What Caregivers Need To Know: Caregiver Stress Syndrome, Coping Skills, and Outsourcing

What Caregivers Need to Know:

Caregiver Stress Syndrome, Coping Skills, and Outsourcing to Local Resources

Caring for someone with disabilities or a chronic or terminal illness is different than caring for someone expected to recover. The information presented here isn’t about how to provide care to your loved one; you’re already doing that. This information is about you—the caregiver—and how to cope when the stress feels endless and the days feel hopeless. As the reader, you will gain an understanding of the symptoms and causes of Caregiver Stress Syndrome, learn quick and easy ways to manage distressing moments, and identify local resources.

Caregiver refers to any individual who looks after another individual. This includes caring for children, the elderly, the sick, or the disabled. Caregivers are often family, but may include friends, paid help, or professional caregivers like nurses and social workers. The Alzheimer’s Association has estimated 219,000 caregivers in Alabama. Due to the stressful nature of their work, caregivers are often at risk of developing Caregiver Stress Syndrome. 

 Caregiver Stress Syndrome 

Caregiver stress syndrome, also called caregiver burnout, is a condition characterized by emotional, mental, and physical fatigue. It usually results in a person neglecting their own physical and emotional needs because they are caring for another person. Caregiver stress syndrome has a significant impact on the lives of those who take care of others, affecting not only the mood of the caregiver but also their long-term health and wellness. Caregiver stress syndrome is characterized by several symptoms that are similar to those of depression and anxiety. On average in Alabama, 31% of caregivers have depression, 57% have chronic health conditions, and 15% have poor physical health. Being aware of the signs and symptoms of caregiver stress syndrome can help reduce these statistics. 

 

 

Symptoms of Caregiver Stress Syndrome:

•  Fatigue and Sleep Disturbances: Chronic tiredness, difficulty falling asleep, restless sleep, or waking up still feeling tired. Mental, emotional, and physical exhaustion is likely to occur. 

• Changes in Appetite: Changes in eating habits, including overeating or loss of appetite. Weight fluctuations may also occur. 

• Mood Swings and Irritability: Frequent mood changes, irritability, frustration, excessive worry, or feelings of hopelessness and helplessness. While it may feel scary, it is not uncommon for caregivers to have thoughts of harming themselves or their loved ones. ***If you begin to have these thoughts, please contact 988 or reach out to a mental health professional.***

• Physical Symptoms: Headaches, muscle tension, digestive problems, and increased chances of illness due to a weakened immune system.  

• Social Withdrawal and Isolation: Reduced engagement in social activities, isolating from family and friends, loss of interest in previously enjoyed activities, and feelings of loneliness.

• Neglecting Personal Needs: Prioritizing the care recipient’s needs over one’s own, leading to self-neglect. Caregivers often skip personal hygiene, meals, sleep, and doctor’s appointments. Caregiver stress syndrome may lead caregivers to misuse alcohol or drugs, including prescription medications. 

Why is it important to know these symptoms?

These symptoms are a reminder that we can’t put our own health on hold while caring for someone else. They’re the red flags that our body can’t take much more stress or neglect. When you identify these symptoms in yourself or someone else, it’s a reminder that something needs to change, and maybe you need to seek help.

Caregiving is a journey that no one should travel alone, despite our efforts to “do it all.” When you identify these symptoms within yourself, remember that these are not signs of failure or weakness, but of your human nature. As I like to tell all the caregivers I’ve worked with, “You can’t be a caregiver if you aren’t taking care of yourself.”

What are the main causes of Caregiver Stress Syndrome?

As the name implies, the biggest cause is stress. The demands on a caregiver’s body, mind, and emotions can easily seem overwhelming, leading to fatigue, hopelessness, and ultimately, burnout. Here are some common causes:

• Role confusion: Being a child, spouse, or parent while also being the caregiver often causes chaos to our emotions and feelings. We want to maintain our role, but when we have to fulfill caregiver duties, that can quickly consume our identity and lead us to forgetting the most important role we may play—family.

• Unrealistic expectations: As caregivers, family, nurses, or social workers, we all have one common goal. We want those we love to get better. We aren’t taught how to care for someone when we know that their condition will worsen. Caregiver stress syndrome is often prevalent among caregivers of those with progressive diseases such as Alzheimer’s, Parkinson’s, and various other conditions.

• Lack of control: Many caregivers become frustrated by a lack of money, resources, and skills to effectively plan, manage, and organize their loved one’s care.

• Unreasonable demands: Some caregivers place unreasonable burdens upon themselves, in part because they see providing care as their exclusive responsibility. Some family members, such as siblings, adult children, or the patient themselves, may place unreasonable demands on the caregiver. 

• Sandwich Generation: Maybe you fall into the category of juggling your own career along with your own marriage and children, and now you have to be the caregiver for a parent or grandparent.

