Recovering after Surgery: Perspectives from a Patient and Healthcare Professional (Part One)

Barb Resnick HeadshotBarbara Resnick, PhD, CRNP
Professor
Sonya Ziporkin Gershowitz Chair in Gerontology
University of Maryland School of Nursing

Introduction

This is the latest in a series of blog posts by Barbara Resnick, PhD, CRNP, written from her perspective as both a healthcare professional and as a patient during the course of intensive treatment for esophageal cancer. This two-part article was written about two months following her surgery. Part One discusses the importance of preparing for going home throughout the course of a hospital stay following surgery. Part Two addresses managing ongoing recovery at home. These blog posts will be helpful to older adults undergoing surgery and their families, as well as to hospital administrators and healthcare providers.

Part One: Preparing for Life at Home throughout Your Hospital Stay
My recent experience in the hospital following surgery for esophageal cancer has made me aware that healthcare professionals (of which I am one) have much they can learn to support their patients’ day-to-day recovery following surgery, as well as to help them prepare for going home. This learning can be enhanced by acknowledging that patients know a lot about their own bodies and preferences, and by valuing the knowledge and experience patients and caregivers gain each day in the hospital. Therefore, you and your caregivers can be a valuable source of information to your healthcare team.
Although people’s responses to surgery are individualized, there are some basic approaches that can be applied to most types of surgeries and hospital stays. My experience was rather intensive, as the original surgery was an esophagectomy. This is a procedure where the esophagus (the tube that moves food from your throat to your stomach) is removed and then rebuilt from part of your stomach or large intestine. I had several complications and had to have a second surgery, all of which resulted in almost five weeks in the hospital!

My experience taught me the importance of thinking ahead and preparing for life at home while I was still in the hospital. Patients and families need to take an active part in this process, because the hospital care team is understandably often more focused on their patients’ immediate medical problems and needs. Patients and families need to ask and remind the healthcare team to teach them things that they’ll have to do when they go home, such as how to care for surgical incisions, what to do with a wound drain, or how to use a feeding tube. Patients and families need to practice these things while in the hospital, under the guidance of their care team. The healthcare team should also explain each medication when it is first given, including the name, what it’s for, how to take it, and what possible side effects to watch out for.

Also, practicing basic daily activities while you are still in the hospital is key to your recovery and in helping you know what you can do safely once you home. These activities include things such as bathing, dressing, eating, grooming, and walking, I was fortunate to have a family caregiver with me throughout my hospital stay. I made sure that I bathed and dressed daily with someone standing by me to help as needed. I walked through the hallways at least a few times a day because my family member could help carry tubes and push the IV pole. If you don’t have someone with you in the hospital, it’s important to ask the nursing staff to help with you these activities. On the actual day of my discharge, I insisted that the nurse teach me and my family how to set up the tube feedings I needed when I first went home and to practice with us.

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The Financial Costs of Family Caregiving: A Stark Reality

200-lynn-friss-feinberg-aarp.imgcache.rev1320086023339-1Lynn Friss Feinberg, MSW
Senior Strategic Policy Advisor
AARP Public Policy Institute

(This post was originally published on the AARP blog and is re-posted with permission.)

Families and close friends are the most important source of support to older people and adults with a chronic, disabling, or serious health condition. They already take personal responsibility for providing increasingly complex care to the tune of $470 billion (as of 2013). That figure, representing family caregivers’ unpaid contribution in dollars, roughly equals the combined sales of the four largest U.S. tech companies (Apple, IBM, Hewlett Packard and Microsoft, $469 billion) in 2013.

The out-of-pocket hit

Caregiving families feel great uncertainty and high anxiety about how they will continue to pay for long-term services and supports (LTSS) for a relative or close friend with increasing self-care needs. And for good reason. Family caregivers not only provide help with daily activities and carry out complex medical and nursing tasks, they also spend a considerable amount of money out of pocket for caregiving.

Out-of-pocket spending for caregiving generally refers to the purchase of goods and services on behalf of the person the family caregiver is helping. This can include housing, medical and medication premiums, copays, meals, transportation, mobility and other assistive devices, supportive services (such as adult day services and paid home care), and other goods and services.

A recent AARP research study finds that more than 3 in 4 family caregivers (78 percent) report incurring out-of-pocket costs as a result of caregiving. In 2016, family caregivers of adults on average spent nearly $7,000 on out-of-pocket costs related to caregiving, amounting to 20 percent of their total income. Among racial or ethnic groups, out-of-pocket spending for caregiving was highest among Hispanic/Latino family caregivers. They spent an average of $9,022, representing 44 percent of their total income in 2016.

