Holding On To Her Identity: Losing My Wife To Alzheimer's
by Sammie MarsalliPublish: Sep 28, 2024 Series: Preventing Her Shutdown From Alzheimer'sAdvice & How ToBiographies & MemoirsGeneral Nonfiction
Book Overview
One of the greatest fears of Alzheimer’s home caregivers is that their loved one will lose complete recognition of them.
This was the one thing I was so terrified of when my wife was diagnosed with Alzheimer’s. She could forget who she is and lose all sense of self. If that happened, she would no longer recognize me, her three children, or any member of her family. This was my horror because many of us assumed this was a common occurrence with Alzheimer's without any information. I was scared to death.
My obsession was to hold on to her identity, and to protect it in any way I could. Every minute of every day, I began tireless interaction with her as her 24/7 home caregiver. I was aware that she might forget who she was at any moment.
Even the neurologists were unable to predict when or if this event would occur. There was no road map to follow, as every victim responds differently to their behavior changes with Alzheimer’s. I only had memories of the movies we have all seen where the Alzheimer’s victim is staring at a blank space and doesn’t know who or where they are. My whole life, my being, and my passion became dedicated to stopping that from happening.
Professional help and guidance from support groups is always welcomed, but they cannot be available in real time when radical behavior changes occur. Only home caregivers can respond when they happen.
I was alone in protecting her ability to know who she was in our family. What I did might not work for another Alzheimer’s caregiver for a loved one. “What worked for me may not work for you.” We are each on our own in learning how to interact with behavior changes and to protect their self-identity because there are no two victims with behavioral changes alike. They can vary and are subject to the particular stage of Alzheimer's they might be in.
Discover the unique and personal strategies an Alzheimer’s caregiver's husband, invented to hold on to her identity. None of these activities were medically advised because medical advice is not readily available for caregivers when major behavioral changes happen at the moment. Only home caregivers can respond.
Readers will learn how an Alzheimer’s home caregiver created activities and therapies to make sure his wife knew who she was and who each family member was.
What were the everyday activities that encouraged interaction and confirmed self-identity?
How was he able to interact with his wife, even though she was unable to speak?
How was she able to reach out to him?
Witness the mitigation of intermittent “blank stare” moments.
Find out what events led to her identity being preserved?
“Holding On To Her Identity Losing My Wife To Alzheimer's” is an inside look at how an Alzheimer’s caregiver’s experiences helped him become his wife’s protector and defender of her self-identity while racing against the Alzheimer’s clock.
My greatest fear was my wife would forget who she was and unable to identify her children, me and close family members. My passion and only purpose in life was to hold on to and protect her self-identity.
Advice & How ToBiographies & MemoirsGeneral Nonfiction
BIOGRAPHY As an author, I am certainly not an expert or an authority on Alzheimer's. I am definitely not a professional author and didn't pretend to write an authoritative masterpiece. I never pretended to be any one of those things. I am simply an ordinary “John Doe” 24/7 Alzheimer’s caregiver, husband, sharing my experiences, reactions, and inventing therapies while caring for my wife at home with Alzheimer's. We have been married 44 years, 3 kids now grown up, a great dog most of those years, a typical family on our own, trying to hold on to my wife and avoid her shutdown.
Hospice home care for a loved one with Alzheimer's begins on the very first day it is diagnosed. This home care without any outside help is extremely difficult, but usually, there is no other option. Outside professional help is always welcome, but cannot respond “in real time” when radical behavioral changes occur. Only home caregivers can do it at that very moment. No one has the exact key as to how to respond to these changes, as there are no two profile behavioral changes alike in the same stage of the disease.
There isn't a set therapy, as each stage of Alzheimer's varies in its characteristics. Only your experiences can be your guide. “What works for me may not work for you.”
As a result, I began to invent my own home therapies. Family home caregivers find themselves alone, inventing their own home care to mitigate behavioral changes and needs.
I realize there are other Alzheimer’s home caregivers like me, “amateur”, trying to take care of a loved one with Alzheimer's. Like everyone, I was learning the hard way by trial and error to mitigate tremendous changes in behavior with my wife when they were happening.
Hopefully, my books become a shortcut for Alzheimer’s caregivers, to avoid some of the desperation, frustration, and sadness on their tortuous caregiving journey.