April is Parkinson’s Awareness Month. As a care provider for people with Parkinson’s disease, we welcome the opportunity to increase awareness about this disease and highlight how we support our residents living with Parkinson’s and their families.
We interviewed residents, family members, caregivers, and members of our leadership team, asking them to share their experiences living with or caring for someone with this disease. Each person brought unique insights and expertise:
Janet
Resident
Joan
Spouse & Care Partner of Resident
Destiny
Caregiver
*Struthers Site Champion
Zach Parlier
Director of Team Member Development
*Struthers Site Champion
Katie Rinehimer
Director of Quality of Life
*Struthers Site Champion
Alicia Ferrari, RN
Director of Health Services
*Struthers Site Champion
What does Parkinson’s Awareness Month mean to you?
Katie Rinehimer
Director of Quality of Life
April means that for one month, there is a greater focus on Parkinson’s Disease (PD) and what it means to live your life with PD. We take a deeper organizational dive into educating English Rose caregivers, professional partners, and families on what it means to live your life with PD. The Parkinson’s journey is lengthy, complicated, and challenging. Educating and supporting those living with PD and their care partners is core to English Rose’s approach.
Zach Parlier
Director of Team Member Development
It’s very important that people are talking about Parkinson’s. Most care facilities do not invest in Parkinson’s education, forcing their caregivers to make assumptions about how to interact and care for people living with the disease. This approach undermines a person’s health and independence. At English Rose, we understand how crucial it is to educate our caregivers about Parkinson’s and how best to care for our PD residents and clients.
What is one thing you think everyone should know about Parkinson’s?
Janet
Resident
Those of us with Parkinson’s are slow. We take our time with things. When I get stuck, people say, “hurry up,” and that makes me feel rushed.
Katie Rinehimer
Director of Quality of Life
The best gift we can give someone living with Parkinson’s disease is time. They need time to process a response to questions. They need time to move their bodies. They are not as fluid with movement as everyone else. They also need time to work through their emotions because PD can cause emotional irregularities.
Zach Parlier
Director of Team Member Development
Because they are not always severely cognitively impaired, people living with Parkinson’s disease want to do things independently for as long as possible. This is an issue of dignity because taking away someone’s independence is so demoralizing. It’s our job as caregivers to empower people living with Parkinson’s rather than do the job for them.
Joan
Spouse & Care Partner of Resident
Delusions are a symptom of Parkinson’s that presents more frequently as the disease progresses. As a care partner, it is so important to learn the skills to help manage delusions. The more you learn about the disease and how to support a person living with it, the better prepared you are when these symptoms appear.
Alicia Ferrari, RN
Director of Health Services
People with Parkinson’s are likely in a state of discomfort at all times. Every system in the body is impacted, from digestion to cognition to musculature to skin.
Destiny
Caregiver
It is very important to remember that a person living with Parkinson’s disease is not always significantly cognitively impaired. I always make sure that they have a voice in all decision-making. This is their life; we are operating on their time.
How does English Rose partner with Struthers Parkinson’s Care Network?
Zach Parlier
Director of Team Member Development
Through our Struthers partnership, everyone at English Rose receives specialized training on how to care for people living with Parkinson’s disease and Atypical Parkinsonism. We also have eight team members who have received additional training to become “Struthers Site Champions.” Site Champions share their expertise and knowledge to provide ongoing support to our caregivers, nursing team, residents, clients, and family members. Struthers also conducts regular surveys with our residents and their families to ensure that we are continuously meeting our training goals.
Joan
Spouse & Care Partner of Resident
We worked with the Struthers Parkinson’s Center when it was time to explore care options for my husband. Struthers maintains a list of facilities that receive ongoing PD training, and English Rose was on that list. Today, I attend a Struthers support group, and my husband enjoys participating in their virtual choir.
How has the training at English Rose helped you care for someone with Parkinson’s?
Alicia Ferrari, RN
Director of Health Services
I learned many things during our training that I did not know about Parkinson’s, even after working in geriatrics for over 14 years. Learning about cellular changes caused by PD helped me better understand what some of our residents and clients are going through. The training helped me better understand the relationship between medications and their symptoms, the importance of giving those medications on time, and the importance of including extra time for rest and recuperation in the care plans of our PD residents and clients.
Destiny
Caregiver
The number one thing I learned is the importance of giving medication on time. With Parkinson’s, you have a 15-minute medication window, and it’s critical that people take their medicine within that timeframe; otherwise, they will feel tired and struggle with communication. Missing the medication window can also lead to falls because a drop in blood pressure can cause dizziness.
Zach Parlier
Director of Team Member Development
The training teaches the importance of being as absolutely patient as possible. A person living with Parkinson’s is fully cognitive and aware of their circumstances. Having patience is the best way to support their independence. Receiving training on Parkinson’s disease is not standard practice in our field. Having a whole team that is PD competent means English Rose can deliver the highest quality of care to our residents and home care clients and better support and educate our families.
When it comes to caring for people with Parkinson’s, what makes English Rose unique?
Janet
Resident
English Rose works with a great team from Above & Beyond Senior Services for my occupational and physical therapy (Megan and Claudia are the best!). I have an electronic wheelchair I call “the Tesla” that helps me move around, interact with everyone, and go for walks. My whole care team understands the importance of my deep brain stimulator for helping me manage my symptoms. Most importantly, with staff support, I am able to maintain my independence. I go on lots of outings, including shopping at the mall, hair appointments, movies, Snuffy’s Malt Shop, the Arboretum, and visiting my family.
Joan
Spouse & Care Partner of Resident
English Rose stands out from all other care providers because it has a stable staff of caregivers and nurses who are all very well trained. For people living with Parkinson’s and dementia, that stability and ongoing familiarity with the same staff is so important. Lots of places will tell you that they have this, but they don’t. English Rose delivers on that promise. I have enormous peace of mind knowing that I don’t need to be present to ensure that my husband will receive the care he needs.