Caregiving Tips: Helping a Loved One in the Later Stages of Parkinson’s

Navigating Parkinson’s disease (PD) can come with many surprises for the person living with the disease and those who love them. Since Parkinson’s progresses, symptoms often begin to complicate daily activities as a person progresses through the stages of PD.

Learning how to manage Parkinson’s is a constantly evolving learning curve that should always be modified to best suit both the needs of the person with Parkinson’s and the care partner. In this article, we highlight tips that can help your loved one adjust to these changes.

Daily Living

Moving

Movement changes are common in Parkinson’s and can become more difficult to manage in later PD stages. As a care partner, you can help your loved one move safely.

• Check that your loved one’s feet are placed firmly underneath before standing. You may need to help with proper foot placement.
• Remind your loved one to take big steps. People with PD often need “cues” to take long steps as automatic motions become more difficult to perform. Keep cues short and simple, for example by saying, “Big steps.”
• Find an occupational therapist. These rehabilitative experts can help your loved one maintain independence and ways care partners can assist.

Freezing and Falls

People with Parkinson’s sometimes experience freezing episodes, which is the temporary and involuntary inability to move. Freezing is a significant cause of falls, as it creates a feeling like your feet are glued to the floor.

• Avoid tight turns when possible. Instruct your loved one to make wider turns as freezing often happens while turning around in close quarters.
• Make a plan. Consider how you’ll access help in the event of a fall, such as calling a neighbor or friend.

Travel and Transportation

Leaving the home can be difficult, but outings to a doctor’s office or physical therapist are often necessary. Consider methods that promote safety and decrease care partner stress.

• Plan appointments around your loved one’s daily routine. Try to schedule appointments while the person with Parkinson’s is rested and PD medications are working well.
• Maximize your time. If endurance allows, schedule a few appointments on the same day, especially if they are in the same clinic or medical complex.

Read More: Traveling with Parkinson’s

Mealtime and Swallowing

Advanced Parkinson’s can cause difficulty with eating and drinking because of movement and swallowing problems. Making adjustments to mealtimes can help your loved one get the nutrition they need.

• Serve foods that are easy to eat. Avoid tough, dry, or crumbly textures that might be difficult to swallow.
• Focus on hydration. To ensure your loved one is drinking enough fluids, encourage sips of liquid between solid foods.

Caring for the Care Partner

Parkinson’s symptoms change over time, as will your role as a care partner. The most important thing to remember is that if you do not take care of yourself, you will not be able to take care of your loved one.

Caregiver burnout is a state of physical, emotional and mental exhaustion. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially. Caregiver burnout symptoms can include:

• Extreme fatigue unrelated to sleep
• Unusual frustration and anger
• Feeling “cloudy” or “foggy.” Often dismissed as age-related change, this can occur as a result of carrying too much responsibility and/or anxiety

These tips can help you navigate your own wellbeing as a care partner:

• Manage stress. Identify what triggers your stress and find ways to control your emotions, like writing in a journal or going for a walk.
• Seek connection. Connect with a Parkinson’s Foundation chapter near you to find local resources and events.
• Accept help. Make a short list of specific tasks that typically help you care for your loved one, so family and friends know what they can do to help when you need a break.

Read More: Self-Care & Caregiving Tips

Parkinson’s & Dementia

When thinking changes are mild, these symptoms often do not impact everyday life. But as Parkinson’s advances, more profound changes in thinking can occur, including dementia. Dementia is when someone experiences problems with memory and thinking that are advanced and interfere with daily activities and quality of life.

To improve communication, try these strategies:

• Ask one question at a time. Slowing down and asking one thing at a time can be helpful.
• Give hints and cues. Use short and simple phrases to provide cues. Give a short hint if your loved one has difficulty finding a word or loses their train of thought.
• Resist the urge to argue or correct. If your loved one is experiencing a delusion, try to find ways around the situation instead of contradicting them. It can be helpful to keep in mind ‘it is the disease making these accusations, not my loved one.’
• Look for community resources BEFORE you need them. Explore resources in your community, such as the Area Agency on Aging.

The Parkinson’s Foundation is here for care partners. Explore all stages of the care partner journey and essential information and resources designed to help along the way.