According to the National Institute on Aging, Parkinson’s disease is defined as a brain disorder that leads to shaking, stiffness, and difficulty with walking, balance, and coordination. Parkinson’s symptoms usually begin gradually and get worse over time. As the disease progresses, people may have difficulty walking and talking.

Each person with Parkinson’s is unique, and so is each care partner. As you start the journey, define “caregiving” for yourself. For some people, care partner is one of many roles, or a group they belong to. For others, it is a central characteristic. Many people do not like the term “care partner.” Especially early in the Parkinson’s journey, you might not feel like you are actually “giving” care.

Similarly, the person with Parkinson’s might not see himself or herself as someone in need of care. But remember, care is not limited to physical tasks. Care can be emotional and spiritual as well as physical.

Research from the National Alliance for Caregiving shows that when caregivers are asked what they want, the majority respond saying they want information about coping with being a caregiver.

The following tips can help you cope:

·         Forgive yourself for not being perfect. From the day your loved one was diagnosed; your world has been turned upside down. Your daily routine will change, as may your personal standards of housekeeping and other tasks. Accept your own humanity.

·         Acknowledge your right to feel emotionally off-balance. Recognize the hidden grief component of your anger, anxiety, guilt and depression. Expect adaptation to, but not resolution of, your grief. Accept it and seek out someone who understands it.

·         Determine your limits. What is your comfort level providing care? Some caregivers feel they can provide care at home for as long as others in the family can put up with the disruptions.

·         Be kind to yourself. Remember you are experiencing normal reactions to abnormal circumstances.

·         Seek out joy in your relationship with your loved one. Your hands-on duties, such as dressing your loved one, might feel like work, but these tasks bring you together. Add some fun to your hands-on care: sing songs, tell jokes, share goals and dreams.

·         Work with a trusted in-home care agency. As your loved one’s care needs change, you must continually reevaluate your need for help. At first you might just need someone to help pick up groceries every now and then. As the disease advances, your needs might evolve to include a day care service or a home health aide for a few hours at a time. Eventually, full-time home care or a skilled nursing facility might be necessary.

Resources: parkinsons.org, Caring and Coping by Joan Gardner, RN, BSN, Rose Wichmann, PT, Diane Breslow, MSW, LCSW, and Paula Wiener, MSW, LCSW