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.
Can’t We Talk About Something More Pleasant?
By Roz Chast
228 pages, Bloomsbury USA; First Edition edition (May 6, 2014)
Five years after her mother’s death at the age of 97, Roz Chast commemorated her journey with her parents during their last few years in a graphic memoir titled “Can’t We Talk about Something Pleasant?” Her mother was a strong, fiercely independent, and often authoritative woman, “built like a peasant” as she liked to boast. Her father was a sensitive man who was madly in love with his wife and glad to have her be the captain of their life together.
Chast recalled grappling with layered feelings about her childhood and her relationships with her parents, guilt over her own impatience and transfer of the “dirty work” to aides, and frustration at her inability to convince her parents to take action. She constantly worried about their well-being, living by themselves in a Brooklyn apartment and then in an assisted living facility, and how their savings would cover the astronomical expenses for personal and medical care. Chast’s memoir showed the uncertainty of the near end-of-life journey from the perspective of an adult child, in a reversal of roles with her parents.
The book opened with Chast’s attempt at initiating the “conversation.” She vaguely began with “so…do you guys ever think about things?” When her parents feigned cluelessness to her reference, she got annoyed and gave up. Afterwards, she was actually relieved to be able to put off the conversation. Chast’s honesty about her relief at holding off the conversation is refreshing and, I think, relatable for many families. It’s something that should be done, but aging and dying are so very unpleasant and awkward for families to discuss specifically and directly.
Her parents’ reluctance to talk about dying or being too old to take care of themselves is understandable. They grew up in immigrant households and lived through World War II. Their generation’s survival strategy was to “not tempt fate” by speaking about potential horrors. And unsurprisingly, since they had been taking care of themselves for over seven decades, they were reluctant to give up decision making power and allow anyone else to take care of them.
One of the smartest things Chast accomplished was getting her parents to work out their affairs while they were mentally cognizant. They initially hesitated to to share and hand over their financial matters. Chast brought in a professional, third party – an elder lawyer who met with them at their homes and help them put together a will, health care proxy, and power of attorney. She joked that unlike someone else’s child in a story her parents like to tell, she did not go out and buy herself a closet of cashmere sweaters with their money afterwards.
The Beginning of the End
While Chast was busy with her career and starting her own family, she didn’t worry about her parents very much. They had health ailments and were on a gradual decline, but were living independently. However, when her parents turned 90, Chast began to notice that their home was not as clean as it used to be and they seemed frailer. They were moving into “extreme old age.”
The major event that propelled Chast into full-on caretaker mode was her mother’s fall from a ladder. Falls are a serious and costly problem for older adults. According to the CDC, each year, one out of three people over 65 experience a fall, but fewer than half tell their doctor. Like many of those older adults, her mother refused to go to the hospital. After weeks of worsening pain, she reluctantly went to the emergency room. During her father’s stay at her home, Chast learned the extent to which his dementia has been concealed under her mother’s care.
Guilt is a common feeling for many family caregivers. Chast aptly highlighted the cycles of frustration at herself, at her parents, and at the circumstances and guilt. She felt bad for not having more patience for her father’s “sundowning.” Over the course of the day, he became more frantic and paranoid about someone stealing his expired bank books. She felt torn about leaving her parents’ home after her mom’s major fall. On her way home, she wondered if she should have spent the night. But her children were waiting for her, she reasoned. If only her father stepped up, things would be easier. Or if her mother would just stop being stubborn and go to the hospital. She felt like the worst daughter in the world.
Although her parents had been frugal and saved for retirement, there was no way to budget for how much care they would need and really how long they would live. Since Chast was in charge of paying the bills for a growing tab of services, she was always worried about how much longer her parents’ savings would cover the $7,400 a month apartment at the assisted living facility, personal care, etc. She hilariously illustrated telling her mother, with support from the hospice staff, that she was “running out of money.”
