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Caregivers for people with Parkinson’s disease often need self-care because they face both physical and emotional challenges on a daily basis. This can be especially true for those caring for someone experiencing hallucinations, delusions, or Parkinson’s disease dementia. Many MyParkinsonsTeam members discuss caregiving and often offer tips and support to others in similar positions.
“Sometimes I wonder, who gets the hardest task, the patient or the caregiver? I think that caregivers have a tough job,” one member wrote. “I only have one piece of advice for all caregivers: Please make sure that you make time for yourself 😊. It does the patient a disservice if the caregiver loses it or collapses.”
Another member shared their perspective: “I am a caregiver also. I often feel like I am not managing well, but I think if others knew and could tell me, they would say I am doing a fantastic job! It is really hard to take care of yourself and/or get the support that you need as a caregiver.”
Parkinson’s disease is a neurological disease that becomes progressively worse over time. Common symptoms include:
Nonmotor symptoms, such as cognitive impairment, behavioral changes, and psychosis, are common in later-stage Parkinson’s. All these factors can create caregiving challenges.
Psychosis symptoms experienced by people with Parkinson’s, such as hallucinations or delusions, can pose challenges for their caregivers. People with the condition are more likely to have hallucinations and delusions as time goes on.
Hallucinations are imagined sights, sounds, smells, or sensations that occur when someone is awake. Sometimes that person may be aware of the hallucination and have what’s called insight, but it is also common for them not to know what they’re experiencing. Visual hallucinations, the most common type among people with Parkinson’s, occur in as many as 75 percent of people with the condition.
It’s important for caregivers to know what they can do to manage their own stress related to a loved one who’s having hallucinations. People with Parkinson’s may have hallucinations caused by infection, simultaneous use of multiple drugs, or brain changes from Parkinson’s or another type of dementia, such as Lewy body dementia.
The first step in coping with hallucinations is to talk with your loved one’s neurologist and health care team. Conducting a medical workup can determine if the hallucination was triggered by side effects from a medication, such as levodopa, or by an infection, such as a urinary tract infection. Treating the underlying infection may improve the hallucinations.
Hallucinations are more common in dim or dark lighting, so caregivers can help minimize them — and the associated stress they cause — by maintaining bright lighting when someone with Parkinson’s is awake. Reassuring someone who’s having hallucinations can be more calming than telling them they’re wrong about what seems real to them.
Delusions are irrational or false beliefs that can cause someone with Parkinson’s to feel threatened and become angry or agitated. Delusions can manifest as unwarranted jealousy, paranoia, or an anxious obsession with one’s body and health. Sometimes people with delusions will accuse caregivers of stealing money or spouses of being unfaithful. Like hallucinations, delusions can be caused by medication, infection, or changes in the brain.
If someone you are caring for is having delusions, contact their medical team. Be sure that dangerous objects are in a secure place and that the person with Parkinson’s can’t leave home without supervision. Maintain a calm disposition rather than arguing with someone who is delusional.
Learn more ways to manage hallucinations and delusions related to Parkinson’s.
Caregivers can take action to manage the stress, uncertainty, and exhaustion that may come with caring for someone with Parkinson’s, particularly if that person experiences hallucinations or delusions. Self-care is not selfish or indulgent — it’s an important aspect of maintaining your energy and staying healthy.
You owe it to yourself and the person you care for to nurture your own well-being. A 2020 study showed that when caregivers have a better quality of life, Parkinson’s symptoms improve in the person they care for. In other words, self-care can help both you — the caretaker — and your loved one.
To help stay emotionally and physically fit, you can take practical steps such as these:
Practicing mindfulness can also help you cope with the challenges of caregiving. Mindfulness includes a number of practices for developing self-awareness and managing stress, such as:
MyParkinsonsTeam members who are caregivers have offered many helpful tips to manage the challenges of caring for someone with Parkinson’s.
One member mentioned the importance of support groups with other caretakers. “I see a therapist, which helps, but it’s not the same as talking to another caregiver,” they said.
You might want to join a caregivers’ support group during the early stages of Parkinson’s. It can be helpful to anticipate the challenges of caregiving as the disease progresses. If you need individual counseling, ask your doctor for a referral for a mental health professional or psychotherapist.
Another member stressed the importance of using whatever resources are available: “My father has a variety of caregiver providers: (1) VA benefits, (2) hospice, (3) private caregivers, and (4) friends who take care of my dad while also taking my mom away for a few hours of rest and away time, and (5) the family takes turns spending a few days a month. This supports Mom and Dad.”
You might also talk with a social worker about other avenues for intermittent, part-time, or full-time home care that may be available. If caregiving is becoming overwhelming, it’s important to talk with your health care team about the difficult decision of moving a loved one into a nursing home or care facility.
The American Parkinson Disease Association has compiled useful resources for caregivers that can help you find the help you need. The Parkinson’s Foundation also provides a list of resources.
Find activities that you and your loved one with Parkinson’s can enjoy. One member talked about participating in online activities designed to help people with Parkinson’s, which they also enjoyed: “One thing I did last month was participate in Zoom body and brain workshops sponsored by NYU Langone. They were free and ranged from music therapy/vocal exercises, also Rock Steady Boxing (I, the caregiver, was the weakest one! lol) and tai chi. There was also art therapy, but I missed that.”
The member continued: “I, the caregiver, benefited as a caregiver and also as a human being from these workshops, so the importance of staying engaged in doing things even over Zoom/computer is really key. There are karaoke videos on YouTube where you can sing along to favorite songs while reading the words on screen. It really helps!😀”
Sometimes caregivers may not realize how much they are appreciated, especially if the one they care for has delusions that cause them to make hurtful accusations. Sometimes it helps to tell friends and family about the effort it takes to be a caregiver.
“When we are out and about, we may often run into someone we know who knows I have PD. The question to me always is ‘How are you doing?’ No one ever asks my wife, ‘How are YOU doing?’ It’s as if caregivers have suddenly become invisible,” a member wrote. “So to all of you caretakers and caregivers, THANK YOU, THANK YOU, THANK YOU!! And bless you for loving us no less and respecting the situation we now find ourselves in — not just as a Parky, but as a couple who will live with and face this together.”
MyParkinsonsTeam is the social network for people with Parkinson’s disease and their loved ones. On MyParkinsonsTeam, more than 88,000 members come together to ask questions, give advice, and share their stories with others who understand life with Parkinson’s.
Are you a caretaker for someone with Parkinson’s? Have you found ways to practice self-care? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Evelyn O. Berman, M.D. is a neurology and pediatric specialist and treats disorders of the brain in children. Review provided by VeriMed Healthcare Network. Learn more about her here.
Joan Grossman is a freelance writer, filmmaker, and consultant based in Brooklyn, NY. Learn more about her here.
