Ask CancerCare

Every month, featured experts answer your questions about coping with cancer including specific answers to questions asked by caregivers.

For Any Cancer Diagnosis

    Q. My dad was diagnosed with cancer last month. He and my mother live in another state, and I have a family of my own so I can't be there to help them out on a daily basis. What can I do to support them from far away?

    A.

    It is difficult when we want to be there for our loved ones but can’t. We can feel helpless and “out of the loop.” However, there are ways to help, even from a distance. Here are some useful tips:

    Help your parents with medical matters. Make sure your parents communicate regularly with your father’s doctor and that all their questions and concerns are being addressed. Ask your parents to sign a consent form allowing the doctor to share information with you in case you need to intervene on their behalf. If your parents are uncomfortable asking questions, send them a copy of CancerCare’s publications, Communicating With Your Health Care Team and Doctor, Can We Talk?.

    Offer to help your parents with practical issues such as paying bills or making calls to their insurance company. Research information on resources and services for people with cancer. Volunteer to be the one to keep family and friends up-to-date on your dad’s condition, so that your parents don’t have to make so many calls and tell the story over and over. If your parents resist this kind of help, let them know that it would help you to help them. They are more likely to accept the assistance if they know it is helping you manage.

    Give them emotional support. They will welcome your regular telephone calls and cards that let them know you are thinking of them and share what’s going on in your life. You many also want to suggest that they find additional emotional support through individual counseling or support groups.

    Take care of yourself and your own family. People with cancer often worry about the impact their diagnosis has on their loved ones. You can ease your parents' concerns by seeking out the same kind of emotional and practical help you want for them. Having your own life under control and your own family cared for will allow you to better support your parents and their needs.

    For more information, the Family Caregiver Alliance offers a Handbook for Long-Distance Caregivers.

    Q. My grandmother has cancer. I'm worried about her, but even more so, I'm worried about my mom. She tries hard to be strong for everyone, but she is just so run down herself. She seems uncomfortable letting us be there for her. Any advice?

    A.

    Have you told your mom what you told me – that you want to be there for her and help care for your grandmother? Caregivers often feel they need to do everything themselves to make sure things get done as best as possible. This often leaves little room for others to help, and the caregiver ends up exhausted.

    Let your mother know that you are concerned and want to support her. Be clear about how you can help. Your mom might reject a general offer of help, but she might let you assist in specific ways, like driving your grandmother to an appointment or doing chores around the house.

    If she still resists, ask her to think about how good it makes her feel to do things for her own mom. Then let her know that you would like to experience that good feeling, too, by supporting her. This approach works well with people who are caregivers by nature and have trouble accepting help.

    Your mom may feel uncomfortable sharing with you her feelings about her mother’s illness. Still, you can support her emotionally by steering her toward helpful resources, including our publications, Caregiving for Your Loved One With Cancer and Caring Advice for Caregivers: How Can You Help Yourself?. We also offer telephone and online support groups for caregivers, and can help you find support groups in your area.

    Additional resources you might find helpful include:

    Remind your mom that one of the best things she can do for everyone involved is to take care of herself by eating and sleeping enough, guarding her own health (taking medications, exercising, getting to doctor’s appointments, etc.), and taking time for herself.

    Q. How can I support my cousin who has cancer without saying something stupid or wrong that would upset her more?

    A.

    I’ve heard many people with cancer say that their job is so much clearer than their loved ones'. A person with cancer is supposed to follow the medical advice for treatment and do what the doctor says. For loved ones, it’s sometimes hard to know how to be helpful.

    If you want to give your cousin emotional support but are concerned about broaching a sensitive subject, keep in mind that while it’s upsetting, your cousin knows she has cancer. It is her reality, and it’s okay to acknowledge that. Too often, patients are denied the opportunity to talk about their feelings and fears, either because loved ones don’t want to upset them or are uncomfortable hearing about it themselves. It’s okay to ask your cousin how she is doing, and to let her know you are available to listen if she needs to talk.

    If you are unsure what to say to your cousin, read our fact sheet, What Can I Say to a Newly Diagnosed Loved One?. Keep in mind that not every patient wants to discuss his or her feelings, so don’t push too hard. But those who do wish to talk will appreciate your willingness to listen. She may just need to vent, or you may be able to provide some practical information or resources to assist her.

    People with cancer who do express their feelings and fears, can also get tired of talking about their illness. Your cousin may appreciate conversation about “lighter” topics, such as favorite movies or T.V. shows, or that great book you or she just finished. While it may seem trivial to talk about these subjects, patients still want and need to feel “normal,” and to have a life that isn’t all about cancer, all the time.

