Cleaning (as if someone else might have to)

Nancy Lundebjerg resizedNancy E. Lundebjerg, MPA
Chief Executive Officer
American Geriatrics Society

It started with the shoes in the corner of the bedroom—and it continued through three closets, two dressers, a huge chest in my living room, a small filing cabinet, the front hall closet, and even the desk in my office at work. Some might call this spring cleaning but, for me, it’s more episodic and usually sparked by something like being annoyed enough by the pile of shoes in the corner to find them a home.

As always happens during one of these all too rare bouts of purging, I think about the family cleaning events I’ve been part of as parents, aunts, and grandparents moved on. I was having dinner with a few friends last week and we were swapping our caregiver cleaning stories. I found that my late father’s desire to hold on to his power tools was matched by my friend’s father’s desire to bring them all with him to his new assisted living facility. I somehow ended up with a drill, hammer, and a ruler from my dad. The hammer is spattered with paint and the head may be a little loose but I think of my dad every time I use it and could not imagine purchasing a shiny new one. The ruler is an artifact in my curio cabinet – along with the rotary phone from my parent’s bedroom. They’re Items with no current purpose…and they make me smile.

I also spent several years as my aunt’s primary caregiver. Moving her out of her apartment was easier but still no less daunting. I had reached the point where I couldn’t maintain her at home given her advanced dementia, and so I undertook the hunt for a quality nursing home that she could afford and that would take her (Sidenote: “Would take her” is a thing…and a thing for an entirely different blog post!). Having found one, there came the task of cleaning out her apartment. My sister, niece, and I found that she had a closet filled with lightbulbs ordered from some charity (beware the telemarketer and your older loved one). There were bricks in that closet—from where and for what we still do not know. She also had a cedar chest (made by my grandfather) filled with old ConEd bills.

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Study Examines Caregiving by Family Members, Other Unpaid Individuals

JAGS graphicJournal of the American Geriatrics Society Research Summary

It’s estimated that nearly 30 percent of the 38.2 million people aged 65 or older in this country receive some form of caregiving, either for health reasons or to help manage daily activities. More than 65 percent of these older individuals rely on family members, friends, and even neighbors for assistance with things like preparing meals, bathing, taking medications, and getting transportation.

Caregiving is a significant public health topic because it affects the health and well-being of both the older adult and his or her caregivers. Recently, a team of researchers examined the various characteristics of people who serve as unpaid caregivers. They also estimated how many people serve in this capacity. The researchers took note of the health-related tasks the caregivers provided, as well as how caregiving affected care providers. The researchers published their findings in the Journal of the American Geriatrics Society. Continue reading

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

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 Two: Healing, Getting Stronger, Eating and Sleeping Better – Trial and Error and a Pinch of Patience

Because everyone’s recovery from surgery is different, your healthcare team can only give you basic information and guidance based on what they see and hear from other patients. Knowing what to expect in terms of wound healing, fatigue following surgery, physical activity, and eating and sleeping—all things which are essential to the healing process—is where trial and error and waiting may come into play.

Wound healing takes time. You can aid the health process by getting enough protein and calories, treating any anemia you might have, and keeping the wound and the surrounding area clean. These are all things that you can do with the help of a caregiver. Protein intake should ideally include 30 grams of protein with each meal for an average size adult male and less for a smaller female (30 grams includes a piece of meat, chicken, or fish the size of your fist, or several eggs). If you continue to feel unusually tired at home, tell your healthcare provider. They may do a blood test to check for anemia (an insufficient number of red blood cells, sometimes called “iron-poor blood”). If you have some anemia, your provider may have you take an iron supplement. Eating iron-rich foods is always a good idea when healing. Try dark leafy greens, dried fruit, beans, enriched breads and cereals, meat, eggs, and some fish. Keeping your wound clean with soap and water and showering as soon as you are able to will also help with healing. Then sit back and let the healing take place! Continue reading

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