Caregiving for a Loved One with Brain Tumor: Coping Strategies and Support.

1. Caregiving for a loved one is a role that no one signs up for or plans for

2. Pam Kelberg, MSSW, LSW 267- 259-8077 Pamelakelberg@verizon.net Psychotherapist: Caregivers, Couples, Anxiety Caregiver for my mother Founder & Co-Chairperson Race for Hope-Philadelphia, 2006, 2007, 2008, 2009, 2010

3. Some Statistics Each year approximately 190,000 people in the United States will be diagnosed with a primary or metastatic brain tumor In PA in 2007 2,300 people were diagnosed with a brain tumor. 120 different types of brain tumors

5. Caregivers and Patients The emotions that arise for caregivers may be similar to the emotions the patient may be feeling.

6. Emotions both caregivers and patients may feel Guilt Anger Hope Fear and Confusion

7. GUILT Patients may feel guilty watching the caregiver take care of what used to be shared tasks or responsibilities (like parenting tasks, household tasks- paying the bills-driving, cooking, dressing, etc.) Caregiver- can also feel guilty that they are ABLE to continue such tasks while patient is no longer able( like walk briskly through the mall doing errands, writing, memory functions, going to work)

8. ANGER Patient may feel angry at the disease/loss of health, at the doctors, others, G-d. Caregivers may feel angry at the disease/ loss of health, the way the disease is effecting the loved one, the change of roles in the family, others, G-d.

9. HOPE /FAITH A dominate emotion that we all have. Helps us be strong, determined and resilient. The meaning and perspective on life may be informed by our hope. Relationships are cherished and understood in different ways.

10. Stress and Caregiving Stress occurs even for the best caregivers Stress can manifest as physical and emotional symptoms Stress can lead to feeling isolated and alone which can acerbate more stress

11. Warning Signs of Caregiver Stress Signs may include irritability, sleep problems, forgetfulness, inability to concentrate, feeling depleted. Recognize warning signs early . Know your own warning signs, and act to make changes. Don't wait until you are overwhelmed.

12. Identify what you can and cannot change . Ask yourself, "What do I have some control over? What can I change?" Even a small change can make a big difference. The challenge we face as caregivers is well expressed in words from the Serenity Prayer: Grant me the serenity to Accept the things I cannot change, Courage to change the things I can, And the wisdom to know the difference.

13. Is It OK To Care For Myself? YES! You DESERVE IT AND IT IS NECESSARY! Common Questions Asked: How can I possibly think of myself? Am I being selfish? If I dont do it, no one else will do as good a job. If I take a break for myself, does that mean I am not caring enough? Caregivers need self-care

14. Stress Reducers Taking some action to reduce stress gives us back a sense of control. Identify some stress reducers that work for you.

15. How Can I Reduce Stress? Stress reducers can be activities like: Walk for 20 minutes/day Take some time to tend to yourself with a shower/bath, give yourself a manicure Seek you time AND support- attend psychotherapy, support group, have coffee with a friend, seek interactive support online Practice meditation/relaxation/mindfulness breathing exercises

16. When Respite Is Needed Listen to yourself. When needed take a temporary break. Seek support from other family members or friends and ask them to help out for a few hours or as needed Seek outside respite care from a nursing agency, in-home care agencies, adult day services.

17. Advocating & Navigating Medical Needs Prepare questions ahead of time . Make a list of your most important concerns and problems. Issues you might want to discuss with the physician are changes in symptoms, medications or general health of the care recipient, your own comfort in your caregiving situation, or specific help you need to provide care. Enlist the help of the nurse. Many caregiving questions relate more to nursing than to medicine. In particular, the nurse can answer questions about various tests and examinations, preparing for surgical procedures, providing personal care, and managing medications at home. Make sure your appointment meets your needs . Example: A good time of the day for you. Take someone with you . A companion can ask questions you feel uncomfortable asking and can help you remember what the physician and nurse said. Use assertive communication and "I" messages . Enlist the medical care team as partners in care. Present what you need, what your concerns are, and how the doctor and/or nurse can help. Use specific, clear "I" statements like the following: "I need to know more about the diagnosis; I will feel better prepared for the future if I know what's in store for me." Or "I am feeling rundown. I'd like to make an appointment for myself and my husband next week."

18. Summary Learn and use stress-reduction techniques. Attend to your own healthcare needs. Get proper rest and nutrition. Exercise regularly. Take time off without feeling guilty. Participate in pleasant, nurturing activities. Seek and accept the support of others. Seek supportive counseling when you need it, or talk to a trusted counselor or friend. Identify and acknowledge your feelings.

19. RACE FOR HOPE-PHILADELPHIA