    Q. I'd like more information about how to help a close friend being treated for cancer. I'm also wondering if a support group could help me, too?

    A.

    There are different ways to help support family and friends who are coping with cancer. I’d begin by reading our fact sheet, What Can I Say to a Newly Diagnosed Loved One?.

    Here are additional suggestions:

    Listen. We want to be optimistic and positive with people with cancer. However, when they express fear or sadness, simply responding that “everything will be fine” can sometimes make them feel that their concerns are not being heard. Listening to it all – the negative thoughts included — helps them to share their most important feelings.

    Be specific about the help you can offer. Telling a person with cancer to “Call me if I can help with anything” often puts him or her in a difficult position: Do you really mean anything? When is the right time to ask? It’s better to ask if you can help in a specific way. Perhaps you can research medical information about his or her cancer, or take on necessary tasks like driving him or her to treatment, cooking meals or handling other household chores.

    Support your loved one’s treatment decisions. We all have our own opinions, but ultimately it is up to the person with cancer to decide what is best for him or her. Offer your own opinion or advice only when asked, and respect your loved one’s right to decide the course of his or her life in the way that accords with his or her values.

    In support groups for caregivers, it’s possible you’ll find a lot more specific information about how and where people have found medical care, tips for managing the side effects of treatment, and suggestions for finding good resources. A caregiver group can also give you a place to talk about the emotional challenges of caring for someone while still caring for yourself. As a caregiver, there may be things that you feel you just can’t share with your loved one, like your own fears and concerns. Sometimes, just knowing that you’re not the only one having difficulty can relieve some of the stress.

    For more information about caregiving in general, the National Alliance for Caregiving offers a wide range of educational materials. The Caregiver Resource Directory is also a great resource.

    Q. Three weeks before the holidays, my father was diagnosed with advanced cancer. Hospice care has started but I find it isn’t enough and other family members who live in town really don’t offer help. Some days seem too overwhelming - how do I focus on everyday activities?

    A.

    Depending on your particular family and faith traditions, there can be a lot of expectations at this time of year, many of them focused around finding joy in the season. When illness or grief interrupts those expectations, it can be difficult to manage.

    Be kind to yourself during this time, and consider what is truly important to you now. That can require you to adjust your expectations about everything from shopping to housecleaning. Make a list of those things that you truly enjoy and decide which of those traditions you would like to retain. Give yourself permission to “pass“ on those traditions that generate stress or involve a good amount of effort

    This may also be a time that you can ask others to provide additional support. This can include a conversation with the hospice social worker concerning what other services may be available. You might use the services of a hospice volunteer or have the ability to engage additional home care supports on your own.

    While it would be ideal for family and friends to volunteer their help, it may be necessary to ask them. Consider whether there are specific tasks that you can ask others to perform which can provide you a break from the day-to-day demands of care giving. Is there someone who can stay for a few hours, offer to go to the market, or bring your father to a scheduled appointment? Many times family and friends would like to help but are at a loss as to how to be helpful without being disruptive to routines.

    An additional resource you might find helpful is our Connect Education Workshop, Coping with a Loved One’s Cancer During the Holidays.

    Q. I'm wondering if there are any good resources out there that would help me know what to expect as I'm taking care of my mom who has advanced cancer.

    A.

    Caring for a family member or loved one with cancer can be a full-time job. There are lots of unknowns and by asking for help, you have taken the first step in helping your mother. Luckily, there are a variety of resources available to assist you with caring for your mother. I encourage you to start by taking care of yourself so that you can be as prepared as possible to assist your mother. You will find suggestions in our publications, “Caring Advice for Caregivers: How Can You Help Yourself?” and Caregiving for Your Loved One With Cancer.

    Our free Connect® Education Workshops provide helpful, practical information:

    Family Caregiver Alliance is an organization that focuses solely on the needs of caregivers. They offer many resources on their website including the section, Caregiving Info & Advice, various publications and fact sheets, and educational webinars such as Caregiving 101: Exploring the Complexities of Family Caregivingiving.

    The Caregiver Resource Directory includes chapters about symptom management at home and the goals of care in progressive illness.

    Another helpful resource is the American Society of Clinical Oncology’s publication, Advanced Cancer Care Planning: What Patients and Families Need to Know About Their Choices When Facing a Serious Illness, which may be downloaded from their website or ordered free of charge.

