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Author: Debbie Humphrey

When I arrived for my shift as a caregiver to a 77-year-old gentleman with Parkinson’s disease, the morning caregiver told me the man had done well and had a great day. However, it was as if she flipped a switch on her way out, because the man got up from the kitchen table, became very animated about where he needed to go, and he tried to leave the house via several doors.

Every time the man went to another door to exit, I blocked each door with my body to prevent him from leaving. In the man’s current stage of PD, I am adamant that he cannot leave because every entrance has stairs to navigate, and he’s fallen down the stairs more than once.

My blocking doors got him agitated, and he tried shoving me out of the way. That didn’t work. He cursed at me and told the “officers” he saw around the house to arrest me. Of course, there were no police officers in his home, but during his vivid hallucinations, he sees people, children, animals, and more.

In addition, by 3:00 PM each afternoon, the man begins sundowning which renders him confused about his whereabouts. When the man is in this psychosis, my sole focus is to keep him safe from falling. Unfortunately, keeping him from falling is impossible due to his uncooperative legs and feet, stooped posture, and balance issues.

To make matters more challenging, at bedtime, the man became amorous and began caressing my leg and stomach. I reminded him that I am married and not at his home for that reason. That didn’t last long because he asked me to join him in his hospital bed. The man’s daughter told me that a heightened libido is a side effect of at least one of his meds, but yikes!

When my shift ended, I was physically, mentally, and emotionally fatigued, I had no appetite even though I hadn’t had a chance to eat, and I couldn’t shut off the events of the evening enough to relax, go to bed and get some much-needed sleep.

This was the account of one evening shift by one of the hard-working caregivers on my Home Helpers team. It can be very stressful to care for clients with neurological disorders, but when sundowning and Alzheimer’s cross into the PD as the stages progress, it certainly amplifies that stress.

The Davis Phinney Foundation for Parkinson’s (DPFP) has excellent resources for people diagnosed with PD, their care partners (spouses, children, family members, friends), and caregivers. They have sought insight from leading Parkinson’s experts and people on a PD journey to compile handbooks called, Every Victory Counts®. I used the care partner version to adapt their powerful messages for caregivers, because the advice is relevant during Parkinson’s Awareness Month, and having 12 coping strategies for caregivers to Parkinson’s disease clients is imperative.

“As a Parkinson’s (caregiver), it’s easy to become so focused on your person with Parkinson’s that you put your needs on the back burner. This can lead to (caregiver) burnout or compassion fatigue, where you become overwhelmed physically, emotionally, spiritually, and socially to the point where you’re unable to care for yourself or others” DPFP explains.

DPFP has identified the most common signs of caregiver burnout:

• Moodiness
• Lack of energy
• Fatigue
• Sleep problems (too much or too little)
• Trouble concentrating
• Changes in eating habits, appetite, and weight
• Excessive coffee drinking or increase in unhealthy habits such as smoking, drinking, or abusing prescription medications
• Loss of interest in activities you once enjoyed
• Neglect of your own physical needs
• Lack of exercise
• Feeling that caregiving is the only thing you have time for
• Anxiety about the future
• Headaches, stomach aches, and other physical problems
• Lowered resistance to illness

If you recognize any of these signs in your life as a caregiver, you can apply various coping strategies starting today to avoid burning out.

“Like people with Parkinson’s, (caregivers) face changing roles, relationships, and lifestyles throughout the progression of Parkinson’s. Give yourself space and energy to cope with them. Perhaps you’re thinking, “I’m fine; I don’t need coping strategies.” No matter how well you’re doing, it can still be beneficial to find time for self-care and self-reflection,” says DPFP.

1 - Check in with yourself.  We tend to ask others how they’re doing but forget about ourselves. Doing regular self-check-ins fosters self-awareness. Ask yourself:

• “How am I doing with this?”
• “What has been my attitude towards Parkinson’s?”
• “What would be helpful for me right now?” 

When you attend to your own feelings and needs as a person, you can do what you need to do as a caregiver.

2 - Look for signs of burnout.  Being a caregiver can feel overwhelming and leave you feeling down at times, but it can lead to burnout if this becomes the norm. Try to notice if you’ve been more irritable, socially withdrawn, have had difficulty concentrating, experienced anxiety or depression, missed your own medications or medical appointments, or have had trouble sleeping at night. If you notice that your health is compromised, now is the time to make positive changes.

