EBHSG - APRIL 1996 MEETING NOTES

TOPIC: "ROLES OF THE CAREGIVER"

Ms. Judy Rael, M.S.W., of Muircare Senior Services at John Muir Medical Center was the guest speaker for the April 9th meeting of the East Bay Headache Support Group. The meeting was held in the Ball Auditorium of John Muir Medical Center from 7:30 to 9:00 PM and approximately 53 people were in attendance, many of them caregivers for headache sufferers.

Ms. Rael:

As a caregiver, you must learn to respect boundaries and redefine your goals. You are responsible to care for the patient, to love him/her, nothing else. Judy said that she tells caregivers of Alzheimer’s patients that it is impossible to make the patient happy. "Your only responsibility is safety, not happiness."

She talked about how headaches can interfere with relationships. One man from the audience mentioned that he and his wife frequently start out on car trips and after they have traveled some distance, his wife will finally tell him that she has a migraine and she is not up to it. He has to turn around at that point, and he is getting so he doesn’t want to plan any more trips with her.

For headache sufferers, it is humiliating to think of your partner as a caregiver.

The disabled person doesn’t want to tell his/her caregiver how much pain he is in. We feel guilty that we’re spoiling others’ good times.

There is a lot of guilt on both sides—the "G" word. The family goes into a spiral.

What you can do:

• Learn all you can about the condition. Headache is an invisible condition, which is harder emotionally to understand or explain.

• Communication and trust and openness is important.

• Learn steps and coping mechanisms. See Judy’s handouts attached.

• Set realistic goals and expectations. Plan achievable goals. Develop realistic expectations.

• Educate yourself, and tell the children about the illness. Secrets are scarier than reality. Tell the kids the truth. Illness can help children grow/learn.

• Establish your limits.

• Ask for and accept help.

• Communicate--grow together in your relationship.

• Reassure the patient he/she is not destroying others’ lives.

• Involve other people (let kids in on it, get therapy if necessary).

• Create boundaries—no one has a perfect life. "Our life and our happiness are our own responsibility." "You can’t always fix something, but you can take care of yourself."

The disabled person in a way has it easier than the caregiver, because he doesn’t have a lot of choices.

Judy’s husband is disabled and frequently in pain. He withdraws when trying to cope with his pain, which causes a distance between her and her husband.

Caregiver: Don’t get sucked into the patient’s illness. Lead your own life. The caregiver needs some base. Don’t give up. You cannot fix it.

Important point for caregivers: Don’t completely focus on someone else (the headache sufferer) and forget about yourself, i.e., support your own needs.

The notes provided above were taken by an EBHSG volunteer and have not been reviewed by the speaker for accuracy. If you have any questions regarding the notes, please contact the EBHSG.

The intention of the East Bay Headache Support Group is to provide information and resources. It does not provide medical advice, which should be obtained directly from a physician.