CARING FOR THE CAREGIVER PROGRAM BACKGROUND:
The creation of our “Caring for the Caregiver / Resilience and Renewal for Caregivers” program arises from two areas of passion and expertise for the Bernstein Institute: our direct experience of what it is to be a caregiver and the toll it can take physically, mentally, and emotionally on the individual; and our many years dedicated to healing emotional distress and trauma.
Caregivers can easily miss the internal warning signs of the buildup of distress and depletion when taking care of someone who is gravely ill, disabled, or at the end of life. We feel that developing the vital awareness of these signs requires education, training and support from those who have experienced this stress themselves. Our program is designed to address these issues to help the family, in-home caregiver to remain resilient.
We know there are many organizations providing support, training, and resources for family caregivers that are doing a wonderful job. We are unique, however, in that the Bernstein Institute has been helping heal the effects of trauma on individuals for over 50 years. Unfortunately, the average family caregiver isn’t aware that the daily stress, and physical and emotional strain they are enduring is traumatizing. We feel it’s important to educate them and provide them with the tools that can help to alleviate the buildup of physical, emotional and mental stress which leads to ill health.
Statistics are revealing. It’s easy to see why the burdens of family caregiving are becoming so significant and widespread:
MEMORY-CHALLENGED ELDERLY ADULTS
An estimated 6.2 million Americans aged 65 and older are living with Alzheimer’s dementia today. This number could grow to 13.8 million by 2060 barring the development of medical breakthroughs to prevent, slow or cure AD.
Compared to non-caregivers, dementia caregivers report higher levels of stress, more depression and anxiety symptoms, and lower levels of subjective well-being and self-efficacy.
MILITARY VETERANS – PRE- AND POST-9/11
Nearly 6 million caregivers provide care for someone who currently or previously served in the military.
Post-9/11 caregivers are dealing less with the issues of old age and more with mental health issues like PTS and the consequences of traumatic brain injury.
FIRST RESPONDERS
According to the national Substance Abuse and Mental Health Services Administration (SAMHSA), an estimated 30 percent of first responders develop behavioral health conditions such as depression, anxiety and post-traumatic stress disorder (PTS), as compared to 20 percent of the general population. Many of these suffering first responders develop a need for caregiving.
PAID HEALTH CARE WORKERS AND CAREGIVERS
Multiple survey data now show that health care workers responsible for providing direct care for COVID-19 patients are more likely to have depression, anxiety, and mental distress. These mental health issues may be related to psychological distress from witnessing COVID-19-related deaths, extra-long work hours, and work-life imbalance. Health care workers have been working nonstop for the past 15 months without a full appreciation of their sacrifices. Others have suffered financial distress as well, including salary cuts and furloughs.
CARING FOR THE CAREGIVER / RESILIENCE AND RENEWAL FOR THE CAREGIVER
A caregiver is any person who cares about someone in harm’s way, and is therefore susceptible to Secondary Traumatic Stress, Compassion Fatigue, or Burnout.
Caregiving takes a toll on the body, mind and emotional well-being . The buildup of unreleased stress can be traumatizing and result in depression, frustration and discouragement, as well as physical depletion, disease and disability. For caregivers to remain resilient, they need to develop awareness of the buildup of stress by recognizing the thoughts, attitudes and physical sensations in their bodies which provide warning signs on the road to compassion fatigue and burnout.
Self-care for caregivers is essential. By nature, caregivers tend to set aside their own concerns to think first of their ailing loved one. Priorities for self-care, and a repertoire of activities to refresh and restore a caregiver’s well-being are vitally important. Self-care routines are needed to preserve physical, mental, emotional and spiritual aspects of well-being.
In-home care by a family member can often be the only choice for their loved one. Care facilities are too expensive for many families to afford. There is much to learn to be able to provide care for someone who is ill or disabled. Caregiving is an all-encompassing job requiring education, resources, and support. Our program addresses the following:
STRESS – COMPASSION FATIGUE – BURNOUT
1. Stress
A. Many responsibilities and burdens of caring for your loved one
B. Tired but capable of recovering
C. Aware of physical symptoms
- Tightness in the body
- Sleep disturbances
- Change in eating patterns and digestion
- Blood pressure changes
- Emotional distress
2. Compassion Fatigue
A. Lingering dissatisfaction with aspects of your job
B. Less patience and frustrations are building
C. When tired, can’t recover quickly, need possibly a week or more
3. Burnout
A. Don’t like your job as caregiver, want to quit
B. Don’t like the person you care for, overwhelmed by their needs, resentful
C. Exhausted, can’t recover during time off
CAREGIVER SELF-CARE GUIDELINES
1. Physical
A. Sufficient rest
B. Good nutrition
C. Exercise and stretching
E. Meditation, relaxation techniques
D. Massage
E. No reliance on self-medication
2. Mental
A. Ability to leave work behind, shift thoughts
B. Engage in creative, expressive, fun activities
C. Maintain a positive, constructive attitude (not hopelessness, sick humor)
D. Learning what trauma is and how it affects the mind and body
3. Social/Emotional
A. Connect with others (not withdraw)
B. Ask for help
C. Seek affirmation
4. Spiritual
A. Pursue purpose and passion
B. Follow a tradition with personal meaning
TEAM BUILDING
Using a team approach can help all of those who care for someone to be at their best and remain resilient in their invaluable role.
A. Being a member of a team means the workload is distributed amongst all the caregivers and provides opportunities for rest and self-care.
B. Team members have the opportunity to hear different perspectives and learn from what other teammates have experienced while taking care of that individual.
C. Weekly meetings can enable a team to discuss together the things that may have changed for the individual that week and adjust the caregiving plan.
D. Team meetings are also a place to catch those members of the team on the verge of compassion fatigue or burnout. It’s a place where accountability, support, and gratitude are all addressed in a safe and loving place and dealt with as a team.
E. Communicating within the team allows all the members to make better overall decisions for the person they are caring for.
SUPPORT GROUPS
Caregivers can gain perspective and encouragement and fight isolation by hearing what other caregivers are going through and exchange information in a well-led, controlled atmosphere. Support groups will provide the following:
A. The opportunity to process stress in a healthy way
B. Self-care techniques
C. Education
D. Outside resources
CARE MANAGEMENT
Caregiving of your loved one will change as their illness progresses. Some of these changes will be subtle and others will be dramatic. Depending on the circumstance it’s important to become an advocate for your loved one and know when to call in a specialist. Changes to be aware of are:
A. Personal hygiene
B. Safety and comfort
C. Medication management
D. Diet
E. Exercise and movement
F. Stimulating brain activity
END OF LIFE
As your loved one’s health deteriorates it will become necessary to call Hospice. Before this happens be sure to have a discussion with your loved one about their thoughts and wishes. Hospice can provide a more detailed medical assessment and care plan. They do an excellent job of directing care and managing medications. They walk with you through the process and provide great support to the caregiver.
A. Connect with family and friends
B. Put finances in order
C. Gather important documents
D. Make burial and funeral arrangements