Topics in Caregiving
As your family member or friend with Parkinson's disease (PD) declines, new topics will arise for the caregiver. We've assembled some good resources on these caregiving topics:
• Caregiver stress can occur when the caregiver neglects his/her own physical and emotional health. It is characterized by physical and emotional exhaustion. Learn the signs of caregiver stress and make changes to your daily routine to incorporate self-care, including respite, good nutrition, sleep, exercise and emotional support. We list resources specific to PD caregivers and all caregivers.
• Anticipatory grief can be defined as the grieving of someone who is still alive. This type of grief is common among caregivers of those with degenerative or terminal illnesses. Recognize the signs of anticipatory grief and learn measures to manage the emotions involved. We list resources for both PD caregivers and all caregivers.
• In home care may be needed at some point in the disease course. Whether you are looking for companionship, personal care, respite care, legal advice, tax preparation, meal preparation or delivery, gardening, or transportation, our list of resources will help you find free, private pay, or government programs to meet your needs. None of these resources is specific to PD.
• Moving to a facility may be needed at some point. One common reason for facility-placement is the well-being of the caregiver or the well-being of the person with PD. Our list of resources can help you recognize when that time may be and find the right type of care facility to best meet your needs. None of these resources is specific to Parkinson's disease.
• Palliative and hospice care can be very helpful in the middle and end stages of PD. The focus of these services is high quality of life. Our list of resources can help you understand the difference between palliative and hospice care and how to choose the best hospice service for your family. A few resources are specific to PD.
• Advance care planning is an important step toward making sure you get the medical care you want when you are unable to speak for yourself and doctors and family members are making decisions for you. Our list of resources can help you choose your healthcare proxy, complete your living will and advance healthcare directive, and communicate your wishes to your family and physicians. None of these resources is specific to Parkinson's disease.
Last updated August 2020 by Stanford Parkinson's Community Outreach