Palliative Care Caregiver Relief and Supportive Care Services Presenter Kristi Reeves LMSW Objectives Caregivers Who they are What they do Challenges Barriers List three caregiver resources ID: 770220
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Palliative Care: Caregiver Relief andSupportive Care Services Presenter: Kristi Reeves, LMSW
Objectives Caregivers: Who they are? What they do? Challenges Barriers List three caregiver resources Caregiver burnout and compassion fatigue Self care and ways to establish positive self care in daily living
“There are only four kinds of people in this world: Those who have been caregivers, Those who currently are caregivers, Those who will be caregivers, and Those who will need caregivers.” - Rosalynn Carter -
What is a Caregiver? “ Someone providing unpaid assistance and support to family members or acquaintances who have physical, psychological, or developmental needs.” * Sloan Work and Family Research Network. ( n.d. ). Retrieved August 29, 2018, from http://wfnetwork.bc.edu
What is a Caregiver? Helping older, chronically ill or disabled family members and friends. Many people in these roles do not think of themselves as caregivers: ADLs, doctors appointments, assisting with meds, managing side effects, keeping others informed, etc.
Who are the Caregivers? Partner/spouse Adult children Parent Other relatives Friend Anyone who provides care
Challenges of Caregiving Direct Care Caregiver Stress Common Stressors IRS of Caregiving Caregiver Needs Caregiver Self-Care Ongoing Issues
Direct Care Pain Communication Skills which can be taught; resources available. Caregiver Injuries Not providing proper care
Caregiver StressPhysical Strain Emotional Stress Health Decreased
Common StressorsResistant Long Distance Caregiving Family Disagreements Physical Care Needs Change Uncertainty Poor/Ineffective Medical Care Money Legal Matters Life/Health/Safety Caregiver Feelings
IRS of CaregivingI: Information R: Respite S: Support
Caregiver NeedsCaregiver needs are important Right to say no Feelings are important Take care of self Right to ask questions
Ongoing IssuesCaregivers input is not taken into consideration Lack of social support Cost of long term care Strain on marital relationship Knowledge of medical care
Barriers Education Isolation Support Trust Finances/Legal Matters Self Care Guilt Greif/Loss
Barriers: Education Information on the illness Communication skills Honest information on prognosis Care strategies Back care, bathing , dressing, toileting, etc. Understanding behavioral concerns
Barriers: IsolationFeelings of abandonment Not knowing how/who to ask for help Family conflict Loss of social supports Physical limitations Chronic illness of caregiver Depression Substance use/prescription abuse
Barriers: TrustEthnic/cultural issues Fear of strangers Embarrassment Fear of being robbed/abused “We don’t need the help”
Barriers: Finances & Legal Issues Cost of hiring private duty Assets Overwhelmed with bills/who is paying them? Power of attorney Release of medical information
Barriers: Self CareDon’t admit to own needs Not knowing how to receive offers of help Own medical care Respite Dealing with other family members Depression/Stress
Barriers: Guilt“I should” No one will do as good as I do Fear of something happening Placing loved one in facility Guilt vs Regret Being “Perfect” is a set up for failure Do I deserve to have a good time if my loved one is suffering? Thinking about my needs is selfish Ambivalence
Caregiving Rewards Create lasting memories Improve relationship/heal the past Learn to put someone else first Patience Gratefulness Compassion No regrets/peace of mind Spiritual fulfillment Change priorities/”what is really important” Develop new skills
Helping CaregiversUnderstand the complexities Helping them identify as a caregiver Listening to their concerns Acknowledge their feelings Encourage them to seek help
Caregiver Burnout Caregiver burnout is a state of physical, emotional, and mental exhaustion that may be accompanied by a change in attitude -- from positive and caring to negative and unconcerned. Burnout can occur when caregivers don't get the help they need, or if they try to do more than they are able -- either physically or financially. Many caregivers also feel guilty if they spend time on themselves rather than on their ill or elderly loved ones. Caregivers who are "burned out" may experience fatigue, stress, anxiety, and depression. https://my.clevelandclinic.org/health/diseases/9225-caregiving-recognizing-burnout
What causes caregiver burnoutRole confusion Unrealistic expectations Lack of control Unreasonable demands Other factors https://my.clevelandclinic.org/health/diseases/9225-caregiving-recognizing-burnout
Symptoms of caregiver burnout Withdrawal from friends, family and other loved ones Loss of interest in activities previously enjoyed Feeling blue, irritable, hopeless, and helpless Changes in appetite Changes in sleep patterns Getting sick more frequently Feelings of wanting to hurt yourself Emotional and physical exhaustion Irritability https://my.clevelandclinic.org/health/diseases/9225-caregiving-recognizing-burnout
“Too often we underestimate the power of a touch, a smile, a kind word, a listening ear, an honest compliment, or the smallest act of caring, all of which have the potential to turn a life around” -Leo Buscaglia
Support Groups Caregiver Support GroupEvery fourth Wednesday Where: Woven Life 701 NE 13 th Street Who’s Invited: Those caring for patients with long-term or chronic illnesses. Contact: Samantha Pascoe 405-239-2525 Please RSVP www.wovenlife.org/caregiver-support-group
Support Groups https://www.oumedicine.com/oumedicine/primary-care/patients-visitors/support-groups https ://stephensoncancercenter.org/Patients/Specialty-and-Treatment-Centers/Supportive-Care/Support-Groups
Support Groups Sunbeam Family Services Various locations, days and times Suggested $2.50 donation https:// sunbeamfamilyservices.org/wp-content/uploads/2015/12/Support-Group-Flyer-FY17.pdf
Calm Waters Grief Support GroupsSchool Based Groups Contact: 4334 NW Expressway, Suite 101 Oklahoma City, OK 73116 Phone: 1-405-841-4800 Fax: 1-405-841-4803
Self CareCaregivers tend to neglect their own self Taking care of yourself will allow you to take care of your loved one Treat caregiving like a marathon: Pace oneself Learn the ups and downs of the disease Learn to replenish along the way All are essential – or you don’t finish the race
Self CareFive Senses Mindfulness Exercise
Self Care Challenge
Caregiver Books The Conscious Caregiver: A Mindful Approach to Caring for Your Loved One Without Losing Yourself by Linda Abbit While They’re Still Here: A Memoir by Patricia Williams My Two Elaines : Learning, Coping, and Surviving as an Alzheimer’s Caregiver by Martin J. Schreiber Living With Dying: A Complete Guide for Caregivers by Katie Ortlip , RN, LCSW and Jahnna Beecham Holding the Net: Caring for My Mother on the Tightrope of Aging by Melanie P. Merriman A Guide for Caregiving: What’s Next? Planning for Safety, Quality, and Compassionate Care for Your Loved One and Yourself by Tina Marrelli Caregiver Defined: Words that honor the work of the caregiver by Michael Fortuna, with illustrations by Peg Lee
Referenceshttps://www.agingcare.com/articles/caregiving-ending-after-death-148071.htmCalm Waters. (n.d. ). Retrieved October 2, 2018, from https://www.calmwaters.org/https://my.clevelandclinic.org/health/diseases/9225-caregiving-recognizing-burnout Family Caregiver Alliance. (2018, October 1). Retrieved from https://www.caregiver.org/Calm Waters Sloan Family Work and Research Network. ( n.d. ). Retrieved September 29, 2018, from https://wfrn.org/ Help for children, families and seniors. ( n.d. ). Retrieved October 15, 2018, from https://sunbeamfamilyservices.org/
Questions???? Contact: Kristi Reeves, LMSW Phone: (405) 618-3982 kristi.reeves@oumedicine.com