Stories
The Human Face of Our Failure to Coordinate Care
Every day, in communities across the country, patients cope with extraordinary pressures from a health care system that doesn't coordinate their care. And family caregivers — including wives, daughters, husbands, sisters, grandchildren, other relatives and friends — struggle to help, often with little or no support.
The Campaign for Better Care's story collection project is putting a human face on these issues — to help translate personal struggles into the meaningful solutions we all need.
Feature Story
Yolanda from Georgia
After witnessing the medical ordeals and deaths of loved ones, “I’m just appalled at the way some hospitals and doctors treat their patients”
Growing up with a mother who is a retired registered nurse, Yolanda gained insights into the workings of the U.S. health care system. Through her own career in government administration, Yolanda became skilled at research and record-keeping, and used those skills to help loved ones manage complicated medical conditions. But even that background could not prepare her for the past 12 years....
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Your Stories
Kimberly in California
"[My dad] is 77 and maintains responsibility for taking care of my mom, who is 82. She has rheumatoid and degenerative arthritis. She recently had her hip replaced, which will hopefully alleviate some of her pain, improve her mobility, and enable my dad to have some personal rest and relaxation time. I do as much as I can, but have been diagnosed with terminal systemic lupus. I always promised myself I would make sure to take care of my parents; that they would never be faced with the prospect of having to enter a nursing home..."
Joann in Washington, DC on caring for her mother
"I am the primary caregiver for my mother who is an 81-year old African American with Parkinson’s disease. For several years, my mother was subject to numerous diagnostic tests, evaluations, and prescriptions — some redundant and/or unnecessary — in an attempt to identify the cause(s) of her symptoms. In addition to the lack of coordination between the disciplines, my ‘ah-ha’ moment was when I became aware that, besides the lack of coordinated care, few of the health providers with whom she regularly interfaced had the cultural competence to maximize their interactions with my mother and expedite the diagnosis process."
Helen in Pennsylvania on caring for her mother with Alzheimer’s disease
"[My mother] had been seeing several doctors in Florida and was receiving a number of drugs. Her new doctors in Pennsylvania have discovered she didn’t need many of them. Her medications are monitored, but because she is no longer capable of understanding what she takes or why she takes it, my husband and I have been making sure she gets her medications twice a day...She has a cell phone around her neck and I call her twice a day. I have a "key" where each medicine bottle is and tell her over the phone where to go to get the bottle. I ask her to read what it says on the bottle to make sure she is taking the right meds. This is the only way we can get her to take her meds without being there... I spend at least 30 minutes by phone helping her prepare coffee using the microwave, heating meals, pouring cereal and juice, etc. We receive all of her mail and pay her bills. This has not been a treat for us, but it’s working. I’m not looking to abandon her, but we could really use a break."
