Q&A: Caregiver Bill of Rights

Every Sunday, Cancer Services publishes a Cancer Q&A in the Health Section of The Baton Rouge Advocate.

Q: My sister has been diagnosed with cancer and I am her sole caregiver. I find myself being short with her and other people more and more and then I feel guilty about it. Is this normal?

A: It is normal for caregivers to experience feelings of guilt, fatigue, and irritation. It is important for caregivers to pay attention to their own feelings and needs. The National Cancer Institute suggests referring to the following while caring for a loved one.

Caregiver's Bill of Rights:

• I have the right to take care of myself. This is not an act of selfishness. It will give me the ability to take better care of my loved one.
• I have the right to seek help from others even though my loved one may object. I know the limits of my own endurance and strength.
• I have the right to maintain parts of my own life that do not include the person I care for, just as I would if he were healthy. I know that I do everything that I reasonably can do for this person. I have the right to do some things just for myself.
• I have the right to get angry, be depressed, and express difficult feelings once in a while.
• I have the right to reject any attempt by my loved one to make me do things out of guilt or anger, (It doesn't matter if she knows that she is doing it or not).
• I have the right to get consideration, affection, forgiveness, and acceptance for what I do for my loved one, as I offer these in return.
• I have the right to take pride in what I'm doing. And I have the right to applaud the courage it has taken to meet the needs of my loved one.
• I have the right to protect my individuality. I also have the right to a life that will sustain me in times when my loved one no longer needs my full-time help.

The Caregiver Support Group at Cancer Services meets the second Friday of every month at noon. Anyone caring for a loved one, no matter the ailment, is encouraged to attend to help better take care of themselves. Call Natalie at 225-927-2273 if you’d like more information.

For more information contact Courtney Britton, librarian at Cancer Services of Greater Baton Rouge at (225) 927-2273 or visit the Resource Center at 550 Lobdell Avenue.

Putting Your Own Mask on First: Caregiver Appreciation

Caregivers of cancer survivors, or those coping with any illness or disability, face unique challenges and often struggle with taking care of themselves as well as their loved one. Esther Sachse, LCSW, Director of Support Programs at Cancer Services of Greater Baton Rouge, equates their situation to the familiar safety drills on airplanes: “When the oxygen masks drop down, you have to put your own mask on before you help others. It’s the same with care-giving, it’s so important for caregivers to take care of themselves well before they can best help their loved ones.”

On February 10^th, Cancer Services took a step in caring for the caregivers by hosting an appreciation luncheon to honor and celebrate all that they do. LSU School of Social Work professor Dr. Scott Wilks, who specializes in caregiver research, spoke and answered questions at the luncheon. This prompted many of the 36 attendees to share their own stories. One woman shared how hard it was to let the nurse they hired actually take over some of the care-giving responsibilities for her husband. Another explained the guilt that comes after feeling frustrated with her loved one, because sometimes even the best caregiver can get aggravated. Fellow caregivers nodded in agreement, empathizing over their shared situation.

Another commented how nice it was to have people just to call and check in, explaining, “Sometimes as a caregiver you need an ear, someone to listen to you.” That’s why the Caregiver Support Group at Cancer Services meets the second Friday of every month at noon. Anyone caring for a loved one, no matter the ailment, is encouraged to attend to help better take care of themselves. Call Natalie at 225-927-2273 if you’d like more information.

Not Alone: Pancreatic Cancer Survivorship Luncheon

Attendees at Cancer Services' first Pancreatic Survivorship Luncheon.

 
Survivors, caregivers and supporters gathered at Cancer Services this past Monday for our first Pancreatic Cancer Survivorship Luncheon. Survival rates tend to be dramatically lower for pancreatic cancer than other cancers and because of these statistics, many survivors* can feel hopeless and isolated, even within the cancer community. The Survivorship Luncheon gave them the opportunity to speak with fellow pancreatic cancer survivors who can empathize and share information. Conversation ranged from comparing their experiences of being diagnosed, to coaching a caregiver on what her mother might be going through, to sharing diet tips. For most though, simply meeting others with the disease was the reason for coming. Many of the attendees had never met a single other person with pancreatic cancer.
Paula Aliers, PANCAN facilitator of the monthly Pancreatic Survivor Network Meetings explains that, “It’s nice for patients to hear they’re not going crazy, that they’re not the only one and sometimes that’s hard because people don’t want to talk about pancreatic cancer – there’s a stigma there.” But there’s no stigma at Cancer Services. One of the attendees expressed in a thank-you note that, “I left the survivor party yesterday with such a sense of encouragement and finally felt like I had truly come to place where I could ‘take the mask off.’”

The Pancreatic Survivor Network meets at the General on Bluebonnet on the third Thursday of each month, from 6:30-8:30. For more information about Pancreatic Cancer, our support groups or anything else call Cancer Services at 225-927-2273 or visit our website.

Each month, Cancer Services will be hosting a different survivorship event to celebrate and honor survivors’ unique journeys. It’s no secret that some cancers get more attention than others. At Cancer Services we want to make sure all our clients feel supported in meaningful and relevant ways. Click here for a tentative schedule of the 2012 Survivorship Events.

*According to the National Cancer Survivors Day Foundation, a cancer survivor is anyone with a history of cancer, from the moment of diagnosis through their journey. Thus, Cancer Services refers to all clients as "survivors.” We are here for you and all 6,000 of our clients as you live with, through and beyond cancer.