Beginning the Journey
Relationships and Communications
Relationships and Communications: Spouse/Partner
Relationships and Communications: Child
Relationships and Communications: Parent
Relationships and Communications: Extended Family and Friends
Caregiving for Visible and Invisible Injuries
Continuing the Journey: The Official Support System
The role of caregiver is an important one, filled with encouraging and challenging moments. And as with many aspects of military life, it is best to be prepared—mentally, emotionally, and logistically—for what will be a new and, at times, overwhelming range of responsibilities.
Fortunately there are substantive and constantly evolving programs available to give caregivers support and direction when needed. This chapter is an introduction to caregiving— for those who may take on the caregiving role suddenly and soon, or for those who might in the distant future—and to the many tools and resources that can ease your journey.
What is a caregiver?
A caregiver is someone who provides personal care, emotional support, and advocacy for those needing very personal help for any period of time during recuperation and into the new normal. Those who require care are most often injured or ill service members and veterans, who usually need assistance in activities of daily living such as bathing, eating, mobility, or communication. Caregivers can also often assist by way of managing medication, attending medical visits, and maintaining medical documentation.
“I never knew that my help with medications, researching treatments, or speaking up for my husband was being a caregiver. I only knew that he needed my help, and that I had to be there for him. His Alive Day was the day I became a caregiver.”
Active-duty service members may need care during treatment and rehabilitation from injuries or illness, whether they occur in combat, training, or in transit to service. Additionally, some veterans may require a caregiver as the result of worsening chronic conditions or aging. A sandwich caregiver is a person who supports more than one person, such as a spouse caring for a child in the Exceptional Family Member Program (EFMP) and also for a wounded warrior. Another example would be a military spouse who is simultaneously taking care of an aging parent and a returning service member.
Caregiving is a journey
No two service members experience identical injuries, illnesses, or rehabilitations. Clearly, then, no two caregivers have the same experience—even among care for similar health conditions. However, there are some common milestones on the caregiver’s journey, and it’s valuable to have an overview of the process to ahead.
Your family’s experience will be mapped out together with your service member’s medical care team. Below is a typical timeline from injury through reintegration into the home community.
If your service member is injured or becomes suddenly ill, there will be a rapid shift in your daily life. And, if you’ve taken the time to prepare for the possibility of taking on a caregiving role, you will be more readily able to respond. Organization is key to managing the sudden or unexpected.
If you have previously created an emergency or contingency plan for your family or household (strategies for emergency preparedness were discussed in the pre-deployment chapter), begin by considering what additional information will be useful to those who may take your place when you are occupied with caregiving responsibilities. For example, add information regarding yard maintenance, bill payments, pets, mail delivery, and standing obligations. If you have children, their needs must be considered as well. Putting this information on paper will allow you to focus on your service member and leave the rest to designated friends.
If your service member is injured, you will receive notification through the proper official channels. However, in this age of connectivity, you may also hear from others informally (through social media or other word of mouth), and this may be a confusing time. Once the facts are known, your primary contact will be your service branch program liaison (Army Wounded Warrior Program [AW2], Marine Corps Wounded Warrior Regiment, Navy Safe Harbor, Special Operations Command Care Coalition, or the Air Force Wounded Warrior Program).
“My call came from a friend in my son’s unit. The official call came six hours later. We had an Emergency Plan; so, while I was not prepared, I was ready. Somehow I got myself to Landstuhl and traveled with my son to Walter Reed. The people on my Emergency Plan were amazing, and looking back, I don’t know how we managed it—but we did.”
Emotionally, there are many challenges ahead. It is absolutely normal to be shocked, frightened, angry, confused, and overwhelmed. There may be significant confusion and conflicting messages, which will become untangled in time. Rest assured that you will receive instructions from the command and have the ability to ask questions and have them answered. Remember to keep good notes. And, don’t forget to rely on those closest to you for support.
Practically speaking, you may experience a sudden introduction to the military medical system, an adjustment to the injuries or illness of your family member, and an acute need to learn the hospital culture and language. You will probably also undergo a temporary relocation to provide care. This is where your emergency plan will be helpful, as the sudden dislocation and numerous tasks can be overwhelming. Being thrust into an unknown situation with a new set of acronyms and people is not easy (an abbreviated list of acronyms commonly used in the caregiving community is provided at the end of this section). These changes require adjustments for both you and your service member.
“My world stopped when the call came in. Once my daughter arrived at Walter Reed, I was thrust into a world unknown. I knew next to nothing about military culture or language. But, I knew she was in a coma and unable to communicate for herself. That time period is a blur, and I learned about the details much later. I carried a notebook and wrote everything down because I would have fallen apart without a plan to make her healthy again. Those notes helped us too many times to count.”
