Caring for the Caregiver

Where do most people with Parkinson’s disease live? At home — where loved ones provide most of the care. If you are a primary caregiver feeling stretched beyond your limits most days, that outflow of time and energy may be putting you on the road to burnout and depression. Not surprisingly, research from NPF's Quality Improvement Initiative shows that Parkinson’s caregivers of all ages experience high levels of strain, which can lead to caregiver burden — an alteration in one’s emotional and physical health. As the disease itself progresses, the burden of caring for your loved one increases as well.

Focusing on your loved one’s needs to the exclusion of your own is a formula for failure, said Kara Barton, MSW, LCSW, a social worker at the Center for Psychological Excellence at the University of Southern California, an NPF Center of Excellence. In order to be able to succeed in your role, you need to care for yourself even as you care for your spouse or parent. “If the caregiver collapses, everyone loses,” Barton said.

Here are some ways to ease the burden:

  • Seek out rehabilitation services. Research shows that improving the functional status of the person with Parkinson’s is an effective approach for relieving caregiver strain. Physical therapy, occupational therapy and assistive devices can all make a difference for both you and your loved one.
  • Learn to be interdependent. Bring more balance into your life by relying on community resources such as transportation services, in-home aides, adult day care and local caregiver groups. “Shift your thinking from independence to interdependence, and look at yourself as someone who is going to function in a new way — giving and receiving,” Barton said.
  • Assess yourself. If you are struggling with resentment and anger, or are just feeling bad most of the time, you must make some changes in order to turn this emotional scenario around. “Ask yourself, what can I do to feel good about myself again?” Barton said.“Work on becoming more mindful, paying attention to what you are doing and feeling in the moment, so you can better take care of yourself.”
  • Face forward. If the thought of your future fills you with anxiety and trepidation, begin to look for ways to increase control in your life. “Plan ahead and start taking simple steps to address those fears, instead of just being terrified,” Barton said.
  • Find out if your loved one is depressed.When people who have Parkinson’s suffer with depression, their caregivers report higher levels of caregiver burden than caregivers whose loved ones are free from the condition. Since depression is common in people with Parkinson’s, make sure your loved one is screened and, if diagnosed, getting the right treatment.

Caregiver Resources

  • Parkinson's Caregiving 101: learn how to navigate the various challenges of caring for someone with PD, what to expect at different stages and how to recognize signs of caregiver stress.
  • Get Connected: Join discussions with other Parkinson's caregivers to trade tips.
  • Personal Stories: Read stories of hope and inspiration from other Parkinson's caregivers.
  • NPF Helpline: Contact NPF's free Helpline with questions about Parkinson's disease and caregiving: 1-800-473-4636 or helpline@parkinson.org.

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