Parkinson’s disease is a movement disorder that can progress over time and may need long-term care. People with more advanced stages of Parkinson’s often need a caregiver, usually a family member, to help with daily life. These activities can include eating, dressing, bathing, using the bathroom, getting in and out of bed, and moving safely around the house.

Caregivers tending to loved ones with advanced Parkinson’s need to be ready for the changes involved as the disease progresses. Many MyParkinsonsTeam members who serve as caregivers for a loved one with Parkinson’s disease report challenges.

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One MyParkinsonsTeam member said, “My husband has had Parkinson’s for more than 25 years. He is at stage 4. For over a month, he has been seeing things that are not there. … We don’t share a room anymore. We haven’t for about three months. The reason is that he has very vivid dreams.”

Another member commented, “I’m caring for my husband. … Each day, there is something new and different to deal with.”

Just as people with advanced Parkinson’s need support, so do their caregivers. This article serves as a caregiver’s guide and talks about five ways to support your loved one while also taking care of yourself.​

1. Talk to the Doctor About Adjusting Medication

One important way to support your loved one is by helping ensure their symptoms are managed as well as possible. In advanced stages of Parkinson’s, many people have new or changing symptoms that may mean it’s time to revisit their treatment plan with a neurologist or movement disorder specialist.

“I’m caring for my husband. … Each day, there is something new and different to deal with.”

— A MyParkinsonsTeam member

You might consider bringing up a medication review if your loved one:

• Has lived with Parkinson’s for many years
• Is experiencing more tremors, rigidity (muscle stiffness), or bradykinesia (slowness) as medications start to wear off
• Shows signs of dyskinesia (involuntary movements), such as slow, twisting motions or sudden jerking of the limbs, face, or torso
• Develops nonmovement symptoms, such as trouble with memory or thinking, depression, anxiety, speech changes, constipation, vivid dreams or hallucinations, delusions, increased sweating, sleep problems, or sexual challenges

Doctors may adjust the timing or dosage of current medications or recommend additional treatments to better manage advanced Parkinson’s symptoms. Possible adjustments include:

• Changing the timing or dose of levodopa/carbidopa to reduce “wearing-off” periods between doses
• Using extended-release levodopa (Crexont) to provide a slower release of medication to stabilize dopamine levels
• Adding drugs such as rasagiline (Azilect) or entacapone (Comtan) to help extend dopamine activity
• Introducing treatments such as amantadine (Gocovri) to help control involuntary movements caused by long‑term levodopa use
• Prescribing rivastigmine (Exelon), which is approved by the U.S. Food and Drug Administration (FDA) to treat dementia (memory and thinking problems) in Parkinson’s
• Trying clozapine (used off label, meaning not officially approved for this use) or pimavanserin (Nuplazid) to help manage hallucinations or delusions
• Using medications that can help with sleep, such as clonazepam or melatonin
• Considering devices that deliver medication under the skin like continuous apomorphine infusion (Onapgo), continuous foslevodopa/foscarbidopa infusion (Vyalev), or continuous levodopa/carbidopa intestinal gel infusion (Duopa).

Always talk to your loved one’s doctor before making any changes to medications.

2. Look Into Device-Assisted Therapy

In addition to adjusting medication, healthcare specialists may suggest device-assisted therapy for those with advanced Parkinson’s disease. These therapies use pumps or surgical implants to deliver more consistent treatment.

The four main options are:

• Continuous levodopa/carbidopa infusion — This treatment can help reduce wearing-off symptoms and dyskinesia by delivering medication directly to the small intestine through a pump. The continuous flow helps keep dopamine levels more stable throughout the day.
• Continuous foslevodopa/foscarbidopa infusion — This treatment is also a pump that provides medication under the skin and treats motor symptoms.
• Apomorphine infusion or injection — Apomorphine is a fast-acting medication used during “off” periods when other Parkinson’s medications stop working as well. It can be given through subcutaneous (under the skin) injection or delivered continuously using a small pump worn on the body.
• Deep brain stimulation (DBS) — DBS is a surgical treatment where a neurosurgeon places small electrodes in specific parts of the brain. These electrodes deliver gentle electrical pulses that can help manage tremors, stiffness, and other motor symptoms. DBS is usually recommended for people who still benefit from levodopa but have serious movement problems or side effects.

