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Caregiver Resources at Your Fingertips

Reprinted from PN April 2009

When life becomes a balancing act, help is at hand!

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The alarm sounds, and Joan feels as if her head just hit the pillow. It is 4:45 a.m., and she must dress and quickly drink her cup of black coffee before she bathes and dresses her husband Sam, who sustained a cervical spinal-cord injury two years ago.

Joan and Sam finish their morning routine at 6:12 a.m., and she must then wake, dress, and feed their two school-age children before 7:45. Once the children leave for school, she begins to juggle working from home, answering e-mails and telephone calls, and assisting her husband with activities of daily living such as turning on his computer, administering his medicine, and preparing his meals.

At 2:17 p.m., Joan sits down to quickly eat her lunch, and the telephone rings. She instantly remembers she had a 2:00 p.m. appointment for a haircut. Unfortunately, the demands of Joan’s daily schedule pushed the appointment to the back of her memory. Although she desperately wanted to leave the house and take a break from work and family, she was not able to do so as she didn’t arrange for someone to assist Sam or collect the kids from school.

Joan feels overwhelmed and frustrated.

The “Sandwich” Generation

According to the National Caregiver Alliance, Joan is one of approximately 44 million people who care for individuals dealing with an illness or disability(1). When individuals provide consistent care and support for another person, they are caregivers.

Caregivers provide physical care to restore or maintain the health of care recipients. It is common for caregivers to assist with responsibilities involving activities of daily living, medical care, and emotional support. While it is important for them to remain up-to-date on pertinent medical conditions and current care standards, it is equally important for them to maintain their own physical and mental health. Caregivers must make a commitment to care for themselves and their personal needs as individuals.

Today, caregivers juggle many responsibilities outside the caregiver role. Often, they have additional responsibilities as spouses, parents, siblings, professionals, or community leaders. These people are commonly referred to as the “sandwich generation—individuals between 36 and 64 years of age that care for both their immediate families and an aging, ailing, or disabled family member.”(2)

With the combined demands of working and managing a family, it is easy for them to forget about their personal needs and focus on pleasing others. The American Association of Retired Persons (AARP) reports that many caregivers experience “depression, stress, guilt, or anxiety at higher rates than non-caregivers.”(3)

When caregivers become overwhelmed or stressed, they often experience caregiver burden. This is essentially physical and emotional strain as a result of caring for and providing daily assistance with the personal and health-related needs of another individual (care recipient), who is not able to live independently because of an illness, a disability, or the frequently consuming effects of aging.

Managing the stressors of caregiving is a delicate balance between giving care to another person physically, mentally, and emotionally, while simultaneously preserving enough energy to maintain personal health. To accomplish this balance, it is important that caregivers seek assistance and build support networks within their local communities as well as with their healthcare professionals, friends, and family members.

Caring for Veterans

When caring for veterans enrolled in the Department of Veterans Affairs (VA) healthcare system, caregivers have access to caregiver support services through VA. One type of assistance for enrolled veterans and their caregivers is respite care—“a temporary break of the caregiver’s responsibilities.”(4) Respite-care eligibility depends on the VA medical center and must be scheduled in advance with the center’s management. Care is provided in institutional settings or the veteran’s home based on individual respite programs.(5)


Another VA resource is Adult Day Health Care. This program relieves caregivers of their duties during the day for a specific amount of time: “Adult Day Health Care provides health and rehabilitative services to veterans, in a group setting, while the caregiver is not present.”(6)

Caregiver assistance programs exist that bring VA healthcare services to veterans’ homes. For instance, the Home Health Aide program allows veterans to purchase health services through VA, which include healthcare professionals that make routine visits to the veteran’s home. Home Based Primary Care (HBPC) is another program that sends an interdisciplinary medical team to provide long-term primary care to chronically ill veterans in their homes. Home-based programs eliminate traveling and thus make routine medical visits more convenient for caregivers as well as care recipients.

VA is continuously developing caregiver support services to assist family members caring for servicemembers returning from the current conflicts in Afghanistan and Iraq. The agency is currently implementing new innovative programs to improve and increase support services provided to veterans’ caregivers.

