Caregiver Programs

The Family Circle of Care Program is a great program offered by the Oklahoma Brain Tumor Foundation to assist caregivers with the enormous amount of stress, worry and anxiety associated with caring for a loved one with a brain tumor. OKBTF Case managers work with caregivers to identify needs and to identify family members, friends and others interested in helping. Case managers will then facilitate and put your Family Circle of Care team into action by calling team members via the phone (at least 5 family members or friends) or by calling a team meeting.

Please call to set-up your Family Needs Assessment meeting or if you have already met with a Case Manager and would like to take advantage of the Family Circle of Care Program, please call the office at (405) 843-4673 to speak to a Case Manager.

Other Resources for Caregivers:

There are other resources available on the Internet that have similar programs to the Family Circle of Care Program that you can set-up yourself. Visit http://www.bts.lotsahelpinghands.com/, they have a similar program that is web-based and manageable yourself.

Understanding Caregiving

A brain tumor is a disease with unique problems. When someone you love is ill, you probably want to do all you can to help them. But caregiving can produce enormous stress, worry, and anxiety. Your role is important, and it is also important to take care of yourself and your own needs.

The diagnosis of a brain tumor forces families and friends to cope with difficult feelings, such as guilt, ambivalence, and frustration. You might feel overwhelmed, exhausted, challenged, angry, frustrated, and emotionally numb. All of these feelings are completely normal. They will ebb and flow along with good and bad days. Be sure to find a safe way to express your feelings so that they don’t spill over at the wrong time.

Unfortunately, caregivers rarely receive enough validation for what they are feeling and experiencing, or for the amount of work and time they devote to this role. You may have put your own life on hold to care for another, and this can stress families and relationships. So much attention is placed on the patient that caregivers may not receive or seek the support and encouragement that is needed.

The emotional strength and patience required to care for someone with a brain tumor is beyond comprehension for many people. Because brain tumors are so rare, many patients and caregivers feel isolated, and support is not always readily available.

Coping with the late stages of a terminal brain tumor can be extremely difficult for everyone. The patient’s medical team will not be able to tell exactly what to expect at the end. Patients go through ups and downs, so caregivers may feel uncertain of and unprepared for what will happen next. Caregivers cannot forget that even while caring for another they must take care of themselves.

Make it Easier…..

You are only one person and cannot do everything by yourself. Ask family members and friends to help out. People often want to help in such situations but are not sure what they can do. Make a list of the ways others can help, and delegate those responsibilities as needed. Everyone in the family should be involved, in some way, in taking care of an ill family member. Consider each person’s abilities and assign tasks accordingly. Allowing others to help will allow you to take some needed time off from caregiving.

Protect Yourself

Protect yourself from unnecessary stress and work. Learn to say no to added responsibilities and take a step back. This might make you feel guilty, but it is important to think of yourself. Be realistic about what you can handle, both physically and emotionally. Even the most committed caregivers are only human and have limits to their patience and strength.

Get Support

Support can come in different ways. Simply sitting down with a trusted friend and talking about your feelings can do wonders. A brain tumor support group can offer invaluable help. Sometimes, however, those things are not enough. If you continue to feel overwhelmed, frustrated, anxious, or depressed, you may want to speak with a professional therapist. The OKBTF has volunteer counselors available who are free of charge and willing to help. Please contact the OKBTF office and let us know you would like to set up a meeting with a volunteer counselor.

A good source of support for caregivers can also come in the form of support groups. The OKBTF has support group meetings available where you can meet other caregivers and patients and learn through each others experiences, share information and just comfort one another. It is important to remember you are not alone. Click here to print or view a list of upcoming support group meetings.

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