Tips and strategies for Parkinson's disease caregivers

Parkinson’s disease is a neurodegenerative disorder that causes the loss of nerve cells in the regions of the brain that control movement. The primary symptoms are tremors, slowed movement, and difficulties with walking, coordination, and posture. As the disease progresses, it can also affect how a person thinks, behaves, and understands the world around them.

It is also a condition that can have a tremendous impact on loved ones, especially those who are acting as caregivers.

Caregiver burden and burnout

Caring for a loved one with a chronic condition like Parkinson’s disease can be a rewarding experience. At the same time, it can also put a strain on many aspects of a person’s life—it can affect emotional well-being, relationships, personal finances, professional life, social life, mental health, and physical health. The term for this is “caregiver burden.”

Caregiver burden often increases as Parkinson’s disease progresses. As symptoms become more debilitating, a caregiver must take on greater responsibilities, and must also cope with the emotional and psychological impact of watching a loved one live with a severe illness.

As a caregiver, it can become difficult to prioritize your own needs or take a needed break from your responsibilities. Strain can become stress can become “caregiver burnout,” a state of exhaustion and chronic emotional stress. A person experiencing caregiver burnout may feel mentally and physically fatigued, may not be able to think clearly, and may have a change in mood and attitude, becoming frustrated, angry, and indifferent to the caregiving role.

Taking care of yourself as a caregiver

Not everyone experiences caregiver burnout, and there are strategies that can help a person ease the stress and strain of being a caregiver:

• Stay organized. Keep a planner with appointments, tasks, obligations, and any other responsibilities. Have a filing system for medical paperwork. Staying organized can help the different aspects of caregiving feel less overwhelming.
• Make time for yourself. Set aside time to do something that you enjoy and do not feel guilty about it. Read, play a game on your phone, call a friend who makes you laugh, do nothing at all. The time is put to good use if it helps you recharge.
• Share activities with your loved one. It can be good for you and your loved one to do something that is not related to Parkinson’s disease. Order take-out, watch a movie together, try a new hobby, give yourself a break from the routine.
• Take care of your health. Keep up with your own healthcare appointments, make time for exercise, eat nutritious food, stay hydrated, and pay attention to your stress levels and sleep habits. All of these topics are good things to discuss with your own healthcare provider.
• Maintain your relationships. Keep in contact with friends and family, even if it is just a text message or a quick phone call.
• Participate in a support group. Support groups offer the chance to connect with other caregivers who know what the experience is like.
• Work with a mental health professional. Talking to a counselor or therapist can help you recognize your own needs and find strategies to cope with the challenges of caregiving.
• Ask for help. Caring for a loved one with Parkinson’s disease is often too much for one person. Ask other family members and friends for help. Also look for local organizations that provide assistance to people with Parkinson’s disease and caregivers.

While the above strategies can serve as a guide, caregiving is a different experience for everyone. Pay attention to how you feel, what you are thinking about, and try to identify what you need.