Focusing on Caregiver Self-Care

An Interview with Dr. Andrea Holthaus

An Interview with Dr. Andrea Holthaus

Caregiver Self Care
Dr. Hothaus shares tips on ways caregivers can focus on self-care.

This month we will focus on caregiver self–care. As the calendar year turns over we often ask ourselves, “How will I take better care of myself in the new year?” However, for those serving as caregivers of someone with a chronic or terminal condition, prioritizing oneself mentally, spiritually, or physically may seem like an impossible task for several reasons: It may seem selfish; too expensive; or too time consuming. It may even feel like it is not our responsibility. Getting past these mental hurdles is a necessary first step; otherwise setting individual intentions to engage in self-care practices is futile.

So, how do we help caregivers understand the importance of self-care and learn strategies that can help? For this month’s blog, Lab for Caregiving Innovation researcher, Dr. Jacquelyn J. Benson, turned to Dr. Andrea Holthaus—an expert on caregiver self-care—to provide insight and answers about the conundrums associated with self-care.

Dr. Holthaus is the medical director of BJC hospice, Evelyn’s House. This month she graciously agreed to sit down with Dr. Benson to discuss the topic of self-care and support for family caregivers.

Interview with Dr. Andrea Holthaus

How you became interested in the topic of caregiver self-care and support?

Holthaus: I initially became interested in the topic of self-care from a personal standpoint as a medical provider. I had begun recognizing signs of burnout while in my previous job and began to explore more about the topic and ways to combat it. I then began to more deeply learn about the process and psychology behind it. When I was then in my current role, I did not want coworkers to experience this problem, and began to expand my interest to how burnout and distress affected hospice staff members providing care to the patients and their families.  This then expanded into how self-care is important not just for professional caregivers, but for the family caregivers as well, which leads to improved health and well-being of the caregiver and ultimately better care of the patient.

Can you tell us about some of the issues family caregivers may face?

Holthaus: Family caregivers can face a lot of emotional/psychological stress, physical stress, and financial stress. Caregiving has all the features of a chronic stress experience. It creates physical and psychological strain over extended periods of time, is accompanied by high levels of unpredictability and uncontrollability, has the capacity to create secondary stress in multiple life domains such as work and family relationships, and frequently requires high levels of vigilance.

Are there any tools health care professionals can use to assess caregiver self-care?

Holthaus: The Distress Thermometer is a tool used from the NCCN Clinical Practice Guidelines in Oncology.  Distress is an unpleasant emotional state that may affect how you feel, think and act.  It can include feelings of unease, sadness, worry, anger, helplessness. 

  The Distress Thermometer determines the level of distress.  Step 1 is using a scale where you indicate your level of distress, with 0 being no distress and 10 being extreme distress in the past week. You then ask about the parts of life in which you are having problems, and if they have been a concern in the past week.  Finally, you indicate if you would like to be contacted by a member of your healthcare team, such as the social worker, chaplain etc.  This Distress Thermometer helps your treatment team know if you need supportive services, such as help from a support group, chaplain, social worker, counselor and other experts.  Scores of >4 indicates help is needed.

Distress thermometer helps professionals measure the amount of distress associated with caregiving.

What is caregiver “burnout”?

Holthaus: Burnout is a psychological state resulting from prolonged exposure to job stressors characterized by emotional exhaustion, depersonalization or cynicism, and low sense of personal accomplishment.

What are the consequences of caregiver burnout?

Holthaus: It may lead to a change in attitude from positive and caring to negative and unconcerned.  Burnout can affect any profession.

Another term that is used is “compassion fatigue.” Is there a difference between burnout and compassion fatigue?

Holthaus: Yes, they are different, but highly related. Compassion fatigue is the physical and mental exhaustion and emotional withdrawal experienced by those who care for sick or traumatized people over an extended period of time. Compassion fatigue has similar symptoms to burnout, it is a preoccupation with absorbing trauma and emotional stresses of others, which can create a secondary traumatic stress in the caregiver. 

How does a caregiver know or identify if they may be getting burned out?

