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For the past three years, my sister and I have shared caregiving responsibilities for our mother, who suffers from dementia and advanced Parkinson’s disease. We care for her at home and have watched her mobility and cognition slowly deteriorate. Two months ago, she suffered a health crisis that her doctors couldn’t explain.
As family caregivers, we help our mom with just about everything — cooking, bathing and dressing, helping her manage medication and taking her to appointments. On the day in question, my mother had a normal morning, then suddenly became completely unresponsive. She could not speak or move her legs, and she didn’t seem to hear or understand anything I said.
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Five hours later, her condition hadn’t improved, so her newly assigned home health aide and I got her into the car and to an emergency room. After a week in the hospital, she was transferred to rehab, where she stayed for six weeks. I visited daily, often spending hours at a time. I saw what her days were like, got to know the staff and observed her care.
Expect challenges, communication issues
When transitioning from a hospital to rehab, there are numerous things you can do to make the move easier, including researching rehab facilities in advance, speaking with a hospital discharge planner or social worker, investigating costs and frequently communicating with staff to monitor care and progress. Though my sister is a nurse, and we have been investigating and visiting rehab facilities for more than a year, we did not anticipate many of the challenges we encountered.
Here is some of what we experienced — and what we learned.
Speak with as many people as possible
For the smoothest transition from hospital to rehab, speak with as many staffers and aides as possible as soon as possible. At the hospital, information was not relayed among staff or properly inputted into the computer, so I found myself having the same conversations over and over and correcting mistakes among multiple staff members. My mother’s vegetarian diet was not recorded; her allergies were misrecorded; and though she struggles to bite into large food, her food wasn’t cut up.
The day she was transitioned to rehab, I walked around to find and speak with her new nurse, social worker, dietitian, physical therapist, occupational therapist and activity coordinator, so we could determine daily activities well-suited for my mom. In some cases, I found who I needed by simply speaking with people at the front desk or staff that happened to walk into my mom’s room.
In other cases, I had to find the office of certain people, knock on doors and wander hallways until I eventually ran into them. Some staff (usually higher-ups) suggested we arrange meetings, but others recorded my request right there and passed it on. I learned that the wrong allergy information the hospital noted was passed on to rehab, along with a hospital-prescribed blood pressure medication that neither we nor our mom’s primary doctor found necessary. Having these conversations quickly allowed me to get a head start on smoothing out the transition.
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