Long-distance care of a parent with Parkinson’s psychosis

Last updated Feb. 24, 2025, by Susie Strachan
Fact-checked by Patrícia Silva, PhD

Supporting a parent with Parkinson’s psychosis from a distance isn’t easy, but there are ways to stay involved and play a meaningful role in their care.

Psychosis can involve hallucinations, delusions, and confusion, adding another layer to the changes your mother or father may be experiencing from Parkinson’s disease.

Whether you live nearby or across the country from your parent, it can be difficult for you to know how to handle their Parkinson’s symptoms, especially when it includes psychosis. By working with your parent’s regular caregivers, such as their spouse or partner, another family member, or home healthcare professionals, you can help provide stability and comfort.

Understanding Parkinson’s psychosis

Psychosis is a nonmotor symptom which affects more than half of people living with Parkinson’s. Parkinson’s psychosis symptoms can include hallucinations, delusions, or other forms of altered reality.

These symptoms can be hard on everyone, but a better understanding of psychosis can help you approach your parent with understanding and empathy.

Hallucinations can make your father or mother see, hear, or even smell things that aren’t actually there. Visual hallucinations are the most common type experienced by people with Parkinson’s and are more likely to occur in low light or areas with limited visibility.

Other types of hallucinations include hearing voices, feeling imaginary bugs crawling on the skin, and smelling odors no one else can detect.

Delusions are illogical beliefs that are not based on reality. Perhaps your parent believes someone means them harm, or that a burglar has broken into their home. For some, delusions can cause feelings of agitation and aggression.

It can be helpful to learn more about what triggers your parent’s symptoms, such as a different Parkinson’s medication or dosage, stress, or changes in their routine.

Long-distance caregiving challenges

It’s natural to feel concerned or even overwhelmed when your parent with Parkinson’s starts having symptoms of psychosis. Hallucinations and delusions can be unpredictable, and your parent may not share what they’re experiencing nor realize their perceptions aren’t real.

Their regular caregivers might give you updates, but without seeing the changes firsthand, it can be difficult to know when symptoms are worsening or if new concerns, such as paranoia or distress, are emerging. And if a crisis arises — like a severe delusion that puts your parent’s safety at risk — you may feel helpless trying to intervene from miles away.

Check in with your parent

Regular check-ins can help you get a sense of how often your parent experiences hallucinations or delusions, how they feel about them, and if they are putting themselves or whomever they live with at risk. Check-ins can also help you gauge whether they’re managing well or if they need more support.

Ways to stay in touch include phone calls, video chats, or even recorded messages. If technology is difficult for your parent to use, consider simpler options like talking by speakerphone with the help of the at-home caregiver.

Approaching conversations with empathy is especially key when your parent is experiencing a hallucination or delusion. Remember, their altered sense of reality is a symptom of Parkinson’s psychosis, not a reflection of their true thoughts or feelings.

Some people with psychosis can recognize what they’re seeing or hearing isn’t real, while others firmly believe in their hallucinations or delusions. Understanding their perspective can help you respond in a way that reassures them rather than causes distress. Avoid arguing or trying to convince them that what they are seeing or experiencing is not real.

Encourage your parents to talk about how their psychosis makes them feel. Do they find their hallucinations frightening, confusing, or even comforting? This type of insight can guide you in how you should talk with them. For instance, do they need reassurance that they are safe or do they just want you to be supportive?

Check in with their caregiver

Psychosis can be overwhelming for Parkinson’s caregivers, as hallucinations, delusions, and confusion can make it harder to provide reassurance, maintain routines, and ensure your parent’s safety.

Perhaps your mother is your father’s primary caregiver, balancing her own health concerns while supporting him through psychosis. Or if your parent lives alone, she or he may depend on a home healthcare aide, a private nurse, or a supportive friend or neighbor as the regular caregiver.

By checking in regularly with your parent’s primary caregiver, you can get a sense of how well they’re managing Parkinson’s psychosis and whether they need additional support. Above all, be respectful of the fact that you are not the person providing day-to-day care.

To help prevent caregiver burnout, consider offering practical help and resources that can make a caregiver’s daily responsibilities more manageable. For example, you might recruit local friends or family to assist with tasks such as chores, grocery shopping, or household maintenance. Offering assistance with these routine tasks can give the caregiver more time and energy to focus on looking after your parent.

It’s just as important to communicate with your parent’s healthcare team. Hallucinations and delusions can sometimes be linked to medication adjustments, so the healthcare team may want to review your parent’s treatment plan. They may be able to give you and your parent’s caregiver some guidance about handling psychosis and discuss possible Parkinson’s psychosis treatment.

Finally, make a plan for what to do in case of an emergency. In the context of Parkinson’s psychosis, emergencies may include situations where your parent’s delusions or hallucinations cause them to act in a way that poses a risk to their own safety, such as wandering away from home, or attempting activities that put them in danger, such as driving.

Aggression or intense confusion may also escalate, requiring immediate intervention. Your parent might become fearful or agitated from a hallucination, and lash out or resist care. They may even misinterpret familiar people as threats or believe they need to escape from their home, creating a potential crisis.

The emergency plan should include contact information for all caregivers, including you and other involved family members, guidance on how to handle symptoms of psychosis, instructions from healthcare providers about how to safely de-escalate situations, and when to call 911 or go to the emergency room.

Self-care for all caregivers

Caring for someone with Parkinson’s psychosis can be emotionally and physically draining, making self-care essential for both you and your parent’s regular caregiver. The unpredictable nature of hallucinations, delusions, and confusion can lead to stress, anxiety, and exhaustion, especially when these symptoms become distressing or are ongoing.

For the regular caregiver, constant exposure to psychosis-related behaviors can take a toll. Encourage them to schedule breaks, engage in activities they enjoy, and seek support through counseling or caregiver support groups. Even short periods of rest can help them recharge, making it easier to handle the demands of caregiving.

As a long-distance caregiver, you may struggle with feelings of helplessness, worry, or guilt about not being there in person. Managing your own responsibilities while overseeing your parent’s care can be overwhelming, especially when assessing their well-being from afar. Setting boundaries and making time for your own health, relationships, and interests isn’t being neglectful — it’s necessary.

By adding self-care into your daily life, both you and their regular caregiver can be better equipped to support your parent with Parkinson’s psychosis.

Parkinson’s News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.