Each of these options has benefits and potential risks, and not everyone with Parkinson’s is a candidate. Talk to your loved one’s neurologist or movement disorder specialist to learn more about what might be right for them.

3. Consider Physical Therapy for Balance and Gait

Even with the right medication plan, people living with advanced Parkinson’s may still struggle with gait (the pattern or style of how a person walks), balance, and frequent falls. Gait changes in Parkinson’s can include shorter steps, a stooped posture, or difficulty starting or stopping movement. These issues increase the risk of falling, which is why movement-based therapies, including physical therapy, can play a key role in managing symptoms.

Research shows that targeted movement training may help improve balance in people with Parkinson’s. For people with mild to moderate Parkinson’s, both resistance exercises and tai chi can reduce the risk of falls, according to a study in The New England Journal of Medicine.

Ask your loved one’s doctor which types of exercise or physical therapy might be safe and helpful based on their symptoms and stage of Parkinson’s. The doctor may also suggest ways you can help your loved one stay active, motivated, and safe while moving.

4. Know When You’ve Reached Caregiver Fatigue

Caring for someone with advanced Parkinson’s can take a toll on your physical, emotional, and mental well-being. Many care partners experience Parkinson’s caregiver fatigue, a deep, persistent exhaustion that builds over time. It’s important to recognize when you may need help, rest, or additional support.

You are more likely to be able to provide high-quality care for others if you’re taking care of yourself as well.

Signs of caregiver fatigue include:

• Neglecting your own health or daily needs
• Feeling isolated or misunderstood by others
• Worrying constantly about the future
• Feeling frustrated with your loved one, then feeling guilty about those feelings
• Being exhausted even after sleep
• Feeling depressed, hopeless, or overwhelmed

Members of MyParkinsonsTeam often talk openly about the emotional weight of caregiving. “My wife fell yesterday while I was showering, and I couldn’t hear her calls for help,” one member wrote. “Thankfully, she was just bruised. Felt guilty for not being there.”

Another said, “You do what you have to do for their care and your own self-care. One person can’t do it all. Don’t feel guilty.”

How Parkinson’s Can Affect Relationships

Parkinson’s doesn’t just affect the person diagnosed. It can strain even the strongest relationships. Many care partners are also spouses or long-term partners, and balancing the roles of caregiver and companion can be overwhelming.

“As a person who’s been married for 26 years, with the last four years trying to deal with my husband with this disease and my health issues, just make sure you’re in it for the long haul. It’s a big challenge — be sure you’re educated on this topic,” one MyParkinsonsTeam member shared.

Another wrote, “Hubby is in personal care, and I’m living at our home. His Parkinson’s seems to get worse every day. He’s now having delusions of me being with another man and divorcing him.”

Some members have turned to counseling or relationship therapy for support. Others have found it helpful to take short breaks during emotionally intense moments. Sudden changes in behavior or personality can sometimes stem from Parkinson’s-related changes in thinking or memory, not relationship issues alone.

5. Incorporate Self-Care Into Your Routine

Caring for someone with Parkinson’s disease is a long-term commitment, and it’s just as important to care for yourself along the way. The Parkinson’s Foundation emphasizes that care partners need support, too. You can call their helpline at 800-473-4636 to find local support groups, educational tools, and resources tailored for caregivers.

Creating a self-care plan can help you stay physically, mentally, and emotionally strong. It also gives you a way to recharge, so you can continue to care for your loved one without losing yourself in the process.

Here are several types of self-care you might include in your routine:

• Physical self-care — Prioritize rest, nutritious meals, and regular movement (even a short daily walk counts).
• Emotional self-care — Talk to a therapist, connect with a Parkinson’s caregiver support group, or simply write your thoughts in a journal.
• Spiritual self-care — Explore practices that bring meaning or peace, such as prayer, meditation, or gratitude reflection.
• Sensory self-care — Take time to tune into your senses. Enjoy a favorite scent, listen to calming music, or walk in nature.
• Intellectual self-care — Stimulate your brain with books, music, puzzles, or creative hobbies.
• Adventurous self-care — Try something new just for you, like taking a class, starting a hobby, or visiting a place you’ve been curious about.

You are more likely to be able to provide high-quality care for others if you’re taking care of yourself as well.

Join the Conversation

On MyParkinsonsTeam, people share their experiences with Parkinson’s disease, get advice, and find support from others who understand.

Are you caring for someone with Parkinson’s disease? ​Share your experience in a comment below.