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

Regaining Physical Resilience After Serious Illness

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

I’ve been blogging here about my difficult recovery following months of cancer treatment. One thing I’ve learned: To fully recover, you must fight to regain your physical endurance and strength, also known as your physical resilience (see this earlier blog post about another important factor in your recovery, emotional resilience).

The advice I’m offering applies to you if you’re the one who’s experiencing the illness, and it’s also relevant if you’re a caregiver for someone living with a serious condition.

Getting Yourself Started

To regain your energy and strength, begin to resume daily activities as soon your healthcare team gives you the green light. Then, slowly but surely, you can increase the time you spend each day doing some form of physical activity. That can be easier said than done, especially when you’re coping with symptoms such as pain or fatigue. Here’s my advice: Start small and begin with the basics. As soon as you’re able, start bathing and dressing yourself. If these tasks are too challenging, talk with your healthcare provider and caregiver about small steps you can take to stay active given your own situation.

Walking is also a great way to recondition. I found during my own recovery that keeping up my usual routine, which involved getting up and exercising every morning, was helpful. Even when I needed to go to the hospital for intravenous hydration, I would consider that my morning walk. Over time, I was able to walk more and more, and I found that walking at 6:00 or 6:30am worked well—even on days when it was hot and humid. Walking is a great way to start the day and can help ease symptoms such as pain and a low mood.

Depending on the weather, the time of year, and the availability of safe walkable space in your community, you may have to be a bit creative. In the summer, for example, early morning walking might be the best—especially if drinking sufficient fluids for hydration is difficult. If outdoor walking isn’t an option but walking is still something you’re able to do safely, consider climbing up and down the stairs, walking in the hallway if you live in an apartment building or institutional setting, or just marching in place while you’re sitting or standing. When it’s safe to do so, putting on headphones and listening to a book or music can help make the time pass more quickly and pleasantly. Continue reading

Building Up Emotional Resilience: The Key to Recovery

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

As I noted in an earlier series of blog posts, I’ve been dealing with an intense course of cancer treatment. During my treatment, I’ve come face-to-face with some important but difficult facts—and since I think many of those facts hold true for others dealing with serious chronic illnesses like cancer, I wanted to share them here.

First, I’ve learned that cancer treatment can be a real rollercoaster. Your emotional resilience—or your ability to bounce back from a challenge—can dip. Along my journey through a long, slow recovery, for example, I’ve experienced dark moments when my resiliency has all but faded. I know that many people who cope with chronic illnesses experience these difficult, dark moments—which is why it’s so important to recognize them when they appear.

I’ve also learned that losing your resiliency is often as hard on your caregiver(s) as it is on you. It’s tough when you’re the person undergoing treatment, but it can be equally painful for a caregiver to watch someone struggle with a difficult recovery. These are the moments when you need to say to yourself—or reach out to your loved one and say—“Please fight just a little bit longer.” Let’s look at some ways to make that possible.

Strengthening Your Resiliency Muscles

Where resiliency is concerned, what can you do to help yourself or the person you are caring for draw on inner strength for the road ahead?

Begin by recognizing the difference between physical and emotional resiliency.

We’ve already seen that emotional resiliency is your ability to bounce back from a challenge. Physical resiliency, on the other hand, refers to your ability to recover physical strength after you’ve undergone intensive treatments for cancer, surgery, or other serious medical conditions. Each type of resiliency can be impacted by an illness, and each person may respond to resiliency differently. Physical activity is something that I truly enjoy, for example, so remaining physically resilient was less challenging for me than maintaining my emotional resilience. You need both types of resiliency when you’re dealing with tough medical challenges. Let’s focus here on strategies for conserving your emotional resiliency (my next blog post will be on regaining physical resiliency). Continue reading

How to Be the Best Caregiver/Care Coach You Can Be (Part Two)

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

Remember my recent blog post about being a terrific caregiver and care coach?  Here are some more tips based on my professional and personal experience.

Remember, Actions Speak Louder Than Words

You may not be an individual’s primary caregiver or care coach. You may just want to show you care. We all have people in our lives we really care about who have received some type of life-threatening or life-impacting diagnosis.  It could be anything from experiencing a hip fracture or a stroke, or a cancer diagnosis requiring treatment or palliative care management (comfort care).

It is hard in these situations to know how to respond and what to do.  Personally, I am a big believer in “actions speak louder than words.”  It never hurts to reach out to someone you care about who is undergoing treatment or who needs help and support coping with a long-term illness or disability.

Never be afraid to just DO or SAY something. Don’t be afraid to let the person know you heard about their illness and wish them well.  Show you care in any and every way.  Don’t hesitate because you are afraid you are intruding on the person’s privacy. If you heard about their illness, it is no secret!

Avoid Useless Gestures

Personally, I recommend against saying things like “let me know if I can do anything” or “call me if there is anything I can do.”  Essentially, when someone is ill they are not likely to pick up the phone and call for help.

Instead of empty gestures, provide words of encouragement that may have helped you in the past. For example, when I first started my course of radiation and chemotherapy, a colleague sent me a quote that Christopher Robin said to Winnie the Pooh:  “Promise me you’ll always remember that you are braver than you believe, stronger than you seem, and smarter than you think.”  I put this on my desktop and read it daily to help me through my own challenging treatment.  Continue reading