Caregiving

“If you have a friend or family member with breast cancer, try not to look at her with ‘sad eyes.’ Treat her like you always did; just show a little extra love.”

– Hoda Kotb

From the moment of diagnosis to remission, breast cancer affects not only the patient, but their entire support system. Friends and family become caregivers, and at times those roles can become overwhelming. This section offers introductory and supplementary resources, links, helpful tools and topics for caregivers supporting a loved one who is battling breast cancer.

Helpful Tips for Caregivers

Knowing what to say or how to act with a loved one who has breast cancer is challenging – it is normal to feel unsure. Here are some tips that you may find helpful during your loved one’s breast cancer journey (via Willow Breast and Hereditary Cancer Support):

  • Be a good listener and let them direct the conversation – let them decide if they want to talk about their cancer.
  • Respect their privacy. Don’t pry for details – let them share as much about their situation as they would like to.
  • Be honest and open in admitting your own feeling and concerns. It’s OK to tell them that you are not sure what to say or do.
  • Assure them that you are there for them and would like to help however you can.
  • Be specific about ways you can help and then follow through with your offer.
  • If treatment is over, that doesn’t necessarily mean that they no longer need your support. Continue to reach out and offer your support.
  • Make them laugh. Without sounding cliché, laughter is sometimes the best medicine.
  • Don`t do it all by yourself. Offering practical and timely help to your loved one is easier when you have some assistance. Anyone who tries to shoulder the burden on their owner is bound to burn out. Maybe the patient has friends, extended family, or neighbours who would be interested in making a helpful contribution during your loved one`s journey.
  • Join an online forum or support group for breast cancer caregivers to learn more helpful tips. Support from others who are on the same journey can be very helpful.

Tips for Practical Help (via Willow Breast and Hereditary Cancer Support)

Practical help is essential during your loved one’s journey. Taking on tasks will ease the patient’s burden of day-to-day activities. Some specific tasks include:

  • Take your loved one to medical appointments and offer to take notes of what the doctor has to say
  • If the patients is having chemotherapy or radiation, drive and accompany them to a treatment session
  • Pick up their kids from school
  • Look after the kids for an evening or weekend
  • Walk the dog
  • Do laundry
  • Clean the house
  • Get groceries
  • Organize a group of friends to take turns cooking or performing other tasks
  • Bring meals in disposable dishes that do not need to be returned and can be frozen if needed. Ask them what their favorite meals are and if there are any foods that may not be able tolerable during their treatments
  • Bring some feel-good DVDs to watch or books to read

(via Willow Breast and Hereditary Cancer Support)

The best 6 ways to support YOURSELF when a loved one has cancer (via breastcancer.org):

1. Feed your body. Your body is essentially your caregiving machine. It’s important to keep it maintained and efficient by eating nutritional foods regularly, exercising consistently to produce energy and to also lessen the stress of caregiving, and to ensure you’re getting six to eight hours of sleep every night.

2. Feed your mind. Your state of mind is directly related to your energy level and mood. It is important to keep your mind in the present, because thinking about what tomorrow might bring may bring anxiety and depression. Some caregivers find it’s useful to use a journal as a soothing process to empty your mind of stress or to speak to other caregivers who are experiencing the same chaos. There are many online support groups you can use along your journey.

3. Feed your soul. Spiritual substance is often acquired when a caregiver is going through breast cancer with a loved one. These people are often on a quest to make some sense of this time of their lives, and ultimately the journey of life itself. It is important to pray and meditate – these spiritual tools may rearrange some priorities – but you will also gain some understanding.

4. Preserve your energy. Going through breast cancer with a loved one can be physically and emotionally exhausting, so it’s important to preserve ever bit of energy you have. By feeding your body, mind and soul, you will in turn gain and preserve energy. The patient needs every bit of energy and positivity you have when you are with them.

5. Evaluate your priorities. Unfortunately, you are not superman or superwoman. It is impossible to take care of the patient 100 per cent of the time. Be realistic – patients are capable of comp leting some tasks but set reasonable limits with your loved one. If possible, delegate some responsibilities to other loved ones of your patient. If need be, recruit friends or family to help with some responsibilities. This will help you be the best caregiver you can be.

