Practical help for the family members doing the caring.
Book a free 15-minute callMost of life with Parkinson's happens at home, not at the doctor's office. That puts a lot on the family. Medicines have to happen on time. The house has to be safe. And the person doing most of the caring needs support too.
About 1.1 million people in the U.S. live with Parkinson's, according to the Parkinson's Foundation. This page is for the families helping them at home.
Diagnosed before 50? See our young onset groups and guides.
Needs change over time. Early on, a person may need only a few small changes. Later, they may need help every day. Home care for Parkinson's often includes:
Help with bathing, dressing, and meals
Keeping medicines on schedule
Making the home safer
Staying active
Getting to appointments and keeping the care team informed
Company, patience, and emotional support
Some families do all of this themselves. Others bring in paid help, like a home care aide or a home health nurse. The right mix changes as needs change.
Timing matters with Parkinson's medicines. A late or missed dose can bring symptoms back. The Parkinson's Foundation's advice is simple: medicines on time, every time.
Ways to stay on schedule:
Falls often become more common as Parkinson's moves along, says the Parkinson's Foundation. Small changes help:
Some people "freeze" in place while walking. If you see this, tell the care team, since freezing raises the risk of falling.
An occupational therapist can suggest home changes that fit the person. A physical therapist can teach safer ways to stand, turn, and walk. Ask the doctor for a referral.
The Parkinson's Foundation says exercise improves balance, mobility, strength, and brain health. Many areas offer classes made for people with Parkinson's, such as boxing and dance. Ask the care team what is safe, then find a class you enjoy.
Find classes in the TriangleA steady routine makes each day easier. Try to keep waking up, meals, medicines, exercise, and rest at about the same times. Plan harder tasks for the times of day when medicines are working best. A routine also makes it easier to hand off care to another helper.
Parkinson's can make a face look blank and a voice sound soft or flat. Family members sometimes read this as sadness or not caring. Often it is the disease, not the person's feelings. Give extra time to answer, and ask rather than guess.
Parkinson's can also change mood, sleep, memory, swallowing, and digestion. Keep a simple log of what you notice and share it at appointments. Call the doctor about new trouble swallowing, new confusion, or seeing things that are not there.
Caring for someone with Parkinson's is a long road. The work grows over time, and it is easy to run out of steam. Watch for these signs in yourself:
These are signs you need more support, not signs you are failing. Places to start:
Watch for:
Talk with the care team when you see these. Planning the next step before a crisis gives you more choices. Next steps might include a home care aide, home health services, an adult day program, or a move to a place with more support.
We help families living with Parkinson's, from early changes to late-stage care. It starts with a free 15-minute call. Next, your Domain Assessment looks at all nine areas of life, built on the social determinants of health. Then your Care Map spells out what is in place, what is missing, and what to do next, with checklists for this week, this month, and the next 3 months. On our monthly plans, we re-evaluate your Domain Assessment and Care Map every 90 days.
How much we do depends on the plan you choose:
Your Domain Assessment and a written Care Map, with resources picked for your situation.
Monthly check-ins and research to help you carry out your Care Map.
A coordinator who works with your providers, handles scheduling, and meets with you monthly.
Everything above, plus crisis planning.
We do not replace your doctors. We help your family and the care team work from the same plan.
Helpline 1-800-4PD-INFO (1-800-473-4636), plus free guides on hospital safety and home safety.
Visit the Parkinson's FoundationA free guide to the early years with Parkinson's, and Fox Trial Finder for research studies.
Visit the Michael J. Fox FoundationThe free Every Victory Counts manual, plus monthly webinars and meetups.
Visit the Davis Phinney FoundationSupport groups, education, and events in North and South Carolina.
Visit the Parkinson Association of the CarolinasMore support for Parkinson's families and caregivers.
Start with a free 15-minute call. We will listen, and help you take the next step.
Book a free 15-minute callOr call (984) 362-8904
Based in Wake Forest, NC. Care coordination and coaching by phone and video, nationwide. Therapy for North Carolina residents.
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