3 - Be your own advocate.  You are the expert when it comes to your caregiver experience. Remember to stand up for yourself as well. Assert your rights, share your knowledge, determine your goals, recognize your limitations, and negotiate and communicate your needs. You may find that self-advocacy is quite empowering! 

4 - Embrace “me time.”  People with Parkinson’s and caregivers often spend more and more time together as Parkinson’s progresses. It’s critical to carve out time away from Parkinson’s when you are the priority, even if those moments are brief.  Do whatever you need to do to recharge your batteries and return with more energy and a clearer head.

5 - Seek support.  If you have not done so already, it might be a good time to try a Parkinson’s support group. Caregivers are often surprised by the relief they feel from meeting other people they can relate to. Learn about other available resources, like mental health counseling, that may provide additional support now or down the road.

6 - Laugh.  Life doesn’t stop being funny with a Parkinson’s diagnosis. Too many of us take ourselves too seriously. Enjoy the humor in the moments life presents and laugh when something silly occurs. It’s OK to laugh at the strange situations Parkinson’s can sometimes cause, too. Laughing can be cathartic, especially in those awkward moments. It can also be a relief for the person with Parkinson’s to share that laughter with you.

7 - Have an attitude of gratitude. Like carving out “me time,” practicing gratitude can be tricky for some caregivers. We often hear from people living with Parkinson’s who, after their diagnoses, express their gratitude about discovering new creative talents or finding a new circle of wonderful friends. It can be more challenging for caregivers to find that sense of gratitude. If you feel this way, seek out a support group and/or a mindfulness program to help you learn how to build moments of gratitude into your daily life.

8 - Practice communication and find connections. Good communication fosters closeness and connection. Create times to connect and enjoy when the focus is not on Parkinson’s. Practice open, honest communication.

9 - Recognize your strengths.  Whether the Parkinson’s client was diagnosed one month or 25 years ago, recognize that you are entering new territory and that you are gaining knowledge that will ultimately give you strength. What’s given you strength through this period? In what ways have you surprised yourself? What skills have you gained? Davis Phinney calls these acknowledgments “Moments of Victory.” Take strength from them and celebrate them! 

10 - Find meaning.  Every experience is a learning opportunity. You may not be conscious of it but providing care for someone with a complex and chronic condition can lead to personal growth. Think about your person’s Parkinson’s story and what their journey has meant to you as a caregiver. Many caregivers find a sense of purpose in supporting someone with Parkinson’s. When faced with new challenges and transitions, try to see the big picture and focus on what matters most.

11 - Stay flexible.  A Parkinson’s caregiver once said, “Blessed are the flexible, for they shall not be bent out of shape.” Sometimes, when everything else is unpredictable, the only thing that is in your control is the choice to “go with the flow.” 

12 - Be kind to yourself.  It can’t be said too often: you are doing the best you can, and that is more than good enough.

The experienced Home Helpers caregiver who assists our client with PD is just one of many who are highly trained in specialized care for people with Parkinson’s and respite care for weary care partners.

I gladly offer a FREE Consultation to assess specific needs and select the perfect caregiver to help. Following my assessment, I can determine what in-home care services are needed and create a personalized care plan to make life easier.

We, at Home Helpers® Clearwater, are honored to have been ranked among the Activated Insights Top 100 Leaders in Experience for home care providers in 2025 and to have received the Best of Home Care® Provider of Choice, the Best of Home Care® Employer of Choice, and the Best of Home Care® Leader in Experience Awards in 2025, along with the Caring Super Star 2025 Award.

Home Helpers Clearwater proudly serves male and female seniors, veterans, and differently abled individuals in Bayonet Point, Clearwater, Clearwater Beach, Dunedin, Gulfport, Holiday, Hudson, Largo, Madeira Beach, New Port Richey, North Redington Beach, Oldsmar, Palm Harbor, Pass A Grille, Pass A Grille Beach, Port Richey, Redington Shores, Safety Harbor, Saint Petersburg, Seminole, South Pasadena, Tarpon Springs, Tierra Verde, Treasure Island, Trinity, and surrounding areas. Home Helpers®…we are Making Life Easier® 727.942.2539

Source:

Dave Phinney Foundation for Parkinson’s