Military Caregiver Heart of Recovery Initiative: A tale of two caregivers

By Ronald W. Wolf and Marianne Campano, Army MedicineMay 18, 2018

Military caregiver
(Photo Credit: U.S. Army) VIEW ORIGINAL

More than 44 million Americans care for a family member, friend, or neighbor who is wounded, ill, or injured.

Within this population of caregivers is a group that has been identified for additional support--military caregivers. A military caregiver is a Family member or friend who provides assistance to a wounded, ill or injured Service member with activities they once did on their own, but are no longer able to do for themselves.

The Military Caregiver Heart of Recovery Initiative is interested in reaching this group-- and is conducting a survey to understand their needs. On May 14, the Army Public Health Center launched a caregiver survey at Fort Bragg, North Carolina; Fort Sill, Oklahoma; Joint Base San Antonio, Texas and Joint Base Lewis-McChord, Washington. If you are providing support to a Soldier, Sailor, Airman or Marine at one of these installations, you are encouraged to complete the survey.

Your participation is critical because it will help the Army understand how to best standardize support and link caregivers with training, and medical, financial, legal, career, spiritual and other services. You can find the survey at: http://militarycaregiver.health.mil/survey.

Military Caregivers are a High Priority for the Military's Senior Spouses:

In 2015, some of the military's most senior spouses, including Mrs. Ann Campbell, Mrs. Karen Halverson, and Mr. Ray Horoho linked up with leading caregiver organizations and wrote a paper identifying the need to better synchronize support for military caregivers. To this end, a task force convened to explore ways to improve the lives of military caregivers during their transition to civilian life or back to Service.

A Heart of Recovery team member participated in two interviews with military caregivers with the intent of raising awareness about what caregiving is. In passing along their stories, they hope to reach other caregivers to let them know they are not alone, to bolster their strength and share valuable resources.

The military caregivers interviewed provide care for active duty Service members. To ensure privacy requirements, they are not being identified with their real names, but will be referred to as Anna and Susan.

Caregiver Anna:

Anna is a spouse whose husband has been a Soldier on active duty for 13 years and has needed caregiver's assistance for the past three years. The family lives in a military community.

The Soldier was injured in an explosion that damaged his hip, knees and back. He has issues with post-traumatic stress disorder, and about four months ago was also diagnosed with a pulmonary embolism. In this family, the chief caregiver issue is the PTSD.

The PTSD issues are most stressful for the family. "Give him some space," was the phrase used when, at times, the Soldier's behavioral issues forced other family members to go to another room. Family outings, such as going to a restaurant or the movies, require great caution. Crowded rooms and loud noises can trigger responses such as crying or anger. Such responses are best managed at home, and as a result, staying home is often the only choice.

Anna indicated she could not handle the role without the assistance of other family members (in this case children aged 20 and 17). She works a job in the evening and that's when other family members are needed in the role of caregiving. She said she admired anyone who provided care without assistance and admitted she needed a break on occasion, describing 24-hour care as "a big challenge."

Anna, who was not born in this country and has no family in the United States, has only her children for assistance. She frequently feels a lack of support.

There is also some hesitancy to leave her husband alone, although Anna mentioned that a break from caregiving allows for the opportunity to recharge her caregiving commitment. Recently, her physicians and counselors began recommending some additional independence on the part of the Soldier, which is encouraging.

When asked if there is anything that she wants the public to know about caregiving, she said, "There are going to be invisible wounds, don't judge people by their outward appearance."

Caregiver Susan:

In this case, the Soldier was in a motorcycle accident nearly one year ago. The injuries left him in a coma with severe brain injuries, and he remained an inpatient for nearly 10 months. He had to relearn to talk and walk. In the polytrauma center, caregivers receive instruction on the key elements of caregiving and even receive a certificate of completion for learning caregiving skills.

The instruction included such things as how to apply bandages and administer medication, but also information on traumatic brain injuries and how to care for patients with TBI.

During the hospitalization, Susan, the caregiver, who lived in another state, was burdened with significant time spent traveling back and forth from the hospital.

Caregiving began almost immediately for Susan as she learned to help administer medicines and assist with personal hygiene. For months, she spent a lot of time sitting bedside in the hospital. It was necessary to learn some basics of monitoring the Soldier's medical status to know when to call for assistance.

At the time of the interview, he had only been home about two weeks.

