Helping Military Family Caregivers, Part II: Recognizing Their Challenges

Family Caregiving, Military Families January 31, 2014 Print Friendly and PDF

All military family caregivers struggle to relate to their new identities as caregivers. For some, the term caregiver might conjure the picture of a grandparent caring for a spouse with dementia or a great aunt or uncle caring for an ailing, aging sibling. When someone points out that a military family caregiver is, in fact, a caregiver, he or she might respond with a funny look. Each military family caregiver sees himself or herself as a service member’s or veteran’s wife, husband, son, daughter, mother, father, sister, or brother. Each became a caregiver because of a relationship to a service member or veteran but, in many cases, had no idea how his or her life would change with the addition of this new caregiver identity. As a professional, make sure to spend time discussing how the role of caregiver has been added to the person’s existing role as spouse, child, parent, or sibling. Explain that along with this new identity comes new responsibilities and challenges, which will change throughout the caregiving journey. To help you help military family caregivers, this article identifies some challenges they commonly face, along with some important rewards they reap along the way.

Challenge: A Bumpy Start to the Caregiving Journey

Every military family member expects to get a call with the news that his or her service member is returning home. However, a military family member may not think about that person’s coming home with an injury. Military regulations define the process of notifying family members when a service member has been injured or wounded or has become ill, but in the age of social media, someone else might notify the family first, unofficially. Typically, this is a time of confusion with few facts. The first concern of a family member who will act as caregiver is reuniting with the service member to find out firsthand how he or she is. 

Once the caregiver is with the service member, who is in some type of medical facility, the caregiver will experience numerous challenges, such as learning medical and military jargon, possibly relocating, and recognizing that his or her life revolves around the service member’s needs. The caregiver will provide emotional support, which is essential to the service member’s recovery, but will not perform hands-on care. Staff members from the hospital or rehabilitation facility provide that type of care. The family member is in a secondary caregiver role, which typically involves taking notes, researching the service member’s medical condition, and asking lots of questions to become prepared to assume the primary caregiver responsibilities when the service member is able to return home.

Coming home is a big step for both the service member and the caregiver. The caregiver may not realize the extent of the tasks he or she will be doing to help the service member heal. For example, these tasks may include providing transportation, making meals, doing laundry, and managing medications.

As the service member heals and learns to live with both visible and invisible wounds, the caregiver is making adjustments too. In effect, the family is creating “a new normal” (Vulcan Productions, 2013).

Challenge: The Potential Length of the Caregiving Journey

Most military family caregivers take life a day at a time. As time goes by, however, they may begin to realize that they will be providing care for a long time. In fact, 43 percent of caregivers caring for seriously wounded, ill, or injured soldiers expect to provide care for the long term, with many realizing that they will care for their service members/veterans for the rest of their lives. One scenario in which a military family caregiver is likely to provide care for a long period is when his or her service member has become wounded or ill at a young age. In general, estimates show that military family caregivers provide care for much longer periods of time than other populations of caregivers of adults (Munoz, 2009; NAC and AARP, 2009; NAC, 2010).

Challenge: Complex Medical Tasks

Caring for a family member has become a more intense endeavor than it was in the past. This situation has arisen partly because advances in medical technology now require family caregivers to handle medical procedures that used to be performed by trained nurses in hospitals. Also, today’s military family caregivers care for service members who have received life-saving medical care for severe injuries, injuries that in previous wars might have resulted in death on the battlefield. As a result, caregivers often are expected to learn how to perform relatively complex medical procedures and to care for service members/veterans with multiple health issues, including invisible conditions, such as depression, traumatic brain injury (TBI), and posttraumatic stress disorder (PTSD). Furthermore, when PTSD is not recognized or diagnosed, a caregiver’s task is more difficult because he or she doesn’t get the medical assistance, resources, and supports needed to address and cope with the condition.

Challenge: Feelings of Exclusion from the Care Team

Many caregivers say that they don’t feel recognized as key members of their service members’/veterans’ care teams. In some cases, privacy laws may prevent medical staff from sharing information without the service member’s or veteran’s permission, or medical providers may refuse to include a caregiver in discussions about his or her service member’s or veteran’s medical condition. Without the caregiver’s involvement, health-care staff members may miss valuable facts about the service member’s or veteran’s health that only the caregiver can provide. Also, caregivers who are not part of the care team will not be able to listen to, interpret, and translate medical information discussed during appointments.

