Whether you have just begun caring for someone who has been diagnosed with Parkinson’s, are dealing with a substantial progression of symptoms or you’ve been caring for someone who has had Parkinson’s for a long time, a strong support network is critical to your own well-being.
The truth is unless you’re a medical professional who has been caring for people as your life’s work, having to step into the role of care partner is a big change and often a significant stressor. And it can take its toll on you – physically, emotionally, spiritually and otherwise.
This can lead to caregiver burnout or in its extreme, compassion fatigue, where you become overwhelmed physically, emotionally, spiritually and socially to the point where you’re unable to care for yourself or others.
After working closely with care partners for over 14 years, we’ve identified some of the most common signs of caregiver burnout:
- Moods change on a dime – you feel furious one minute, sad and helpless the next
- Lack of energy
- Overwhelming fatigue
- Sleep problems (too much or too little) or taking excessive amounts of sleeping pills to get any sleep at all
- Trouble concentrating
- Changes in eating habits, appetite and weight
- Feeling blue, irritable, helpless and maybe even depressed
- Trouble getting the basics done like cleaning, cooking and laundry
- Excessive coffee drinking or increase in unhealthy habits such as smoking, drinking or abusing prescription meds
- Role confusion and uncertainty on how to be both a care partner and a spouse
- Loss of interest in activities you once enjoyed
- Neglect of your own physical needs
- Lack of exercise
- Feeling that caregiving is controlling your life and it’s the only thing you have time for
- Not letting anyone else help you – the need to control every aspect of care
- Becoming unusually impatient, irritable, argumentative and maybe even rough with the person you’re caring for
- Anxiety about the future
- Placing unreasonable expectations on yourself and beating yourself up if you fail to meet them
- Headaches, stomach aches and other physical problems
- Lowered resistance to illness – you catch every bug that comes your way
- Withdrawal from friends, family and other loved ones
- Feelings of wanting to hurt yourself or the person you’re caring for
- Emotional and physical exhaustion
- Losing control physically or emotionally
What then can you do if you’re in the middle of, or headed toward, care partner burnout?
Start with these five actions that you can begin today to start living well as a Parkinson’s care partner. Relief, increased energy and decreased stress may not happen overnight; however, if you take small actions every day, soon you will move out of burnout mode and back to a point where you’re thriving in your own life and as a care partner.
#1 Get Professional Help
While it might not be in your budget to hire full-time care for your person with Parkinson’s, even hiring an aide or a respite worker for an hour a day can make a huge difference in your life. That’s an hour you can devote entirely to yourself to relax, recharge, exercise or engage in one of your hobbies.
If there’s an aspect of caregiving that is especially challenging for you, whether physically or emotionally, hire someone to take it over or ask a good friend or family member to help you out. You don’t have to do everything on your own.
#2 Find Your Tribe
One of the most helpful actions many of the care partners we’ve worked with have taken has been joining a care partner support group. These groups give you the chance to meet others who share similar experiences, make friends and remind you that you’re not alone.
If you’re having trouble finding resources in your community, reach out to one of our Ambassadors. Their goal is to help people living with Parkinson’s and their care partners by providing them the tools and resources they need to live well. You can connect with one or more of them here.
#3 Talk About It
It may be uncomfortable to talk to your person with Parkinson’s about your experience as a care partner, but open communication is critical to your relationship. Ask your person with Parkinson’s what is most helpful to them, ask them what they wish you did more of and let them know about any of the struggles or challenges you’re having. Just because you’ve become a care partner, it doesn’t mean you no longer get a say in your relationship. The more open and honest you are with each other, the less likely you will be to take it all on yourself and go down the path of burnout.
#4 Take Care of Numero Uno (that’s you!)
You must put yourself first. This is often a challenge when your person with Parkinson’s is constantly on the top of your mind and needs a great deal of care; however, you cannot give something you don’t have. To love and care for them, you have to love and care for yourself. To ease their discomfort and pain, you have to be able to ease yours as well. Self-care is not indulgent or selfish. Rather, it is your ticket to living well. And when you live well, you’re much better equipped to help them do the same.
#5 Get Moving
As a Parkinson’s care partner, you know that encouraging your person with Parkinson’s to move and to exercise every day is one of the very best things you can do to help them reduce their symptoms. The same is true for you. When you make exercise one of your daily habits, you will enjoy significant benefits as well. You will:
- Improve your mood
- Increase your energy
- Ward off a variety of health conditions and diseases
- Control your weight
- Sleep better
- Strengthen your muscles and bones
- Improve your brain health and memory
- Reduce your pain
- Make new friends who share common interests (if you like to exercise with others)
Even if you can only find short bursts of time to exercise, the benefits can still be significant. Make it a regular part of your day, just like brushing your teeth. And even better, find an exercise that you and your person with Parkinson’s can do together. It helps you to connect, it allows you to forget about Parkinson’s for a while and as a bonus, you both get all of the physical, emotional and cognitive benefits of doing it.
Being a care partner to someone with Parkinson’s requires endurance. And it can leave you completely tapped out at the end of the day. However, if you’re able to balance the caregiving you do for your loved one with the caregiving you do for yourself, you can experience all of the benefits of being a care partner as well. Benefits of being a care partner may include: increased health and longevity, a feeling of purpose, the chance to give back to someone who has given you so much, increased confidence, deeper relationships and an opportunity to clarify the kind of care you would want in the event that you need care some day.
Not everyone has the desire, empathy or physical or emotional strength to be an effective care partner. The fact that you are in this role means that you’re pretty special and that someone trusts you enough to ensure their health and safety when they need it most.
If you’re struggling to live well, and fear you might be on the road to burnout, don’t be afraid to ask for the support you need. That’s the greatest gift you can give to yourself and to the person you care for.
More Posts in the Parkinson’s Care Partner Series
Learn More About How Parkinson’s Affects Families & Relationships
Much more can be found in a powerful new edition of Davis Phinney Foundation’s free Every Victory Counts® manual. The Every Victory Counts manual has an entire section on Parkinson’s and the family along with tools care partners may find useful along their caregiving journey.
It’s jam-packed with up-to-date information about everything Parkinson’s, plus an expanded worksheets and resources section to help you put what you’ve learned into action. Color coding and engaging graphics help guide you through the written material and point you to complementary videos, podcasts and other materials on the Every Victory Counts companion website. And, it is still free of charge thanks to the generosity of our sponsors.
Request your copy of the new Every Victory Counts manual by clicking the button below.