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May 20, 2015

Losing to Dementia: One Woman’s Spiritual Journey.

Laurie Panella 1

Call this a Public Service Announcement.

It’s about the value, dignity and merit held by every human being. It’s about Dementia. It’s about Alzheimer’s disease. It’s about family and lack of family.

Six years ago my mother required a residential facility for her own safety due to Alzheimer’s. For practical reasons our family decided that she would be housed in a home near me. I was blind to what the future held for me and naïve to the journey my spirit was embarking on.

I began to mourn the loss of my mother and accept this person she was becoming as a new member of our family. I cried and ached as I realized I would never have a conversation with my real mother again. Her blue eyes still sparkled like they always had, however, and she still had the feistiness that she always did.

As she settled in at her new home, I began talking to the staff about the other patients. I discovered some of the patients had spouses who visited every day, and others had families who never visited.

I remembered my grandfather, who visited my grandmother at her Alzheimer’s home every day until she died, although she was bed-ridden and in a vegetative state for her final year. He truly did not know what else to do with himself after 50 years of marriage, but to spend the day with her. He spent the day talking to staff and others at the home. He would pass out cigarettes to the patients and drink coffee, but in some way he was with her.

One day I ran into a pastor doing rounds at the home. He would visit monthly to see if anyone wished to pray with him. He told me the man he had just seen, sees him, Pastor Dan, more than he sees his own family. Pastor Dan explained it was difficult for them to see him this way, and that they wished to remember him the way he had been before dementia. They believed he didn’t know the difference if they visit or not in his state of mind.

I could relate to this because in truth, my mother may not know if I come to visit or not; science knows little about Alzheimer’s. Whether or not she knows I am there is a small part of why I visit her; I choose to be part of her life and accept her for who she has become. I visit her because she is my mom and I love her.

Visiting her has enhanced my being and taught me about a primitive grace, sacrifice and parental tolerance. I have gained strength and a new found love that was borne from a previously unknown place deep inside my soul. Mom still knows me. When I arrive, she sees me in a crowded room and smiles. She hasn’t said my name in over a year, but she answers when I call her Mom.

I go because she made sacrifices for me when I was growing up that I am not even aware of. I go because it makes my spirit feel brighter. And when she finally takes her last breath, I will not say, “I wish I had done more, visited more….”

Beyond that, I enjoy our visits. She makes me laugh. Although 90 percent of what she says makes little sense, she is still feisty, and she can still make sentences connect in a cohesive conversation once in a while. She still tells me to behave and shakes her fist at me with mischievous eyes. Her blue eyes still sparkle with recognition sometimes. There are characteristics of Mom inside that still come out. I am blessed to experience them. Mom is blessed to have family who come to visit her. Six years ago I hoped my mom would never be abandoned like those other beautiful human beings were, and I can say humbly today that she has not.

Some visits are easier than others. During my last visit Mom spent most of the time preening to her stuffed bears, as I steadily wiped my tears away behind her back. They were tears of joy that she was happy and exhilaration that her sentences were so coherent today. I often cry through my visits or after, but tears heal the soul, and I welcome them.

This has been the journey I didn’t anticipate. It has been self-nurturing, grief-ridden, and gentle in the making. I have a lack of understanding and fear of this disease, just like the families of the other patients. Unlike the families who stopped visiting their loved ones, I have chosen the frightful path of stumbling blindfolded to the other side. On the other side I found courage awaiting me along with maternal nourishment. This maternal nourishment was there, not for my mother to nurture me with, but for me to bestow on my mother.

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Relephant:

Improv Works as Well with People Who Have Alzheimer’s as It Does With Children.

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Author: Laurie Panella

Editor: Travis May

Photo: Flickr/Adriane Dizon

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