• by Elizabeth Elfenbein , Columnist, July 2, 2015

When someone is diagnosed with any type of disease, life changes immediately for the patient, and for the loved one who inevitably assumes the role of caregiver. He or she quickly transforms from being a lover, best friend, and companion to being a living life-support system with a PhD in care. 

Of course, the caregiver provides physical care for the patient, but they also care for the psychological side—their well being. In this process, caregivers often can lose their sense of self, because, compared to their sick loved one, how dare they have needs? 

Caregivers do what they do with love, courage, spirit, strength, and vulnerability all wrapped up in one package. Their role is truly extraordinary. But that’s the humble role of a caregiver. 

The unspoken words of a caregiver

My brother was a caregiver for his wife, and his struggle was a daily one. Yet he never considered himself a caregiver. Instead, he was just doing what a husband and lover does, by ensuring that every aspect of his wife’s life was lived to the fullest and as “normal” as possible. 

They lived on their own terms while they could as the disease manifested in every which way, insidiously changing the way they lived. As the disease took control of her body, she decisively took control of her life as much as was possible, and her husband was the facilitator of this transition. Ultimately, a great caregiver isn’t really caregiving. They’re just being themselves by helping to navigate the health situation that is thrust upon them. 

A primary tenet of the caregiving role is that control must be in the patient’s hands as much as humanly possible, so that the patient is actively engaged in decisions about their treatment choices and care for as long as possible. 

As the disease progresses and begins to wrest control from the patient, the caregiver needs to respect their wishes and carry on as if they were the patient. Caregivers often balance this level of control with the need to ensure that every facet of care is taken care of, from the healthcare and treatment perspective and burden, to obtaining access to insurance, to the psychological side of tremendous change and how it impacts the patient, the caregiver, and the family. 

Caregiver cares

As the caregiver cares for the patient, they often have family that needs caring for as well. This is where maintaining a sense of normalcy is incredibly important — when mom and her weekly chemotherapy sessions, mom without hair, and exhausted mom — becomes the new normal. As this new normal begins to take shape, the caregiver cares on a whole different level. At first they seem to respond quickly to what seems to be acute at the time, but then it becomes a long, slow burn. 

And managing this level of care while trying to live a productive life is an extraordinary burden. Though some caregivers don’t consider it a burden at all, others feel the heavy weight of daily caregiving, and it becomes an emotional roller coaster. Caregivers need an outlet to talk about this burden even if they consider themselves fortunate to be the caregiver. They need to talk and let their feelings out.

Giving a voice to the unspoken community of caregivers

Listening to and supporting caregivers is crucial. They aren’t the patient, but they are suffering, and feel a larger responsibility that is as taxing as it is rewarding. Caregivers need to be heard, and they need to have a voice to celebrate their fears and triumphs in this challenging journey.

Recently we launched CaregiversSpeakUp.com, a social platform designed expressly to give voice to caregivers. It features a documentary on “five caregiving experiences” that highlight the various stages and experiences that caregivers go through. The experience is cathartic, whether the caregiver is relating their experiences during the early diagnosis phase or after the loved one has passed.

Recently we screened the documentary for a small audience, including the caregivers featured in the film and their families. After the film, everyone in the room wanted to share their own caregiver story, because seeing the caregivers open up on film seemed to give them permission to talk about something so personal and painful. The more comfortable a caregiver feels when releasing the pressure valve that holds in their frustrations and fears, the more easily they can transition to a healthy life after caregiving.