“It was important for me to learn, so I immersed myself. My caregiving journey has been to understand what has been going on with my kids, I had to educate myself because I saw my role as the biggest champion.”
Neelam found herself step into the role of a caregiver the minute she stepped into the role of a mother. She is the primary caregiver to her two children, who were diagnosed with Usher’s Syndrome Type 3B, when they were born. She shares how she she took a stand and educated herself to have a better understanding of what was going on. More than the role of a mother and a primary caregiver, she saw her role as the biggest champion.
She shares that her caregiving journey has not only been emotional but also interesting and that she does not know life otherwise now. Her biggest learning experience about being a caregiver is that one has to make a choice about how they want to lead their life.
“Everyone who is born will eventually go but it’s on us on how to make the quality of the life meaningful…”
Neelam talks about how even when she wasn’t getting clear responses from doctors, what helped her was the support of other people, parents and families who were facing similar situations. Knowing that she has others to lean on and their support, has helped her through her caregiving journey. She emphasizes the importance of finding oneself a community as sometimes even one’s own family members cannot understand the challenges of being a caregiver.
“Community is very important for caregivers. We have to know that we’re not alone, we have to lean on each other.”
Neelam identifies with the work that Caregiver Saathi does. She points out that though we don’t realize it, everyone will end up being a caregiver at some point in time and it’s not often that people look out for caregivers and their well-being.
Sharing your story helps understand yourself — feelings, passions, hopes. It lightens the load and offers relief from loneliness, anxiety, anger or guilt. Our experiences and hopes can benefit others – to know that the challenges are the same, learn new ways to cope and care… they aren’t alone but part of a team.
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