6. Find your strength. You’re a strong person and you’re a part of your loved one’s journey for a reason. When you’re feeling weak, remember you’re a courageous, capable person.

Read the full article here.

Coping Checklist for Caregivers (via American Cancer Society)

? I have a supportive family around me.

? I pursue a hobby or project for work, church, or my community.

? I take part in a social or activity group more than once a month.

? I am within 10 pounds of my ideal body weight for my height and bone structure.

? I use relaxation methods such as meditation, yoga, or progressive muscle relaxation at least five times a week.

? During an average week I get at least 150 minutes of moderate exercise (such as walking or yoga) or 75 minutes of vigorous activity (such as jogging or basketball).

? I eat a well-balanced, wholesome meal 2 or 3 times during an average day. (A balanced meal is low in fat and high in vegetables, fruits and whole-grain foods.)

? I do something enjoyable “just for me” at least once during an average week.

? I have a place where I can go to relax or be by myself.

? I set priorities and manage my time every day (such as deciding what tasks are most important, how much I can and can’t do, and by getting help when needed).

Caregiver Self-Assessment Questionnaire (via American Cancer Society)

How are YOU?

Caregivers are often so concerned with caring for their relative’s needs that they lose sight of their own well-being. Please take just a moment to answer the following questions. Once you have answered the questions, go to the bottom of the page to do a self-evaluation.

During the past week or so, I have…

1. Had trouble keeping my mind on what I was doing………. ? Yes ? No

2. Felt that I couldn’t leave my relative alone……….. ? Yes ? No

3. Had difficulty making decisions……….. ? Yes ? No

4. Felt completely overwhelmed……….. ? Yes ? No

5. Felt useful and needed……….. ? Yes ? No

6. Felt lonely………… ? Yes ? No

7. Been upset that my relative has changed so much from his/her former self……. ? Yes ? No

8. Felt a loss of privacy and/or personal time……….. ? Yes ? No

9. Been edgy or irritable………… ? Yes ? No

10. Had sleep disturbed because of caring for my relative………… ? Yes ? No

11. Had a crying spell(s)…………. ? Yes ? No

12. Felt strained between work and family responsibilities……….. ? Yes ? No

13. Had back pain……….. ? Yes ? No

14. Felt ill (headaches, stomach problems or common cold)………… ? Yes ? No

15. Been satisfied with the support my family has given me…………. ? Yes ? No

16. Found my relative’s living situation to be inconvenient or a barrier to care…… ? Yes ? No

17. On a scale of 1 to 10, with 1 being “not stressful” to 10 being “extremely stressful,” please rate your current level of stress. _______

18. On a scale of 1 to 10, with 1 being “very healthy” to 10 being “very ill,” please rate your current health compared to what it was this time last year. _______

Comments:

(Please feel free to comment or provide feedback if you plan to share this with a health care professional.)

_____________________________________________________________________________

_____________________________________________________________________________

_____________________________________________________________________________

_____________________________________________________________________________

Self-evaluation

To determine your score

1. Count up all your “Yes” responses EXCEPT do not count # 5 or 15 yet.

2. Now, look at Questions #5 and 15. If you responded “Yes” to these questions, do NOT count these with your “Yes” count. If you responded “No” to either or both questions, add these to your “Yes” count. (For example, if you had 4 “Yes” answers on the rest of the questions, and you answered “No” to question #5 and “No” to question #15, your total score would be 6.)

To interpret your response

Chances are that you are experiencing a high degree of distress:

  • If you answered “Yes” to either or both questions 4 and 11; or
  • If your total “Yes” score = 10 or more; or
  • If your score on question 17 is 6 or higher; or
  • If your score on question 18 is 6 or higher

Source: American Medical Association. All Rights Reserved

If you are having a high degree of distress

  • Consider seeing a doctor for a check-up for yourself
  • Look for some relief from caregiving (Talk to the patient’s doctor, social worker, or cancer care team about resources available in your community.)
  • Consider joining a support group for caregivers. Online and phone support is available
  • Call the American Cancer Society at 1-800-227-2345 for more information and referrals

If your distress level is low

It isn’t unusual for caregivers to have some of these problems for a short time. But they may mean that you’re at risk for higher levels of distress. When caregivers don’t attend to their own needs and allow other pressures to take over, they may lose the ability to continue to care for their loved one. Part of caring for someone else is caring for yourself.