• Other factors: Many caregivers cannot recognize when they are suffering burnout and eventually get to the point where they cannot function effectively. They may even become sick themselves. Many caregivers living in rural areas may be at an increased risk for caregiver stress syndrome as resources are less available. 

If nothing else is gained from reading this, please take away this most important point: We often have a mindset that everything can be fixed. But if you’re a caregiver, then you probably already know that’s not true. When caring for a loved one with dementia, you can’t “fix” them, no matter how much you want to and may try to. Please remember that at this stage, your role as a caregiver isn’t to fix everything or have all the answers; it’s to be present in the good times and especially in the bad times. To be the calm in the face of the storm that is illness and disability. To be patient, even though we don’t have any more patience to give. We can’t fix, but we can be there, and often, being there is more important than fixing. 

 

Coping Skills 

Being a caregiver may be the most important job anyone can have, but learning to take care of the caregiver is the second most important. Coping skills are those “things” we do when we are in distress, feeling overwhelmed, or like we can’t take another moment going on like we are.  

First, let’s take a look at the practical and often necessary tasks that accompany coping. Who gets enough sleep, proper nutrition, and stays physically active? These are three key things that any individual needs to survive, but they are often forgotten or even purposely skipped by caregivers. Sometimes getting enough sleep is hard because your loved one was awake all night and prevented you from sleeping. Proper nutrition is often overlooked because it takes time to eat a balanced meal, but we can grab a bag of chips out of the pantry quickly and get back to our duties. And staying physically active? Who has the time or energy for that? Obtaining enough sleep may require you to take short naps during the day when you know your loved one is safe and occupied. It may also mean changing your daily or nightly routines because you sleep when they sleep. It might also require you to depend on your family or friends to sit with your loved one long enough that you can get a few hours of sleep. Proper nutrition might require you to take an hour or two each week and meal prep so you have an easily accessible, balanced meal. Physical activity doesn’t require you to spend an hour in a gym each day. It might just mean taking a 5-minute walk outside, or using the stairs and not the elevators. These are three crucial categories for maintaining your own health. You also need to remember to keep up with your own doctor’s appointments.

Below, you will find a list of coping skills that can be used in your day-to-day life as a caregiver.

• 5 Senses: Take note of the environment around you using the 5,4,3,2,1 method. Start by naming 5 things you see, then move to 4 things you can feel on your body or reach out and touch. Next, identify 3 things you can hear, followed by 2 things you can smell, and lastly, 1 thing you can taste. 

• Mindful listening: Pick a song, one of your favorites, and put down all other distractions. Tune in to your sense of sound, and for the entire length of the song, just listen. Notice and observe the beats, instrumentals, rhythms, lyrics, vocals, and memories it might trigger. See if you notice anything today that you’ve never noticed in the song before.

• Body scan: Here, we will get into a comfy position, one we can rest in for a few minutes. We’ll start by slowing our breath while being mindful of each inhale and exhale. Once we’re feeling comfortable and relaxed in our bodies, we will take a moment and, in our mind’s eye, envision a beautiful band of light. As we continue to breathe, we will let this band of light slowly encircle us, starting from the top of our head and gradually working its way down through each part of our body. As the band passes through each part of the body, that’s our cue to be mindful of that space and how it feels in that moment. This allows us to really focus on specific body parts and muscles. We will continue to do this until the band of light flows through our bodies all the way through the bottom of our feet. Body scanning promotes awareness of bodily sensations. Practicing body scanning requires you to focus on the physical sensations in your body as you work from your head to your feet. This can help increase your awareness of how your body responds to stress and tension and can help you develop greater mindfulness and relaxation skills.

• Progressive muscle relaxation: A relaxation technique that involves tensing and relaxing various muscle groups in a specific sequence. Begin by tensing a specific muscle group, such as your fists or your shoulders, and hold the tension for a few seconds before slowly releasing it. Repeat this process with each muscle group, working your way up from your feet to your head. As you tense and relax each muscle group, focus on the physical sensations you feel, and try to let go of any tension or stress. Repeat this cycle for several minutes, or until you feel more relaxed and calm.

• TIP: A distress tolerance skill that changes our body’s heart rate, breathing pattern, etc., and allows our body to self-regulate back to baseline. This allows our body to regulate what it has control over without fixating on what we can’t control, such as stress.

T	Change your body temperature (cold shower, holding ice cubes, cold washcloth)
I	Intense Exercise (get moving to increase your heart rate!)
P	Paced Breathing (inhaling for 5 seconds; holding for 5 seconds; exhaling for 5 seconds; holding for 5 seconds; repeat)

•  ACCEPTS: Another distress tolerance skill that focuses our mind on other tasks so we can de-stress and distract our mind. 

