The last time I had spent a full day with Dristi* was in 2008. She had decided to take me and her sister to a movie. Though ten years our senior, she had always been kind and fun that way. I still remember we had walked out of the hall after watching The Dark Knight, animatedly talking about Christian Bale as well as the uber cool batmobile. Then we had stopped to eat at the food court and laughed as we once again made her retell stories of all the mischief she and her friends had got into during their college days. Back then, the Dristi I knew was always full of life.
But following her mother's cancer diagnosis, we see less and less of that vivacious side of her personality. She has adopted a more somber demeanor and her appearance too has changed. She looks a little too old for her age. Her mother has been fighting ovarian cancer for four years now. Being the eldest daughter of the family, she dutifully took on the responsibility to care for her mother. She has been doing so with a lot of patience and no complaints. But as her life revolves around doctor's appointments, chemo sessions, trip to the pharmacy and the bank as well as the insurance company, we can all see the toll that being the primary caregiver has taken on her.
Caregiver Stress Syndrome is a real thing. Many exhausted caregivers today may not realize that they have a recognizable condition but it is widely prevalent around the world. Also known as Caregiver Syndrome Dr. Jean Posner, a neuropsychiatrist in Baltimore, Maryland, referred to it as, "a debilitating condition brought on by unrelieved, constant caring for a person with a chronic illness or dementia." Simply put it is the constant stress created by the seemingly endless activities a care giver is confronted with on a regular basis. Its impact can be felt emotionally, physiologically and psychologically.
"I never expected it to be easy but I could have never imagined it to be this hard either," reveals Rachit Basnet*. His 81 year old mother suffers from dementia and her memory is steadily getting worse. Despite the extra help he has hired to look after his mother in the afternoons while he and his wife go to their offices, he confesses that the stress of care giving has hit him like a full-frontal assault.
"Of all things, it is depressing to see my mother's personality fading away, month by month. Though a year ago when she was first diagnosed, I was naively confident that I could get everything under control. With the extra help and my family's support I thought I could cope well. But 20 months on and today, I feel utterly helpless and alone," says Rachit.
He talks about how with time, the initial interest and support from his relatives has dwindled away. Still he claims to understand. He does not want to ask his relatives to put their lives on hold for him. So he and his wife alternate duties to feed, bathe and remind his mother to go the toilet. He also finds his social life slowly slipping away. It's partly because he feels extremely guilty having any kind of fun anymore and also because he can feel the financial strain of the treatments. The fact that there is no hope of his mother's condition getting any better weighs heavy on his conscious too. The thought alone he says is enough to drain his energy.
Jyoti Gurung, Medical Officer at the oncology department at B&B hospital admits that she sees a lot of stressed out caregivers on a daily basis. "Even if they don't say anything, most of the time you can see it on their faces. You can sense the family members who come with our patient buckling under the responsibilities and it is understandable. Their lives too are drastically altered by the illness."
Care giving often is a 24 hour, 7 days a week commitment. Thus one can only imagine how utterly stressful and demanding it can be. The patients may be the priority but all the while, care givers too have been known to silently suffer. Surveys and studies consistently show that depression is a major problem with full time care givers. This is typically bought on by stress and fatigue as well as social isolation from friends and family. If allowed to go on too long, there have also been cases where the caregiver themselves have ended up needing long
term care.
But for many Nepalis, this is not a condition. This is not even an issue. They sigh that they have been dealt a bad hand and that's the end of that. Dristi actually laughed when we suggested that she could be suffering from Caregiver Stress Syndrome. "There is no time for me to have problems right now. You can't possibly be suggesting me to shirk my responsibilities," she had said.
So far we have only been admiring the dedication of caregivers. We observe their sense of duty and call it honorable but it is high time that we acknowledge the elephant in the room. Dr. Dhruba Man Shrestha, Psychiatrist and Professor at Nepal Medical College admits that this is an issue, one that requires specific counseling. He has seen many of his own patient's relatives under immense stress.
"To be blunt, caring for a sick person is a burden. No one can deny that. It exacts a steep emotional toll. In such cases, I try and counsel the care givers as well. I share a few ways that they can deal with the pressure and encourage them to share their responsibilities," explains Dr Shrestha.
Often the biggest hurdle is to realize that there is a problem. Rachit, for instance, has only now begrudgingly admitted that some professional counseling could do him some good. His wife at the moment is consulting some therapists and she too plans to attend the session. Even small steps such as support groups can go a long way in helping caregivers all around. After all, only if the caregivers themselves take care of their own health, and state of mind, can they provide better care to their loved ones.
*names changed
priyankagurungg@gmail.com
Related story
Actor Mumtaz hospitalized with IBS: Know what the condition is...