    Caregivers have their own unique set of needs, and although you do not have cancer, you are living with the disease every day. You may find speaking with a counselor or joining a support group for caregivers helpful. CancerCare offers counseling as well as online and telephone support groups specifically for caregivers. You may also want to register for our upcoming Connect Education Workshop, Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally.

    Q. My husband was diagnosed with cancer in 2009. He finished treatment and is cancer free, but he continues to act like he still has cancer and is dwelling on it instead of getting on with his life. Is this normal?

    A.

    When a person with cancer has completed treatment and shifts from life as a patient to life as a survivor, the transition period can bring up mixed feelings and often takes time to process. Each person is unique, and it is common to have an adjustment period. Life after cancer is often referred to as the “new normal,” which can be challenging for caregivers.

    As you know, cancer affects not only the person with cancer, but also caregivers who must adapt after their loved ones complete treatment. CancerCare offers helpful tools that address survivorship issues, including our publication, After Treatment Ends: Tools for the Adult Cancer Survivor.

    CancerCare’s Connect Education Workshops, which are accessible both by phone and online, offer a wealth of information about coping with survivorship issues. Past workshops are available through our website and you and your husband may find the following workshops helpful:

    Stress Management for Caregivers: Taking Care of Yourself Physically and Emotionally is an upcoming workshop (June 14, 2011) that you can register for on our website.

    Q. Do you know of any organization that would help me pay someone who takes care of me? She is not related but takes me to all my appointments, cleans my house, does my shopping and anything that needs done.

    A.

    Unfortunately the financial impact of caregiving, whether by a relative, friend, or hired help, is under recognized. The type of assistance available for caregivers may depend on where you live, the medical need for services, and your own financial situation. You could contact your state Health and Human Services Department to find out if there is a state specific program to assist with the cost associated with caregiving.

    Additionally, CancerCare offers limited financial assistance for cancer-related costs, including home care and transportation for individuals who qualify. You can call us at 800-813-HOPE (4673) and speak with a CancerCare professional oncology social worker.

For Brain Cancer

    Q. My cousin found out that his 4-year-old daughter has brain cancer and it could be terminal. What can I do or say to help him (and his family) through this difficult time?

    A.

    It can be hard to know what exactly to say or do when a loved one is facing cancer, especially when you are supporting both the parents and a child through a difficult time.

    What can I say? Parenting a child with a serious illness can be a painful and isolating experience, so being available to listen, talk, and giving your cousin the opportunity to discuss his feelings and fears, if he wants to, can be helpful. Giving him time to talk about everyday things can be just as helpful too. Your cousin will probably best know the emotional and developmental needs of his daughter, so it’s okay to ask him how best to support her through this. CancerCare’s fact sheet “What Can I Say to a Newly Diagnosed Loved One?” offers additional tips for being supportive to a loved one facing cancer.

    What can I do? Ask your cousin what would be most helpful to him during this time. If the family has many practical caregiving needs, they may appreciate help from family and friends. My Cancer Circle™ is an online resource where you can create a community for your cousin’s family and organize support.

    Care for yourself. While your cousin is facing difficult times, it is important that you recognize how an illness in the family may be affecting you too. Make sure that you take time to care for yourself, so you can be a stronger source of support for the family.

    Get informed. For more information on brain tumors and what to expect during treatment, both the American Brain Tumor Association and National Brain Tumor Society offer invaluable information. The National Children’s Cancer Society is also a good resource for children facing cancer and their families

For Breast Cancer

    Q. My mother was recently diagnosed with metastatic breast cancer and about 2 years ago, began to show signs of dementia. Can you refer me to resources regarding providing care to patients with dementia and cancer? My elderly father is the primary caregiver and I am an out of town caregiver.

    A.

    Dealing with a dual diagnosis of dementia and cancer brings many challenges regarding care. Start by assessing both you and your father’s needs as caregivers and the needs of your mother. What do you and your family need help with? Areas to consider are personal care, household care, health care, and emotional care. It is also important to discuss with your mother what her preferences for care are as much as she is able. If she is not able to discuss this, you and your father will want to consider what she would feel comfortable with.

    The next step is to find support. State and federal agencies are good starting points for information about local programs and services. You can find your local office through the Department of Health and Human Service’s Eldercare Locator. The Family Caregiver Alliance, also has a wealth of information on caregiver support, as well as a state by state listing of services available. It is important to remember throughout your mother’s care that support is important not only for patients, but also for caregivers. You and your father’s needs must be met, so you don’t become overwhelmed and exhausted. To learn about ways to take care of yourself, please read, Caregiving for Your Loved One With Cancer, and So Far Away: Twenty Questions and Answers About Long-Distance Caregiving.