Suddenly your whole world is the hospital and your entire focus is your service member. It is not uncommon for a service member to be injured in-theater and arrive in the States as quickly as forty-eight or seventy-two hours afterward. You will most likely have a significant medical learning curve and encounter a flurry of logistics that must be managed immediately.
For now, the most important emotional connection is with your injured spouse, adult child, or friend. Initially, this can be a numbing experience. However, many have gone before you and these caregivers will often become your best source of support and information. Depending on the type of injuries, your service member may exhibit a wide gamut of emotions— or may not be able to communicate at all. Remember, he is also experiencing a possibly bewildering sense of reality, so warmth and reassurance is crucial. Studies show that the presence of a compassionate caregiver who advocates and collaborates with her service member promotes better physical and mental health outcomes.
Your service member will gain access to exceptional care at Walter Reed National Military Medical Center or other intake hospital, and you will receive specific information about the hospital process and the specific service branch liaison for your injured service member. You will receive large amounts of information in the early days and you will have many questions. Though this may be a very confusing time, focus on taking each day by itself and remember that small steps of progress add up to recovery. The medical team will work closely with you as they map out a Comprehensive Care Plan (CCP) for your service member. As the caregiver, you are considered an integral part of that team.
“A triad? I had no idea what that was, but I learned that it’s the medical team, made up of the PCM (Primary Care Manager), the NCM (Nurse Case Manager), and the Squad Leader. Usually only the Squad Leader rotates while you’re in care, so this team is very important to your warrior. Stay close here and learn to communicate well, since it makes a difference if you work together.”
It is very important for you to keep excellent notes and records during the healing journey. Observe the effects of medications, and research their use, learn as much as possible about the medical conditions (physical trauma as well as mental health injuries), and educate yourself through the various programs offered by the hospital. Your observations and information are extremely valuable in the care and modifications to care of your service member. Additionally, a patient advocate and/or programs administered through the National Intrepid Center of Excellence (NICoE) can also play an important role in the acute and recovery phases. Make sure to ask your hospital staff about all your options.
As a caregiver, you will help your service member achieve greater independence and capability as her recovery progresses. Know your service member, reasonably challenge her and yourself, and the milestone goals you set forth will increase her self-confidence as they are achieved.
“I may never be able to do everything I did before my injury, but I’m going to work to be the best that I’m able to be now”.
Walter Reed or other intake hospital
Walter Reed is currently launching a new program that centralizes all vetted resources for the family of a recovering service member in a closed iPad application, which is for your use while at the hospital. This is anticipated to be customized for other intake hospital specifics in the future. Part of the educational experience while at the hospital is accessing the wisdom and experience of other caregivers. (You may also hear caregivers referred to as Non-Medical Attendants, or NMA’s, in your branch of service). This close communication and shared understanding with others caring for their service members provides peer support and can help you maintain a more balanced perspective if you become fatigued or feel overwhelmed.
It is crucial to maintain comprehensive records during the entire course of your service member’s recovery since there will be an evaluation process for either continuation in the military or separation and retirement from service. Documentation and communication notes are very important, and many caregivers find that a three-ring binder is a good organizational tool for paper records. You are also encouraged to keep electronic records and images on a thumb drive or file as the medical records process becomes more digitized. Documents you should collect and save might include:
- Medical appointment notes
- Wounded warrior command correspondence
- Physical therapy instructions
- Care team correspondence
- Calendar reminders
- Specialist referrals, noting purpose
- A full medication list
The many faces of caregivers
In most cases, multiple family members can be transported to the medical treatment facility where the service member is sent (up to three members). However, once the service member is in outpatient care, generally it is only a single person assigned as a Non-Medical Attendant (NMA). The NMA is provided lodging with the service member, as well as a per diem. These orders are extendable each month and are renewed or cancelled based on professional opinion of the care team.
In the past, the majority of policy and programs were designed for spousal caregivers, but there is now increased recognition of the rising number of parent, friend, or other family caregivers. Among the types of caregivers, there are both similarities and differences in the caregiver experience. There are also variations in each service branch or status (active, National Guard, and Reserve). All caregivers are very important to the recovery and rehabilitation of the service member, and full recovery may take many months or even years, depending on the severity of the injury or illness. It may help you to consider a team approach to caregiving, and using all appropriate resources will help you on this journey.
Spousal caregivers are military dependents and will continue to receive medical benefits while caregiving. However, working spouses may not be able to continue their professional work or education and this adjustment can be particularly difficult. “Life interrupted” coupled with job or education losses can add layers to the emotional trauma of your spouse’s injury, and communication between you is more important than ever as you both adapt to new circumstances.