Now what?

Asking for help can be a good thing. You may need more than one kind of help to manage caring for your loved one. See a doctor if you have serious distress, or if you can’t accomplish your day-to-day activities. We also encourage you to print out this checklist and talk it over with a doctor, nurse, social worker, or other professional on your loved one’s cancer care team.

A Journey for Two: Resources for Caregivers

When a spouse or partner is diagnosed with breast cancer, undertaking the role of caregiver can be a stressful and overwhelming role to fulfill. Even more, caregiving means taking on many new responsibilities from emotional support to managing medical appointments. Here are resources to guide you through caring for a loved one with breast cancer.

Cancer Chat Canada: Caregivers CancerChatCanada has online support groups for people who are caring for a family member, friend, or loved one with cancer. Caregivers are able to discuss important concerns, give and receive encouragement and support, and express feelings.

Women who partner with women A section that discusses the issues and concerns of lesbians, bisexual women and transgender individuals as relating to breast cancer. The resources are more relevant to women situated in North Carolina and the U.S. but, nonetheless, are helpful for women in Canada.

Men against breast cancer – Men Against Breast Cancer (MABC) is the first and only national 501 (c)(3) not for profit organization designed to provide targeted support services that educate and empower men to be effective caregivers when cancer strikes. Since our founding in 1999, MABC has mobilized men across America, including under-served populations, to be active participants in the fight against breast cancer. Our philosophy is to leverage the support of the whole family to help the patient, with special emphasis on the important role of men in caring for the women they love.

The breast cancer resource directory of North Carolina – The Breast Cancer Resource Directory of North Carolina offers an extensive article on family, partner and caregiver issues as well as an extensive list of resources for spouses and family members.

Defining your role as a breast cancer caregiver An in-depth article which explores the various aspects of being a breast cancer caregiver; it presents caregiving as a dynamic and ever-changing journey that requires self-care for both the patient and the caregiver.

In sickness and in health: The breast cancer husband A question and answer format article in which author Marc Silver addresses and provides answers for some of the problems that men encounter when caring for their partner with breast cancer.

Books

Breast Cancer Husband: How to Help your Wife and yourself through Diagnosis and Treatment This guide written by Marc Silver includes medical information, practical tips, psychological insight, and coping strategies to help men help the women they love through this trying time.

Rodale Books (2004)

Cancer for Two: An inspiring True Story & Guide for Cancer Patients and their Partners by Dave Balch

This book provides guidance to partners of women with breast cancer, including:

  • How to keep the patient feeling good about herself
  • The importance of the caregiver’s role
  • An amazing attitude in the face of serious illness
  • How to reduce the fear and stress
  • A simple, effective, fun and FREE way to keep friends and relatives informed without spending hours on the phone
  • How to find humor in serious situations
  • 9 good things about having no hair

A Few Good People, Inc. (2004)

Helping your mate face breast cancer: Tips for becoming an effective support person for the one you love during the breast cancer experience : by Judy Kneece This book provides a guide to the needs of a woman who has been diagnosed with breast cancer so that her partner can understand how to provide the necessary support.
EduCare Publishing (1995)

Prayer, laughter and broccoli: Being there when your wife has breast cancer by Peter Flierl This book is a “survival guide for husbands”: Peter Flierl reflects on his experiences as a husband when his wife was diagnosed with breast cancer.
Witty Fools Productions (2004)

Complete Guide to Family Caregiving by American Cancer Society Life changes in an instant when a person receives a cancer diagnosis. But life also changes for the caregiver. Whether a spouse, partner, adult child, friend, or other family member, the caregiver plays a crucial role. This practical, easy-to-use guide is an invaluable resource for anyone dealing with the challenges of cancer treatment and caregiving. The book includes information on a wide range of issues a family caregiver might encounter.

How to Help Your Friend with Cancer by Colleen Dolan Fullbright This book contains more than 100 suggestions, along with practical tips and relatable advice that anyone can use to help a friend get through the cancer experience.

