When Karen Anderson’s husband, Roger, went into the hospital to undergo surgery for a herniated disc, it should have been a fairly straightforward procedure except for one thing, he had Parkinson’s disease. Like any spouse, she was nervous about the operation but assumed that her husband was in good hands.
Karen was not prepared for what was to come. After explaining Roger’s medication schedule to the medical team, she was astonished to find out how unaware they were about this part of his care. With each shift change, she had to go over his medication schedule with every new doctor and nurse. And when Karen wasn’t by her husband’s side, he didn’t get his medication on time. He was even given a drug not meant for Parkinson’s patients.
As time went on, the situation got worse—Roger suffered hallucinations and couldn’t communicate with the doctor. “It was a horrible nightmare that I could not wake up from,” recalls Karen of that alarming experience. “Here I was, the distraught spouse trying to fight for my husband’s life—and I had to constantly find ways to care for him.”
Therefore, if you ask Karen how she became an advocate for people with Parkinson’s, she’ll tell you she didn’t have a choice. She’s been on this road for more than twenty years with her husband, who was diagnosed with Parkinson’s at the age of 47. As a full-time caregiver, she’s advocated for her husband every step of the journey. Looking forward, she plans to make sure every person with Parkinson’s has an advocate for good care when they need it the most—in the hospital.
When Roger had to go back in the hospital for surgery but this time Karen was proactive. She consulted with his surgeon beforehand and made copies of his medication schedule for everyone on staff.
“The Aware in Care kit is a life-saver; as a person with Parkinson’s or a caregiver, you have a role to play in advocating for your own quality care. Make sure you carry your medication list with you and be aware of the medications you take and what happens if you don’t take them,” stresses Karen.
*Roger ended his battle with Parkinson’s, but Karen continues to offer her support to caregivers in her area.
Our Aware in Care kit can be ordered at awareincare.org