Caring for the Care Partner

Life does not stop with a Parkinson’s disease (PD) diagnosis — but PD and its symptoms change over time, as will your role as a care partner. Your challenges and experiences will be unique. However, you are not alone.

You cannot be a good caregiver to someone else without caring for yourself. Taking care of yourself requires finding balance. Regular breaks from caregiving are an essential part of this balance. Take an hour daily, an afternoon weekly or a day monthly — whatever you can manage.

These breaks from daily routines and responsibilities, often called “respite,” are especially important if you are with the person you care for 24 hours a day. Counseling, adult day care, a home health aide, or any other source of help should be looked at as early interventions, not eleventh-hour alternatives.

The most important thing to remember is that the person you are taking care of is only doing as well as you are; if you do not take care of yourself, you will not be able to take care of your loved one.

The Caregiver Burden Continuum

When a care partner does not attend to their own needs or take time off from the caregiving role, they may find themselves on the “Caregiver Burden Continuum.”

Caregiver burnout is a state of physical, emotional and mental exhaustion that may include by a change in attitude, from positive and caring to negative and unconcerned.

Caregiver Burden is a complex, multi-dimensional concept that includes factors that are subjective (based on your own personal experience) and objective (not influenced by your feelings). There are three basic sections of this continuum:

Caregiver Stress
Caregiver Strain
Caregiver Burnout

Where you fall on this continuum depends on your current experience with:

The distance between the financial resources required to meet your needs and your actual financial resources
Where you fall on the spectrum between socially active or socially isolated
How many roles you’re trying to navigate simultaneously with conflicting responsibilities

Caregiver Stress

Caregiver stress is when you experience a manageable amount of stress and anxiety related to caregiving. Caregiver stress is, unfortunately, a part of life when caring for someone with a chronic illness such as PD — especially over an extended period.

Caregiver Strain

As stress and anxiety grows to be less manageable, we start calling it caregiver strain. You have reached this stage when the stress and anxiety begin to impact your ability to care for your loved one.

Caregiver strain is the perception of persistent problems and a feeling of decreased well-being that results from providing prolonged care, according to the Modified Caregiver Strain Index (a screening tool used to measure caregiver strain). This can look like forgetting more tasks than usual, feeling too fatigued to take care of yourself outside of your care duties or becoming more easily frustrated with your loved one.

Care partners can experience caregiver strain for short or long periods of time without realizing it. It is important to you have someone in your life who you can talk to when you are feeling overwhelmed or stressed about caregiving. It is in times like these that having a secondary care partner can be helpful — you can take a break while someone else helps care for your loved one.

Caregiver Burnout

Unaddressed caregiver strain progresses into caregiver burnout. Caregiver burnout is a state of physical, emotional and mental exhaustion that may include a change in attitude, from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able, physically or financially.

If you feel completely overwhelmed and checked out of your day-to-day tasks you are likely experiencing caregiver burnout. In this state, a care partner is unable to give their loved one the emotional or physical support they need.

Caregiver burnout symptoms can include:

Extreme fatigue unrelated to sleep
Unusual frustration and anger
Feeling “cloudy” or “foggy.” Often dismissed as age-related change, this can occur as a result of carrying too much responsibility and/or anxiety
Other physical symptoms may manifest as a result of emotional stress

Caregiver burnout can be measured through stress screening tools that allow care partners to rate how they are doing on a scale. A health professional can help assess caregiver burnout. Our workbook, Caring and Coping, has guides for care partners to assess their stress levels.

Many PD doctors do not ask the care partner if they are experiencing symptoms of burnout, but care partners are welcome to let them know they might be experiencing burnout and ask for suggestions. Sometimes the care partner may receive a referral to their own health professional.

Assessing Caregiver Burden

To assess your or a fellow care partner’s level of caregiver burden, look for these signs:

- Isolation
- Growing feelings of isolation, expressed by, “Nobody knows or understands what is really going on with us.”
- Bitterness toward friends or relatives who “should help more”
- Negative Coping Mechanisms
- Ongoing tendency to ignore, or postpone, taking care of your own health needs
- Tendency to use alcohol or drugs to try to lessen stress levels
- Changes in Mental State
- Feelings of anxiety and uncertainty about the future
- Feelings of anger at the care recipient or situation, often followed by guilt
- Feelings of profound tiredness and exhaustion not relieved by sleep
- Emotional strain/stress, often shows up as physical symptoms
- Not being able to concentrate or make decisions
- Depression, despair and feelings of hopelessness
Depression, despair and feelings of hopelessness is an extremely important sign. While not specific to care partners of people with Parkinson’s, 40 to 70 percent of caregivers experience extreme levels of stress — about half of these seriously stressed caregivers meet the diagnostic criteria for clinical depression.

Depression interferes with your ability to do normal day-to-day activities, so both you and the person with Parkinson’s will suffer from your emotional distress. Assess your mental and emotional status and find help. Depression is not a weakness; it is an illness, and there are treatments that can help.

Caregiver Stress Inventory

Answer the below questions to better understand your current level of stress, and to help you begin taking better care of you.