Role Reversal: Resources for Children

A breast cancer diagnosis is a scary experience for anyone; then having to explain a complicated, intimidating disease to a child can overwhelm even the most capable parent. Remember that there is no right or wrong to explain a cancer diagnosis to a child, as their reactions can vary greatly. What is important is that the information is communicated to your child in a way that is age-appropriate, honest, open and reassuring. Reflecting on what you want to say ahead of time and how to address the concerns of your child will make the conversation easier.

Here are tips to consider when talking to your child about a cancer diagnosis (via American Cancer Society):

1. Give them the facts. Some people may not want to “burden” their children with the details of their diagnosis, but it’s important for kids of all ages to get good information about what’s happening. Kids are often very aware that something has changed, and what they imagine to be true can often be much more frightening than reality. Give your kids honest and age-appropriate descriptions of what cancer is, how the disease or treatment might affect you physically, and how you may feel emotionally. Allow them to ask questions, and give them an opportunity to talk about their fears and feelings, too.

2. Let them know it’s not their fault. Children are the centres of their own world, and when something like a cancer diagnosis happens, they may feel as if they caused it to happen or that it is somehow their fault. It’s important to reassure them, again and again, that having cancer isn’t anyone’s fault, and that nothing they said or did made your cancer happen.

3. Explain that cancer is not contagious. Children, especially pre-schoolers, may think that cancer is like a cold, and that touching, hugging, or sharing space with a person with cancer might mean they will get cancer, too. Take the time to explain that cancer works differently from many other diseases, and that nobody can “catch” cancer from you.

4. Reassure them that the family will work together to handle the future. One of the most important things you can do is to explain to kids that even though changes will happen because of your diagnosis, you will work together to make sure everyone’s needs are handled. This is especially important because many children fear they may be forgotten while the focus is on your health. Remind them that their needs will always be taken care of, and talk as a family about the specific ways you will make sure that responsibilities, both new and old, will be met.

5. Remind them that they are loved. During a stressful time or when a conversation isn’t going the way you hoped, the most powerful words you can say to your child may simply be “I love you.” Make a point to let them know they are loved and reassure them that those feelings won’t change, no matter what.

Support Groups

Kids can cope – The Kids Can Cope program was developed to help kids aged 5-18 who have a parent or close relative diagnosed with cancer. It’s offered in the Spring and Fall by the Department of Psychosocial Oncology at Cancer Care Manitoba.

Support Saturdays: Helping new moms and dads dealing with breast cancer – A rethink cancer program – The Support Saturday’s program takes place in Toronto and consists of eight weekly sessions followed by four monthly sessions. On-site professional childcare is provided and dads/partners are encouraged to come with the kids and participate in organized healthy play-and-learn activities. Morgan Livingstone a top child-life specialist will facilitate medical play and expressive arts experiences with the children and their fathers/caregivers. Depending on the group’s interest and needs, there may be a couple’s workshop or family day incorporated into the program.

Rethink Breast Cancer
215 Spadina Avenue, Studio 570
Toronto, ON M5T 2C7
Tel: 416-920-0980
Toll-free: 1-866-RETHINK
Fax: 416-920-5798
Email: hello@rethinkbreastcancer.com

Books

Coping when a parent has cancer by Linda Leopold Strauss Strauss opens this book with a discussion on how various family members may react to a cancer diagnosis. She focuses on adolescents, who face unique challenges during these erratic circumstances, by providing insight on how to address these issues. In the book, Strauss also covers the medical aspects of the disease, treatment (including what to expect at the hospital) and the grieving process. This book is recommended for teens in grade 7 and up.
Published by Rosen Publishing Group
ISBN: 0823907856

Dancing through the shadows by Theresa Tomlinson Theresa Tomlinson writes frankly about what it is like for teenagers when a parent is diagnosed with a life-threatening illness. For teenagers.
Publisher: Dk Ink (October 1997)

Moms don’t get sick by Pat Brack and Ben Brack This book is written from the perspective of a boy from the ages of 10 through 14 about his mother, who was diagnosed with breast cancer. With honesty and humor, they show their triumph over a disruptive event in a family’s life and how in a parent-child relationship, cancer can be the catalyst for a renewed appreciation for each other.
Publisher: Melius Pub. Corp; 1st edition (August 1990)
ISBN: 0937603074

Other Resources

Impact of a breast cancer diagnosis on children – National Breast and Ovarian Cancer Centre (Australia) – A woman’s children are likely to be affected by her breast cancer diagnosis. Depending on their age, children may know something is wrong without even being told. The website lists a variety of links to resources.

