Shifting Priorities & Seeking Help
Key Caregiver Experiences

Experiencing changes in day-to-day life

Beginning to manage their loved one’s healthcare plan

Navigating support organizations, agencies, and community resources

Feeling frustrated by the complexity of healthcare systems

Experiencing disappointment that life has changed

Feeling uncertain about the future

Feeling a sense of guilt

Experiencing pride in their increasing ability to manage loved one’s care
About This Stage
During this phase, the caregiver accepts an increased level of responsibility for their loved one’s care, and starts to reach out for external assistance. In doing so, their day-to-day priorities shift to accommodate these new responsibilities.
For instance, the caregiver may seek increased childcare support, reduce their hours at work, or otherwise alter their routine to make up for their increased caregiving responsibilities. At the same time, the caregiver engages with their loved one’s health care plan – scheduling appointments, negotiating a care plan, and/or applying for benefits.
becoming aware & adjusting
Key Caregiver Needs

Assistance with physical / emotional challenges

Support for managing daily tasks (child care, meal preparation)

Counseling for the caregiver’s marriage or relationship

Assistance from extended family

Recognition that the caregiver is an integral part of the care team

Clear communication with the primary care team and the veteran/service member

A diagnosis and care plan for the veteran/service member

Training to manage the stress of caregiving

Information on and access to financial benefits

Information on employee rights (family leave, etc.)
Need more support? Visit our Caregiver Resource Directory.
Learn more about the Caregiver Journey Map
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Contacts Support
Caregiver seeks answers and begins to advocate for their loved one
Caregiver seeks answers and begins to advocate for their loved one
Video
Louis Celli, Executive Director of the American Legion, discusses how caregivers feel when they need to contact support.
Caregivers unfamiliar with the VA/DOD systems will need to learn a new system of care. The VA/DOD systems are unique and have a bit of a steep learning curve. Caregivers need to ask questions to better understand the intricacies of how the system works. Most important, ask for help when needed.
Talk to other Fisher House families experiencing similar situations. Reach out to the unit social worker for assistance. Talk to the Fisher House manager, he/she will be able to help navigate the unfamiliar territory. Additionally, there will be competing priorities, that you need to be near the service member/veteran, yet not able to work and provide for your family, concern about paying bills, and unable to be present at home for “home duties.”
And caregivers will often have to learn an entirely new city. The Fisher House provides necessary accommodations, but the caregiver may be living in an entirely different city, possibly living in an urban city that is very different from home and feeling that there is no or very limited support system. Friends and family are far away and equally unfamiliar with your situation. It can be very difficult to adjust.
Information contributed by:
The Fisher House program provides “a home away from home” for families of patients receiving medical care at major military and VA medical centers. Learn more: www.fisherhouse.org.
Journey Step
Discover
Tries to navigate healthcare services and veteran gets diagnosis
Tries to navigate healthcare services and veteran gets diagnosis
RESOURCE
As caregivers start to seek more targeted support for their veteran or service member, they will likely begin to engage with multiple health care systems, providers, and unfamiliar processes. Navigating healthcare services on behalf of someone else can be time-consuming, stressful, and frustrating. Caregivers who have questions about their loved one’s care should consider speaking with a Veteran Service Officer, a case manager within their loved one’s primary healthcare system, or other caregivers who have gone through similar experiences in the past.
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Veteran is Diagnosed
Veteran is diagnosed and a treatment plan is formed
Veteran is diagnosed and a treatment plan is formed
Video
Mary Ward is a caregiver to her husband. Here she discusses what it was like to receive her veteran’s diagnosis.
Journey Step
Prepare
Caregiver negotiates treatment plan with loved one and reduces their hours at work
Caregiver negotiates treatment plan with loved one and reduces their hours at work
Video
Jennifer Mackinday, caregiver to her brother, discusses the changes she needed to make to her personal life for her caregiver responsibilities.
If you are a working caregiver, you know what it’s like to be a nonstop juggler, trying to have a life while keeping some balance among responsibilities. Your caregiving role may be hard, even overwhelming, but there are steps you can take that may ease the burden.
The 60 percent of family caregivers who also hold full- or part-time jobs bear additional
burdens. Often, caregivers try to pull off these maneuvers without alerting bosses, for fear of appearing less than fully committed to their jobs. Just getting through an average day calls for complex choreography, especially when schedules and needs don’t align properly. An urgent medical situation or a transportation glitch can set off a frantic scramble to fill the gaps.You’re not alone.
61 percent of working family caregivers have seen disruptions in their work due to their caregiving responsibilities. Caregiving is the new normal in the workplace, and employers are responding.
- Talk to your employer. Let your manager know your needs related to caregiving. Make it clear that you are committed to your job and want to find ways to remain productive.
- Ask about flexible-work options. This could mean a compressed work week or a modified daily schedule based on need. Job-sharing and telecommuting are also caregiver-friendly options to explore. Many employers offer flexible work options on a case-by case basis even if there is no formal policy.
Research on caregiving shows that many companies truly want to help their employee-caregivers. These employers know that such benefits are increasingly in demand by job applicants and that they are an important tool for recruiting and retaining top-notch workers.
Information contributed by:
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Setback
Setbacks are normal and occur at every stage of the journey. Over time, caregivers may learn skills to better…
Setbacks are normal and occur at every stage of the journey. Over time, caregivers may learn skills to better cope with setbacks, but can still feel like they are moving backwards
Video
Betsy Eves is a caregiver to her husband. Here she discusses what it is like to experience a setback in her caregiver journey.
Transition Point
Support
“We can handle this” - the plan comes together
“We can handle this” – the plan comes together
RESOURCE
As caregivers continue to advocate for their veteran or service member, and become more familiar with healthcare systems, they will often start to feel more confident in the future of their loved one’s care. Caregivers who receive the right support at the right time will eventually start to feel like they are better equipped to manage the challenges ahead of them, and will transition into the Finding a Rhythm stage.