• by December 23, 2014

One day everything’s looking up; the next, the world is crumbling around you. 

The daily pressures of being a caregiver are huge. Disease can take down a patient and the whole family with it. There are so many emotions that people who are dealing with illness feel — and because it’s family, they feel deeply for the patient and their healthcare rights. 

It’s important to remember everyone in the family has a different relationship to the patient and their health condition. These varying opinions and feelings create havoc on top of an already stressful situation. The challenge is how to take care of the clinical side of the condition while trying to rein in some of your own emotions so that you can advocate swiftly and smart. And it’s not easy.

Caregivers have a special skin in the game

As caregivers go into unchartered healthcare territories, it’s important to keep some emotional distance. That way you can manage the patient’s physical and emotional health requirements with a modicum of objectivity, while maintaining your sense of self and inner strength. The journey is rarely a short-term experience; while you could be living with it on a day-to-day basis, it can go on for months, even years.

Caregiving is a job on top of your job.

Caregiving requires all of your faculties (and then some) and comes with a rush of feelings that can be hard to sideline. It demands dedication to the cause: the patient. It demands time, focus, organization, research, empathy, listening skills, and just a plain big ol' heart. It also requires stamina to keep going, even when things are at their most bleak. 

Until someone has experienced being a caregiver, it’s hard to appreciate the multilayered complexities of the job. Every day it’s like peeling layers of an onion back, with more information leading to even more challenging decisions that must be made. You quickly become schooled in science, disease, and treatments that can save lives (or not). There’s no one-size-fits-all protocol on how to cope and survive a loved one’s illness. You have to find the right balance between the emotional side and the practical side while making sure they’re receiving the best care.

The practical side of caregiving: finding the right healthcare

How can we help caregivers navigate the complexities of accessing the right kind of healthcare? It’s not simple. Caregivers need to be able to advocate for the best treatment both clinically and psychosocially — and this requires a new level of education and support. Because just as you learn and get comfortable with what you know, there’s a change in the patient’s condition and new information to absorb.

Serving the caregiver community: the Caregiver Action Network

The Caregiver Action Network (CAN) is the nation’s leading organization working to improve the quality of life for the more than 65 million Americans who care for loved ones with chronic conditions, disabilities, disease, or the frailties of old age. 

CAN serves a broad spectrum of family caregivers, from the parents of children with special needs to the families and friends of wounded soldiers, from a young couple dealing with a diagnosis of multiple sclerosis to adult children caring for parents with Alzheimer’s. CAN (formerly the National Family Caregivers Association) is a nonprofit organization that provides education, peer support, and resources to family caregivers across the country free of charge.

The Caregiveraction.org website is designed specifically to support all aspects of caregiving, with educational resources and tools that address the caregiver’s complex needs:

• The Family Caregiver Forum is a place to ask questions and have a voice about the caregiver’s role. You can read about the experiences of other caregivers, which can be especially helpful in understanding your own situation

• The Caregiver’s Toolbox offers an array of content and applications, such as on-demand webinars, and useful information about communicating effectively with professionals, preventing medication mishaps, office visits, caregiver depression, and financial planning. There are also tools for finding and building a caregiver support community 

• Peer network: The Caregiver Community Action Network (CCAN) is a unique and highly dedicated group of over 100 volunteers in more than 40 states. CCAN volunteers reach out to family caregivers to provide education and support; they also teach caregivers to be advocates for themselves and their loved ones 

In essence, caregivers are simply trying to help their loved one — the patient — in every way possible. The many complexities of caregiving make it incredibly challenging both emotionally and physically. We must remember that many of us are on one side or the other of the caregiver equation, and many more of us will be at some point in our lives. We need to support the people we love by helping them get back to living with dignity, without losing our own.