Primary Caregiving From Afar

The practical tips described under Secondary Caregiving from Afar barely touch the concerns of those of you who live far away from elderly relatives with PD and are the primary caregivers.

The practical tips described under Secondary Caregiving from Afar barely touch the concerns of those of you who live far away from elderly relatives with PD and are the primary caregivers.

Despite the distance, you must be well-versed in the needs and status of the person with Parkinson’s. Learn about his or her general health and all medications taken. Keep a list of your loved one’s doctors, specialists, pharmacist, care providers and neighbors along with contact information. Also keep financial and legal documents easily accessible in case they are needed.

Communicate regularly with the person with Parkinson’s and his or her local care providers, whether that means an in-home aide or the staff at a care facility. If your loved one’s needs change, you need to know what that will mean for him or her – more skilled in-home care, visits with a different medical specialist, additional prescriptions, new diet regimens – as well as what it will mean for you – more visits home, higher costs for care, etc. You can help assess changing needs during each visit.

Get Local Help

If you feel that you cannot adequately keep track of everything from afar, a geriatric care manager might be able to help. This rapidly growing professional group provides a variety of services, such as arranging financial, legal and medical services, in-home care providers and transportation, and they regularly communicate with family members. Fees vary depending on what services are needed, and it is important to know that geriatric care managers are not currently required to be certified by either states or the federal government. Therefore, it is recommended that you personally interview the prospective care manager, ideally during one of your visits, before engaging his or her services.

Be Kind to Yourself

Caregiving from a distance can be emotionally taxing, so make sure you have a support system in place. Explore the section Caring for You to find tips and tools for self-care.

In 2016, the Parkinson’s Foundation hosted a Caregiver Summit that brought together caregivers from all over the U.S. and the world to share experiences and everyday strategies for coping with the complex problems that arise as a result of Parkinson’s. If you missed the event, don’t worry! All the general sessions were recorded and are available on our YouTube channel.


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