by Molly Pearl
Last summer I finally came up for air. Almost two years after my husband’s cancer diagnosis, and a year after his bone marrow transplant, I waded out of the most intensive and challenging period of caregiving I ever experienced. I began to focus my care inward. I went to the doctor and actually talked about my own health. I went to the dentist. I got a massage. I slowly willed myself to stop anticipating an emergency every time my phone rang with an unfamiliar number. I began thinking about what it meant to move forward into a less intensive, yet longer-term caregiving role. “Cancer-free” does not equal a clean bill of health, and all the veteran caregivers out there will nod in understanding when I lament that a decline in physical health often exacerbates underlying depression, anxiety, PTSD, and other mental health challenges. Many veteran caregivers finally get their heads above water only to see that dry land is farther off yet.
Caregivers have the unique experience of seeking services for both their care-recipient and themselves. In many ways, my caregiving experience provided me a better education in advocacy, case management, and supportive services than most of my social work courses. I became intimately familiar with social security, Medicaid, navigating the VA system, and VSOs that could offer financial, emotional, or social support. I enrolled in the VA Caregiver program; I went through the Easter Seals training, and the Building Better Caregivers course. Although these educational resources were appreciated, I needed something more than pamphlets and powerpoints.
Although VSOs were indispensable in helping me care for my husband, I found that the greatest support I received during my caregiving journey came from outside the veterans’ community. Gilda’s Club offered wonderful support groups for caregivers of cancer patients with evening and weekend hours. They referred me to an individual therapist at a local low-cost clinic. More than anything else, I appreciated these services because they provided me with something others didn’t—a space to be honest, emotional, and vulnerable with other people who understood my struggle. Whereas VSOs helped me navigate the VA system and make ends meet, they saw my husband as the recipient, and I was the means of conveying those services. I went to outside organizations because they directly addressed my own needs.
I stopped going to Gilda’s Club when it no longer felt accurate to define my caregiving journey in relation to my husband’s cancer diagnosis. I began searching, in earnest, for services within my own community. I felt that other veteran caregivers must be seeking the same type of support I was—that they wanted to find connection and understanding with each other, to have a space of their own, and to tap into each other’s knowledge and experience to bolster themselves for the long term caregiving journey. Even though I work in the veteran’s sphere, continue to be a member of the VA caregiver program, and can refer veterans to any number of organizations for any range of needs, to this day I remain hard-pressed to find services that meet my own needs.
This is not a critique leveled at any particular organization. Rather, it is a call to action for our entire community. Thus, it was with excitement (and admittedly, a grain of salt) that I read the announcement from the NYC Department of Veterans' Services; New York officially became the 50th city in the United States to call itself a “caregiver supportive city.” In my opinion, there is much work to be done before we can comfortably own that title, and I absolutely want to see us live up to the challenge. Thus, with solidarity and hope for our success, I humbly offer you my own advice for creating a caregiver supportive city:
1. Set an example by leading from within our community
There are over 60 million caregivers in the United States. We struggle with unemployment or underemployment, financial strain, emotional and physical illness, and social isolation. The challenges of caregiving are not specific to the military and veteran community, but they are often exacerbated by the nature of our lifestyle; the frequent moves, stigma around mental health services, and increased risk for substance abuse, homelessness, and domestic violence.
Our community is recognized for leading the way in developing strategies to end homelessness, for implementing breakthrough therapies for PTSD and TBI, and for setting the standard for prosthetic technology and physical rehabilitation. The best care for veterans is found within our own community. Let’s make it the same for military and veteran caregivers.
We can begin by adopting some of our colleagues' best practices for supporting and serving caregivers. Emblem Health’s Care for the Family Caregiver program provides information, resources, and support directly to family caregivers. They incorporate this program in their own company’s practices, offering training, panel discussions, and self-care services. Deloitte recently made headlines when they announced they would provide sixteen weeks of paid leave for family caregivers. Nike offers up to eight weeks of paid leave for family caregivers. DVS can lead the way in creating guidelines and standards for VSOs looking to create family member/caregiver hiring initiatives, or improving the retention of their family member/caregiver employees.
