Caring for a Loved One With Cancer with Betty Ferrell, PhD, FAAN, Chat Transcript
Wednesday, May 10, 2006 2:00 - 3:00 PM ET

Moderator: On behalf of the American Society of Clinical Oncology (ASCO), welcome to the Cancer.Net Ask the ASCO Expert chat on Caring for a Loved One With Cancer, a live question-and-answer session hosted by Betty Ferrell, PhD, FAAN.

During this hour, Dr. Ferrell will answer as many questions as possible. Due to an increasing number of chat participants and number of questions submitted for each chat event, time simply does not allow us to address all of your questions, and we encourage you to consult your doctor and cancer care team.

Some questions may be adapted so that Dr. Ferrell's answers can help as many people as possible.

Dr. Ferrell will take questions from 2:00 - 3:00 PM ET. As you prepare your questions, please keep in mind that Dr. Ferrell is unable to give individual medical advice in this setting, nor is she able to address questions that include information specific to one person's medical profile.

The information presented here is for informational and educational purposes only and is not intended to substitute the professional medical advice or treatment recommendations provided by your doctor.

This forum is neither intended nor appropriate to serve as a means of obtaining a second opinion on cancer diagnosis or treatment. In response to questions about specific drugs, Dr. Ferrell's comments will focus only on the state of current research and clinical trials.

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Good afternoon and welcome. Thank you for joining us. Dr. Ferrell will now begin taking questions.

Betty Ferrell, PhD, FAAN, is a Research Scientist at the City of Hope National Medical Center. She is also a Fellow of the American Academy of Nursing and has more than 270 publications in peer-reviewed journals and texts.

Dr. Ferrell is Principal Investigator of a study funded by the American Cancer Society (ACS) on "Palliative Surgery," and is also Principal Investigator of the End-of-Life Nursing Education Consortium (ELNEC) project funded by the National Cancer Institute (NCI), and several other funded projects related to end-of-life care in cancer centers and quality-of-life issues in cancer survivors.

She has authored five books: Cancer Pain Management (1995), a text on Suffering (1995), Pain in the Elderly (1996), Textbook of Palliative Nursing Care (2001), and the second edition of the Textbook of Palliative Nursing Care (2006) published by Oxford University Press.

Dr. Ferrell, thank you for taking the time to join us today.

Guest119: I am about to start interviewing caregivers for my elderly mother. What questions should I ask and what qualifications should I look for?

Dr. Ferrell: It's very wise of you to give this careful consideration since your burden as a family caregiver can be greatly relieved by having a competent caregiver. It would be very important for you to determine the caregiver's past experience with patients like your mother. Patients' needs vary tremendously.

I would also ask for references from previous families and take the time to check those out carefully. The qualifications will depend on your mother's exact need. For example, if your mother takes several medications or requires treatment, you might need a more highly skilled person with nursing expertise, whereas if your mother's needs are more for safety and companionship, you would be looking for someone with professional skills who could offer that care.

Guest34: My mother recently found out her cancer has returned, and lately I have been assisting her with daily tasks, such as cooking, cleaning, and her personal hygiene. We have had a very challenging relationship in the past. How can I keep our different outlooks on life and ways of doing things from getting in the way of my caregiving for her?

Dr. Ferrell: We know from extensive work in this area that past relationships, both good and bad aspects, continue and become more intense during times of illness. It's very commendable that you are taking time to be aware of the strain and challenges in your relationship that might pose concern at this important phase of life.

I would encourage you to think about the goals of your mother's care and to also think about what you can uniquely provide versus what you might ask others to provide. For many people, however, caregiving can provide positive opportunities to mend relationships, create positive memories, and enhance communication.

You will be the best support for your mother if you are supported, so I would also encourage you to reach out to others who can help you at this time.

Tim: Eight months ago I moved in with my mother to care for her. I go out from time-to-time, but still find my new life very lonely. What can I do to cope better?

Dr. Ferrell: As caring people, family caregivers often assume that they are obligated to 24-hour-a-day selfless care. Caregivers often voice feelings of isolation and frustration, even in the best of circumstances.

One way to think of this situation is to stop and ask yourself how you might advise a friend who was in a similar circumstance. We often have very high expectations of ourselves, whereas in advising a friend, we would know that that person needs time for themselves and the support of others.

Consistently, research in this field has documented that family caregivers who take time for themselves, accept the support of others, arrange for time away, and maintain their own physical and psychological health are by far more helpful to their loved ones.

We've received comments similar to yours so far in this chat, and clearly, these are very common feelings.

Nicole: My husband complains to me about pain all the time. When we go to the doctor, however, he says he feels "pretty good." What can I do to help him get adequate pain management? I think it would greatly improve his quality of life.

