Who will care for the caregiver?
It was our first caregiver support group session at a prestigious Hospital. There were four caregivers. I noticed one of the caregiver, mother of a 24 year old son, was going through varied emotions. The stress, fear and anxiety was written all over her face. She had travelled all the way from another state far away. Her son had joined a company in Bangalore a year ago but just a few weeks later was diagnosed with soft tissue sarcoma. She said bitterly “why did the doctors in my hometown not pay heed when I kept saying that the lump on his wrist was painful?”. Searching for answers, she broke down and said “why my son? He was always so healthy, so caring and loving. Why did god do this to him?”.
We were there, with her, holding her hand, just listening and empathising. When she started feeling a bit better, she moved on to showing pictures of her strikingly handsome son in the days before it all began. She talked about how she did not want to inform the relatives because all they did was give unsolicited advice. She was undergoing a lot of trauma, taking care of her son alone without any support from other family members and no friends, in a place far away from her home.
That brings us to the question, to care for a patient there are doctors and nurses and caregivers but who will care for the caregiver? That is the reason we feel that our caregiver support group sessions are important and essential.
Going back to the story, the lady left after giving us a warm hug, saying she will be back for our next meeting.
A grieving caregiver
Thinking about our next meeting brings a lot of sadness in me. I see her looking shattered and staring blankly. She puts her head on my shoulder and cries inconsolably. All I could make out from her incoherent speech was that the doctors had given up on her son. I could see the grief that she will lose her son was already consuming her. I just stood there holding her. Her husband and daughter had arrived from their hometown to be by her side. I left after having a few words with her family.
I did not hear from her for a couple of weeks. At times I wondered what had happened and how she was, and then suddenly one day, she called. I got to know that she had lost her son couple of days after our meeting. I talked to her at length, she talked about her son. She narrated a lot of incidents about her son being a “mamma’s boy”, how he helped her and how well he studied. She laughed and cried and I listened. After a while she said she felt better and would call again.
When someone’s loved one has lost the battle to cancer, it is important that we continue to make ourselves available for the caregivers who are in need of grief counselling.
Life after cancer
In another case, I got into a counselling session with a young cancer survivor. People may think, why a person who has survived cancer needs emotional support? She should be happy and relieved. As we talked, she opened up slowly. She was undergoing a lot of anxiety. She revealed that she was feeling isolated. All the support system like the doctors and nurses who had been by her side right through the treatment were no longer there for her. Even her sister who had cared for her during treatment had moved on with her life. She just wasn’t used to being on her own and was struggling to get back to normal life.
She still had side effects of chemo. Her energy levels were low. Sometimes at work she had difficulty remembering or comprehending things. And most of all, she continued to live in fear that the cancer might come back. Each time the next check-up was due; she could not sleep for days before that.
Clearly, we counsellors need to be there for people in their “life after cancer” as much as when they are diagnosed with cancer and undergoing treatment.
By RITU SHARMA,
Emotional Support Group, Indian Cancer Society