The most stressful thing about caring for someone with a chronic illness like PD is…
The single most irritating thing is…
The most rewarding thing is…

Make a note to yourself if you have trouble picking one thing for question 1 or 2 or struggled to identify an answer to question 3.

Answer the following six questions with “yes” or “no”:

Do I get six hours of uninterrupted sleep most nights?
Do I have a period of time alone every day?
Is there someone I could/would phone if a problem arose any time day or night?
Is there someone in my circle of family or friends who would give or loan me money in case of financial hardship?
Does at least one other person fully understand the day-to-day trials I experience?
Do I take regular planned breaks and mini holidays away from caregiving responsibilities?

Ideally, the answer to these six questions above should be “yes.” If you answered “no” to any questions, make a note to yourself.

Finally, recognize the signs of stress and find techniques to help you manage stress and avoid the triggers, when possible. Answer these questions:

How am I coping with these responsibilities?
How would I describe my quality of life these days?
How often do I get out?
Am I seeing my own healthcare team enough?

Make a note to yourself if any of these answers suggest that you are not coping well or not caring for yourself.

Discuss the answers and any responses you noted as concerning with your personal healthcare provider or a counselor/therapist.

What can I do to feel better?

If you’ve ever been on an airplane, you’ve heard the advice to “put on your own oxygen mask first before assisting others.” The same holds true for caregivers. By placing your own physical, medical and emotional needs on equal par with the person with Parkinson’s, you may help prevent yourself from falling into stress, caregiver burnout or depression.

Identify what triggers your stress and ways to help control your emotions and release anger in a safe way. Try writing in a journal, or venting frustration through physical outlets, like going for a walk or trying a challenging workout. If the stress triggers are unavoidable find reliable ways to reduce and manage them, for example:
- Take 10 deep breaths
- Call a friend
- Turn on some music and dance around
- Get a massage
- Watch your favorite TV show
- Exercise
- Garden
Add as many tools as you like or need and keep the list handy so you can turn to it whenever the tension starts to build.
Sometimes care partners and their loved ones isolate themselves, withdrawing gradually from their prior social life.
- Build an inner circle of friends. You should feel comfortable calling friends without feeling like you are imposing.
- Stay connected. Maintaining your social connections is an integral part of your emotional wellbeing. Plan activities with family and friends if they are local, or keep in touch through e-mails, texts and phone calls. Talk about things other than caregiving.
- Join a club and pursue your hobbies. As a care partner for someone with PD, your life is different than it used to be, but your social interactions should not be limited to your loved one. A simple change of scenery can be mentally stimulating and emotionally refreshing.
Call a meeting with key family members and friends to openly discuss what’s happening with you and the person with Parkinson’s. If geography is an obstacle, use phone calls or Zoom to bridge distances. It is important for you to share your feelings and for family and friends to understand the situation from your point of view. They most likely want to be involved in caring for the loved one with PD but don’t know how.
Feeling alone in a bubble with you and your loved one with PD can be really challenging.
- Try meeting with people who are in the PD community and can understand your experiences.
- Connect with Parkinson’s Foundation Chapters located throughout the country to find local resources and events.
- Check out your local Area Agency on Aging as they can recommend support groups that may be helpful.
- Check in with family members and friends if you feel they stopped visiting or are not supportive in the ways you need. Speak up, they may not realize how you feel and might have no idea you were struggling so much.
Harboring resentment when you need more help can increase stress and lead to burnout. Make a short list of specific tasks that would help you care for the person with Parkinson’s and allow you some much-needed respite. For example, “Could you take Frank to the barber and to lunch every other Tuesday?”

If you do not feel comfortable asking directly for help, you will have the list ready when friends and family members ask what they can do. Be honest if finances are a constant worry. Someone in your circle might be able to help with medication costs for one month or pick up groceries for you once a week.

Care Partner Resources That Work For You

For many care partners, the hardest part of getting help is finding the help you need. The good news is that there are many types of resources you can access, starting now!

Read Our Book Caring and Coping View All Care Partner Resources

Building A Backup Team

You need a backup team. Prepare and train one or two friends or family members to fill in for you, or explore local respite care options. In-home services are available with a range of options, including companion, home health and housekeeping services.

Out-of-home respite care options include adult day programs and residential facilities, which may offer the option to stay for a night, a few days or even a few weeks.

Respite Care

Respite means a short period of relief.

Respite care refers to short-term, temporary care provided to your loved one so you can take a break from the daily routine of caregiving. Respite care can range from a few hours to a longer vacation and can be achieved in a variety of ways.

Seeking help does not make you a failure, and it is not selfish. It is an insurance policy against overtaxing yourself, so you can continue to provide quality care for the person with Parkinson’s. Time off can help both you and the person with Parkinson’s relax and recharge, as well as socialize with other people.

Professional Respite

Their are two primary types of respite care: in-home services and out-of-home services. Your best option will most likely depend on your provider, family needs and available funds.