In December 2007, VA invested approximately $4.7 million for caregiver-assistance pilot programs(7) to provide comprehensive education, training, and support for caregivers. Although VA is unable to treat family members outside of treatment for the veteran, VA does provide family and marital counseling and caregiver support groups for caregivers that are spouses of enrolled veterans.(8) Caregivers should contact their nearest VA Spinal Cord Injury Center or their local VA facility and research the various caregiver support benefits to determine if their care recipient is eligible for them. 

Care Outside VA

Beyond VA, a national caregiver community welcomes and encourages all caregivers to use their services and resources. Through diligent research and investigation, caregivers can identify and connect with networks that best address their individual needs. Following are a few organizations that provide caregiver resources online: 

- The National Family Caregivers Association (NFCA) offers educational resources and advocacy to help protect the rights and health and well-being of family caregivers.(9) NFCA coordinates caregiver interaction and networking relationships that allow family caregivers in similar situations to share experiences and develop new caregiver relationships and support systems. NFCA also provides caregiver information through a bimonthly article in the Caregiver Connection section of PN. For more information, visit www.nfcacares.org.

- The National Alliance for Caregiving is a nonprofit coalition of organizations committed to supporting caregivers through policy development and research. The alliance produces the national caregiver survey and partners with NFCA to maintain the caregiver online resource, Family Caregiving 101. This Web site includes  information to help caregivers handle their responsibilities and covers issues such as respite care, home care, and educational literature for caregivers.(10) The Caregiver 101 resource page is at www.fami lycaregiving101.org. For more information about the Alliance, visit www.caregiving.org.

- The Medicare Caregiver Information Web site assists with medical billing, medical provider options, and general healthcare for caregivers and care recipients. The Caregiver Information Web site recently launched the “Ask Medicare” program, which consists of live Internet Webcasts and allows caregivers to ask healthcare professionals questions about Medicare services and caregiving. To learn more about this program and Medicare tips for caregivers, go to www.medicare .gov/caregivers.

- AARP is a good place to identify caregiver support resources, but it is also a source of information on the more formal logistics of caregiving: estate planning, long-term care planning, and family budgeting. AARP also provides information on group caregiving, home remodeling to accommodate care recipients, and family-health history. On the AARP caregiver Web page, caregivers can access the “caregiver tool kit,” which has useful tools such as financial projection calculators that help with financial planning and forecasting annual caregiver expenses. The AARP caregiver Web page is at www.aarp.org/family/caregiving.

- The Johnson and Johnson Corporation created a caregiver support initiative that includes an online resource guide entitled “Strength for Caring: A Place for Caregivers.” This resource is intended to help caregivers maintain their personal and physical health through links to community support resources as well as tips on how to care for various medical conditions and manage the pressures of caregiving. Visit www.strengthforcaring.com.

- The National Respite Network uses the National Respite Locator Service to help caregivers locate respite services in a specific state and community. The National Respite Coalition Web site is www.archrespite.org.

Caregivers must remember they are not alone and cannot do everything all the time. The networks listed in this article are a few among many resources within the caregiver community that are committed to helping caregivers live healthy, well-balanced lives.

In the hustle and bustle of everyday life, it is often easy to forget or overlook personal support resources such as friends, family, and the church community. More personal methods of managing the stressors of caregiving include journaling, exercising, meditating, or just allocating time to do what is enjoyable.

Joan recently connected with a caregiver support group that meets once a month, and she finds the exchange of ideas and experiences—and new friendships—extremely rewarding. She and Sam are learning they need “self” time at least once a month, and they crafted a schedule that allows them such time. Ironically, occasionally spending a few hours apart has led Joan and Sam to rediscover the importance of sharing quality time just as husband and wife.

Contact: AletheaP@pva.org.

References

(1)       www.caregiving.org/resources

(2)       Social Workers, Help Starts Here; http://helpstartshere.org/Default.aspx?PageID=1340

(3)       www.aarp.org/health/staying_healthy /prevention/caregiver_health.html?print=yes

(4)       Supporting Veterans’ Caregivers: A Frequently Asked Questions Guide, VHA Office of Care Coordination Caregiver Guideline                      Group / Department of Veterans Affairs, November 29, 2006

(5)       Ibid., p. 18

(6)       Ibid., p. 15

(7)       www1.va.gov/gov/opa/pressrel/pressrelease.cfm?id=1428

(8)       www.va.gov/healtheligibility/familymembers/#cg

(9)       www.nfcacares.org/about_nfca

(10)     www.familycaregiving101.org/help

 

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Caregiver Resources at Your Fingertips

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