I have a question
There are so many questions that will arise throughout the journey, for all involved. It is impossible to knowwhat to ask. Here are some answers provided in consultation with cancer survivors, caregivers, and professionals.
Q. I know my caregiver and friends mean well, but I want to do things on my own. How can I do this? ~“Struggling with Independence”
A. Talk with them and be specific about which activities you enjoy doing and need to do to maintain normalcy and dignity. Caregivers often forget to ask the patient what they want. Be receptive to their feedback if some of those chores are detrimental to your health. Break down tasks and compromise on what they will help you with and what you can and will continue to do. It’s okay to want independence, but it is also necessary to recognize that some tasks require help.
Q. My father and I are trying to take care ofmy mother, but we keep fighting over who does what and what is best for her. What should we do? ~“Clashing Caregivers”
A. Some people have found it to be useful to assign a coordinator who organizes the contributions. An excellent resource is available at www.sharethecare.org. In “Together,” my caregivers group, we identify the “quarterback,” the one calling “the plays.” Often this role shifts to different people as the needs of the patient changes. Also, find the best person for each task. For example, don’t assign someone to drive when they don’t knowthe area or are a terrible driver.
Q. Mywife is changing- physically and mentally. It is hard for us to interact like we used to. How can I internally resolve this? ~ “Helpless Husband”
A. We call this the “New Normal.” It will take time to adjust to these changes and better to recognize them than to pretend they are not there. She is selfconscious about them as well. Talk with her, find out how she feels now, reminisce about the good times you’ve had, and try to have quality time together.
Q. My friend won’t return my phone calls. I know she is dealing with her sister’s cancer. I don’t know how to truly be there for her or what to say. How can this situation not affect our friendship negatively? ~ “Friend at a loss”
A. A difficult situation requires different responses. Know that your friend wishes she could be as responsive to you as she used to be. In fact, it affects her more than you think. Your friendship will change, and how “present” you are for her during this time will be a key part of your ongoing friendship. Stay patient with the disengagement, but don’t stop reaching out. She might not respond but your efforts will make a positive difference in your friendship. Whether it be during this time, or after a death of someone’s loved one, know that it is fine to say “I am not sure how to be there for you and often don’t knowwhat to say. Please let me knowwhat you need.” A very good book for helping in this situation is “When Life Becomes Precious: The Essential Guide for Patients, Loved Ones, and Friends of Those Facing Serious Illnesses.” by Elise Needell Babcock.
Q. I’m frustrated and hurt because my sister seems disengaged frommy father’s diagnosis and won’t talk tome about it. How do I deal with her? ~ “Saddened Sibling”
A. Try to remember that everyone deals with illness differently. This is a time to band together, so try not to hold her coping mechanism of denial against her. Have a conversation about how you both will approach communicating about your mother’s diagnosis in the future, and try to compromise on something that you both feel comfortable with. It may be necessary to meet with a professional to facilitate communication. Put your energy into finding best ways for YOU to cope.
Q. Every time we have a test or scan coming up, the house gets really tense andwe all start to fight. Is it the appointments or what is going on? How can we prevent this from happening in the future? ~“Frustrated Family”
A. It is very natural to anticipate and worry about the outcome of a test or scan. To some degree, this anxiety will always be there. The patient and family always remember the first time they had the unanticipated bad news. Try to increase your “sturdiness” so that you are better able to cope with an upcoming test and results. As a family, recognize this time may be tense. Everyone may respond differently in this situation.
Q. It is really hard for me to let my family know the financial struggles we are in. I want to take care of it all, but I am tired. How do I manage the finances and communicate the reality with my family without causing them alarm or feeling embarrassed? I just want tomake sure they are taken care of. ~ “Protective Patient”
A. This is the time that you need your family to be “in the know.” Whether it is regarding your health or the finances, it is crucial that you communicate with them and ask for what you need. The best way to take care of yourself and the family is to bring them into your confidence, and in that way you can work out these issues together as a family. It doesn’t need to be something you take on alone. Remember that no one on the illness continuum can handle everything. Share a little bit at a time if that makes this transparency more manageable.
Q. One ofmy employees toldme they have cancer. I notice their mood swings from day to day and see when their current situation is affecting them. I want to be there for them but don’t want to pry. How can I keep our relationship professional, while still letting them know I care? ~ “Concerned Boss”
A. You are in a unique role. You have the opportunity to get the employee’s mind off of illness and focus on the future. Utilize your position by finding out what tasks and projects they enjoy. Know that it is okay and will be appreciated by your employee for you to ask how they are doing. Those living with cancer and others affected by a diagnosis (caregiver) feel cared for when this happens in a genuine way. If you ever see that they change the topic, then drop it. If they talk about it, engage with them. They may have insecurity about job performance or the future of the position, so give positive feedback when you can, as well.
Q. My mother just recently passed away from cancer. I’m having a hard time coping with it. My friends are trying to help but whatever they say doesn’t makeme feel better. ~ “Grieving and Searching”
A. Dealing with the loss of a loved one is never easy. Regardless of how it happens, one can never be truly prepared for it. Time won’t eliminate your hurt, but it may help you to heal a bit. Know that your friends might not know how to help, and truth be told, there won’t be things that they can do to “fix” your situation. Help them help you by letting them knowwhat you need at any given time. It may be a hug, space, a conversation, or activity of retreat. There is no right or wrong way to feel. We don’t “get over” loss, we learn how to adapt to it. Allow yourself to mourn and share your feelings with others, so that they best know how to comfort you. A grief support group is often helpful because those in the group understand your feelings.
Q. I became a caregiver six months ago, yet still face some of the same fears and issues that occurred shortly aftermy loved one’s diagnosis. I feel like I should have mastered this experience by now, and not get so affected. How do I stop kicking myself for feeling this way? ~ “Disappointed Caregiver”
A. You are doing the best you can, and the myriad of feelings continually reoccurs. Cancer is cyclic in how it affects people, and the different stages of cancer bring different emotional responses. It’s important to focus on who you are caring for and not put yourself down. The patient needs your strength, and criticizing yourself over your performance will wear you down. Self- care is very important for the caregiver because you have to be healthy to care for the patient. Call one of your positive friends or family members to give you a morale boost. Join a caregiver’s support group where others understand your feelings and will give you much needed support. Passages in Caregiving by Gail Sheehy and No Saints Around Here: A Caregiver’s Days by Susan Allen Toth are good resources.
Q. I have been in remission for about five years now. My immune system is terrible, andmy body has not fully recovered from the chemotherapy I had. Is this normal? Will I ever have the same energy that I used to? ~ “Curious Cancer Survivor”
A. The way treatment affects people, varies from individual to individual. Some people are able to return to their “normal” pre- cancer energy and feelings. However, in some cases, the effects of treatment might not ever go away. Every body reacts differently. It’s important to keep your spirits up and continue to spend your daily life as healthy as possible, to maximize how you feel every single day from this point forward. Talk to your oncologist and primary care physician about your concerns.
*Rhona S. Levine, Licensed Marriage and Family Therapist