June is Alzheimer's and Brain Awareness month. May was maternal mental health month (interested in reading more about this? Click here to see May's clinician newsletter). And any time, in any month, when we are talking about health issues - we are also acknowledging the need for those who give care.
Mei (she/her) has been caring for her brother, Ang (he/him), for two years. Ang has Amyotrophic Lateral Sclerosis (ALS), a disease of the central nervous system that impacts the brain and spinal cord. Ang’s cognitive functioning is still strong, however he has gradually lost muscle control over the course of his illness. Now, he cannot speak. He has difficulty swallowing, and trouble coughing or clearing his throat on his own.
Mei has supported her brother in scheduling and attending visits with multiple healthcare providers, including his neurologist, his speech therapist, and his respiratory therapist. She has helped to administer breathing treatments, wrestling with breathing machines and with worry that she is “doing it wrong,” as she has no medical background or training. During breathing treatments, her brother uses a device that tracks his eye movements to talk to her. As he instructs her what to do and informs her regarding his reactions to the treatment, she finds her stress level rising; she is sure her blood pressure spikes, and she recognizes that she is more irritable. She then feels guilty for her irritability and responds to her guilt by working harder. She finds herself constantly thinking about what she could do better or differently to support him.
Underneath this conscious efforting to do more and do better is a depth of anger and sadness. She misses her relationship with her brother before he got sick, and feels the intense injustice of what he is going through. She does not want to work for him, she wants to be with him, spending quality time before his inevitable passing. She truly believes that without her efforts, he could suffer more, and at the same time she can see that they are both suffering now.
Caregiver stress is typically defined as stress associated with caring for another individual, occurring outside of the context of a professional role. Informal caregivers, or individuals that are not providing caregiving in a paid professional role, are typically family or close friends of individuals struggling with illness. Often, caregivers tend to their loved one on top of going to work and managing their personal lives. Of note, healthcare workers may find themselves in a caregiving role at home, due to their expertise and skill when it comes to working with illness and injury, putting them at risk for both caregiver stress and burnout.
Factors that contribute to caregiver stress include:
· Financial strain due to the cost of medical care, or working reduced hours to accommodate caregiving responsibilities.
· Emotional demands of caregiving for a loved one, such as anticipatory grief, guilt, or empathy and compassion.
· Physical Demands of tasks such as lifting, bathing, or assisting their loved one with mobility issues.
· Time Demands such as balancing parenting, personal care, and assisting their loved one with navigating complex medical and insurance systems, scheduling appointments, or driving to/from appointments.
· Social Isolation as more time is spent caregiving and less time is spent engaging in social activities.
· Lack of Support from agencies, healthcare professionals, or other family members.
During medical events, caregivers may assist care receivers in multiple ways. Caregivers review information with healthcare providers about ongoing symptoms and progress with treatment plans. They may assist patients with activities of daily living such as bathing or dressing, staying organized, or managing finances. They may support their loved one through mental health crises such as acute suicidality, or mental health reactions to physical illness, such as anxiety or depression. They may assist with reorientation of a loved one who struggles with delirium or confusion due to illness or medication complications. All along the way, caregivers work to keep the patient engaged in healthcare.
The emotional labor involved in caregiving is high. Emotional labor refers to the effort, management, and regulation of one's own emotions to meet the emotional demands of a particular situation or role. It involves noticing and regulating one's own emotions in order to meet the expectations and requirements of a relationship, job, or social setting. When a caregiver or healthcare provider engages in emotional labor, they are typically working to create a more healing emotional atmosphere or experience for others, such as clients, colleagues, or family members. When family dynamics are challenging – for example, for adult children of alcoholics, or when caregiving for individuals with mental illness or both physical and mental illness – the experience of the emotional demands of caregiving can be that much more taxing (Chakrabarti, 2013).
As caregivers engage in daily emotional labor as well as carrying the task burden of caregiving, their usual coping strategies often become overwhelmed, leading to stress. Caregiver stress can manifest through various physical, emotional, and behavioral symptoms. Recognizing these symptoms is important, as addressing caregiver stress is crucial for both the well-being of the caregiver and the quality of care provided to the recipient.
Some common signs and symptoms of caregiver stress include:
· Physical Symptoms: Fatigue or exhaustion, Sleep disturbances, including insomnia or oversleeping; Frequent headaches or physical pain; Weakened immune system, leading to frequent illnesses; Changes in appetite or weight loss/gain; Elevated blood pressure or other stress-related health issues
· Emotional Symptoms: Feelings of sadness or depression; Increased irritability or mood swings; Anxiety or constant worry; Feelings of helplessness or hopelessness; Overwhelming guilt or self-blame; Emotional numbness or detachment
· Behavioral Symptoms: Withdrawal from social activities or hobbies; Neglecting personal care and self-care routines; Difficulty concentrating or making decisions; Increased use of alcohol or other substances; Experiencing frequent frustration or irritability with the care recipient; Neglecting one's own needs in favor of the care recipient's needs
· Cognitive Symptoms: Constantly thinking about caregiving responsibilities; Difficulty switching off from caregiving tasks, even when not directly providing care; Cognitive fatigue and forgetfulness
· Relationship Strain: Strained relationships with the care recipient or other family members; Feeling isolated or disconnected from friends and other support networks
· Sense of Loss: Grief or a sense of loss related to the care recipient's health decline; Anticipatory grief over the future loss of the care recipient
In the United States, the National Alliance for Caregiving reports that nearly one in five individuals are providing unpaid care to an adult with health or functional needs (NAC, 2020). At least 8.4 million people in the United States provide care to an adult with a mental or emotional health issue. The five-year period between 2015 and 2020 saw the physical health of caregivers worsening, and during that same time period, caregivers reported increases in difficulty coordinating care for their loved ones (ibid).
The good news is that research is beginning to show that therapies including mindfulness training, such as Mindfulness Based Stress Reduction (MBSR) or Acceptance and Commitment Therapy (ACT), improve caregivers' psychological well-being while reducing stress. If you or a loved one would like to learn more about these psychotherapies and how they may help, schedule a free consult today.
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