When you are comfortable with your respite care plan, regularly schedule time away from your caregiving responsibilities. This may be something as simple as going to an exercise class, but it is essential for long-term caregivers.

In-Home Respite provides personal care with activities of daily living, such as bathing, grooming and dressing delivered by trained, licensed, insured and bonded employees of a private or state agency.

These providers, sometimes called companions, personal aides or personal care partners work either for themselves privately or for an agency that takes responsibility for setting fees, making caregiving assignments, insuring and bonding the care partners and training them. About in-home respite:
- Services generally available 24 hours a day, 365 days a year.
- In-home care partners can be employed to assist with a particular task, for example: bathing assistance, or by blocks of time: four hours, eight hours or even live-in.
- For the most part, personal care is a private expense. Medicare or health insurance does not cover it. However, it may be covered by your long-term care insurance policy.
- Many states, through their local Area Agencies on Aging, offer a capped number of hours of companion services to older adults.
Out-of-Home Respite generally falls into three categories:
1. Adult Day Programs (also referred to as adult day care) provide community-based, day-long social and recreational programs in a safe, secure group setting.
2. Family Care Homes are licensed to provide housing, meals and personal care services in the home of the care provider.
3. Residential Facilities often have a specified number of rooms set aside for short-term respite as well as permanent residences.
It may even be possible to enjoy time away from your role as care partner while spending time with your loved one. Many find that hands-on caregiving duties are the least joyful, so a short outing or trip together to a destination where care is provided can be an opportunity to find joy in your relationship with your loved one.

Getting Outside Help

The best time to learn about in-home care options, as well as assisted living and skilled nursing facilities, is before those options are needed. We highlight the different types of available options and tips for navigating them.

LEARN MORE

Addressing Your Health Needs

You cannot effectively take care of your loved one if you are not managing your own health. Establish a pattern of taking care of your own physical and mental health needs as well as those of your loved one. For example, don’t put off your yearly physical exam or neglect your morning walk because you feel too busy meeting your care recipient’s needs.

Attend all regular check-ups and screenings. If you notice an issue, make an appointment right away so problems can be managed as quickly and effectively as possible. If you haven’t been able to prioritize your health until now, it’s never too late to start!

If you find yourself regularly saying, “I’ll do it tomorrow…” when it comes to your own health, try putting it in writing. You have a care plan for the person with Parkinson’s, so make one for yourself.

Lack of sleep, “compassion fatigue,” and exhaustion take a toll on all aspects of your health — physical, mental and emotional. Time for relaxation is a basic human need and a care partner right. To continue giving effectively to the other person, you must restore your own energy on a regular basis. Budget time and money to focus on you.

Try to think of taking care of yourself in the same way you take care of your loved one:

Prepare for your appointments with your healthcare providers. Keep a journal of how you are feeling and any health issues that arise. Make a list of questions and things you want to talk about.
Eat well and exercise. A healthy diet and regular physical activity are as important for you as they are for your loved one.
Learn to recognize the signs of depression. Depression is not just a concern for your loved one with Parkinson’s. Your risk of becoming depressed increases when you take on a care partner role.
Listen to your body. If you provide a lot of physical, hands-on assistance, pay particular attention to your back. Don’t ignore aches and pains. Talk to your doctor or begin seeing a physical therapist for help lifting. Consider seeing an occupational therapist with your loved one to explore moving aids that can help simplify activities.

Calling All Care Partners!

Our free, self-paced series of online courses cover key topics from staying healthy to addressing and preventing caregiver burnout. Discover our Care Partner Program: Building a Care Partnership.

Find Your Ideal Care Partner Course

Addressing Your Spiritual Needs

Living well with Parkinson’s requires attention to mind, body and spirit, for the person with Parkinson’s and the care partner. Spirituality is a path to maintain hope, which can help us to live with uncertainty and see our situation in a new light.

Participation in activities that nurture the spirit can often be shared together. While many people credit their spirituality and faith as their foundational framework to help sort out their feelings and emotions regarding life with Parkinson’s, many approaches to spirituality are not associated with organized religion.

Whether you are part of a religious practice that includes support from members of a faith community or draw strength from non-religious practices like time in nature or meditation, tending to your spiritual needs can improve your quality of life.

If you are religious, consider these spiritual practices:

Attend religious services, whether in person or virtually.
Create routine around familiar prayers or devotions.
Request a home visit from clergy or other spiritual advisors.

Here are some ways everyone can connect with their spiritual needs:

Listening to calming or meaningful music
Reading affirmations quotes, poems, or inspirational stories of resilience. There are publications designed for people coping with chronic illness and care partners. These readings can help you turn attention inward and reflect on personal thoughts and feelings.
Spending time in connection with nature or creating comfortable surroundings that incorporate spiritually meaningful elements or visual cues
Making time for meaningful discussions with others you trust who understand and can relate to your current challenges.
Cultivating a mindfulness practice. Mindfulness has been documented in clinical studies to have mental and physical benefits. Whether you have two minutes or 20, mindfulness meditation can help you reduce your stress and pain, make stronger connections, improve focus and feel better overall.