For Colorectal Cancer
For Leukemia

    Q. One of my best friends has had a bone marrow transplant for leukemia and will hopefully be getting out of the hospital soon. I'm looking for a website where people can sign up to sit with her over the next few months and take her to doctor appointments. Do you have any suggestions?

    A.

    The transition home after a bone marrow transplant can be a time of great readjustment. There may be many outpatient medical visits and it will likely take time for the patient to return to normal levels of activity. It can be helpful during this time to organize a support team to assist with the many practical aspects of returning home. However, friends and family may not be aware of the needs of a loved one recovering from a transplant or know how best to help. Luckily there are resources that can help loved ones organize help and support for an individual recovering from a bone marrow transplant, or any cancer treatment.

    My Cancer Circle™ is a free online private support community for caregivers of people facing cancer. At mycancercircle.net you can easily create a community and coordinate volunteer activities that will meet your friend’s needs as she recovers from her bone marrow transplant, such as preparing meals or arranging transportation to medical appointments. By creating a support community you can inform friends of what tasks need to be done and friends can sign up for the activities they can best assist with. My Cancer Circle is also a great way to quickly and easily keep your online support community informed of recovery updates, milestones reached, photos, or other information.

    You can also find additional information about recovering from a bone marrow transplant through The National Marrow Donor Program and The Bone Marrow Foundation.

For Lung Cancer

    Q. My 68-year-old husband was diagnosed with lung cancer in 2004, had radiation and chemo, and is currently in remission. Since ending his treatment, his personality has changed drastically and he directs his anger towards me. Can chemo affect a person mentally?

    A.

    Chemotherapy can affect a person’s mood, as can other medications such as steroids. It is important that you and your husband inform his doctor of changes in his mood to rule out any medical causes. The change in his personality may also be a sign that he is still struggling emotionally with his diagnosis and treatment. Cancer can be overwhelming and bring up many feelings from anxiety to anger to sadness. As your husband’s primary caregiver, those feelings may be directed towards you since you are the one he is closest to and trusts. If you haven’t done so already, letting your husband know how his feelings and behavior affect you is important. Seeking couple’s counseling is also a good idea if you are having difficulties communicating with each other.

    The end of treatment often can lead to many strong and conflicting feelings. When a person is first diagnosed with cancer, he/she is often focused on learning about the diagnosis and getting through treatment. This can delay the emotional impact of cancer and feelings may come up once treatment ends, as there is more time to think about what has happened. For more information on coping post-treatment read, After Treatment Ends: Tools for the Adult Cancer Survivor.

For Pancreatic Cancer

    Q. My son's partner was recently diagnosed with pancreatic cancer and the prognosis is not good. He is very much part of our family. Our son looks very stressed and sad and sometimes is irritable and short with me, which is very unlike him. We have talked to him about getting some help but he says no one will understand because his partner is a man. What can we do?

    A.

    Your son and son-in-law are both very fortunate to have your support. People in even the most devoted and long-standing gay relationships may not get the same degree of social recognition and support as straight couples. Coping with a loved one’s cancer diagnosis can be a difficult experience and is compounded when one is the primary caregiver, as it sounds like your son may be. With much of the focus on the person with cancer, the needs of caregivers can be unintentionally overlooked and this dynamic is even more likely to be present in gay relationships. Your son is having a very normal reaction to a difficult circumstance, but I feel that the emotional changes you describe could increase without professional support. It is not unusual for gay people to be concerned about being rejected or misunderstood, but there are ways to help your son connect to mental health professionals who are sensitive and open. You can contact us and speak with an oncology social worker for support and referrals to local resources.

    Another point gay partners need to consider when faced with a cancer is ensuring that certain rights are addressed and attended to proactively. Gay partners have encountered barriers to areas that others may take for granted such as hospital visitations and medical decisions. Some states address concerns such as these by recognizing domestic partnerships, but there are other measures that can provide certain protections such as having your son-in-law prepare a health care proxy, living will, or power of attorney. These documents will help facilitate communication with health care providers. To locate free legal services to help with these protections, please visit http://www.lawhelp.org.

    Although you write out of concern for your son, a cancer diagnosis impacts the entire family and I hope you won’t ignore your own need for support. CancerCare services include telephone and online support groups for people with cancer and their loved ones and we also offer a number of publications.

Additional Resources

Organizations