Holthaus: Societal norms are to be chronically stressed out, sleep deprived, wishing for a vacation.  Caregivers experience stress when they don’t have the appropriate resources to deal with the demands placed on them.  Pair that with a frequent lack of attention to self-care and it is difficulty oftentimes for the caregiver to keep up the pace.  Burnout can become a serious mental health issue and lead to feelings of hopelessness and even suicidal thoughts.  There are several signs of burnout that can help identify our potential for it and make changes to avoid it altogether.

Burnout usually starts with a passion to help others, but it is important to understand that caregivers are more susceptible to burnout.  Sometimes it can start with wanting to prove oneself, then working harder even though fatigue is setting in.  It is important to be aware of your body’s cues, such as becoming progressively fatigued despite a good night’s sleep.

As the caregiver is moving through phases of burnout, they may develop inability to focus on tasks for long periods, which can result is missing deadlines in your personal life, beginning to procrastinate, but then trying to work even harder to overcome these problems. 

Caregivers then begin to neglect their own needs, and may eventually start compromising their value system to justify things that are happening, such as previously valuing attending church, but justifying it by being “too busy” or “having more important things to do”.  Another sign that can be present midway down the path of caregiver burnout is denying that there are any problems.  Still trying to be everything to everybody and not delegating or asking for help. 

As the caregiver then rounds the curve towards the final stretch towards burnout syndrome, they may develop withdrawal, obvious behavioral changes, become depersonalized, eventually experiencing an inner emptiness and depression.

What are some things the caregiver can do for themselves to avoid burnout?

Holthaus: It is important that they develop a deliberate and intentional self-care action plan.  Caregivers have to “schedule” in some time for self-care and realize the importance of keeping your own health as a top priority.  It is important to invest in relationships, allow yourself to get support of your family and friends.  It is very common for caregivers to feel isolated, and “too busy” to take care of themselves.

How do you explain what caregiver self-care is when talking to family members?

Holthaus: The actual definition of self-care is the practice of taking an active role in protecting one’s own well-being and happiness, in particular during periods of stress. What this actually means is reflecting on what you need in order to feel content and happy.  Self-care is the most important way to boost and maintain both emotional and physical health. Many people today neglect it due to a lack of time, and this negatively impacts the lives of those who do not make sure they are putting themselves first. Self-care should always come first.

How do the family caregivers you see react when you encourage self-care?

Holthaus: It can be difficult to convince family caregivers to take care of their own health.  Often they are so “caught up” in the busy day to day of caregiving and managing their loved one, that they forego self-care for themselves.  Frequent reasons would be perceived lack of time, feelings of guilt or shame that they are taking time for themselves, and lack of energy/motivation or even depression.  Family caregivers are often surprised with the thought that caregiving can affect their health, i.e. “You mean I could get sick?”

What are some caregiver self-care strategies you recommend? 

There are numerous self-care strategies that can be recommended.  Many of them do not require outside help, nor extra financial burden.

  • PLAYPlay is NOT just for kids.  Play brings joy.  It is vital for problem solving, creativity and relationships.  It can be things like reading books, watching movies, listening to music, enjoying art, comedy, even taking a break watching a YouTube video.   Anything you enjoy doing can be considered play.
  • PHYSICAL EXERCISEPhysicians often promote exercise, but what can it for overburdened caregivers? Because burnout can lead to negative health effects. exercise can reduce overall perceived stress. Studies have shown that it can improve exhaustion and depersonalization by a large magnitude, let alone increasing one’s overall health.
  • SLEEPSleep can have a huge effect on how a caregiver feels, both emotionally and physically. Stress and other distractions can wreak havoc on our sleep. Sleep should be a part of everyone’s self-care routine. I tell caregivers to start by thinking about their nightly routine. It’s especially important to stay away from caffeine and sugar at bedtime, which tend to keep us awake. Making sure our bedrooms are the best possible place for low distractions is key to promote good REM sleep.
  • GO TO THE DOCTORCaregivers need to take care of their medical needs, don’t skip doctor’s appointments.  Take care of your own health so you can take care of others.

What about emotional caregiver self-care strategies? Is there a role for mindfulness and spirituality? Please tell us about these approaches.

Holthaus: Absolutely. First, let me define them. MINDFULNESS can be described as being open to new information, being aware of more than one perspective, and focusing on the process but not the outcome.  Mindfulness helps develop empathy for others, and develops self-compassion which increases resiliency.  Studies show that mindfulness can increase your well-being and attitudes, decrease burnout, promotes psychological resiliency, and promotes patient-centered care. Some research suggests it can even decrease depersonalization by 50%.  So I always tell caregivers: be aware of awareness, be in the moment with the tasks you are doing and the interactions you are having.

