Marianne Sciucco: Author, Teacher, Dreamer: AlzAuthors: Celia Koudele and The Little Book for Alzheimer’s Caregivers

Wednesday, May 17, 2017

AlzAuthors: Celia Koudele and The Little Book for Alzheimer’s Caregivers

By Celia Koudele

This book was my legacy for the next generation, putting in writing as much as I could about my experience helping caregivers of dementia patients.

My mother, grandmother and aunt all died from a type of Dementia, mostly Alzheimer’s.

I became my mother’s caregiver after my Dad died of cancer at 75. When my Mom had Neuropathy, the doctor at the Mayo’ Clinic did a memory test and concluded she too would probably get Alzheimer’s. Even with our family history, we went through that period of denial.

I also went to work at the local Alzheimer’s Association, thinking I would learn more and be there to hear about a cure first-hand before I too possibly developed the disease. I was a Help Line Specialist and learned from over 65 callers a month about the many journeys of Alzheimer’s. My job was to listen, comfort, educate, and try to give them ideas to make their daily life better.

I AM PASSIONATE ABOUT HELPING FAMILIES AFFECTED BY ALZHEIMER’S.

Fast forward several years ago and I realized I had lots of ideas from my own experience of caregiving my mom and helping others. These solutions, experiences, and ideas would die with me if I didn’t share them with others. My goal in writing this book was to help other Alzheimer’s families learn from my experiences and ideas to make their life with Alzheimer’s easier in any way. People don’t know these behaviors can happen, what to do once they have a diagnosis, or how to talk and interact with people with dementia. Ignorance is not bliss. It can happen to anyone.

I knew what it feels like to be exhausted, afraid, and sad because the Mother I knew was slipping away, and I didn’t have the energy or knowledge to make it better. This Alzheimer’s Caregivers book is short and simple. When I began the journey of caregiving, “The 36 Hour Day” was a popular resource, but it was a large book, and by now I was caregiving for my mom and also my mother-in-law, so there was little time to read all of that large book! My book is purposefully “Little” because caregivers are exhausted, busy, and need an answer to their problem quickly. It covers the emotions, daily living problems, and the big decisions about placing them in a facility. It is for all of you pretending they “aren’t that bad” while quality time slips away. Denial hurts everyone. There are ideas to cope with anger, bathing, and wandering. Always remember no one is promised forever, we all get one day at a time.

I often share my books with doctors, people in stores, friends, strangers, and anyone struggling on this journey. No one should have to fight this disease alone with no help or support. I also often find support groups and church groups to speak to and to help with the many facets of this. God Bless them.

I receive feedback from Amazon, social media, and friends who have purchased the book and come back to buy more. Sometimes I give presentations at assisted living centers and support groups and people come up to ask questions and purchase the book.