“We were at Walter Reed for almost three years. At first, I thought my husband would be in the hospital and outpatient for maybe six to eight weeks. Then, it was another six months. Sometimes I thought that we weren’t told of the time because it would have broken us in the beginning. Now I know that everyone heals ata different pace, and it’s not possible to know ahead of time. I’m glad I didn’t know the final count!”
Close quarters, multiple appointments, physical therapy, occupational therapy, vocational rehabilitation, exhaustion, and group living all can take a toll on your relationship with your service member. Intimacy with your partner may be challenging due to injuries or the hospital environment, and frank, open communication between couples and their medical team is encouraged. Setting boundaries and establishing a new normal between caregivers and their service member is also important. There is a deepening understanding among medical staff that personal relationships and physical issues are eased through gentle, supportive communication.
“Early on, no one was talking about the practical and important needs of couples. But marriage is about closeness, and we had to work on regaining trust in one another after things physically changed. Over time, other wives began to talk about these deeply personal issues, and I knew I wasn’t alone.”
Many injured service members had anticipated a twenty- year career in the military and this may now no longer be possible. This change can be felt as an enormous loss.
You both may be grieving the loss of what you’d intended for the future. In many cases, talking with professionals or a fellow battle buddy may help in the gradual realization that the future has changed. Spouses find that there can be relationship strains while both adjust to these new circumstances, and counseling can be a constructive way to address your new feelings and concerns.
Children need age-appropriate communication throughout the recovery process. Through the service branch liaisons, you can request assistance in materials, counseling, and activities that help children understand, verbalize, and accept the changes in their lives. A majority of military children attend public school, but teachers and school advisors are often unfamiliar with the military. Nearly everyone will be supportive, but they may not know how to help. It is a good idea to make your children’s schools aware of the situation and to ask for the help you may need in forming a unified message. A reasonable sharing of information encourages family cohesion and lessens fear of the unknown. Also, it is important to take full advantage of child and family programs at the hospital
(for example, Austin’s Playroom for children six to twelve years for up to twenty-five hours/week at Walter Reed) and in the community with numerous nonprofit organizations that provide grants for camp, sports, arts, and tutoring, as well as local drop-off events for young children near the hospital campus. Several of these resources are listed in the resources chapter of this handbook.
“Our children were amazing. They were the most honest and direct in talking about the injuries. ‘What did they do with your arm? Will it grow back? Daddy, why are you mad at me?’ It’s so important to be honest with them.”
Parent caregivers have a slightly different dynamic than spouse caregivers. As non-dependents, medical care and benefits are not automatically provided, though this is changing and improving. For previously physically fit and fully independent service members, it can be both comforting and unsettling to be dependent on a parent or parents for care. For the parent, living with your adult child may be something you left behind years ago. Group living can also be a tough adjustment for parents. Fortunately, newly designed living quarters at Walter Reed and elsewhere help ease this adjustment.
“Living with my son took some getting used to and we both chafed at the weird situation as he began to recover. Yet, without my help, hewouldn’t be as far along as he is. Today, ourrelationship is stronger than ever, and looking back, it was hard, but amazing.”
Parent caregivers may be nearing retirement age, so professional and/or financial issues are very important. There may also be significant grieving for the loss of professional opportunity and fulfillment and sorrow for the changed circumstances of their child. All of these tensions must be managed as you forge a new and different relationship with your service member.
Parents who are married must leave their spouses while caring for their service member while on base and parents who are estranged must find ways to put aside their own relationship issues to prioritize their service member. The added toll of trying to explain the sometimes complicated military system to a spouse who lives elsewhere is demanding. At times like this, you may feel as though your world has become a size too small. However, parent caregivers are also given access to mental health support and both spouse and parent caregivers may also take advantage of community resources to gain a broader perspective if they need it. You may also qualify for utilization of the Family and Medical Leave Act. Here is a Department of Labor fact sheet which will help familiarize you with the benefits of the FMLA: www.dol.gov.
“My husband had no patience or understanding of the day-to-day caregiving, even after a three- day stint in my shoes. He thought he could change the hospital, clear up the red tape, and move things along better than I could. He made me feel inadequate. After two more brief stays, he finally saw the bureaucracy of such a large system, and while not accepting it, he knows it’s not as simple as he first judged.”
You could also be in the situation where your service member’s spouse becomes his main caregiver, in which case your role, as a parent, will be no less important. Your son or daughter in-law will need your full support in order to successfully care for your child. Be open and honest with your child’s spouse, but be sensitive and allow them space to shift into their new role.
