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How Do You Define What It Means to Be a Caregiver?

How Do You Define What It Means to Be a Caregiver?

Just like Parkinson’s disease itself, Parkinson’s caregiving looks and feels different for everyone. Some loved ones don’t identify with the caregiver label at all. Others embrace it and find comfort in caregiver support groups. For some, caregiving is a full-time job. For others, it’s one part of a busy life.

We asked our Facebook community how they define being a caregiver. What descriptions resonate with you the most?

“I'm not a caregiver. My husband has PD. I am his wife.” Some people don’t connect with the caregiver label at all, preferring care partner or simply wife, husband, daughter, etc.

Caregivers are empathetic. Many caregivers in our community said that empathy is their most important skill when providing support. Rather than just feeling sympathy for a loved one, caregivers put themselves in their loved ones’ shoes and make choices from that point of view. 

A caregiver wears many hats. Depending on your loved one’s needs, a day of caregiving may involve several trips by car, lots of cooking, medication measuring and more. Often, caregivers are also researchers, investigating the latest Parkinson's treatments and studies.

A caregiver recognizes both the challenges and the reward of supporting a loved one. We often talk about the stress of caregiving, but the closeness and commitment of caregiving can be deeply meaningful, too. “Yes of course there is sadness and struggle and change, but also a lot of joy,” actress Kimberly Paisley-Williams said about her mother’s dementia diagnosis.

A caregiver is flexible and ready for change. Caregivers are experts at planning ahead, whether for the next week or next few years.


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