What are some specific things caregivers can do, even if patient care needs have progressed to needing the caregiver available at all times?

Holthaus: Self-care doesn’t have to take a lot of time. I tell caregivers, trying getting up just 15 MINUTES EARLIER and use the time just for you, sit with coffee or tea and enjoy it, journal about your struggles and feelings; stretch or meditate. Take quiet time and focus, get a mentally clear state. Purposeful meditation reduces stress hormones, increases empathy and compassion, and decreases anxiety.  But some people think “oh I would never meditate”  Meditation can be something as simple as driving without the radio on and just enjoying the quiet so you can think, or spraying a scent like lavender or something when you get in the car at the end of the day, or get to go to your bedroom at night.  Kind of resetting your mindset.

Are there any apps to use for caregiver self-care?

Holthaus: I recommend several. One is called Calm. It’s designed to help you relax, and it has a range of meditations to use. Headspace is another that offers guided and unguided meditations. Breathe2Relax does just what it says, it offers guided deep breathing to help you relax. Finally, Simple Habit is another one that will send reminders daily to keep you focused and organized, which is always a great help in reducing anxiety.

If I have a caregiver who doesn’t like using apps. I recommend a few other things. For example, I suggest a GRATITUDE EXERCISE where I tell caregivers just to write down 2-3 things they are grateful for each day. It can really put things into perspective. Sometimes it really helps to get things on paper. Another suggestion I give that’s even quicker is a DAILY MISSION MOMENT. With this I tell caregivers to write down just ONE thing each day that they are proud of, grateful for, or that went well. There has to be one thing, even if it was a terrible day.  Even if it is just that you got to put your robe on 5 minutes early that night.

Can art and music play a role in self-care?

Holthaus: Certainly! We find that art and music therapy can work with our hospice families to help alleviate their stress.  Art therapy can help support personal and relational treatment goals, foster resilience, promote insight, and reduce conflicts and distress. Studies have shown that art-making helps enable relational processes, with some participants reporting positive impact on well-being, creativity, and improved communication, as well as lessening work stress. Music can naturally decrease symptoms like anxiety or depression, help ignite creativity, and improve communications between patients and their caregivers.

Are there specific activities in art and music that you recommend?

Holthaus: Caregivers can draw, color, or just doodle.  Scrapbooking, writing letters, taking pictures, or creating a memory book with your loved ones can often create wonderful memories. As far as music therapy, I tell caregivers that it can involve making your own music, or something as simple as listening to music that has meaning to you or just makes you feel good. Caregivers can create a playlist to listen to for stress reduction and mood elevation; or something more upbeat to activate them physically and help them get through a particularly tough part of their day.

Another thing about music that I want to mention is the relational effect it can have. The relationship of the caregiver to the person they are caring for may be a different relationship, maybe it is not congenial due to difficulties in the past. Music can help foster relationships, recreating loving connections though dance, touch, reminiscence, or singing loudly together!

If you could tell caregivers to focus on just one self-care strategy, what would it be?

Holthaus: Get comfortable with delegating tasks to others.  One of the most important things a caregiver can do is to give themselves permission to delegate.  I tell caregivers to accept guidance from their health care team on how and when to delegate. Delegating has to be deliberate. 

You may need to guide people to what you need to get done. People surrounding you often feel awkward or helpless in regards to your caregiver situation and are not sure how they can help. They will give statements like “Let me know what I can do.” Some caregivers themselves are not good at delegating, they “feel bad,” or think they can do it themselves, or don’t want to bother anyone. 

  How to delegate for caregiver self-care

  • Make a list of your daily activities and tasks, and assign some tasks to those who want to help, such as walking the dog, making meals, going to pick up medications, running errands for you, even sitting with your loved one while you take your 15 minute meditation break!  People want to help, so let them help! 
  • If you are in a caregiving situation where you have no help and no else to delegate to, then delegate to yourself. What are the 3 things I need to do today? 
  • Think about when your energy level is highest and use that time to get things done.  Taking the time to make a master list of everything that must be done during the day and how much time each takes, including eating and bathing. 
  •  Take that list and batch, eliminate, and delegate if able.  Can any of these tasks be eliminated? 
  •  Try to eliminate decision fatigue by streamlining your morning and evening routines as much as possible.  Remember that done is better than perfect, think progress, not perfection!

