Every April during Parkinson’s Awareness Month, I find myself thinking about the many English Rose residents and home care clients living with Parkinson’s disease, the second most common neurodegenerative disorder. The most common is Alzheimer’s disease, and caring for people living with dementia is how English Rose got its start in 1997. Over the course of our 27-year history, however, as we expanded our services to include care for people with any complex medical condition, Parkinson’s has become an English Rose specialty.
At English Rose, we do not prescribe to a one-size-fits-all formula. Our care approach is highly personalized, reflecting an individual’s unique circumstances and preference. So while a symptom of Parkinson’s can include cognitive impairment, it usually occurs, if at all, in the later stages of disease’s progression. For most people living with Parkinson’s, it is a physical disease, and our approach to care reflects this important fact.
“Caring for someone with Parkinson’s requires, above all else, patience”
- Zach Parlier, English Rose Administrator
In many care environments, residents with moderate to advanced Parkinson’s disease who move slowly or have difficulty speaking are often misperceived by caregivers as either having cognitive impairment or just being stubborn. Both interpretations are wrong and often lead to frustration for both the resident and caregiver. English Rose caregivers, all of whom receive specialized Parkinson’s training, know that people living with Parkinson’s need time to move their bodies. They need time to process a response to questions. They need time to work through their emotions. English Rose caregivers understand that the worst thing you can do to someone living with Parkinson’s is expect them to do things quicker or take away their independence and agency.
Staff in a typical care environment are not just undertrained, they are also overworked. The average caregiver-to-resident staffing ratio in Minnesota long-term care facilities is an astonishing 1:18. These caregivers do not have the opportunity to slow down, offer their residents choice, or provide the most appropriate accommodation for each individual. Because efficiency is paramount in these environments, caregivers are often forced to take shortcuts that compromise a resident’s independence. For example, they may choose to use a mechanical lift and wheelchair to help a resident make it to breakfast on time, when all that was required was patience and a little assistance with mobility.
In addition to specialized training and the ongoing mentorship from ten “site champions” certified by The Parkinson’s Foundation, English Rose caregivers also benefit from access to the resource Parkinson’s caregivers need most: time. At English Rose, the caregiver-to-resident staffing ration is an astonishing 1:3. This unique staffing model allows our Parkinson’s residents to live life at their own pace, and enables our caregivers to play the role of “patient enabler.” It is not our job to make decisions or do things for our residents living with Parkinson’s disease. We are here to help them live independently and let them take as much time as they need to do it.
Parkinson’s may be a life changing disease, but people don’t want to stop living because of it. It fills me with great joy that at English Rose, they don’t have to.