Challenges of Caring for Someone with Parkinson’s

Caregivers and care partners face many challenges in caring for a loved one with Parkinson’s disease (PD). The disease impacts more than just the patient, and the care partner often has a significant level of responsibility in helping their loved one.

Providing daily care

People living with PD want to be as independent as possible, and it may be a struggle for the person with PD to allow assistance. The need for assistance may vary based on how well medications are working throughout the day, and assistance needs increase as the disease progresses. Daily care assistance may include helping your loved one get dressed, feeding them, and helping them move from room to room.¹

Managing medications

People with PD may take multiple medications throughout the day to treat their symptoms. As a caregiver, you may be responsible for ensuring that prescriptions are refilled in a timely manner (before they run out), filling pill dispensers, and keeping track of the dosing schedule. Many people find it helpful to use alarms or reminders on their phone to alert when it’s time for the next dose of medication. Another important aspect of medication management is watching and noting any side effects the patient experiences. Any changes in the patient’s physical, mental, or emotional well-being should be discussed with the doctor.^1,2

Making financial decisions

Many aspects of running the home may increasingly fall to the care partner as PD progresses. One of these areas is financial management. PD can bring additional financial concerns, as you consider home modifications, medications, physical therapy, and in-home care support.¹

Being a health care advocate

Part of being a care partner is helping get the patient to doctor’s appointments and taking part in the discussions with the doctor. It’s often helpful to have two people listening to the doctor’s recommendations, as well as asking questions. Find a healthcare professional with whom you feel comfortable, and feel free to get a second opinion if you want additional options or a different course of treatment.¹

Navigating the moods of the patient

People with PD may have emotions come up as they grieve the loss of their former abilities. Sometimes they may feel frustrated and lash out in anger or insist on doing something they should not, such as climbing a ladder when they have balance impairment. As the care partner, you may need to establish limits on their activities and have compassion for their emotional outbursts. Many people with PD also experience mood changes, such as anxiety and depression, and these symptoms should be discussed with the patient’s doctor to facilitate proper treatment.¹

Finding time to take care of yourself

It may be tempting to put the needs of your loved one with Parkinson’s first, and sometimes that may be a necessity. However, your needs also deserve to be met. You may need to consciously focus on time to relax and accepting support from others. Try to set aside time each week when you can take a break and engage in activities that bring you joy and energy.¹