Dealing with a cancer diagnosis in the family – The American Cancer Society provides a range of resources to help children understand and cope with a cancer diagnosis in the family. They cover topics such as dealing with diagnosis, treatment and recurrence, as well as understanding psychosocial support services and bereavement information.

My mom has breast cancer: A guide for families (DVD) – KIDSCOPE has produced a video about children’s reactions to a diagnosis of breast cancer in their mothers. My Mom Has Breast Cancer includes interviews with seven children and four mothers who have successfully weathered this experience. The DVD includes this video as well as a narrated version of the comic. The DVD includes both products in English and Spanish.

Loving him through it: men with breast cancer

Breast cancer does not discriminate; women are not the only ones at risk. Breast cancer in men is a rare disease; it occurs in less than 1 per cent of all breast cancer cases but the disease can still be fatal if it is not caught in its early stages. In 2015, it is estimated that 220 Canadian men will be diagnosed with breast cancer and 60 men will die from the disease (Canadian Cancer Society Statistics 2015).

Like women, men have breast tissue, ducts and sometimes lobules which male hormones keep breast tissue from developing. The cells in a man’s breast duct can undergo cancerous changes, however, this is uncommon because their ducts are less developed and exposed to the growth-promoting effects of female hormones. Breast cancer is a malignant growth (a group of cancerous cells) that forms in the breast and may grow into surrounding tissues and even spread to distant areas of the body. Although certain risk factors are unique to men, the basic breast cancer information regarding the types, treatments and prevention apply to both male and female breast cancer (Breast Cancer Society of Canada).

Early detection and minimizing the associated risk factors for developing male breast cancer are the best ways to ensure successful treatment. Since breast cancer in men only accounts for approximately 1 per cent of all reported breast cancer cases, general screening might not offer a great benefit to the overall male population. It is very likely that the impression that male breast cancer has a worse outcome stems from men ignoring symptoms and postponing medical attention. Men must be aware that breast cancer is a disease that also affects them. It is very important for men to see their physician whenever a change in their breast is detected (Breast Cancer Society of Canada).

Cancer diagnosis can lead to many challenges for the man with cancer and his family. Each man’s experience will be different because his cancer, treatment and recovery are different.

A man with breast cancer may have concerns about (via Canadian Cancer Society):

  • Lymphedema: swelling of the arm when lymph nodes in the armpit are removed during an axillary lymph node dissection.
  • Hot flashes: a man may have hot flashes due to the side effects of some hormonal therapy
  • Erectile dysfunction (impotence): some hormonal therapies for breast cancer in men can cause erectile dysfunction.
  • Problems with fertility: some chemotherapy drugs can cause infertility.
  • Body image and self-esteem: many men find it difficult to talk about their breast cancer diagnosis because it is often seen as a cancer that only women get.

If your partner, son, brother, or friend is diagnosed, be sure to offer him the same love and support he would offer you. Visit “A journey for two: Partners as Caregivers” on the previous page for information on how to provide your man with the kind of care he deserves!

Professional at home Caregiver Resources

Victorian Order of Nurses (VON) A list of programs across Canada which offer general home visiting nurses.

Victorian Order of Nurses (VON) A list of programs across Canada which offer shift nursing. The service brings the expertise of registered practical nurses to the home. Available from a minimum of three hours to continuous 24 hours of care, the shift-nursing program is an alternative to institutional care.

Supporting a Loved One with Metastatic Breast Cancer

When a woman is diagnosed with metastatic breast cancer, it’s a blow for her and her caregiver alike. Whether it’s recurrent disease or a late-stage diagnosis, the treatment information, emotions and many responsibilities that come with this news can be overwhelming. The toll this takes on both the patient and caregiver’s health and well-being cannot be underestimated. Caregiving carries many difficult emotions, such as fear, anger, sadness and worry. While the journey may bring greater closeness with a loved one living with cancer, it will likely be the hardest job you ever do.

Metastatic Breast Cancer: Caregiver Q&A (via Living Beyond Breast Cancer)

Q: My partner was just diagnosed with metastatic breast cancer and I feel completely overwhelmed. I want to help her but I don’t know how.