When any caregiver visits home, they often find that their home community and even the extended family have no accurate idea of the responsibilities they are shouldering. Remember that many Americans assume that all care and support of your service member is being handled by medical professionals. Even though there is a growing understanding of the critical role of caregiving, do not be surprised if you are educating others as you explain what you do day after day. It’s a good objective to share your experience and to spread awareness, but remember to protect yourself as much as needed. Caregiving is a sometimes draining experience and you must set the priorities for yourself. You can identify ways to disclose your story on terms you are comfortable with.
Many caregivers have found that understanding the timeline of care and obtaining treatment for physical injuries is more straightforward than for invisible injuries (PTSD and TBI). Emotionally, you will want to educate yourself on both conditions, since this knowledge will help you communicate better with your service member. As you’ve read in other chapters, TBI may be mild or severe, and there are some challenges to communication (short temper, loss of short- term memory, frustration, and lack of verbal filters are some examples) with both PTSD or TBI that may be confusing or hurtful if you are not prepared. It is possible that your service member may verbally lash out at you or behave differently than what you were used to; this is normal, and these behaviors may improve over time. Persevere in obtaining help for both you and your service member to address and overcome these challenges.
“My husband has a TBI and short-term memory loss. He forgets to turn the stove off. He forgets his meds and would miss appointments if we hadn’t worked out a smartphone alarm reminder system. He still lashes out in anger sometimes due to frustration. Without the counseling for his TBI, we wouldn’t be married today. He has learned to take a deep breath, stop, and think before he says angry words. It has helped us.”
This can be a very stressful time for a family, and you will need to be proactive in seeking help. Ask for what you need and seek out help for yourself and for your children in understanding this very unusual time. With dedication and good communication, this can be a very bonding experience for a family, and there are many resources to help.
Federal recovery coordinators and regional recovery coordinators
Active Duty (DoD)
There are two types of specialty support coordinators available for service members and caregivers: Federal Recovery Coordinators and Regional Recovery Coordinators.
Generally, Recovery Care Coordinators (RCCs) are assigned or requested for those with less severe injuries and assist service members and their families by providing non-medical support and guidance. These highly trained professionals are vital contacts to assist you in coordinating care and appointments, learning about certain medical conditions, and understanding recovery expectations. RCCs are managed by the DoD and will work closely with you to obtain the appropriate support required.
Federal Recovery Coordinators (FRCs) are assigned (or may be requested) for severely injured service members. A FRC will work with the integrated care team, service member, and caregiver to develop a Federal Individual Recovery Plan (FIRP). FRCs, managed by the VA, are invaluable resources for the family during the recovery and transition period.
“Our FRC was amazing. She talked me throughevery step of the process and was available atreasonable hours. Most of the time, she reachedout to me before I lost it, and that meant the world to us.”
Transition from active duty to veteran status
Transition Process: IDES, MEB, PEB
If the injuries or illness sustained are deemed incompatible with continued military service, you and your service member will work with a team of experts to obtain benefits ratings through a process known as Integrated Disability Evaluation System (IDES). You will be guided through this process by a team of experts and the service member will be evaluated by a Medical Evaluation Board (MEB) and a Physical Evaluation Board (PEB). During this time, the MEB and PEB will determine the extent of recovery, the long- term effects of the injuries, and the future continuation or separation from the military.
“This part of transition was rough. We were tiredof our lives on hold, and of waiting for exams,meetings, and reports that had to be re-done due to mistakes. Don’t shirk this job—it’s the only way to ensure your warrior gets the ratings and benefits that he or she has earned.”
This process is critically important to conduct carefully, as eligibility for lifelong benefits are determined during this process. We encourage service members to utilize all the resources available to them and their caregivers to assist with this very necessary process. Asking questions about things you don’t understand and keeping good records are musts. Additionally, there are many veterans service organizations (VSO’s) that provide volunteer legal and benefits experts to assist.
Once completed, the service member now transitions to veteran status and care will be provided through the VA. As a veteran caregiver, you will now be provided access to additional services, benefits, and opportunities.
Veteran (VA) Once the transition process is complete, a caregiver can access www.caregiver.va.gov and apply online for inclusion in the Comprehensive Assistance for Family Caregivers Program by answering a series of questions. This program extends a stipend for family caregivers who are caring for veterans. There is an application process, training and other requirements in order to enroll. For questions, the VA can be contacted at 1-877-222-VETS (8387).
Veterans must be enrolled for VA health services to qualify, and must be in need of personal care services because of an inability to perform one or more activities of daily living and/or need supervision or protection based on symptoms or residuals of neurological impairment or injury (e.g., traumatic brain injury, psychological trauma, or other mental disorder) incurred or aggravated in the line of duty on or after September 11, 2001.
Services for this group include: monthly stipend, travel expenses (e.g., lodging, per diem while accompanying veterans undergoing care), access to health care insurance (if the caregiver is not already entitled to care or services under a health care plan), mental health services and counseling, comprehensive VA caregiving training provided by Easter Seals, and respite care (not less than 30 days per year).
