Caregiving for a loved one is a role that no one signs up for or plans for I am sorry that we are meeting to talk about this and for the pain that this disease has caused all of us. Acknowledging ourselves for caretaking is an important reminder and can help us to be gentle with ourselves in the role of caregiver. Whether you are a family member or friend, caretaking is now a role that you have added to all the other roles you have in your life( roles such as wife, husband, parent, daughter, boss, student, etc.). It is a role you did not sign up for. Some caregivers may not want to or feel they are able to be caregivers. Relationships that were rocky or conflictual may make caregiving even more challenging and bring up old unresolved feelings. For example- a child and parent have a long history of conflict and suddenly one needs the other in a way that they never expected.

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

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 Not being as or independent due to the nature of a bt- it effects the whole person from the beginning of diagnosis as compared to other cancers that may not have as devastataing effects bec. Of all the functions of our body and mind that are controlled by the brain – the center for all motor activity, emotion and thought. The fact that there are so many types, makes effective tx very complicated.

Caregivers and Patients The emotions that arise for caregivers may be similar to the emotions the patient may be feeling. Although the role of patient and caregiver may be different- both may be experiencing similar emotions. Change in your role- both roles are changing for caregivers. I am here today to share with you my own personal experience as a caretaker for my mom Eileen S. Kelberg, may her memory be a blessing, who passed away in 1996 after a two year battle with a bt. In fact my family and I attended this support group then and found it very helpful. I do recall that we did not have much support when my mother was sick, we didn’t know about the support group here since she was treated in NY, we didn’t know any other psychosocial professionals to talk to and we didn’t have so much time to seek anyone out, despite being a highly educated family. We were busy with doctor appointments, chemo and just trying to get through every day. My brother and I had just graduated from graduate school and were getting ready to start our careers as young twenty-something’s. My father and mother were at a place in life where they were making plans for themselves and their future together as couples do in their 50’s.

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

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)

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.

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.

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

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. If you can- take invemtory of your feelings and pay attention to your behavior. Are you feeling more exhausted-being pulled in may different directions? Feel snippy or irritable? Aware that you might blow at any minute, or feel like crying more often?

Identify what you can and cannot change 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.

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 don’t 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 OXYGEN ON PLANE- why they tell us to reach for our own mask first is because in order for us to take care of others we must be breathing and able to!

Stress Reducers Taking some action to reduce stress gives us back a sense of control. Identify some stress reducers that work for you. Ask them to identify what they do to relieve/reduce stress.

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

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. This is a way of remaining strong- NOT WEAK- as many people think that if they leave or take a break- it is sign that they don’t care enough or are not loving enough. It is the OPPOSITE_ it is that you care so much- you are recharging so you may do the best you can. My experience s that patients understand this and actually want you to take a break. This is a good conversation to have with loved ones so that when you need to take a break, it is understood and guilt feelings can be reduced. I encourage everyone to have this conversation asap, if possible.

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."

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.

RACE FOR HOPE-PHILADELPHIA