Help for the Soldier is still needed, however. Getting in and out of bed; in and out of the shower; getting dressed, especially fastening buttons and zippers; and most tasks that require fine coordination remain difficult and cannot be done without assistance.

This family has three children (aged 13, 15 and 17). Susan received and was thankful for assistance from family and especially the Soldier's unit with care for the children. The unit provided hot meals and kept the children on schedule for their responsibilities. "They were there with us the entire time," Susan said.

The oldest child has also stepped into the "mom" role by watching the younger siblings, making sure homework is done, helping with cooking and laundry, and managing related household duties.

Susan and her family are likely still early in the caregiving process. That did not seem to be a problem for Susan, however, who stated she has been a caregiver since she was 10 years old and is now 40.

Susan did report that "you need to know your limitations on what you can do for yourself" and when you need to take a break. She is a Lupus carrier and takes medication for it; she is aware of the affect stress may have on Lupus complications.

"Be strong and supportive," Susan said, but "don't be afraid to ask for help. If you ask, the help is there."

Impact of Caregiving:

The effort caregivers provide is often unrecognized. The burden of caregiving is receiving focus from a number of organizations who want to ensure military or other caregivers are recognized and supported.

According to the 2014 RAND Hidden Heroes Report, for example, post-9/11 military caregivers experience worse health outcomes, greater relationship strain and more workplace problems than pre-9/11 or civilian caregivers.

Nearly 40 percent of post-9/11 caregivers met criteria for depression, which is nearly four times higher than non-caregivers, and twice as high as pre 9/11 and civilian caregivers.

RAND also reported the value of the role provided by military caregivers saves the United States millions of dollars in healthcare costs and allows millions of veterans to live at home rather than in healthcare facilities.

An American Association of Retired People report in 2015 placed the economic value of family caregiver contributions at $470 billion.

The personal toll of providing this caregiving assistance is high; the impact of caregiving can often lead to reduced or lost income and high emotional stress. Especially noteworthy is the effect caregiving has on the health of the military caregiver over time.

The effects of social isolation on military caregivers--a common consequence in some areas--is also a matter of concern. Depression and a risk of higher death rates from a range of causes are associated with social isolation.

Military Caregiver- Heart of Recovery Initiative:

The Heart of Recovery Project seeks to identify, empower, educate and support the caregivers of active duty and Reserve Service members to improve their health and well-being and to reduce the risks associated with caregiving. Results from the survey described previously will determine the way ahead to improve the lives of military Caregivers.

The Army Medical Command has assembled a task force of multiple partners across the Army. They have been working with representatives from the Navy and Air Force, Secretary of Defense Warrior Care, and Military Caregiving Service Organizations to learn about their services and consider ways to better synchronize the available resources to meet Caregiver needs.

The team's goals include helping to achieve a healthy, fully supported, and well-trained military caregiver population.

Heart of Recovery especially wants to achieve better health outcomes for military caregivers and better health outcomes for wounded, injured or ill Service members.

Where to Reach Out:

Listed below are some resources for military caregivers:

The Heart of Recovery website includes useful resources, and you can find the anonymous Caregiver Survey on the site: http://militarycaregiver.health.mil/.

The Ombudsman serves as a local resource, facilitator, and problem solver for Service members and their Families, and can help caregivers get the resources that they need.

For those caregivers that aren't near an installation with an Ombudsman, each branch of Service has a hotline number (listed below) to provide assistance. The following phone numbers are available for military caregivers. Note: If you are experiencing a medical emergency, call 911 or contact your local hospital or Military Treatment Facility right away. If you call the numbers below, do not provide personally identifying information other than your name and phone number or email address. If additional personal information is required to assist you, the hotline will request it after your initial contact.

ARMY WOUNDED SOLDIER AND FAMILY HOTLINE: 1-800-984-8523: Stateside DSN: 421-3700 | Overseas DSN: 312-421-3700

E-mail: mailto:usarmy.jbsa.medcom.mbx.medcom-wsf-support@mail.mil

NAVY SAFE HARBOR-SEVERELY INJURED SUPPORT

877-746-8563

AIR FORCE WOUNDED WARRIORS (AFW2)

800-581-9437

GENERAL ASSISTANCE AND CRISIS LINES

Military One Source: 800-342-9647

National Suicide Prevention Hotline: 800-SUICIDE (784-2433)

Veterans Suicide Prevention Hotline: 800-273-TALK (8255

Related Links:

Warrior Care and Transition