Caregiver Support Line 1-855-260-3274
In 2010, the U.S. Congress passed legislation entitled Special Compensation for Assistance with Activities of Daily Living (SCAADL). A Department of Defense (DoD) program, the SCAADL provides a special monthly stipend for service members who have a permanent catastrophic injury or illness.
For more information about this new benefit, and how to apply, go to www.warriorcare.dodlive.mil, call 1-571-256- 4516, or email email@example.com. A description of the program is on the MyArmyBenefits website at myarmybenefits.us.army.mil.
The DoD program is available until ninety days after separation from active duty. Ideally, as one transitions out of service there would be an application to the VA Caregiver Program as the service member transitions from the DoD to the VA.
“Sometimes my DH’s (dear husband’s)frustration at his PTSD would grow to benearly out of control. This is when we verballyhit our ‘Stop’ button and followed our plan ofcommunication. He sat down on one end of the couch, I sat on the other, and we talked aboutwhat I saw happening. We had also agreedon next steps if we could not agree or work itthrough alone. This has been a lifesaver for us.”
As a veteran caregiver, continued communication, planning, and evolving practical changes for ease of household and daily living tasks remain important. This is a very good
time to make a communication plan that also includes a mutually agreed upon “Stop” signal, for you and your
veteran to immediately halt and discuss whatever tempers begin to flare. Again, planning ahead for this eventuality gives you a structure to follow and a pre-planned solution for dealing with tense situations.
For those with mental health injuries, there are multiple options for counseling and therapy, including Telehealth, group outpatient programs, inpatient intensive programs, and a growing number of programs for the family. Remember that some injuries take time to present themselves, so continue to be alert to behavior, medications, and any changes in the veteran’s medical condition. Be attentive when medications are changed and you observe insomnia, lethargy, aggression, or hyperactivity, or when sudden dizziness and balance issues occur, which might indicate an undiagnosed medical condition. Bring up changes in behavior, personality, or communication style (such as anger, lack of verbal filters, or uncharacteristic silences) with your health professional.
Caregiver challenges and support
The Wounded Warrior Project Resource Center serves and supports warriors, their caregivers, and families through a multichannel contact center. In addition to responding to specific resource requests, the Resource Center representatives actively reach out to warriors and caregivers to engage them in available programs and services. The Resource Center is equipped to help warriors, caregivers, and family members identify resources for example, registering as an Alumni or family member to participate in WWP programs and services; answering questions about WWP programs and services; connecting with a WWP benefits liaison; identifying appropriate financial assistance options; finding resources to aid in accessibility modifications; and locating resources to provide emotional support.
Over time, and with the help of your care team and caregiver peer support, you will notice the normalizing of your days, and you may be surprised at your resilience. It is very important to take care of yourself, since you are now the primary point of contact for your family in terms of communication, progress, and updates. Family communication can be centralized and even scheduled so that you are not responding to many concerned, well-meaning callers while your concentration is on your service member. Recognize that this too can be stressful, and being kind to yourself while you adapt is important.
Many caregivers benefit from connecting to online and offline peer support groups where caregivers can gather and share their best ideas on how to manage the demands of their lifestyle. Social media is also very popular, but only participate in activities that build you up, rather than add stress to your day. Use your well-earned discernment and experience to find what works best for you!
Connecting veterans to other veteran battle buddies has also proven very helpful and there are organizations that can assist you in finding a battle buddy for your own veteran if that would help. Explore and consider adopting a service dog into your family if it would increase the independence of your veteran. Expect more adjustments as the transition is made into the community, and know that caregiving, while challenging, can also be uniquely rewarding. Many caregivers report personal growth, expanded support and social networks, and increased sense of self-worth from their experiences.
“I have PTSD and I had never had a dog before, but my psychiatrist encouraged me to try. He said the dog would become my best friend and he was right. I now have another puppy and we are all doing great. My dogs are labeled emotional support dogs and can fly on airplanes and accompany me just about everywhere.” —Army veteran
Veterans face certain challenges as they reintegrate into their communities. Caregivers, in their support role, increasingly share these challenges as well:
- It may be difficult to find a new life goal or purpose.
- It may be difficult to adapt from the military culture into a community that doesn’t understand it.
- After the initial welcome, “life” arrives, and it may look different than you’d anticipated.
- Children may have difficulty fitting in after being exposed to this new experience.
- Family members may need education in PTSD and invisible injuries to better understand you.
- Secondary PTSD may be an issue for both caregiver and children; please mention this to your primary physician so that counseling and support may be provided.
- There may be a second time of grieving for an out-of- reach job or educational opportunity.