A: A diagnosis of metastatic breast cancer can be devastating not only for the woman or man who is diagnosed, but also for the entire family. It’s normal for you to feel anxious, angry, depressed and overwhelmed. It’s also important to face your feelings and move on so you can be there for your partner in a way that works for both of you.

Your relationship with your partner is bound to change following their diagnosis, and this can be a very scary thought. But many couples report that their relationships actually deepen and become closer and more meaningful when one partner is diagnosed with metastatic breast cancer.

Open and honest communication is the key to getting through this difficult time together. Rather than assuming that you know what she may or may not need, ask how you can help. Some questions you can ask are:

  • Do you mainly need a shoulder to cry on? Or do you want to focus on practical, everyday things to keep your mind off the diagnosis?
  • Can I go with you to doctors’ appointments?
  • Can I help more around the house?
  • Can I take you on a long-awaited vacation?

By listening and sharing your own thoughts and feelings, you can work together to build your relationship in a positive way moving forward. You may also want to check out some of the resources we list.

Q: I worry about my partner who has metastatic breast cancer, but I don’t want to burden them with my concerns. Who can I talk to about my worries?

A: Talking with your partner about your concern for their well-being may actually be a good place to start. They may appreciate the opportunity to share some common fears, and you can both find ways to support one another.

If you find it difficult to talk about this with your partner, consider talking with a close friend, counselor, clergy or other spiritual advisor. You also might find it helpful to join a support group for the partners or caregivers of people with cancer. Sharing your concerns with others can help ease the burden of those concerns.

Q: My partner has metastatic breast cancer and doesn’t have the energy to do such household tasks as cooking, shopping and cleaning. I try to do as much as possible, but I work full-time and often don’t have energy for this myself, on top of caring for our children. Where can I turn to for help?

There are many people and organizations that are more than willing to offer help. These resources may include friends, family members, colleagues and neighbors. Religious groups and community organizations often have volunteers who can help with household tasks or other needs.

Start by preparing a written list of the chores or errands you need help with. Then ask a friend or family member to enlist those who are eager to help you.

Q: I know I need to be there for my loved one who has metastatic breast cancer, but it’s wearing me down and I feel guilty and torn about it. How can I take care of her and also take care of myself?

A: One of the most difficult things about caring for a loved one with metastatic breast cancer is what is sometimes called “caregiver fatigue.” This is when you spend so much time and energy caring for your loved one that you forget to take care of yourself.

If you are exhausted, frazzled and emotionally drained, you can’t be much help to your loved one. It’s very important to realize what’s happening, take a step back, and start eating, sleeping and exercising regularly to keep your own energy up so that you can continue to offer help and support while not neglecting your own health and quality of life.

All FAQs taken from Living Beyond Breast Cancer and reviewed by Elyse Spatz Caplan, MA

More resources for Metastatic Breast Cancer Caregivers

Living with Metastatic Breast Cancer Willow Breast and Hereditary support created an online information pamphlet for people living with metastatic breast cancer.

Forum: For Family and Caregivers of Members with STAGE IV Diagnosis A forum created by breastcancer.org where family members, caregivers, loved ones of members having a Stage IV (metastatic) breast cancer diagnosis can talk, exchange and support one another.

Advanced Breast Cancer Community The Advanced Breast Cancer Community is a web portal and online community solely dedicated to advanced/metastatic breast cancer patients, their families, friends and healthcare providers.

Metastatic Breast Cancer Network (MBCN) MBCN is an American patient-led advocacy organization dedicated to the unique concerns of the women and men living with metastatic breast cancer.

AdvancedBC.org AdvancedBC.org is dedicated to the needs of people living with metastatic breast cancer. The website links to online resources, information about research and treatments, and the perspectives of Musa Mayer, long-time advocate and author.

MetaCancer The mission of the MetaCancer Foundation is to improve the psychosocial condition of people living with metastatic cancers. Its website includes information and tips, as well as an online community.

BCMets.org – Metastatic Breast Cancer Information and Support BCMets.org offers a message board for people with metastatic breast cancer.

METAvivor METAvivor is a non-profit organization dedicated to increasing awareness of advanced breast cancer and equity in research and patient support.