Parkinsons From Two Sides

In 2010, I accepted a position as the manager of a Parkinson’s outreach program. After devoting four years helping patients with Parkinson’s and their caregivers cope with the disease professionally, my own mother was diagnosed with Parkinson’s. It is one thing to deal with Parkinson’s from a professional standpoint but separating the professional from personal life can be challenging.

Parkinson’s is a complex disease that not only affects the person who was diagnosed but also the ones who love and care for them the most. When someone is diagnosed with Parkinson’s they are faced with questions, fears, and day to day management of strange and often difficult symptoms. On the other side of this is the caregiver who is faced with their own set of questions and fears; what is going to become of my loved one? What will they need from me? How will this affect our life together?

I encourage the caregivers I work with to discuss these concerns in caregiver group meetings and one-on-one with me. But what if you share the same concerns? When you are the professional who caregivers look to for guidance and support, who do you turn to when you might need the same?

Both the person with Parkinson’s (PwP) and the caregiver must process, accept, and begin living life with Parkinson’s. It can be difficult initially for the caregiver to know how to respond, what to say, and whether concerns can and should be shared. For me as a Parkinson’s social worker, I find it challenging at times when dealing with my own mother to separate the social worker part of me who promotes education and being proactive, from being the daughter to someone resistant to thinking about the future.

In the early stages, life goes on as usual and many caregivers are not that involved with the day to day management. But over time as the disease progresses more help is needed and the caregiver gradually takes on additional duties; and both the PwP and caregiver must adjust to these changes. The tricky and often delicate dance between being helpful and taking over can create tension within a relationship. As the caregiver gradually takes on more responsibility, the PwP is giving it up. The scales become unbalanced and this can create tension and frustration within the relationship. Both are trying to navigate through the changes a chronic condition causes while trying to strike a new balance. The need for the caregiver to take on a more commanding role changes the relationship dynamic. My own mother does not want her daughter to be a social worker to her and sometimes separating the roles is difficult.

Role reversal, whether it’s within a marriage or parent-child relationship is challenging. Communication is key to working through these challenges. If either the PwP or caregiver are feeling stressed or frustrated over their situation, it is important to discuss this together or with a counselor.

Other challenges, such as issues with depression, anxiety, apathy, or even cognitive changes can impact the caregiver and the relationship with their PwP. Witnessing a loved one’s personality change is difficult. Sometimes it is not the issue of inability to do something as much as disinterest. In my work, caregiver’s often express to me the frustration associated with the vicious cycle of nagging when trying to motivate their loved-one. They try their best to get their PwP to do things they feel are important, such as exercise, but when they don’t get the result they hoped for, they end up frustrated, sometimes openly, and then upset with themselves (for getting frustrated). Usually born out of anxiety about what this might mean for the long-term quality of life of their loved-one, the cycle of nagging serves no positive purpose for either and only creates stress and resentment for both.

With my own mother, I have found the lack of interest in exercise, a key to fighting effects of the disease, the most frustrating. The sense of urgency I feel at times, versus the lackadaisical response I often receive is disheartening. The very thing I try to encourage the caregiver’s I work with to try and avoid, I find myself doing. Reframing the approach to be encouraging and a “cheerleader” instead of nagging is more effective. But, the struggle to practice what I preach is real.

The bottom line is, despite Parkinson’s being introduced into a family’s life, the relationship shared between the PwP and caregiver is still there and needs to remain central. We as caregiver’s are fighting the disease on the offense, while the PwP’s are fighting the defense. But, both are fighting the same fight. For me, this means accepting the things I can’t change, advocating to change the things I can, and to keep love at the forefront.