After a life-threatening accident stopped her completely in her tracks a few years ago, author Sharon Wegscheider-Cruse and her family came to truly understand that we are all one event from a lifestyle change. Former First Lady Rosalyn Carter clearly illustrated the importance of this when she said: "There are only four kinds of people in this world: those who have been caregivers; those who currently are caregivers; those who will be caregivers; and those who will need caregivers." While some people choose to take care of loved ones after they can no longer take care of themselves, many others must do so for a myriad of other reasons, often financial. It can be a crisis situation, such as an accident, or the long-term effects of aging. In any case, the days are often long and draining, both for the family caregiver and the paid professional, and the choices to be made are often confusing, difficult, and daunting.

In this illuminating book filled with practical, easily implementable advice, Wegscheider-Cruse helps readers sort through the puzzle that forms the caregiving world. Chapter topics include: identifying the roles of caregivers; how to deal with burnout; finding ways to compartmentalize and separate without guilt; using technology to make life easier; building bridges through teamwork; downsizing; and navigating end-of-life issues. Most importantly, the book offers readers a deep toolkit of invaluable suggestions for navigating tough issues with positivity and optimism. It is also the first book to provide stories from the perspective of not just the caregiver, but the caree, thus enabling caregivers to better understand their fears and feelings. The result is a positive, unified approach to care.

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The Caregiving Puzzle

Life changes fast.  Life changes in the instant.You sit down to dinner and life  as you know it ends. —Joan Didion

We are all one event from a lifestyle change.

Have you or someone you know been through a major loss?

accident.

diagnosis of serious or terminal illness.

financial loss.

disability.

complications of aging.

loss of major sense—sight, hearing, sound, touch, or taste.

sudden loss of relationship from death, divorce, or abandonment.

diagnosis of chronic and progressive illness such as Alzheimer's or Parkinson's diseases, dementia, or MS.

My experience includes all of these losses. They happened either to me or to someone I love. My experience is my teacher and my passion for this book. Anyone who suffers through any one of these events also impacts the life of at least ten people around them. Whether family members or professional and/or volunteer caregivers, these are the people who provide care in many forms. They deliver medical care, and feed, comfort, and transport, as well as often provide financial and logistical support.

This demonstrates how fast the need for caregiving is mushrooming.

Caregiving needs can enter our lives in a moment of crisis, or they can slip in insidiously with someone needing first one thing and then another and then another. Caregivers are created instantly or developed slowly.

Either way, it's complicated. Crises and accidents catch us by surprise, which upsets routines and brings added demands on our time and energy. Slower-growing crises, such as a person experiencing undiagnosed medical issues or moving into dementia, can bring angry, confused behavior. The lack of affordable caregiving services or actual caregivers brings another layer of complication.

Adding to the complication is the fact that many professional caregivers were in caregiving positions in their families during their growing-up years. Caregiving feels natural and normal for them. Once they grow up to choose a profession, often in the caregiving field, they have great difficulty separating their professional lives from their personal lives and are prone to overwork and burnout. This is the system we find ourselves living and working in right now. It's a staggering and powerful awareness that caregivers are also in great need of care.

This book is not about fixing anything, but it is full of tools to aid caregivers. It's more about understanding the players and the puzzle. I share my experiences with navigating both needing to be cared for at different times of my life and taking care of people at other times. You are probably in that same lifeboat with me. As the old saying goes 'Don't forget to sing in the lifeboats.'

Caregiving Is Big Business

According to a 2015 report from the National Alliance for Caregiving and the American Association of Retired People (AARP), approximately 43.5 million caregivers in the United States provided unpaid care to an adult or child in 2014. How many more have been added since that time? It's staggering to think about the growth in caregiving. In a wider sense, businesses that care about people and the value they add are discovering that caring itself is a powerful business advantage.

I have found no comprehensive, reliable statistics about the vast numbers of professionals who work to enhance or restore the physical, psychological, intellectual, emotional, or spiritual well-being of others. They work in a wide range of fields: medicine, nursing, psychotherapy, psychological counseling, social work, and ministry. I am certain the numbers are staggering.

According to AARP, statistics tell us that 75 million baby boomers are on the verge of retirement. For the next twenty years, an average of 10,000 boomers per day will reach age sixty-five, which has historically been the threshold age of the retirement phase of life. Those born after 1960 will need to reach age sixty-seven before they receive full retirement benefits.

How Does the Need for Caregiving Arise?

It could be you. It could be me. It could be anyone we love. In that instant of awareness following an incident or diagnosis, caregiving is born. Once born, it tends to flourish. Two kinds of events initiate caregiving—the immediate or the unexpected. The unexpected is a realization that a loved one is truly changing: slowing, gradually, but steadily, the loved one could be slipping into dementia. Or he or she could be experiencing a permanent physical decline after a medical event—no longer able to navigate stairs, bathe without help, or manage household chores.

Both events involve a crisis of change of thought, feeling, and lifestyle. Webster's Dictionary describes crisis as 'an extremely dangerous or difficult situation' in which decisions must be made.

Crisis and Immediate Caregiving

'Caregiving often starts the final walk you have with someone you love.' —Unknown

Every crisis that gives birth to caregiving is a personal crisis. The names and details may change, but the fundamentals are similar. I like sharing stories of change from real-life examples because they bring home the impact on the upheaval in individual lives. I have changed only the names of the people involved.

Dan

Life for Dan changed in April 2017. Dan was fifty-two years old, married, with two children, and in excellent health. His dad was thrilled to be a grandpa and his mom was active and busy in her retirement life. Then came 'the call.' His dad had fallen in the garage and broken his hip. Dan went to his dad immediately, even though he lived fifty miles across town. He spent the initial hours in the hospital doing what he could do to ensure his dad's comfort and safety. Within four days, Dan had to make life-changing plans for the whole family. When was his dad going to be discharged? Who could take care of him when he came home? Who would take care of his mother? And what did short-term and long-term plans look like?

©2019 Sharon Wegscheider-Cruse. All rights reserved. Reprinted from Caregiving: Hope and Health for Caregiving Families. No part of this publication may be reproduced, stored in a retrieval system or transmitted in any form or by any means, without the written permission of the publisher. Publisher: Health Communications, Inc., 3201 SW 15th Street, Deerfield Beach, FL 33442.