What Helped Us Most: Advice From Parkinson’s Caregivers

The best tips come from those who have lived through taking care of a partner or parent with psychosis symptoms.

by Judy Koutsky Health Writer

Tom Manak, from Glen Ellyn, IL, knows firsthand what it’s like to be a care partner to someone with psychosis symptoms. His wife, Ro, was diagnosed with Parkinson’s approximately 30 years ago at the age of 36. “Eighteen months ago, she was diagnosed with Parkinson’s disease dementia although I had been seeing issues with her cognitive ability prior to that,” says Manak. “It just took time to recognize the issue. She went through a battery of tests by a neuropsychologist and is now seeing a behavioral neurologist for care.”

What exactly is Parkinson’s disease psychosis? It may start with mild symptoms, but gradually they escalate and can have a big impact. It can range from confusion to hallucinations (seeing things that are not there) and delusions (believing something is true when it’s not).

Manak is not only a caregiver, but he’s also the vice-chair of the Parkinson’s Foundation People with Parkinson’s Council. If you have a loved one who is doing battle with Parkinson’s disease psychosis, these are some of the things Manak (and others who have been in your shoes) want you to know.

Don’t Wait Too Long to Seek Help

“I may have waited a little longer than I should have to get Ro to see the behavioral psychologist for testing,” says Manak. “Maybe there were things we could have done to delay the disease progression. Or, if I had thought this was going to be an issue, we could have changed what we did years earlier (like her diet).” But don’t beat yourself up. You’re doing the best you can, and hindsight is 20/20. The takeaway here is that everyone is different, so it’s best to see a behavior psychologist once you start to see changes.

Don’t Take It Personally

“Remember that even if the actions may be directed at you, it's not personal,” says Manak. He explains that while a certain behavior can drive him crazy, he constantly reminds himself that it isn't about him (even though it can feel that way).

“I can go from calm and collected to angry in a nanosecond,” says Manak. “I work at making sure that I’m not directing that at her. I just get mad because she does something inappropriate.” He explains that it’s hard taking care of a loved one under these circumstances. “I want the old Ro back. Even though I know it’s the disease, it’s hard not to remember the old Ro,” he says. He tries to stay calm and let things roll off his back.

Make Time for Yourself

Do whatever works for you. Some people can take 15 minute for walking breaks or meditation and that can help. For Manak, who is a caretaker 24/7, leaving his wife alone for any amount of time is not an option. “This summer I’m bringing in a caregiver every week so I can play golf. That is my escape,” says Manak. Caregivers can experience anxiety (55% do, found one study of dementia caregivers) or quickly burnout (22% do, found the same study) if they don’t make time for themselves.

Talk About It

It’s natural to want to stick your head in the sand and pretend this isn’t happening, but the very best thing for you (and your partner or parent) is to tackle it head on. “If you see changes in behavior or your loved one talks to you about hallucinations and delusional thinking, talk with your movement disorder specialist, neurologist, or whoever is providing Parkinson’s disease-related care,” says Manak. A change in existing Parkinson’s medications may reduce or eliminate the issue or it may be a cognitive issue which needs to be addressed.

“You can talk about the hallucination and/or delusion with the person suffering from psychosis,” too, says Dev Patel, M.D., a psychiatrist who practices virtually with TeleMed2U. “Help them understand that it’s not real or that it may be irrational.” However, don’t cause an argument as that can make things worse. While a hallucination is occurring, caregivers can help their loved one by reassuring them that they will be safe and validating the experience. For example, say, “I’ll take the cat outside” instead of arguing that there is no cat.

Be Honest About Grief and Fear

“Caring for a loved one with Parkinson's involves a tremendous amount of grief,” says Jacob Brown, a psychotherapist based in San Francisco, CA. “You are grieving the loss of the life the two of you had together, the plans you had for the future, and the knowledge that your partner is slipping away from you.” He notes that people often think that the way to deal with this is to remain positive and upbeat. “In fact, that's the worst thing you can do,” he says. “The best way to deal with the grief is to accept it, feel it, and talk about it with your partner. They are feeling grief to as their own life is destroyed by the disease. By sharing the pain, the two of you can be allies and work together.” He explains that by hiding your grief you cut yourself off from the person you love the most.

When caring for individuals with dementia-psychosis symptoms, it's important to note that every person experiences the disease differently and may require a more personalized solution to help them through their challenges. “My advice is to continue providing reassurance and emotional care to help them throughout their journey,” says Raymond Dacillo, director of operations at C-Care Health Services in Toronto. “It can be a scary experience for them and acknowledging their fear and personalizing their care can be extremely useful.”

Don’t Make Promises You Can’t Keep

“Never promise not to put someone in a care home,” says Jennifer (last name and location withheld for privacy), who took care of her mother for many years. “Instead, promise you’ll make sure they have the best care possible.” She explains that it’s not always possible to keep a parent at home and promising to do so can cause both guilt and resentment. “Good care homes provide companionship, activities and other services that you alone may be unable to provide,” she adds. She placed her mother in one such home and her mom created many friendships and participated in plenty of activities. Plus, Jennifer noted that nobody minded when her mom repeated her stories over and over or if she got confused. It was a safe and supportive environment.

Let Them Have a Sense of Purpose

“One of the most important pieces of advice is to do all you can to allow the person to maintain a purpose in life,” says Jennifer. “Allow them to try and do their normal things. Once you step in and start doing for them, they’ll lose those skills and you’ll end up doing more and more and more. Not having a purpose also gives way to frustration which can lead to aggression.” Letting the person wash their own dishes (even if they do it badly), cook a meal (even if they need supervision), or pick out their own clothes (even if they don’t match), is important.

Ask for Help

“It's very important that you also know that as a caregiver, you aren't alone,” says Dacillo. “Reach out for support and encouragement from people with similar experiences.” Joining a support group—either in person or online—can really help the care giver during difficult times.

Start with these:

Burnout Rates: Official Journal of the Brazilian Psychiatric Association. (2012). “Burnout in familial caregivers of patients with dementia.” http://www.scielo.br/pdf/rbp/v34n4/v34n4a07.pdf

Judy Koutsky
Meet Our Writer
Judy Koutsky

Judy Koutsky is an award-winning writer and editor and her work has appeared in over 30 publications including Conde Nast Traveler, Travel + Leisure, Parents, WebMD, Prevention and Scholastic. You can see her work at JudyKoutsky.com or follow her on Instagram @JudyKoutsky.