Caregiving, therefore, can have a major impact on one’s current and future financial situation. A consensus report from the National Academies of Sciences, Engineering, and Medicine concludes that family caregiving for older adults poses substantial financial risks for some family caregivers. Especially vulnerable to financial harm are families caring for older relatives with significant physical impairments or dementia, low-income family caregivers, and those who live with or live far away from their older relative who needs care. Continue reading

Mama R: Living it up at 97

altshul headshotSara Altshul
AGS Staff Writer

Until a few months ago, my mother-in-law lived alone in the Brooklyn apartment building she’d owned for 40 years—“alone” only in a manner of speaking.

Over the years, her sons or daughters occupied two or three of the other apartments in the building; now, one son lives above her and another lives next door. Both look in on her several times a day.

At 97, Mama’s sense of humor is still sharp. Up until recently, she knew to the penny how much money was in her bank accounts. So when she forgets that she’s asked one of us the same question three times in 30 minutes, we all understand. She uses a walker to get around and still never misses a shower, wedding, or other family event.  A few months ago, 40 of us celebrated her birthday at a Chinese restaurant, at her request.

As her frailty became more obvious over the last year, we hired an attendant to look after her during the day. At night, one of her sons would usually have dinner with her (often, Mama cooked the meal herself), or her daughter would come by with groceries and prepared several meals for the week. We created a rotating schedule so that one of us stayed with her over the weekends.

But still, we worried. She’d nap much of the day, she kept the lights off (her thriftiness is a family legend) and she seemed to lose the zest for life that was her hallmark. Another hallmark? Her stubbornness. She adamantly refused to move in with any of us, despite the fact that several of us have homes perfectly set up to accommodate her. Continue reading

The Inextricable Link between the Eldercare Workforce and Family Caregiving

TF-cropped-photo-by-andy-camp-webTerry Fulmer, PhD, RN, FAAN, AGSF
President, The John A. Hartford Foundation

(This post also appeared on the blogs for the Eldercare Workforce Alliance and The John A. Hartford Foundation.)

Are you a caregiver? Sooner or later, caregiving touches us all.

According to a new report by the National Academies of Sciences, Engineering, and Medicine, Families Caring for an Aging America, nearly 18 million individuals currently provide care to an older family member, spouse, or friend. Millions more anticipate serving in a caregiving role in the future. Most of us, as we age, will eventually become care recipients.

For individuals and for society as a whole, the preparation of our nation’s workforce to address caregivers’ needs should be of paramount concern.

Family caregivers are a large and absolutely critical component of our health care workforce. They are the primary providers of care for our nation’s older adults, yet they remain almost invisible. While they perform a host of vitally important activities, from meal preparation and house cleaning to complex medical tasks like wound care, they often do so with no training, limited support, and little recognition.

As the Academies’ report documents, our fragmented health care system and the demands it places on families often result in physical, emotional, and financial challenges for these heroic caregivers, which puts their loved ones at risk. This is unsustainable, dangerous, and wrong.

The good news is that health and social service professionals, as well as direct care workers such as home health aides and nursing assistants, are in a unique position to support family caregivers. To make that possible, we must work to create a health care system that is not just person-centered, but also family-centered, as called for in the report. The entire care workforce needs to be equipped with training and systems that support this transformative approach. Continue reading

National Strategy Needed to Support Invisible Heroes of Health Care—Family Caregivers of Older Adults

TF-cropped-photo-by-andy-camp-webTerry Fulmer, PhD, RN, FAAN, AGSF
President, The John A. Hartford Foundation

(This post also appeared on The John A. Hartford Foundation blog.)

For far too long, the nearly 18 million family caregivers of older adults in the United States have been largely invisible to policymakers and our health care system, despite filling an absolutely essential role. The contributions these modern-day heroes make to the care of older adults is indispensable, and often comes at a significant cost to their own health, well-being, and financial security.

Families Caring for an Aging Americathe sweeping new report from the blue-ribbon committee convened by the prestigious National Academies of Sciences, Engineering, and Medicine, offers a clear, comprehensive, and compelling rationale for creating a national strategy to elevate the position of family caregivers within our health care system.

As the report indisputably documents, we have a growing population of older adults living longer than ever before with greater needs for assistance.  We have family members and friends performing increasingly complex care tasks for their older relatives and friends with little or no training.  We largely marginalize and ignore caregivers, which puts them and their loved ones at risk for harm.

If we are truly to reform health care, we must expand the idea of “person-centered care” to “person and family-centered care.” As a geriatric nurse, I have seen the need for a family-centered approach first-hand.  Too often family members, with little or no training or support, are thrust into the position of being responsible for everything from navigating the labyrinthine health care system to performing complicated medical tasks. This might be medication management and wound care, tasks that are normally provided by trained doctors and nurses.

Ensuring that caregivers not only receive the support and training they need, but have a role and a valued voice in decisions affecting their loved ones, are critical to improving care for older people. Continue reading