On a legislative level, we should investigate how to create incentives for organizations to adopt caregiver-supportive practices and benefits. Are there potential tax-breaks, or state funding? On an individual level, is there outreach to spouses and caregivers to educate them about Jobs for Veterans State Grants positions they may qualify for? We know that spousal employment and relationship stability are protective factors for veterans with PTSD. How can we prioritize spouse and caregiver employment, within our own community, recognizing that this represents an investment in our veterans and military members?
2. Expand existing services
Over the last couple of years, I’ve noticed that VSOs more frequently include families and caregivers in the language they use when doing outreach. This language should be backed up by quality services and programs that are specifically created for, and exclusively serve caregivers. Here’s an example of why this should be a priority: on a number of occasions, I sought and received services through VSOs which I qualified for because of my caregiver status. Yet, I had to identify myself according to my husband’s name, rank, or diagnosis because their intake forms or online systems simply did not include questions for caregivers or family members to properly identify themselves. It is embarrassing and inaccurate, both for me and for the organization, that my file is labeled with my husband’s information. This practice recreates the loss of voice and individuality that many caregivers experience during their journeys. RAND’s breakthrough Hidden Heroes survey found that “most relevant programs and policies serve caregivers only incidentally,” and noted a disproportionately negative impact on Post 9/11 caregivers who often lack a support system or don’t seek services. There are a multitude of outstanding organizations in New York City that already possess the structure to rectify this alarming problem. Let’s ensure our VSOs have the knowledge, resources, and financial support to extend their programming to caregivers.
It is perhaps most important to consider expanding the VA Caregiver program, recognizing that it already offers many of the most necessary supports for caregivers (financial stipend, educational resources, the potential for group support, and other benefits like respite care.) In its current form, the VA Caregiver program only serves Post 9/11 caregivers of veterans with qualifying diagnoses. It is an overburdened program, and its federal funding is not guaranteed. I have witnessed the passion and anger of more than one Vietnam-era caregiver as they question why these services are not available to them. Our Vietnam veterans are aging and their health and mental health concerns only becoming more complex. We cannot and should not abandon them, nor their caregivers, in a time of need; I am certain the historically relevant nature of this situation is not lost on anyone. This is a ripe opportunity for NYC based community organizers and policy makers, and an issue that I am certain caregivers will show up to support, lobby, and testify for.
3. Create services to address unmet needs
It bears repeating: it is frustratingly difficult for caregivers to find services that are specifically created for them and which address their own needs. This is true for all caregivers, not just those in the military and veteran community. The necessity of creating spaces exclusively for caregivers should be a defining point in our efforts to create a caregiver supportive city. Further, we should complete a survey of current services in NYC and use this as a roadmap for improvement.
There are a plethora of educational materials available to caregivers through local, state, and national organizations. It is important that we also recognize that caregivers possess their own, organic knowledge, forged through experience and necessity. We might be better served by creating spaces where caregivers can share their unique knowledge with one another, offer peer support, and find understanding and acceptance. This is the principle behind peer-mentorship programs, which are popular and successful in the veteran’s sphere. Let’s apply that same logic to the needs of caregivers.
As we move forward, let’s keep in mind the needs of caregivers in both acute and long-term caring capacities. A caregiver helping their loved one recover from an amputation has different needs during surgery, recovery, and while continuing to help their veteran cope with a new lifestyle. We should strive to create services that address all aspects of this continuum.
4. Offer caregivers a seat at the table
It is common practice to ensure that veterans’ voices are represented, from top to bottom, in all aspects of planning, organizing, and decision making in the veteran’s space. This same practice should hold true for caregivers. As we begin the work to make New York a caregiver supportive city, we would do well to ensure that caregiver’s voices are represented through community assessments, climate surveys, in leadership positions, at government meetings, on advisory boards, and during all stages of the process. While they are a nice gesture, caregivers do not need their own parade or day of recognition. They need to be heard. They need to have their voices acknowledged and their grievances addressed in a substantial manner. Let’s put into practice what we already know to be true: that caring for the caregiver is an investment in the overall health and wellbeing of our military and veteran community.