In many ways, it’s harder to be the caregiver than it is to be the patient. Family caregivers give up their jobs, their social lives, their hobbies, and their free time — often in the prime of their lives — to offer care to loved ones who are seriously ill, aging, or physically or mentally handicapped.
The physical, mental, and emotional toll it takes on a person as a family caregiver has a name: Caregiver Stress Syndrome (CSS).
A syndrome is defined as a set of concurrent symptoms that cause a recognizable pattern. The symptoms of CSS have been described as:
- Difficulty sleeping. Falling to sleep — or even staying asleep — are common challenges for caregivers. The stress from being hypervigilant all day long results in shorter tempers, feelings of frustration, and physical fatigue (like neck and back pain), make it difficult to fall asleep and feel rested and ready for the next day. Instead, the cycle begins again and the caregiver falls into a routine state of exhaustion.
- Physical effects. Caregivers often report a loss of appetite, increased use of alcohol and other substances, weight gain/loss, and neck and back pain due to the physical demands of the job. Due to these physical changes and challenges, health problems often follow, like headaches, decreased activity, high blood pressure, and more.
- Loneliness and Isolation. Often thrust into the role because of necessity, caregivers suddenly find themselves in a new world that is difficult to describe to others, and doesn’t allow for much social time. Eventually, it becomes more difficult to relate to others living a carefree life.
- Compassion fatigue. Feeling physically and emotionally exhausted all the time takes a toll on the caregiver, leaving them with a decreased ability to empathize. It’s often called secondary traumatic stress, the effects of which are feelings of apathy, sadness, anger, or irritability.
- Lack of decision-making power. Many caregivers report feeling frustrated by the inability to make decisions on behalf of the person in their care, particularly in cases where it adds additional burdens on them. Decisions around money, resources, medical care, and living situations that are not in the best interest of the patient and made without their input, leave caregivers feeling resentful and frustrated.
- Anger and frustration. Providing round-the-clock attention can leave caregivers feeling easily agitated at even the smallest things. The never-ending duties of the caregiver result in a feeling of hopelessness, causing a quick-to-anger response and a general disdain for the grind of daily requests and responsibilities.
- Trouble processing. Feeling distracted, disorganized, and beleaguered takes a toll. CSS is well known for impacting executive functioning, and reducing our ability to focus, organize, and manage our time well.
- Guilt. In the instance of CSS, the feelings of guilt reside more in simply feeling badly about feeling badly. This type of guilt doesn’t mean that the caregiver is doing something wrong, poorly, or inappropriate, rather it’s more in response to the concurrent feelings of all the symptoms of CSS. A person caring for a loved one might feel guilty that they aren’t doing enough, or that they are selfish for feeling all the negative emotions of anger, frustration, powerlessness, loneliness, and isolation, that ebb and flow throughout the day. The more symptoms of CSS a caregiver is experiencing, the deeper the guilt.
- Mental health conditions. Left untreated, the combination of symptoms can also impact our mental health, leading to anxiety and depression. These are serious conditions that may require treatment with therapy.
Don’t ignore these symptoms of stress, because you’ll end up damaging your own health in the process. While caregiving is emotionally draining and physically taxing, it’s important you don’t get so consumed in your role as a caregiver that you neglect your own health and wellbeing. Keep your own doctor’s appointments and be sure you’re taking care of YOU and making time for yourself!
Your mental health is just as important as your physical health. While it may feel like you don’t have the resources necessary, there are options.
The most effective caregivers seek out physical, emotional and mental care to balance everything. Start by talking to your primary care physician who can offer guidance and share resources. You can also make a call to your insurance provider to inquire about an in-network telehealth provider that offers routine virtual appointments with an online therapist. Talking to someone about all the symptoms you’re feeling really can make a difference. And finally, find your peers for emotional support. Look to social media to connect with other caregivers who might be feeling the symptoms of CSS, and share your experiences. Knowing you’re not alone in these feelings can be a healing balm on your heart and mind.
Don’t disregard professional medical advice, or delay seeking it, because of what you read here. This information is not intended as a substitute for professional consultation, diagnosis or treatment; it is provided “as is” without any representations or warranties, express or implied. Always consult a healthcare provider if you have specific questions about any medical matter, and seek professional attention immediately if you think you or someone in your care may be suffering from a healthcare condition.