Dr. Ferrell: Pain management is one of the major areas of my work. It is very common to patients like your husband to deny being in pain when visiting the clinic. You are so right in believing that relief of your husband's pain is a critical aspect of his quality of life.

You should continue to be a strong advocate to ensure that he does receive the pain management, because most every aspect of his life, including his function, sleep, enjoyment, and mood will be greatly affected by his pain.

One starting strategy would be to keep a log at home of your husband's pain by recording how much pain he's having by using the scale of zero equals no pain and a 10 equaling the most pain.

Quantifying the pain by using the zero to 10 scale and documenting his use of medication can provide objective information when you go in to see the doctor. It also is helpful to express to the doctor what you see happening to your husband because of the pain. For example, if his sleep is disturbed or his activity is being limited.

Please keep advocating for your husband's pain management, as this is one of the most important parts of family caregiving.

Pattie: My father lives with my husband and I. We are retired and are supposed to be enjoying this time in our life. My husband is growing more and more resentful about the time I take to care for my Dad. What can I do? My loyalties to both my Dad and husband are being tested.

Dr. Ferrell: With our aging population and the chronic nature of cancer and other illnesses, your story is very common. As people live much longer and as chronic illnesses last many years, the work of caregiving becomes a long-term commitment that commonly interferes with home life and relationships.

I would encourage you to continue communicating closely with your husband to work out an agreeable plan that will provide you and your husband with private time, as well as your feeling good about the care you are providing your father.

Even short times away and arranging for outside caregiving can help in this ongoing, stressful situation.

Guest37: My neighbor has breast cancer. Her treatments are going well, but leave her extremely tired. She lives alone and seems to be having trouble with basic care - eating right, bathing, dressing, etc. I try to check on her at least once a day, but work and three small children make it difficult for me to devote enough time to help. What should I do?

Dr. Ferrell: It's very kind of you to reach out to your neighbor. Most of us are so overwhelmed with our immediate family, and yet now changes in society have meant that many people facing cancer do not family available, and thus depend on neighbors and friends.

It might be helpful if you could try to mobilize other neighbors or friends, rather than taking on all of the support yourself. Often, patients are reluctant to ask for help, but a neighbor or friend can help orchestrate a schedule involving several people who each can provide some assistance without being overwhelmed.

Moderator: Transcripts of today's chat will be available May 11, 2006, on Cancer.Net by 12:00 PM ET. More information about receiving transcripts will be provided at the end of the chat.

Guest25: Early this year, my nine-year-old son was diagnosed with cancer. I left my job to stay at home and care for him. The financial strain is tremendous. Are there any organizations that could help us financially?

Dr. Ferrell: Cancer and other serious illnesses are financially devastating for many people. The national problems with health care and our challenging economy make this even more true today. Financial support varies tremendously in different communities. Therefore, your best resources are usually local.

One of the key resources is the social work department in the hospital where your son is being treated. Social workers are often the best resources for understanding reimbursement for your child's health care as well as other resources that may assist in your family's needs.

There is an article on Cancer.Net about financial resourcesthat may also help.

Bobby: I am my Dad's primary caregiver. I am not satisfied with his healthcare. Where can I find an advocate to help us assure he is getting the best care?

Dr. Ferrell: It is very important that patients and family members have confidence and good communication with their health-care providers. I encourage patients and families to communicate directly with their current providers if they have unmet needs, and to make changes in their care if needed as often conflicts or concerns such as these continue and become worse as the disease progresses.

If possible, I would encourage you to contact the hospital's social work department where your father is being treated and obtain suggestions for other options of care. Again, taking a proactive stance and resolving problems before they become major obstacles to care is important.

Guest56: Is there training for caregiving? In the next few months, I may take on the responsibility of caring for my mother.

Dr. Ferrell: Unfortunately, there is very little preparation for the very complex role of family caregiver. People have often commented that just as we have classes in childbirth and parenting, we should offer classes to train and support family caregivers as they take on the challenge of caregiving during an illness.

A few community colleges and organizations offer classes for family caregivers to assist in basic skills, such as bathing, assisting the patient with walking, and managing medications. It will be helpful if you can communicate with the physician to anticipate exactly what kind of care your mother may need.

Also, some people who are able may arrange for a few visits from a home care agency so that a nurse or nursing assistant can teach the caregiver the basic skills needed. Again, hospital social workers can often be a resource and occupational therapists can provide good advice about needed equipment and modifications in the home to prepare for caregiving.

Lois: My mother is in the hospital. Overall, I am pleased with her care, but there are things I want to do to make her more comfortable. Should I speak with the oncologist or nurses about this?

Dr. Ferrell: Some people with cancer experience pain, and unfortunately, a number of other physical and psychological symptoms. Problems such as nausea, fatigue, anxiety, and many others are unfortunately part of cancer and can impact the quality of life of both patients and family members significantly.