Juggling many responsibilities, it is hard for caregivers to research and educate themselves on all matters, from the best medical facilities to the best home care agencies to the best health coverage options. When Chast’s parents moved to an assisted living facility near her home in Connecticut, their retiree health insurance plan based in New York did not carry over. They paid out-of-pocket for medical care except for hospital stays which were covered by Medicare Part A (hospital insurance). Typically when someone has both Medicare and retiree health insurance, Medicare pays first, with the retiree insurance covering the rest. I can’t help but wonder if enrolling into Medicare Part B (medical insurance) might have saved her parents a portion of costs for non-hospital medical services.
For a long while, Chast expected the end after bouts of sickness, but her mother inexplicably turned around each time. Then her mother entered what Chast described as “chrysalis,” the final passive stage when life has been “unduly prolonged.” Her mother slept most of the time, waking up only to drink Ensure. Like a pupa, she did not interact with her environment.
No one knew how long her mother would be in chrysalis. This stage of limbo is often agonizing for families. Chast’s description reminded me of my last visits with my grandmother, during which I’d give monologues while she was comatose. She was like a cardboard cutout of the grandmother I used to know.
During the period near and after her death, Chast hoped desperately for reconciliation and acknowledgement of past hurt from her childhood. She described a heartbreaking visit, when she tried to talk about the distance she felt in their relationship, but disappointingly discovered that the time to mend their relationship had passed. It seemed like the best time for this talk would have been, like the meeting with the elder lawyer to sort out financial and legal matters, before the rapid health decline.
Chast’s intent for the memoir was to share her personal caregiver journey. I’d like to know her if her experience with her parents has changed her plans for her golden years. Was there anything she would have done differently? How will she prepare her children for her aging journey?
Chast honored the journey that she and her parents took together, with humor and candor. Highlights from past conversations, photographs and her mother’s poetry were sprinkled unobtrusively throughout the book. We got glimpses of her parents’ younger selves, unclouded by amplification of their idiosyncrasies in old age. I know that my caregiver journey with my own strong-willed, immigrant parents might follow a similar arc as Chast’s. Her memoir reminds me that my caregiver experience is simultaneously unique and universal.
Identifying as an emerging caregiver
Until my mother suffered a stroke last year, I did not think of myself as a caregiver. Her health had not been great in recent years. I started to accompany her on doctor’s visits when she switched her primary care physician. I wanted her new doctor to know that she had a family member who was diligent about understanding her medications and treatments. I thought of myself as a concerned daughter.
As Feylyn Lewis noted in her informative article about Millennial caregivers, younger family caregivers may feel the help they provide to their families does not count as caregiving, because it is not their full-time job; they are not the primary caregiver; or they provide mostly emotional support. From my personal experiences, my peers who check in on their aging parents, manage their medical appointments, run errands, or perform housework or home repairs, do not think of themselves as caregivers. And they are probably not looking for resources, from public programs to marketplace solutions, intended for family caregivers.
One day last fall, my mother called me to say that she had some trouble walking, but it was probably arthritis and just old age setting in. When we finally convinced her that her condition was serious, and that we needed to go the emergency room, I stayed with her until visiting hours were over. Over her week-long hospital stay, I visited every day, taking time off from work. I talked to nurses, neurologists, cardiologists, social workers, and physical therapists, translating and retelling her medical history leading up to the stroke.
As others treated me as my mom’s caregiver, I began to identify as one. When she returned home, I set up the visits to the physical therapist, neurologist, and primary care doctors. I brought the discharge papers to each visit and retold her stroke experience. Relatives and friends kept reminding me to take care of myself, eat regular meals and get sleep. They did not want me to become one of the many caregivers who provide care to others while in poor health themselves.
I now consider myself an emerging caregiver. My mother is making a great recovery. I anticipate that as my parents grow older, I will have to be more involved in their financial and healthcare matters. In my conversations with my friends, most of them know expect to be helping their parents with daily life in the coming years. However, most of caregivers do not get any preparation for their role and provide care with little or no support. I want to be prepared.
To experienced caregivers, what did you wish you knew when you first become a caregiver? What advice would you give your newbie caregiver self? Please share your experiences and wisdom for emerging caregivers in the comments section below.
Featured image by Paula Tadeo, 2012 via Flickr.