- There may be difficulties with home and transportation accessibility (the VA has special grants to assist you).
- There may be a deep sense of loss for the close support group and unit mentality of the hospital environment.
Family Caregiver Curriculum
Defense and Veterans Brain Injury Center's (DVBIC) Family Caregiver Curriculum is for caregivers of service members and veterans with moderate to severe TBI. There are four modules in the curriculum, ranging from specific information about TBI and becoming a caregiver to how to access services and benefits. There are print versions of the guides as well as webcasts that can be viewed online.
All of these situations can be met and managed with the assistance of your extended family, your CSC, friends, and community organizations that specifically support returning veterans. The good news is that most veterans and their families continue to adapt to the changing medical conditions and begin to “thrive where they are planted.” Military families are among the most resilient in the world, and you are no exception!
Caregiver health and wellness
Excellent self-care is essential. If you are unable to sustain your caregiving responsibilities due to physical or emotional drain, the entire family will be affected. Work very hard to schedule (yes, schedule) time for yourself as you continue to provide care. Physical fitness, good nutrition, positive outlets and activities will keep you in a healthier condition, and better able to “bend, but not break” as life’s inevitable emergencies occur.
Explore new ways of exercise such as yoga or Pilates that provide both relaxation and a great workout. Make time to be with friends by yourself and take advantage of community and faith-based events. If formal respite care is possible in your case, schedule it regularly, as alone time is also re-energizing. You are the “heartbeat of the family,” and you are important—make time for yourself. Your family will thank you.
Eat healthy foods and take time to eat on a regular schedule rather than on the run or between appointments as much as possible. Find space in your schedule for quiet, contemplative times. Discover at least one thing that calms you when you’ve reached a mental mountain, whether it’s active or passive. Seek counseling for yourself, as a couple, or as a family if you feel it would help you. Connection with other caregivers can also be a great support, and realize that your role will continue to evolve and change. Remain gentle and realistic about setting your own expectations.
Consider journaling or keeping a gratitude notebook. Celebrate the small milestones of returning to “normal” life, such as a successful grocery trip, a family holiday that went relatively smoothly, or mastering a new hobby. If you’re able to resume your education or career, relish the progress, and make new friends along the way. Work at keeping yourself “whole,” and try to make good choices in focusing on the present.
How to help a caregiver
Caregiving can be an isolating experience, both from the tasks associated with caregiving and the possible emotional barrier between the caregiver and others not coping with the same issues. Some friends may not wish to see a visual reminder of what their world could become. Compassionate, drama-free friends can be a valuable source of strength.
Caregivers appreciate that friends and extended family offer help and assistance, but it can also be difficult to articulate what would be most helpful. While in the hospital, visitor access is very limited, but gift cards are welcomed since they can be used when convenient for the caregiver. A caregiver may not be able to take respite or time away from the service member in the near term, but she may welcome a discussion about when the time is right for your support. Rather than showing up on the spot with a gift, talk to the caregiver about what she needs (e.g., a new book, a loaded iPod with favorite music, an offer of carry-in food favorites) and when. Respite or time away from the service member may not be possible immediately, but entering a discussion with some timely ideas is well-received—forcing the caregiver to think up something on the spot for the friend to deliver.
Caregivers appreciate the meaningful emotional support that comes through active listening and continued acknowledgement during this often-long recovery period; short notes or a special card are significant. As a friend, please don’t always expect a response to your efforts as this is when a true gift with nothing expected in return is needed.
Outside the hospital and in the community, many veterans and their families are eager to renew their friendships, and controlled group outings, where friends gather together, may help allow a caregiver to enjoy the evening or day event. If it’s possible to get away for an hour or more, again offer some ideas (massage, pedicure, an hour free to read, an on-site yoga class perhaps) to provide the caregiver options. Sending a cartoon or a video link can provide much-needed laughter, and these small efforts are very thoughtful.
There may be physical or emotional limitations to be managed, but caregivers sincerely appreciate that their role is recognized and affirmed, that they find time for respite in being with others, and that laughter and joy is key to feeling normal again. Frequently, veterans say they are grateful for honest, open, and accepting friends, which in turn helps the caregiver. Finally, keep a kind eye on your caregiver friend or relative, since silence or isolation is usually a signal that something has changed. Be present, be compassionate, and listen well.
Information provided in the caregiving chapter of this book is based on and can be further researched in the following:
- “Caregivers of Veterans—Serving the Homefront”:www.caregiving.org.
- “Caregiver Support in the Veterans Health Administration: Caring For Those Who Care”: www.tomah.va.gov.
- “Testing Care Coordination for Veterans with Dementia”: www.rwjf.org.
- “Trauma Faced by Children of Military Families”: nccp.org.