An important role of the family member is to ensure that the patient's needs are known. We also know that it is much better to prevent symptoms or treat them early, rather than to wait until they become severe or uncontrolled. I would strongly encourage you to talk with your loved one and be sure that you both are committed to reporting any symptoms and expecting that they will be relieved.

Michelle: I had been my father's caregiver for three years. He passed away four months ago and I am overwhelmed with guilt that I could have done more for him. What can I do to let go of this?

Dr. Ferrell: The feelings you express are very common, and most family members have a sense of regret and a feeling that there was more they could have done. In reality, most family caregivers are doing a heroic job and providing the best care humanly possible, given the incredible burden of caring for someone who is seriously ill.

Again, I would encourage you to think about your experience as if you were listening to a friend describe caring for his or her own father. We often have very high expectations of ourselves and need to recognize that we generally do the best we can at the time.

It's important for you to share your feelings and talk with others. People caring for a loved one are generally so busy with that care that it is not until a patient dies that they have the opportunity to process their own thoughts and experiences.

You may also find it helpful to participate in a bereavement support group. These are offered through community hospice programs and can be a helpful way for you to share your feelings with others who have been family caregivers.

Guest91: I have a hard time dealing with the depression my husband is experiencing. I don't know how to make him feel better.

Dr. Ferrell: Depression is a very common and understandable part of having a life-threatening illness. We should think about depression as a normal response and that failure to treat depression will greatly impact quality of life.

I would encourage you to talk with your husband about the importance of addressing the depression, as it likely is affecting other dimensions of life, such as sleep, appetite, activity, and anxiety. Treatment for depression includes medication and counseling and other support. There are many new and very effective medications available for depression.

Most importantly, you should be commended for talking to your husband about this problem and helping him express his feelings.

Tina: It is getting to the point that I can no longer adequately care for my father in my home. What can I do?

Dr. Ferrell: As caring family members, we often attempt to provide care at home knowing that this provides the best comfort and best environment for anyone who is ill. However, it is not uncommon for families to recognize that as care persists over months or years, or as needs become more complex with advancing illness, other arrangements must be made.

It is best to address the options early, rather than to wait for a crisis and have limited choices. I would encourage you to talk with a social worker or other health-care provider to be informed about what might be available to you in the way of care in other settings or support for you at home.

Guest8: My father, who is 76, has prostate cancer. Both he and my mother are still pretty active, but I get the sense that they could use some additional care. How can I help them accept the need for a caregiver without having them feel like they are losing their independence?

Dr. Ferrell: Most people, particularly older adults, are fiercely independent and resist having outside help. Bringing in outside caregivers can also mean that the illness is progressing and thus, patients and families often delay accepting that care even when it is long overdue.

One approach would be to try to give your parents as much control as possible over the arrangements and to suggest starting with a small amount of help for a limited time. For example, getting them to agree to have someone come in one day a week or a few hours could be a first step.

My experience has often been that when families see the benefit and become comfortable with a small amount of care they then can become open to expanding the care when the need increases.

T: Are there support groups for caregivers?

Dr. Ferrell: Support groups are extremely helpful for many people. Many hospitals offer in-person support groups, but there are other options, such as web-based or telephone services. The organization CancerCare is a great resource and has many activities providing support for family caregivers and patients. Participating in support groups is an opportunity to express feelings and to network with others who are going through similar experiences.

This question and all of the questions we've heard today in the chat remind us that the best way to care for someone you love with cancer is to care for yourself.

Moderator: The chat is now ending. Thank you for your thoughtful questions.

We hope this discussion has been valuable, and we regret not being able to answer every question. We want to thank Dr. Ferrell for lending us her time and expertise.

TRANSCRIPTS: The full text of today's chat will be available on Cancer.Net (www.cancer.net) May 11, 2006, by 12:00 PM ET. To receive a copy of the transcript by e-mail, please send a message to contactus@cancer.net.

SAVE THE DATE: Please join Cancer.Net for a live chat about Top Advances in Cancer Research: News From ASCO's Annual Meeting on June 6, 2006, from 1:00 - 2:00 PM ET.

The featured expert is Roy Herbst, MD, PhD, of M. D. Anderson Cancer Center, The University of Texas.

June Q&A: In June 2006, visit Cancer.Net for a question-and-answer (Q&A) forum on How to Cope with Common Side Effects of Cancer Treatment.

The featured experts are Jamie Von Roenn, MD, of the Robert H. Lurie Comprehensive Cancer Center at Northwestern University; Thomas Smith, MD, of Virginia Commonwealth University Health System; Charles Loprinzi, MD, of the Mayo Clinic; and Georgia Decker, MS, RN, CS-ANP, of Integrative Care and the Oncology Nursing Society.