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

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

3. 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

4. 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

5. 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?

6. 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

7. 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

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

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

10. 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

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

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

13. Signs of Caregiver Stress
Behavioral
Nervous habits
Smoking
Crying
Yelling
Blaming

14. 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

15. 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

16. 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

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

18. 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

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

20. 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
Connect with other caregivers and loved ones of people with epilepsy in Families and Friends community forms -
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
NJ Mental Health Cares – HELP – 24/7 hotline, can connect with local available resources according to your insurance/needs

21. THANK YOU!
Please contact me for more information: Ruifan Zeng, PhD