Connecting Caregivers: Answers to the Questions You Didn’t Know You Needed to Ask

Edited by Linda Burhans

198 pages, Skylar Thomas Publishing (June 1, 2016)

 

Connecting Caregivers is a collection of writings by experts in the fields of aging, dementia, home care and other related fields, offering hard found wisdom and practical resources for caregivers. Ms. Linda Burhans, a caregiver advocate who has facilitated over 1,200 support groups and workshops for caregivers, contributes personal stories from her work and edited the book. She describes herself as the gal who cares for the caregivers.

A Book By Many Authors

Each chapter is organized under one of the three parts: “Learning to Navigate,” “Learning to Cope,” and “Learning to Accept.” Some provide detailed information about practical matters, such as finding the right home care service, while others offer perspectives on changing cultural attitudes towards aging. The topics do vary and each could be published as separate articles on their own. The information from one chapter does not necessarily relate to the following one. Readers may find the book most useful as a reference on specific topics, such as dementia care and the help a geriatric care manager or aging care specialist can provide to families in navigating the “healthcare maze.”

The chapters do not seem to be focused on specific perspectives or angles. Christine Varner’s chapter on signs and symptoms of dementia begins with her acknowledgement that she had trouble finding the flow of the chapter as she began to write, and follows with details about her dad’s diagnosis of Lewy Body disease. Some chapters seem like short notes. The chapter, “The Caregiver “AAA” Dilemma,” was two pages long and urged the reader to ask for and accept help.

Sprinkles of Inspiration and Pockets of Advice

Most of the chapters take on a conversational tone, as if a counselor is sharing advice with you. Ms. Burhans’ touching stories from her work with caregivers are scattered between chapters. Her story about Mike, who dyed his hair and dressed in clothes from his younger days to ignite his wife’s memories of him, is heartrending, while demonstrating how a bit of creativity can help connect with those suffering from dementia. Another memorable story is the one of a bedridden, former teacher who found purpose again in helping a child discover the love of reading.

The chapter, “Power of Story” by Paula Stahel reminds the reader that sickness does not remove a person’s lived past and that many have incredible stories to share. She suggests recording their stories by asking open ended questions and recording the conversations or hiring a professional historian.

Along with the inspirational stories, there is also advice on functional matters such as understanding home care options and legal preparation for incapacity. The chapters discuss the different kinds of dementia, meaningful engagement with those who suffer from it, and transitions to memory care communities. Authors also promotes journal writing and support groups as caregiver self-care tools. One author, Ms. Mary Jane Cronin, offers writing prompts for those new to journal writing.  

A couple of chapters (“What Are the Signs and Symptoms of Dementia and What Should I Do?” and “Is a Memory Care Community the Right Choice for My Loved One?”) emphasize that there is “no heroism in doing it alone.” It is not only okay, but imperative, to ask for and accept help from family members in caring for sick loved ones, and to use resources such as adult day care, home care, respite care, and residential programs.

Don’t Forget to Connect With Your Loved Ones

An important message I got from “Connecting Caregivers” is that family caregivers must acknowledge their own feelings (for instance, of guilt, resentment, loneliness, confusion). With acknowledgement, a caregiver may begin to learn to accept what they cannot change and even to “just be” with their sick loved ones.

Ms. Carole Ware-McKenzie’s chapter has a great reminder for caregivers – see your loved ones as people. That’s often forgotten by caregivers as we juggle medical appointments, bills, and chores and sometimes treat them as responsibilities to bear. Ms. Ware-McKenzie writes, “[j]ust realize, when you are looking at the lady in her wheelchair, that is the sum of who she is. She had dreams, goals, and adventures that are still playing in her head.”

“Connecting Caregivers” affirms to readers the struggles of caregiving and offers possible ways to manage stress and challenges, and perhaps to even have fun while doing it.  

About Isabella Leung

Profile photo of Isabella LeungIsabella is an “emerging” caregiver for her immigrant parents. She is passionate about bringing concepts to practice and improving the US healthcare system for older adults, family caregivers, and vulnerable populations. She has studied human-centered design as a creative problem solving approach for sector-specific and cross-section solutions.

One of her most rewarding professional endeavors has been helping to build the online health insurance marketplace for District of Columbia residents and small business employees. Currently, she provides consulting services to health systems, nonprofit organizations, and governments. When not contemplating the intersections of healthcare systems, health aging, and the patient experience, Isabella likes to hike, camp, practice yoga, and explore caves.

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