“Support groups are the most vital…..helping each other, holding each other’s hand is the only way to go forward with this.”
Thirty Four year old Anurag and his wife are the primary caregivers to his mother who suffers from ALS. ALS being a disease with no predictability, cure or medicine means they have to learn to live with it. His mother was a caregiver to his father who eventually died of cancer and Anurag feels that nobody realized she was probably becoming a patient herself in the process of caregiving.
Unprepared for his mothers disease they all found it tough to accept at first. Initially his mother felt guilty about burdening her children but having professional caretakers helped. As a son it was tough for Anurag to see his mother, who nurtured him, struggle with her own body. However once they accepted the situation, they tried to lead as normal a life as possible.
Anurag joined an ALS support group where he was able to ask questions freely and received immediate responses. Anurag feels this hand holding is crucial for caregivers so that one can share their experiences with others who have been through it. As he became a more experienced caregiver he was able to help others in return.
With the medical fraternity still learning about ALS everyday, Anurag feels it is important for him and others who have been through it, to share any information they have and to create interaction so that we can learn more about this disease.
If you can identify with this story, please share it with others who care for someone and help them share too. The feeling of understanding, not being alone and access to support is what keeps caregivers going.
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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