Life and Death

Book captures what it feels like to be a caregiver

Local library hosting new series of programs for caregivers

By Bonnie Evans
Posted 3/22/23

Combining their professional expertise with their experience as caregivers, the authors of “The Unexpected Journey of Caring” truly capture what it feels like to be a family caregiver. …

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Life and Death

Book captures what it feels like to be a caregiver

Local library hosting new series of programs for caregivers

Posted

Combining their professional expertise with their experience as caregivers, the authors of “The Unexpected Journey of Caring” truly capture what it feels like to be a family caregiver. They describe the transformation into the role of caregiver with the words “when care meets love.”

Every caregiving experience is unique, yet there are common themes and issues outlined with compassion and insight. Most importantly, the authors offer new perspectives and sage advice based on their deep understanding of the challenges as well as the opportunities for growth when caring for someone who needs us. 

Over time, caregivers can feel increasingly out of place with family and friends who are still out in the world working or traveling and setting personal goals. The world of a caregiver, by necessity, tends to become more narrow and focused on the needs of their loved one.

The authors explain how this new reality can lead to less tolerance for what might be seen as the trivial concerns of others or a disconnect from previous relationships. Listening to someone describe their recent vacation, for example, could evoke resentment in a caregiver who would be excited to simply take a day trip or go shopping alone.

Love becomes more than a feeling at this point, it is also what you do. While you are busy “doing,” circumstances along the way can trigger growth and newfound wisdom, to reprioritize life, to develop a deeper relationship with the person needing care or to find meaning and purpose in the role of caregiver.

A strong message throughout the book, but especially in Chapter 7, “Making Meaning That Matters Now”, details how and why a sense of meaning and purpose can be further cultivated within a community of other caregivers. In the company of family and friends, stories and comments may be modified based on family dynamics, prior expectations, or discomfort with exposing feelings of guilt, fatigue or even anger. There may be thoughts and reactions that are withheld to protect the loved one.

However, “when unedited responses are shared with fellow caregivers, including the profane, funny, joyous, resented, sad, trivial, monumental and grievous, you may find that what you believed only YOU felt and experienced really wasn’t only about you.” You can become part of a “we,” reducing the sense of loneliness that can occur when you are someone’s lifeline. Finding support either online or face-to-face, caregivers can pool resources and consider a variety of ideas, viewpoints and strategies. 

While being honest about the personal challenges, this book is simultaneously an homage to the strength and resilience that is called upon when adjusting to this new (or not so new) and unpredictable territory of caregiving. A territory that can alter one’s view of the future. Maybe things aren’t going to be alright, and how does one live with that sense of vulnerability? When the future is less certain, previous plans and expectations may be replaced with more emphasis on the now.

What can be appreciated now? What needs to be done now? What is truly important now? Where is the beauty now?

In fact, this is the reality for all of us, but a caregiver may encounter daily reminders of how fragile life can be.

The authors get it and offer practical suggestions throughout the book, including how to advocate for what you need and want. They emphasize the importance of building a personal network of support to connect with whatever or whoever can help you provide care. At its core, the book affirms the value of caregivers and the work they do. It includes the messy bits along with the moments when you witness “small joys and tender mercies.”

Caregiving program at Rogers Free Library

Following on the theme of caregiving, the Friends of Rogers Free Library in Bristol are supporting a grant that will offer a series of six programs on topics relevant to current, as well as future, caregivers in our community. “Let’s Talk: Caregiving Matters” will start on Tuesday, April 4, from 3 to 4:30 p.m. at the library on Hope Street and will be offered every other week.

There will be educational presentations followed by light refreshments and an opportunity to gather informally and extend the conversation. There will be guest speakers, and the library is organizing books and resources to be available based on the topics covered. The educational portions will be made available on Zoom as well.

No registration is required. Attend one or all six programs described below. For more information. contact the library at 401/253-6948 or rogersfreelibrary.org. The schedule is:

April 4: “Let’s Talk: Life Happens”

The books “Being Mortal” by Atul Gawande and “The Unexpected Journey of Caring” by Donna Thomson and Zachary White will provide the structure for a discussion on life’s challenges, including the often-unexpected transition to caregiver. Caring for loved ones requires “grace and grit,” conversations and a little preparation for the journey.

April 18: “Advocating for a Loved One”

Navigating a complicated healthcare system and advocating for needed resources can be complicated. Tips on communicating with healthcare providers and making difficult medical decisions will be reviewed.

May 2: “Coping with Change, Loss and Grief”

Guest speakers Jessica Stout and Walter Horak, authors of the book “Feel Me Brave,” will share their story of the loss of their son/grandson. Through poetry and blogging, they created a book that helped them to continue healing and keep their hearts open.

May 16: “Advance Care Planning”

It is not just checking off boxes on a form. Discussing and sharing your wishes and values can be a good place to start. How to choose a health care proxy and a review of the MOLST and other RI forms will be included.

May 30: “Palliative Care for Patients and Their Families”

Kelly Baxter, palliative care nurse practitioner, will describe the extra layer of support this medical specialty can offer during a serious illness. Being informed will help you to know when, how and where to access it.

June 13: “Book Discussion”

The series ends with a book discussion on “Tuesdays with Morrie” by Mitch Albom and “Can We Talk About Something More Pleasant” by Roz Chast. They offer different perspectives on caregiving, along with some humor. Read one, both or just come to listen.

Bonnie Evans, RN, MS, GNP-BC, lives in Bristol and is a geriatric nurse practitioner and End of Life doula. She can be reached at bonnie@bonnieevansdoula.com.

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