Wounded Warrior Programs
- Air Force Wounded Warrior Program: woundedwarrior.af.mil.
- Warrior Program (AW2): www.wtc.army.mil.
- Navy Wounded Warrior Safe Harbor Program: safeharbor.navylive.dodlive.mil
- Special Operations Command Care Coalition: www.socom.mil.
- USMC Wounded Warrior Regiment: www.woundedwarriorregiment.org.
- The Wounded Warrior Project Resource Center: www.woundedwarriorproject.org.
- Warriors to Work Program: www.woundedwarriorproject.org.
Service Member and Family Support
- DCoE TBI Resources: www.dcoe.health.mil.
- Defense and Veterans Brain Injury Center: www.dvbic.org.
- DCoE PTSD Treatment Options: www.dcoe.health.mil/ForHealthPros.
- DCoE Clinical Training Manuals: www.dcoe.health.mil/training.
- Make The Connection, Medical Conditions: maketheconnection.net/conditions/ptsd.
- NIMH/NIH, PTSD, and Mental Health Disorders: www.nimh.nih.gov/health.
- PTSD for Veterans and Families: www.ptsd.va.gov.
- VA Polytrauma Terminology and Conditions: www.polytrauma.va.gov.
- VA Guide to Mental Health Resources: www.mentalhealth.va.gov/docs.
IDES and Benefits
- DoD Compensation and Benefits Handbook: warriorcare.dodlive.mil/files.
- IDES Overview: warriorcare.dodlive.mil/disability-evaluation/ides.
- IDES and Disability Evaluation: warriorcare.dodlive.mil/disability-evaluation.
- Wounded Warrior Social Security Disability: www.ssa.gov/woundedwarriors.
- Veterans Benefits Handbook: www.va.gov/opa.
- TRICARE Special Programs: www.tricare.mil.
- VA eBenefits: www.ebenefits.va.gov.
- Acronym and Terminology Index
Excerpted from the Department of Defense and Veterans Affairs Terminology and Acronym Listings
A&A - Aid and Attendance
AMA - Against Medical Advice
AW2 - Army Wounded Warrior Program
AO - Agent Orange
BDD - Benefits Delivery at Discharge
BIRU - Brain Injury Rehab Unit
BVA - Board of Veterans Appeals
CBOC - Community Based Outpatient Clinic
CBWTU - Army Community Based Warrior Transition Unit
C&P - Compensation and Pension Examination (VA)
C&C - Confirmed and Continued (rating continuance)
CCP - Comprehensive Care Plan (Wounded Warrior)
CHAMPVA - Civilian Health & Medical Plan - Veteran
COAD - Continuation on Active Duty (AD)
COAR - Continuation on Active Reserve (AR)
COAVC or COVA - U.S. Court of Appeals for Veterans Claims
Comp - Service-Connected Disability Compensation COTA - Certified Occupational Therapy Assistant CSF - Comprehensive Soldier Fitness
CTP - Comprehensive Transition Plan (Intake, Assessment, Goal Setting, CTP Review, Rehabilitation, Pre-Transition, Post-Transition)
CWV - Center for Women Veterans
DA199 - Army Physical Evaluation Board Proceedings
DEA - Dependency Education Allowance
DD214 - Certificate of Release or Discharge from Active Duty
DIC - Dependency and Indemnity Compensation
DOM - Domiciliary
DRO - Decision Review
DTAP - Disabled Transition Assistance Program
DVBIC - Defense and Veteran Brain Injury Center
DVOP - Disabled Veterans Outreach Program
EAD - Entry on Active Duty
E2I - Education and Employment Initiative
EHR - Electronic Health Record
EVR - Eligibility Verification Report
FOIA - Freedom of Information Act
FRC - Federal Recovery Coordinator
GAF - Global Assessment of Functioning
IOC - Independent Outpatient Clinic
IU - Individual Unemployability
IVAP - Income for VA Purposes
IVM - Income Verification Match
LOD - Line of Duty (determination of eligibility)
MAR2 - Military Assessment Retention Review
MEB - Medical Evaluation Board
MMI - Maximum Medical Improvement
MOS - Military Occupational Specialty (work category)
MRDP - Medical Retention Determination Point
MST - Military Sexual Trauma (rape and assault)
NARSUM - Narrative Summary for warrior injuries used in the IDES process
NCM - Nurse Case Manager (part of the care triad)
NOD - Notice of Disagreement
NPRC - National Personnel Records Center
NSC - Non-Service Connected
NW - Net Worth
OEF - Operation Enduring Freedom
OIF - Operation Iraqi Freedom
OIG - Office of the Inspector General
OP - Outpatient Clinic
OND - Operation New Dawn
OT - Occupational Therapy
PCM - Primary Care Manager
PDO - Per Diem Only
POA - Power of Attorney; HCPOA is Health Care Power of Attorney
P&T - Permanent and Total
PRC - Polytrauma Rehabilitation Center
PTSD - Post Traumatic Stress Disorder
RAD - Release from Active Duty Date
Rating Schedule - VA’s Schedule for Rating Disabilities (VASRD); contains criteria for evaluating disabilities to determine the degree of physical or mental impairment in earning capacity resulting from the disabilities
RCC - Readjustment Counseling Center (Vet Center)
SBP - Survivor’s Benefits Plan
SC - Service-Connected
SCAADL - Special Compensation for Assistance with Activities of Daily Living
SL - Squad Leader
SMC - Special Monthly Compensation
SMP - Special Monthly Pension SMR - Service Medical Record
SOC - Statement of the Case
SSI - Supplemental Social Security Income
TBI - Traumatic Brain Injury (sometimes called concussion)
TDRL - Temporary Disability Retirement List
TRICARE - Military’s managed health care system
VBA - Veterans Benefits Administration
VACO - VA Central Office (Washington, D.C.)
