A personal plea for family caregiver support

As lawmakers in North Carolina determine the future of caregiver support services, we want to hear from those who are providing care to loved ones and value support services needed to assist their "labor of love." Here is one man's story:

 

Caring for My Wife: A personal perspective from a spousal caregiver

by Kalyan K Ghosh, Chapel Hill, North Carolina

My wife Abha and I were partners not only in our personal lives but also in our academic and scientific professions. We collaborated in teaching, research and university administration. We raised two children who are highly accomplished. After 35 years of successful professional careers, we chose to retire to enjoy life, travel extensively and spend more time with our four grandchildren. Retiring from our respective positions, we moved to North Carolina from Massachusetts and built a nice home. But soon thereafter, I discovered the signs of the looming sickness that was gradually engulfing her.

Before it happened to Abha, nobody in my family suffered from dementia or similar type of debilitating disease. Because of that, I was completely ignorant not only about the disease but also how to provide care for the person I loved so deeply and who actually took care of all of us in my family. My initial reactions were disbelief, arguments and angry outbursts like “why are you doing this to me and us?” Or “why me God?” These questions arose from the frustration and disappointment that we cannot do what we planned in retirement, from the fear of the unknown, and the uncertainty that I may not be able to cope with it or what would happen to her if I die first.

At the beginning, it did not appear that bad, (we were still sharing and communicating), just changing our roles in taking care of cooking and routine household chores which I did not mind that much. As the disease progressed through stages and she entered into deep emotional, delusional, and psychotic outbursts that were completely unpredictable, uncontrollable and often unstoppable, I was completely at a loss with myself. I was clueless on how to handle the episodic events and manage the situation both minute-by-minute and day-by-day. I could not sleep when she did not, or leave her alone at home for even few minutes because of my fear for her safety.

I felt very lonely and helpless in this unchartered, turbulent journey with its’ mammoth responsibility and no help from my children (who cared much but who live hundreds of miles away), from my friends who often offered to help but in time of need I found none (with the exception of few) and no meaningful community support. I did not even know who to turn to at the time.

I suffered from myriad emotional issues realizing that in effect I have lost my life partner (when she could not figure who I was and declined to accept that I was her husband) and being left with a patient who I love deeply and must take care of, but not sure how to and from the feeling that the world we wanted to live and enjoy together has crumbled under our feet. Extreme stress, “36 hours-a-day” work load and elevating blood pressure began to take toll on my health requiring a few emergency hospitalizations for myself.

But, as time progressed I evolved with her disease and learned how to cope with it. Eventually, she became calm -- with the help of medications off course -- and gradually turned herself back to an innocent, know-nothing childlike state that was easier to handle with love and compassion. I finally began to realize that some of the apparent abuses that I received from her (caregiver being the worst enemy), was not coming from her but from her diseased state of mind. That gave me solace and peace of mind and helped me provide compassionate care for her as long as she lived. Today, as I look back at my life, I feel taking care of my wife was unquestionably the most important thing I did. Deep inside my core I feel gratitude to her for who she was and what she did for me and our two children. I feel no bitterness for the hard times we endured but a profound sense of pleasure and of fulfillment that I was there for her when she needed me most and witnessing her defeating the monstrous disease by freeing herself from its torturous claw.

We did a few things proactively that helped in coping with the situation. For example, we bought long- term care insurance that helped me pay for her adult day care, used home-based companion care and eventually resorted to full-time nursing home care. Once I began to get respite support, it helped me considerably in taking care of myself both physically and mentally. I guess we were lucky to have had the financial resources for services from care agencies. But, I sometimes think more deeply about what would or could have happened if we had no financial resources to take care of my wife.

There are thousands of middle-class families in our communities, state and the nation where the disease is ruining the families of caregivers coping with the loss of their loved ones and their finances. Dementia is one disease not supported enough by state or federal programs. The United States is the only developed country where that is the case. Most European countries take care of the families providing caregiving assistance.

Today’s family caregivers have little idea where to seek help. There is not enough public information provided by physicians or first responders and no financial resources from the governmental agencies that families can apply for. I firmly believe that as much attention the physicians pay to dementia patients, more attention and support should be provided to caregivers for respite care. Absent that support, increasing numbers of families providing caregiving services will continue making extreme personal sacrifices and will suffer from immense emotional and financial losses that are hard to avoid and overcome.

 

If you are moved by this story or those of other family caregivers you know, take action today!