Look around. Whom do you see?
Women, men, teens, grandparents, spouses, sisters, brothers, friends, significant others. Nurses, home-health aides, doctors, Visiting Angels, hospice care workers, social workers. Priests, nuns, ministers of every denomination. People of all races and ethnic origins. All across the world, in every country, we are there. We are the caregivers.
Yet we are alone.
Every story is different. Every caregiver fails in his or her own way. The guilt eats at us. The lack of sleep drains us. The accusations of neglect and abuse by loved ones suffering from dementia or brain injury haunt us day and night. We feed and clothe and them. We bathe them. We cry for them and with them. We love them. And some days we don't like them. We go to battle for them and we beg for some time away. We are part of you and we are alone.
My husband and I planned for the time when one or more of our parents would need care. We would bring them into our home and provide a safe, loving place for them as long as it was needed. It would be hard, but life is difficult sometimes.
Living with and caring for my father-in-law, Rodger, was far more difficult than I ever imagined. I never suspected his quirky behavior was due to schizophrenia, first diagnosed in his early twenties and long hidden from members of the family, including my husband and me. Not only had the disease affected his life, but so had the years of powerful drugs that enabled him to function. His memory and ability to reason were vastly diminished. Suspicion and paranoia made it impossible for him to trust me while I, innocent that I was, trusted him when he said he took his medication.
Although he lived for five years after his last psychotic break, he never really recovered from it and the near fatal bout of pneumonia that he came down with while in the hospital. After that came the heart attack, followed by surgery to implant a pacemaker. The pacemaker led to blood clots forming in his arm. Blood thinners requiring regular blood tests caused him great anxiety.
"What is the government doing with my blood? Why do they need so much?" he'd ask.
My suspicion that he was developing Parkinson's disease was deemed incorrect, until months later when it could no longer be denied. The disease ran in his family and his sister had recently died from it.
He needed a walker and could no longer use the stairs. Severe swallowing problems meant pureed food and thickened liquids made up his diet. I learned to cook food that tasted good and offered as much nutrition as possible, but even I had to admit that the meals looked awful. Dementia came next, bringing the phenomenon of sundowning along with it. No one slept much, once that started.
When people learned I was a caregiver they would say they understood. Some may have related, on some level. But, I knew deep in my heart that they could not truly comprehend it.
How could they?
His life was his own. His back story defined who he became. His history of illnesses was as convoluted and complicated as his mind. He needed so much. What he got was one woman, part of a vast army of caregivers who tend their loved ones alone.
Who are the informal caregivers?
Although there may appear to be wide discrepancies in estimates of the number of informal caregivers in the U.S., the figures cited below reflect variations in the definitions and criteria used in each study (e.g. age of care recipients surveyed or relationship of caregiver to care recipient).
- 65.7 million caregivers make up 29 percent of the U.S. adult population providing care to someone who is ill, disabled or aged.
- 52 million caregivers provide care to adults (aged 18+) with a disability or illness.
- 43.5 million of adult family caregivers care for someone 50+ years of age and 14.9 million care for someone who has Alzheimer's disease or other dementia.
- LGBT respondents are slightly more likely to have provided care to an adult friend or relative in the past six months: 21 percent versus 17 percent.
The National Alliance for Caregiving and AARP (2009), Caregiving in the U.S. National Alliance for Caregiving. Washington, DC. Coughlin, J., (2010). "Estimating the Impact of Caregiving and Employment on Well-Being: Outcomes & Insights in Health Management," Vol. 2; Issue 1 Alzheimer's Association, "2011 Alzheimer's Disease Facts and Figures, Alzheimer's and Dementia," Vol.7, Issue 2. "MetLife: Still Out, Still Aging 2010. Study of Lesbian, Gay, Bisexual, and Transgender Baby Boomers"