VAMC - VA Medical Center
- VAROVA Regional Office
VAOPT - VA Outpatient Treatment Clinic
VAMROC - VA Medical and Regional Office Center
VEAP - Veterans Education Assistance Program
VET Centers - VA Community-based Readjustment Counseling Centers primarily for PTSD, war trauma, and/or sexual assault (MST)
VETS - DOL’s Veterans Employment and Training Service
VGLI - Veterans Group Life Insurance
VHA - Veterans Health Administration; health care administration
VISN - Veterans Integrated Services Network, twenty-three geographic health networks within VH
VRA - Veterans Readjustment Act/Appointment
VR - Vocational Rehabilitation (Voc Rehab)
WVHP - Women Veterans Health Program
Preparation Guide: Taking Care of the Details When You Become a Caregiver
If you suddenly become a caregiver, you will likely be in shock. This is a hard time to begin thinking about all the details you need to address. Use the list below to help you begin to think about what you need to do, what to bring to the hospital, and what to pack for yourself and your service member. Consider that you might be gone for thirty days or more.
What to pack:
- Clothing, taking into account the weather and the season (e.g., do you need a jacket?), and the need for comfort (sweatpants). Remember extra socks and comfortable shoes.
- Comfortable pajamas and robes for yourself and your service member
- Prescription medication and toiletries
- Cell phone and electronics (e.g., laptops and cords), including chargers and special batteries
- Comfort items for yourself, service member, and children (special blankets, stuffed animals, pillows, braces, etc.)
- Important phone numbers, addresses, and email contacts
- Glasses or contact lenses (including replacements and cases)
- Ear plugs or sleep mask, in case you need to sleep in the hospital
- Activities for children, if appropriate (small games, electronics, crayons)
- Calendars or journal to relieve stress or help record details
Documents to bring:
- Power of Attorney (POA)
- Driver’s license and proof of insurance (in case you need a rental car)
- Immunization records for your children, if they come with you (in the event they need to attend daycare)
- Copy of your latest leave and earning statement (LES)
- Original prescriptions for yourself, your service member, and your children (including eyeglasses, contact lenses, EpiPens, etc.)
- Health insurance information (e.g., phone number, sponsor’s social security number)
- Important contact numbers
- Copy of service member’s Deployment Orders
- Bank information (e.g., routing numbers, phone numbers), credit cards, check book, account numbers
- Passport, if needed
- Stop the delivery of the mail and newspaper, or arrange to have someone come by and pick it up for you.
- Work with your job’s human resources office to arrange time off from work (using vacation time or the Family and Medical Leave Act), and let schools know of your plans if you have children.
- Arrange care for pets (you may need pet immunization records and vet information).
- Contact insurance companies (e.g., homeowners, auto, health, long-term care) to make necessary arrangements.
- Schedule bill payments (there are many agencies that allow for online payments).
- Inform a trusted friend or family member of your plans; they can be your go-between for information dissemination if you need them to be. Also, provide them with a key to your house or apartment in the event they need to get in to send you something.
- Empty trash cans and dispose of perishable items (remember items in the fridge, too!).
- General household maintenance: Set thermostat at a lower temperature, arrange lawn care, lock car, secure doors and windows, and, if you rent, inform the landlord or property manager you will be gone.
This Caregiving Chapter is being used with permission from Blue Star Families. Blue Star Families is a non-profit organization, created by real military families. It is committed to supporting one another through the unique challenges of military service and asking the larger civilian population to help as well, connecting military families regardless of rank, branch of service or physical location, and empowering military family members to create the best personal and family life possible for themselves.
- VAROVA Regional Office