileged to learn so much from you over the years. We only have one dear parent left . . she is 93. My dad and grandmother had dementia. 30 years ago, I was young and able to assist my grandmother during undergraduate collage in St. Cloud . . 15 years ago I assisted my Dad (for 8 years – 38 miles away one direction and daily) . . busy years with giving birth to 2 children. . . He went to Heaven on 911 . . . I was / still am a tired caregiver. . . Thank you for all your support over the years! Sincerely, Jill
Thank you Jill. I am so glad you find comfort here at Alzheimer’s Speaks and our work.
Lori
Thank you Jill… I do remember you! Funny what connects us in our life. Please let me know if there is anything I can do to assist you on your journey with dementia and caregiving.
Lori
Lori, so beautiful. I have read many things over the years about the various dementias from families perspective. I too lost my mother just over a year ago (Nov 2013) I have worked with dementia for 30 years when my mother came to live with us 10+ years before her death I learned the “other side” . I sat down and wrote a book about doing the care and now teach family and people looking for work as PCWs how to do the care. I work very closely with the Alzheimer’s Assoc on many projects. I find the one thing folks do not want to talk about is the feelings of relief after a death. People that actually do the care often feel relieved. Is it because of the anticipatory grief ? I don’t know but it is a feeling that I explore with families.
Thanks for writing Cynthia