Judy Bissett: A Caregiver's Story
In the past five years, my mother, now 80, has progressed rapidly in dementia. And in the past year, her condition has deteriorated quickly, and she now needs round-the-clock supervision. She's starting to lose the ability to speak and she has difficulty swallowing. This summer, she took a bad fall, so she is now bedridden. Her condition is further complicated by chronic obstructive pulmonary disease, or COPD.
Fortunately, our family is strong and dedicated to my mother's care. My father, also 80, is healthy and is the primary caregiver. He also manages the household. My sister, who works with profoundly disabled youth and is certainly good at meeting challenges, has taken family medical leave to live with our parents–giving up her income to do so.
As for me, I spend four nights a week in the family home to provide support not just to my mother, but to my father and sister, too. I'm a school principal, so I really work at my job every day in addition to caregiving. It all means that I live out of a suitcase and sleep in my own bed once a week.
For all of us, the biggest frustration in the past several years has just been finding the time to look for resources. At first, we thought the doctors could point us in the right direction and help us navigate the healthcare system, but that's not what doctors do, it seems.
If we had had one single source of information and guidance when this all began, we could have developed a "roadmap" for my mother's care. Information gives you the ability to plan — and planning makes all the difference in a situation like ours.