Caregivers: How to help and how to be helped Ruifan Zeng, PhD Northeast Regional Epilepsy Group

Overview What is a caregiver? (vs. provider) Who is a caregiver? Are you a caregiver? Rewards, Risks, Stresses What you can do Resources NAMI

Mindfulness Exercise Get comfortable Eyes closed or open Focusing on breathing, releasing areas of tension Inhaling and exhaling slowly Noticing thoughts and distractions, letting them go Visualize a comfortable, safe place Physical details? Sensory experience? Activities? Important to allow yourself this space – take even just a few minutes a day to check in with yourself, recognize that most concerns/problems can wait those few minutes

What is a caregiver? Someone who helps out in 1 or more ways: Personal care Helping around the house Transportation/shopping Organizing care Psychosocial support Financial/legal affairs Living together

Are you a Caregiver? Do you: Care for a family member or friend at home? Have a child with mental or physical needs? Phone a friend or relative regularly to check on them and make sure they have taken their meds?

Recognition and Support for the Role of Caregivers Psychosocial needs and supports required for caregivers should be a part of the health care plan The importance/value of this group and saving health care costs are too large to ignore. Oxygen mask

Caregiving: Joys and Rewards New relationship with care recipient Chance to give back and show love Sense of accomplishment New skills, knowledge, inner strengths Increased compassion, growth New relationships through support groups

Risks of Caregiving Increased risk of stress related illness Increased risk of substance abuse Increased risk of depression Decreased self care Decreased preventative healthcare

Sources of Caregiver Stress Emotional and physical strain Changing roles Changing relationships Competing demands Increasing isolation Decreased personal activities Caregiving can be quite stressful

What is stress? Normal part of everyday life Positive stress Negative stress Often think that stress is only an emotional reaction but stress is also a physical reaction to events

Signs of caregiver stress Physical Headaches Changes in eating patterns, weight changes Sleep issues Heart problems/high blood pressure Fatigue

Signs of caregiver stress Mental and Emotional Worry, fear, anxiety Anger, irritability Depressed mood Decreased concentration Feelings of being overwhelmed

Signs of Caregiver Stress Behavioral Nervous habits Smoking Crying Yelling Blaming

Self Care: Things You Can Do Exercise Healthy eating Stress reduction Seek intellectual and social opportunities Stay organized Make a schedule Get support as needed

Steps for Managing Stress Know what condition you’re dealing with Build on your own general health Makes changes when possible Change your view/attitude Practice relaxation techniques Know your resources Overview

Managing stress Know what you’re dealing with Understand the condition Plan ahead Be honest about your limitations Be aware of available programs and services

Managing Stress 2. Build on your general health Exercise Nutrition Rest Social interaction Personal activities

Managing Stress 3. Make changes to the situation Assertive communication Arrange practical home help Join a support group Seek professional help Talk openly if possible, give both of people breaks from illness

Managing Stress 4. Practice relaxation techniques Stretching Progressive muscle relaxation Clearing your mind Visualization Mindfulness

Get Connected Joining support groups, online or in person, are found to helpful in promoting wellness among those living with and caring for those with chronic illness Take advantage of the wellness programs offered at NEREG through www.epilepsylifelinks.com Connect with other caregivers and loved ones of people with epilepsy in Families and Friends community forms - www.epilepsy.com Epilepsy Foundation of NJ – chatrooms, support group meetings, forums, events, fundraisers (resources for both caregivers and patients) FND Hope – charity for patients with PNES – caregiver resources/forums available https://fndhope.org/living-fnd/carer/ NJ Mental Health Cares – 866202HELP – 24/7 hotline, can connect with local available resources according to your insurance/needs

THANK YOU! Please contact me for more information: Ruifan Zeng, PhD rzeng@epilepsygroup.com