Intermittent stress for short periods of time is tolerable. However, constant stress for long periods of time will lead to burnout. As Parkinson’s symptoms progress, it becomes harder to independently handle daily tasks, shifting more mental and physical responsibility to your spouse, family members and care partners. 

This blog highlights risk factors and common signs of caregiver burnout and explores potential steps carepartners can take to build in breaks. Failing to heed signs of burnout could potentially lead to hospitalization for the carepartner without Parkinson’s and poor health effects. 

Know the Risk Factors for Caregiver Burnout 

• Isolation – As loved ones become more dependent on others for emotional, physical and financial tasks, carepartners have less time for social activities they previously enjoyed outside the home. Many well-meaning friends stop inviting them out, thinking that it will be too taxing or difficult. 

What is most concerning about isolation is its’ correlation to depression and other negative health effects. According to a meta-analysis co-authored by Julianne Holt-Lunstad, PhD, a professor of psychology and neuroscience at Brigham Young University, lack of social connection heightens health risks as much as smoking 15 cigarettes a day or having alcohol use disorder. 

Getting out to socialize can have many barriers that include fear of what others may think of us or the movement symptoms that have developed.  We may also be new to retirement and our social lives may look very different than they did when we were working.  Adult children may have good intentions and be busy with their young families.  Old friends may have their own barriers and health issues that make it hard to connect.  All making it more difficult to connect with your community.

• Emotional Demands – Carepartners can feel isolated, lonely, or notice a shift in the family dynamics and support from others. It is normal to need emotional support that includes empathetic  listening skills.  It is normal for family dynamics to change and for us to have to look for these in others outside of the family unit.  Grief and feelings of loss, resignation or hopelessness are also normal to experience throughout the course of a chronic disease.  It is normal to need support from others in coping with grief and loss on an ongoing basis. 
• Overload of tasks to manage – There are appointments to set up, medications to take, bills to pay, groceries to buy and household chores that used to be handled by both parties. Now the task load is borne by the carepartner who may have not handled the majority of those tasks before diagnosis. 
• Lack of privacy – When you are spending the majority of your daytime and nighttime hours caring for someone else, you lack time to yourself. Respite time seems impossible to schedule when the demands of caregiving are ever-present. 
• Competing Demands – Carepartners may still have demands from their work and children or grandchildren. Balancing all of these demands can seem impossible and is emotionally stressful. 

Signs of Caregiver Burnout

• Fatigue
• Anger
• Withdrawal/Isolation – social interaction has mental and physical health benefits – note that this is both a sign and a risk factor as discussed above
• Aches and pains
• Cognitive changes
• Lack of energy
• Sleep problems (too much or too little)
• Changes in eating habits; weight loss or gain
• A feeling of hopelessness
• Withdrawing from, or losing interest in, activities you once enjoyed
• Neglecting your own physical and emotional needs
• Feeling like caregiving is controlling your life
• Becoming unusually impatient, irritable or argumentative with the person you’re caring for and/or with others
• Anxiety about the future
• Depression or mood swings
• Difficulty coping with everyday things
• Headaches, stomachaches, and other physical problems
• Lowered resistance to illness

Here are some practical tips for managing Carepartner Burnout

Accept Offers of Support –

When someone says, “Let me know what I can do to help” pause before saying, “we’re ok, we’re all set, or thank you.” Instead have specific needs at the ready so you can help that person help you. Some ideas, that don’t include specialized skills, include: “Would you mind: running an errand, preparing a meal, driving X to their medical appointments, picking up medications at the drugstore, mowing or shoveling and any handyman type tasks such as installing a grab bar.” 

Other ideas include showing you how to set up grocery delivery, online banking, and ordering items you might need online such as vitamins and probiotics. 

America is a highly individualistic culture and older generations may find it difficult to ask for or accept help from others. But consider the research of social psychologist Xuan Zhao who when asked, What do people misunderstand about asking for help? She responded that they [people in need]  are often caught up in their own concerns and worries and do not fully recognize the prosocial motivations of those around them who are ready to help. Zhao conducted several experiments where people either directly interacted with each other to seek and offer help, or imagined or recalled such experiences in everyday life. Her findings showed help-seekers underestimated how positive helpers would feel after assisting others, and overestimated how inconvenienced helpers would feel.  People really do just want to genuinely help. 

Another angle – When others extend their assistance, wisdom, availability, time, talents, or enthusiasm to you, unquestionably, they are giving of themselves. Gracious receipt of their generosity not only meets whatever needs you may have, it also honors them.

Formal Groups for Carepartner Support 

An online search “support groups for parkinson’s disease caregivers” will yield many results. Look for in-person options if you live in a more heavily populated area. 

Parkinson’s Pointe offers Coffee and Connections in person at CenterStage Starz the 2nd and 4th Wednesday of the month at 10:30 am and virtually the 1st Wednesday of the month at 4:30 pm. Both carepartners and those with Parkinsons are welcome to join us for community and conversation as we discuss the issues you’re facing post diagnosis. 

Want a way to connect with someone one on one? Our Pathfinders Program at Parkinsons Pointe provides those who have been recently diagnosed the opportunity to meet with peers who have been living with Parkinsons and thriving.  Call us at 720-468-4581 or email us at ppinfo@parkinsonspointe.org to find out more about this program.