Parkinson’s Disease Care-Partners
A diagnosis of Parkinson’s Disease (PD) can be overwhelming to the individual and their families and friends. However, it’s important to know that while the condition is degenerative it is not a terminal diagnosis. People can live well for many years with PD. PD manifests in a wide variety of motor and non-motor symptoms. These may include changes in digestion, sleep, speech, and urination. One may also develop tremors, slow movement, a flat affect, and mood changes. Symptoms vary by person. Having such a wide variety of symptoms can make living with PD challenging. Living with such a difficult disease increases the importance of healthy, supportive relationships. Support from care-partners is very essential for building one’s morale, resiliency, and wellbeing.
During my internship in ReGenerations at the Continuum I have discovered much about Parkinson’s Disease, the people living with it, and their care partners. One significant lesson was observing the value of authentic relationships between people living with PD and their care partners. I found it interesting that while speaking with individual club members living with PD, they did not openly discuss their condition. However, they initiated conversations about their care-partners in such a positive light. They expressed love and thankfulness for their own personal care-partners. One gentleman openly expressed feeling unable to do many things without his wife’s help. His voice sounded very grateful for all that she did for him.
A second realization was how the staff assumed the role of care-partners with Regenerations members. Observing members interact with the staff was very special to see. The staff has the most respect and love for their clients and it is reflected back by their members. The club members themselves reported their appreciation for having their needs met, being listened to, engaging in playful joking and laughter, and the happy faces of the staff.
Third, I witnessed how having quality care-partners can empower and equip people living with PD to stay more independent and age-in-place, reducing the likelihood of being put into assisted living/nursing homes. Care-partners are wonderfully brave people who take on much responsibility. They often need to educate themselves on PD, to the point of being experts. They must plan and attend multiple doctor’s appointments, observe and document any new symptoms or changes in behaviors, and share the emotional needs of both themselves and their partner. Most care-partners are happy to help and make selfless sacrifices to do so. However, it is very important for care-partners to take time for themselves. Whether this be taking a warm bath when their family member is sleeping, or doing something they enjoy. The small moments taken for themselves will help reduce exhaustion and burnout.
Learning about PD, those who live with it, and those who care for them expanded my understanding and respect. I hope to continue to educate others about the important role of care-partners and the financial, physical, and psychological costs of caregiving. Having a greater understanding of care-partners’ experiences may empower others to join their efforts by offering practical help and providing much needed respite.