Health-care providers may not want caregivers to be involved for fear that they’ll ask too many questions. But a caregiver wants and needs to understand the service member’s or veteran’s medical condition so that he or she can provide appropriate care and support. In general, caregivers say that they experience a lack of support from medical professionals. This lack of support places caregivers in advocacy roles, in which they have to fight for the rights of their soldiers and other family members. This situation results in caregivers’ feeling that many medical providers don’t recognize the essential role a caregiver plays in the healing process of a service member or veteran or how becoming a caregiver affects one’s life.

Challenge: Stress and Apathy

All caregivers experience stress during their caregiving journeys. Research on older caregivers shows that roughly 16 percent to 18 percent report health problems as a result of caregiving stress, with many saying that they are in only fair or poor health. Despite this situation, they do not seek medical help until crises arise. Overall, caregivers do not take care of themselves. They report failing to exercise, eating poorly, missing medical or dental appointments, and ignoring their own health. Moreover, military family caregivers are two times more likely to report having a chronic health condition and to have higher mortality rates than noncaregivers (Tanielian, T. et al., 2013).

Challenge: Mental and Emotional Distress

The challenge of mental and emotional distress is more common for caregivers than they might like to think. Caregivers commonly experience grief as they adjust to their new caregiving roles. They grieve what they thought their lives would be, and they miss the people their service members were.

Depression is another emotional state common to caregivers, with studies reporting that 40 percent to 70 percent of caregivers experience depression, a much higher percentage than noncaregivers. What’s more, military family caregivers who care for service members/veterans with PTSD, TBI, or multiple complex conditions are at greater risk of becoming depressed sometime during their caregiving journeys than other military family caregivers. Depression is a treatable medical condition, and caregivers who experience signs of depression should seek medical help (Tanielian, T. et al., 2013).

Challenge: Secondary PTSD

Although little research exists related to whether family members of service members/veterans with PTSD develop secondary PTSD, evidence suggests that family members who live with or care for someone with PTSD do, in fact, experience secondary PTSD. That is, they experience similar psychological symptoms (depression, anxiety, lack of emotion, etc.) and behavioral symptoms (anger, isolation, hypervigilance, etc.) as those experienced by their service members/veterans. In addition, many military family caregivers report that little or no medical care or support is available to them, so those having such a condition often go untreated. Websites for and blogs of military family caregivers include numerous articles about secondary PTSD. On such sites, people share their experiences and become advocates so that caregivers in need can obtain medical care and supports designed specifically for them (Khodabakhsh, A., 2011; Vines, B.).

Challenge: Lack of Support

When many military family caregivers return to their communities after their service members/veterans are released from medical facilities, they are unaware of available services and resources or don’t know how to obtain them. In many cases, these caregivers did not live in civilian communities previously, or if they did, they had no need of supports. They don’t know where to begin in accessing what they need.

Caregivers living in the rural United States are faced with the additional challenge of having few or no appropriate supports nearby. In general, resources for military family caregivers are connected to Veterans Administration hospitals or medical facilities, which can be hours away from rural communities, making them difficult to reach during emergency situations or inclement weather. The few local caregiver resources in rural communities typically focus on older adults or individuals with disabilities. The mental health supports in rural communities can be limited and may not address the special concerns and needs of military family caregivers.

Often military families are geographically dispersed, with caregivers living far away from family members and friends who could be sources of support. Sometimes even when they return to communities where family members and friends live, military family caregivers experience little support because family members and others are reluctant to learn about the relevant medical conditions, especially complex conditions such as PTSD and TBI. These invisible conditions can be particularly difficult to understand because they play out in peoples’ lives in inconsistent ways (Tanielian, T. et al., 2013; Wounded Warrior Family Care Report, 2011). 

Challenge: Loss of Income

Reports on military family caregivers pinpoint loss of income as a major concern. The report “Economic Impact on Caregivers of the Seriously Wounded, Ill and Injured” estimates the average loss of caregiver wages and benefits for a 19-month period at $63,000. The more hours a caregiver spends giving care, the greater financial obligation he or she assumes. More than 40 percent of caregivers caring for severely wounded service members had new financial obligations due to their injured soldiers, and 37 percent had unmet financial obligations, mostly involving credit card debt. Like many people, caregivers depend on credit cards when income does not cover expenses (Christensen, E., 2009; Munoz, 2009; Tanielian, T. et al., 2013).

Challenge: Navigation through Multiple Bureaucracies

Military family caregivers find themselves becoming advocates for their service members/veterans as they learn about and seek resources from the Department of Defense and Veterans Administration. Both organizations have numerous relevant programs, eligibility requirements, and policies, but a one-size-fits-all model doesn’t meet the individual needs of all service members/veterans and their caregivers. This problem is compounded by the fact that the care needs of an individual—especially someone with TBI or PTSD—may increase or decrease over time, depending on his or her condition, recovery process, response to rehabilitation, and aging process (Tanielian, T. et al., 2013).

