Lianna Marie - Everything You Need to Know About Caregiving for Parkinsons Disease

Lianna Marie

Purdue University Press West Lafayette, Indiana

For Muriel,
one of the all-time great caregivers

Copyright 2020 by Lianna Marie. All rights reserved.

Printed in the United States of America.

Library of Congress Cataloging-in-Publication Data

Names: Marie, Lianna, 1974 author.

Title: Everything you need to know about caregiving for Parkinsons disease / Lianna Marie.

Identifiers: LCCN 2020020344 (print) | LCCN 2020020345 (ebook) | ISBN 9781557539953 (paperback) | ISBN 9781557539960 (epub) | ISBN 9781557539977 (pdf)

Subjects: LCSH: Parkinsons diseaseHandbooks, manuals, etc. | Parkinsons diseasePatientsCareHandbooks, manuals, etc. | CaregiversHandbooks, manuals, etc.

Classification: LCC RC382 .M3673 2020 (print) | LCC RC382 (ebook) | DDC 616.8/33dc23

LC record available at https://lccn.loc.gov/2020020344

LC ebook record available at https://lccn.loc.gov/2020020345

This book is sold with the understanding that neither the author nor the publisher is engaged in tendering legal, accounting, medical, or other professional advice. If such advice or other assistance is required, the personal services of a competent professional should be sought.

A trained nurse, Lianna Marie served as her mothers caregiver and advocate for over 20 years through the many stages of Parkinsons disease. She founded AllAboutParkinsons.com, an online community that has connected and helped thousands of people with the disease, their families, and their caregivers.

The Complete Guide for People With Parkinsons Disease and Their Loved Ones is written for people recently diagnosed and their family members; Everything You Need to Know About Caregiving for Parkinsons Disease is a go-to resource for all caregivers of those suffering from Parkinsons. Both books share the goal of educating and helping everyday people with no specialized training, providing comprehensive information, practical tips, and guidance about how to deal with the emotional toll of the disease.

Marie speaks frequently to fellow caregivers, guardians, and nurse practitioners. Born and raised near Toronto, Marie now lives with her husband in Seattle. When not writing or speaking, she can be found in the swimming pool, training for her next competition. To learn more about Lianna Marie, her upcoming books, and her speaking schedule, visit www.liannamarie.com.

The Complete Guide for People With Parkinsons Disease and

Their Loved Ones The Parkinsons Path: Your Guide to Finding Hope, Happiness,

and Meaning on Your Journey With Parkinsons Fighting Parkinsons: 15 Vital Exercises to Help You Fight the

Progression of Parkinsons How to Parkinsons Proof Your Home: The Essential Guide to

Making Your Home Safer for Living With Parkinsons

Find these books and free resources at AllAboutParkinsons.com.

If you enjoy this book or find it helpful, I would be very grateful if you would post a short review where you purchased it. Your support really does make a difference, and I personally read all the reviews.

My mom lived with Parkinsons for 30 years. She spent the last eight years of her life battling dementia as well, which made for an extra challenging time for those of us who loved and cared for her. If youve experienced dementia with a loved one, I know you understand.

Even though Mom succumbed to dementia, I think most would say its remarkable that she survived three decades with Parkinsons, given that the average amount time people with this disease have from diagnosis to death is 16 years. I believe it was her faith and determination, as well as the caregivers she had over the years, that made the most significant difference.

Mom was fortunate enough to have a team of people around her that helped make life easier as her illness progressed. I was one of those team members, and my role was hands-on for most of that time, either in her home or in nursing homes in the late stages of her disease. For a few years I cared for Mom long distance and experienced how hard that can be, so I certainly relate to folks whove had to do that for their loved one.

When Mom was in the early stages of PD, she only needed help with simple tasks like getting out of a chair or car seat now and then. Over time, Moms needs increased and tasks like helping her walk to the bathroom when her wheels (aka legs) were shut down, delivering medications to her at the scheduled times, and taking on household jobs like cooking and cleaning were just a few of the things that I, as well as her other caregivers, took on.

One of Moms caregivers through the mid-stages of her disease was her husband, Dave. They married in the 10th year of Moms illness, and he vowed to take care of her in sickness and in health. Dave took on many of the tasks Mom needed doing, all while trying to maintain a stress-free environment for her so as to minimize her symptomsan assignment most people would find challenging.

As the years passed, the physical stress and emotional demands of caregiving became too much for Dave, so both he and my mom sought external help. This help took many forms, including care workers who helped them in their home, support groups for both of them, a short-term respite from a care facility, and caregiving from family members like myself.

Unfortunately, throughout his many years of caring for Mom, Dave neglected to take care of himself. He developed diabetes as well as skin and colon cancer. Despite his illnesses, Dave was a loyal and loving caregiver. He visited Mom in the nursing home and took her on outings whenever he was able. He even volunteered and helped raise funds for his local Parkinsons foundation. Sadly, his illnesses became too much for him, and Dave passed away.

I know our story is not unique. Having read hundreds of stories from fellow Parkinsons caregivers, I found that many are doing their utmost for their loved ones with Parkinsons but are finding it overwhelming and sometimes detrimental to their health.

As a caregiver and advocate for my mom, I embarked upon a mission to help her receive the best quality and quantity of care possible. After seeing the toll that caregiving took on Dave and, conversely, what his and my familys efforts did to help improve Moms quality of life, I feel compelled to help other caregivers care for themselves while caring for their loved one.

I hope this book can be a new chapter in your caregiving journeyone in which you find encouragement and support, as well as practical tips and guidance, to help you navigate the various challenges you may face.

I will finish here with a quote from an interview Mom gave around the 12th year of her journey with Parkinsons. She was speaking about what enabled her to keep going day after day, but I think it applies to us caregivers as well: Each day we must remind ourselves why we do what we do. We must find meaning in our lives outside of caregiving and focus on the joys and fulfillment we can gain from caring for our loved one.