How can the burden of caregiving be reduced by medical professionals?

Holthaus: Good communication, assistance and support of an interdisciplinary team, educational programs.  One study in the Journal of Applied Gerontology found that involvement in an interdisciplinary home-based program led to decreased unmet needs by caregivers, related to daily chores and transportation needs, as well as decreased caregiver burden.  Outpatient palliative care teams, as shown in an article in Journal of Palliative Medicine, provide interdisciplinary care and care coordination, which lowers caregiver burden, anxiety and depression, and led to increased perceived quality of life among both patients and caregivers.  The hospice interdisciplinary team can provide a great deal of support to caregivers, guiding them to resources, into support groups, and provide art and music therapy services, chaplain services, massage, volunteers to sit with the patient, and respite services when appropriate.

It seems as though being a caregiver is risky in many aspects.  Are there any positive aspects of being a caregiver?

Holthaus: Definitely! In a caregiver health study with large population-based samples, about one third of caregivers report neither strain nor negative health effects. Even when caregiving demands become more intense and result in high levels of distress and depression, caregivers often cite positive aspects of the experience. They report that caregiving makes them feel good about themselves and as if they are needed, gives meaning to their lives, enables them to learn new skills, and strengthens their relationships with others.

Researchers have known for some time that individuals in supportive social relationships are happier and healthier and live longer than those who are socially isolated. Studies suggest that supporting or helping others may be just as beneficial to health as receiving support. One study found that individuals who provided instrumental support to friends, relatives, or neighbors and people who provided emotional support to their spouses had lower five-year mortality rates than individuals who didn’t help others or didn’t support their spouses.

Are there any support groups or classes to help caregivers learn and give support?

Holthaus: Yes. Caregiver classes for family caregivers don’t offer professional certification but are geared toward daily care topics such as such as personal care, nutrition, home safety, and Alzheimer’s care. They may be found through your local hospital or home care agency. A current roster of classes from one home care service includes classes about supporting the caregiver, where caregivers can learn about signs and risks of compassion fatigue and caregiver burnout and ways to help.  Practical tips for day to day care was offered as well as discussion of legal matters and goals of care, further sessions included medication management and alternate therapies. If receiving hospice care, ask your hospice provider about local support groups, which can help immensely – open up and share your frustrations and your joys.

What are the take home points on how caregivers can focus on self-care?

Holthaus: “You can’t pour from an empty cup”—I often recite this simple phrase to caregivers as a friendly reminder that “doing your best” doesn’t mean working yourself to the point of a mental breakdown. This also means starting slow with setting self-care goals if it hasn’t been a priority for some time. I tell caregivers to begin by choosing to at least ONE self-care strategy that they can commit to over the next 2-4 weeks, and do it! Choosing just one strategy and building from their can help protect a caregiver from feeling too overwhelmed because they’re far more likely to be successful.

Bottom Line: Focusing on caregiver self-care should not cause additional stress

Benson: Dr. Holthaus, thank you so much for being our guest this month. Your insight and suggestions about self-care are sure to help caregivers start the new year off right. We are grateful for you and all our friends at Evelyn’s House! Thank you for your time and support.

Andrea Holthaus Bio:

Dr. Holthaus is a 1995 graduate of University of Missouri – Columbia, with a BS in Biology.  She graduated from Saint Louis University School of Medicine in 1999 and completed her Internal Medicine residency in 2002, also from Saint Louis University.   She joined the team at BJC Hospice and Home Care in 2017, and is now the Medical Director at BJC Evelyn’s House, their inpatient hospice facility.  Dr. Holthaus became interested in hospice staff as well as family and caregiver self-care when reflecting back on her own experiences in her career and family.  She has conducted several lectures on the topic.  Dr. Holthaus enjoys reading, spending time with her husband of 20 years and three children, and spoiling her dog, Archie.

About the Author

Dr. Jacquelyn Benson is an Assistant Professor at the University of Missouri and a founding faculty member of the Lab for Caregiving Innovation .

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