Caring For the Caregivers
Beth Ulrich, EdD, RN, CHE

Caregiving is a topic of concern to many nurses in both their professional and personal lives. In planning care for our patients, especially those with chronic diseases such as ESRD, we must be ever mindful of the presence or absence of caregiver resources in the home and community. Once identified, caregivers require education, training, and support. On a personal level, many nurses, especially those from the baby boomer generation, are becoming caregivers themselves as their parents age and become less able to function independently. A recent survey by Johnson & Johnson estimated that about 46 million Americans over the age of 18 (22% of the population) provide unpaid care for adults.

Caregiving has also become more complex as patients are sent home from the hospital sooner with more medications and equipment. Adding to the complexity is the fact that the majority of caregivers work as well as provide care. The population of people requiring care is also expected to increase dramatically over the next 10-20 years as the number of older individuals almost doubles.
 
The Nephrology Community
In the nephrology community we have often been leaders in working with caregivers, especially when our patients dialyze at home. A number of resources have been developed to provide education and support to patients with ESRD and their families and significant others. Even with the work we have done, however, the caregiver burden remains a heavy one and more attention needs to be paid to caregiver needs. The results of several research studies published in the past year in the Nephrology Nursing Journal speak to the feelings and needs of caregivers of patients with ESRD.

MThe Caregiver Initiative
I was privileged recently to attend the launch of The Caregiver Initiative, the result of collaboration between Johnson & Johnson Consumer Products Company, leading caregiving organizations, academic centers, and foundations. The goal of the initiative is “to provide support for caregivers while providing the best information now available about the range of challenges they face.”

A new Web site has been created – www.strengthforcaring.com – that is designed to provide a repository of the best information and support developed by leading caregiving experts, professional societies, government agencies, and caregivers themselves. The web site, with its content growing quickly, includes information on how to provide basic care; how caregivers can organize their time, combat fatigue, and care for themselves; information on health conditions; community resources; how to deal with legal and money issues; etc.

A Prescription For Caregivers
The Surgeon General of the United States, Richard Carmona (who, by the way, is an RN as well as an MD), took the opportunity during the launch of The Caregiver Initiative to announce a prescription for caregivers, believing that it is vitally important to the caregivers and those cared for that caregivers care for themselves. His prescription for caregivers included:

• Talk to your doctor if you feel depressed or anxious.
• Find out about sources of support and help in your community.
• Realize that health matters – it benefits everyone if you stay healthy and less stressed.
• Be aware of the toll stress takes on your health.
• Learn about the condition your loved one is facing and how it may affect his/her physical and emotional state.

Doing Our Part
We can assist caregivers to “fill” the prescription from Dr. Carmona by providing education and support. We can learn about the resources currently provided as part of The Caregiver Initiative and use them for our patients’ caregivers and for ourselves when we become caregivers in our personal lives. We can also contribute resources to The Caregiver Initiative that are specific to patients with ESRD and their caregivers.

One example of caregiver support is illustrated in the article in this issue of Nephrology Nursing Journal about advance directives by Amy Calvin and Lillian Eriksen. It is much easier to be a caregiver if you know what the person you are caring for wants, and discussions about those wants are better held before a crisis occurs. Drs. Calvin and Eriksen review the progress (or lack of progress) since the passage of the Patient Self-Determination Act of 1990 in both the general population and in individuals with ESRD and propose an Advance Care Planning Readiness Instrument to ease the initiation of the difficult discussions about end-of-life care. This is one way we can contribute to the lessening of caregiver burden and to improved quality of care for our patients.

Being a caregiver is rarely easy, despite often being done because of and with love. Finding ways to help caregivers provide care and also care for themselves is an important part of our work.

Beth Ulrich, EdD, RN, CHE
Editor
E-mail: BethUlrich@aol.com