A	Activities: What activities can you engage in to help you distract from distress? Ex: Binge-watch a new exciting show, go for a walk/ get moving, clean up a room or area in your home, hang out with a friend or your family, read a book, or complete a puzzle
C	Contribute: What can you do to contribute, or focus on something outside of your current distress? Ex: Go through your closet and donate some of the clothes you don’t wear. Help a friend or family member with a project. Donate items you no longer need, or simply do something nice for someone else, such as providing words of encouragement or giving someone a hug.
C	Comparing: How does this distress compare to other, more difficult situations? Compare previous or even hypothetical distress to adjust perspective. Ex: Think how different things are now, compared to how they were perhaps at worse times in your life. Think about how you feel now as compared to a different time. Remember how fortunate you may be, and think of the different people in the world who may be dealing with your same issue.
E	Emotions: What can you do to stimulate other, more manageable emotions? Ex: Chat with a friend who you know always makes you laugh, read an emotional book. Watch an emotional movie. Listen to a powerful song or album. It can be all types of emotions. Watch a scary movie or a comedy, or listen to relaxing music.
P	Push Away: How can you compartmentalize this distress? Ex: Whatever the situation is, simply push it to the side for a while. Deny the problem for a moment, but not forever. Block out painful thoughts or images from your mind and refuse to think about them. Take a walk, get some water, and just escape.
T	Thoughts: Engage your intellect to help distract from distress! What can you do to engage in a new/different thought process? Ex: Do a crossword puzzle, or listen to a podcast. Repeat words of your favorite song in your head, or watch or read something thought-provoking.
S	Sensations: What physical sensations can you engage in to distract from distress? Ex: Take a long warm bath, Squeeze that stress ball. Take a hot or cold shower. Or crank up some loud music.

• A-Z List: Create an individualized A-Z list of different coping skills, hobbies, or things you enjoy doing. Once you have your list, hang it somewhere you will see it often. When we are in distress or crisis mode, our brain doesn’t automatically remind us to use our coping skills. Having it in a place that you see it often will help you remember to use these new skills. 

Outsourcing to Local Resources 

Finally, let’s look at outsourcing to local resources that can help us be the best caregivers possible, while remembering that asking for help is never a sign of failure or weakness. Caregiving often takes a village, so let’s talk about what resources commonly help caregivers.

• Therapy and Counseling: As caregivers, it’s often helpful to have a neutral third party to communicate with. This allows caregivers to vent frustrations while processing their thoughts and emotions. Often, caregivers find it easier to talk to a professional because they don’t want to burden their family and friends. Therapy also heals and supports grief and loss. Anticipatory grief begins the moment someone becomes sick, diagnosed, or disabled. Healing grief doesn’t have to wait until you lose your loved one. Many therapists take insurance, costing you only a copay. While many therapists favor in-person sessions, they’re often able to provide therapy through telehealth, so you never have to leave your home or loved one.

• Social Service Agencies: Many social services agencies, such as your local Area Agency on Aging, Senior Resource Center, or Alabama Ægis, can provide information on resources in your town or county, connect you with case management, home-delivered meals, or assist with applications for government support, such as food stamps or caregiver reimbursement programs. Also, remember that if your loved one is a Veteran, your local Veteran Service Office can help you apply for benefits.

• Adult Day Care: Many cities throughout Alabama offer two types of day care services. Some agencies provide adult care for 8 hours a day during the week so that caregivers can continue to work. Other agencies provide respite on various days of the week for a few hours.

• Home Health: These services are provided in your “home,” whether that’s a house, apartment, or long-term care facility. The purpose of home health is to offer curative and restorative treatment interventions. Home health professionals include nurses, physical therapists, occupational therapists, and speech therapists. Sometimes aides, social workers, or chaplains are available. These services are often beneficial, but keep in mind that someone with a diagnosis such as dementia could be triggered by too many strangers entering their home.

• Hospice: Hospice, like home health, provides professional medical staff in your home. However, hospice is not focused on curing, but on keeping patients comfortable. Hospice focuses on quality of life,  not quantity. Hospice is provided by a medical director, nurses, aides, social workers, chaplains, and volunteers.

• Caregiver/Sitter Agencies: These agencies provide trained individuals to come into your home and provide caregiving to your loved one. While these companies do not provide medical care, they can provide caregiving duties such as hygiene, toileting, feeding, etc., so you can remain family without the burden of caregiving. 

• Support Groups: Support groups come in all shapes and sizes and can be for the caregiver or the one receiving care. Support groups are a valuable support system to connect with those who have or are going through what you are going through. It’s a time of connection, learning from others, and knowing that you aren’t alone.

• Helplines: Many foundations and agencies have helplines that are available around the clock. Helplines can provide a means of calming you down in the middle of a crisis, but they are also crucial to communities for connecting individuals with resources available to them. 

If you or someone you know is a caregiver struggling from stress and overwhelmed by the full-time job that is caregiving, reach out to Alabama Ægis and let us help you or connect you to someone who can. Our agency provides case management in your home, but we also offer therapy and recreational programs. You can reach us at 205-871-2007 or by visiting alaaegis.com

 

 

Written by Amanda Banta, LICSW-S, Lead Clinician at Alabama Ægis.