Besides governmental programs, numerous nonprofit organizations and volunteer and community organizations have become involved in providing resources and supports to wounded service members/veterans as a way of showing gratitude for their service. These programs, which have their own eligibility requirements, can add to a caregiver’s confusion about where to turn for support and how to access resources.

Military family caregivers need to recognize that supports and resources are available from multiple organizations but that obtaining those supports and resources will depend on eligibility requirements and consideration of their own skills, capabilities, and resources (Tanielian, T. et al., 2013).

Challenge: Military Culture

The military has an unwritten rule that asking for or receiving help is a sign of weakness. Service members/veterans typically do not want others to know about medical conditions involving depression, other mental health issues, or brain injuries. They may not accept the reality that they need medical attention. Sometimes, service members/veterans are able to cope with their medical conditions in the short term. As time passes, however, they may turn to unhealthful coping strategies, causing problems for their caregivers (Caregivers’ Guide to Battling Suicide on the Home Front).

In addition, the relationship a soldier has with his or her unit indirectly affects the caregiver. A unit is a soldier’s home base and involves relationships and dynamics that affect his or her health and well-being. A caregiver may become frustrated with a soldier’s commitment to the unit, which may involve a desire to be with the unit and not let down fellow unit members, even when such a commitment is not in anyone’s best interest. When conflicts arise with unit members, especially those in higher command, difficulties can ensue, creating uncomfortable and sometimes unmanageable situations. Such difficulties can relate to a lack of understanding or acceptance of the soldier’s medical condition, the realization that the soldier will be a part of the unit even if he or she can’t do what is expected, or the fact that the soldier is taking the place of another active soldier. One caregiver shared her experience of the unit leadership not following through with necessary paperwork to obtain medical services, financial reimbursement, and even medical discharge. She also stated that unit members, who had served with her husband on several deployments, felt that he was faking his invisible wounds and were adversarial and cruel to him. Fortunately, this scenario isn’t universal, but it does exist sometimes.

Although the military culture may pose obstacles, it is a known entity for soldiers and their caregivers. Consequently, when living in communities that have few military families and whose residents don’t understand their circumstances, soldiers and their caregivers may miss the military culture and their close relationships with individuals who have been in similar situations.

Challenge: A Service Member’s or Veteran’s Unwillingness to Accept Help

A military family caregiver faces an added challenge if his or her service member or veteran is unwilling to access needed support. A service member or veteran may be in denial about his or her condition, may want to hide depression or mental health problems, or simply may not accept the idea that he or she needs help. Some service members/veterans may feel that taking help would mean that they are weak and are not acting like soldiers. Lending weight to this notion is the fact that in 2010, 43 percent of the soldiers who committed suicide did not ask for help from a military treatment facility during the month before they died (Caregivers’ Guide to Battling Suicide on the Home Front).

In some instances, service members/veterans don’t want their caregivers to receive any type of assistance. Reasons for this attitude are varied. The service member or veteran may believe that what goes on in one’s family is not anyone’s business or that getting help is a sign of weakness. He or she might feel a loss of control or concern that the caregiver will change.

Benefit: Rewards of Giving Care

The challenges that military family caregivers experience as they care for their service members/veterans are signficant. However, many caregivers feel that the caregiving role has benefited them. In fact, one study reports that 94 percent of caregivers of veterans say that they’re proud of the support they provide and feel that their veterans wouldn’t be where they are today if not for their care. The same study shows that 78 percent of caregivers of veterans say that they have gained new knowledge and skills, and they find such learning rewarding. A majority also say that the caregiving role has give them a sense of fulfillment (NAC, 2010).

Military family caregivers are unsung heroes. They have shown over and over that they are critical to the recovery of wounded, ill, or disabled service members/veterans. As a professional, you may find yourself focusing on the needs of service members/veterans. Yet, it is essential to bear in mind that caregivers have their own needs. They need the support of all pertinent medical providers, social workers, community members, and others so that they can continue in their roles as healthy, strong, effective caregivers.

For more information about helping military family caregivers, see Helping Military Family Caregivers, Part I: Recognizing Their Similarities and Differences.


Contributor

Mary Brintnall-Peterson, Ph.D., MBP Consulting, LLC

Sources

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This work is supported by the USDA National Institute of Food and Agriculture, New Technologies for Ag Extension project.