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Chapter 6

Family caregiver support

Taking care of the caregiver

    Unpack this topic

    It is not how much you do, but how much love you put in the doing. Mother Teresa

    After your cancer treatment, you may need support from family members or friends on a daily or regular basis. A family caregiver is someone who can help you and make things easier for you throughout your recovery, as they may have done when you were going through treatment.

    This chapter is intended for your family and friends who are committed to helping you throughout your cancer experience. They will find expert advice, ideas about how to create a new routine for themselves, tips on how to cope with new challenges, and strategies to help balance their emotional, physical and financial lives during caregiving.

    The people who supported you during your treatment may already be well informed about your recovery process. For others, it may be helpful for them to learn more about the types of support you may now need, and how that support will help you. It may also be useful for them to know more about the possible adjustments that caregiving during recovery may bring to their own lives.

    For example, if your family or friends supported you during cancer treatment, and if the care they offered is not as necessary or frequently needed as before, caregivers may need to find a new rhythm. Each experience may differ from person to person. It is important to inform and guide your caregivers about what you need while they are helping you.

    Section 1

    Are you a caregiver?

    The way in which family caregivers offer support to the person needing care (also referred to in this chapter as the ‘care recipient’, ‘loved one’ and ‘person you are caring for’), during and after cancer treatment, will vary. Every relationship is unique.

    It is important that caregivers who care for someone after cancer treatment are aware that even after therapy, some people have to cope with side effects and symptoms, and other issues. Recovery does not necessarily happen right after treatment—it often occurs over time. Caregivers will get information on a variety of topics about life after cancer treatment in this chapter, and learn how to adapt their care to the person they are supporting through recovery.

    Who can be a caregiver?

    When you provide care for someone who is a relative, partner, child or friend, you are a family caregiver, no matter what your age is. Whether you are providing care at home or in a care centre, on a daily or weekly basis, caregiving can be demanding and challenging—but it can also be rewarding and enriching. It is also important to note that caregiving is influenced by the customs and expectations of society and different cultures. Go to www.healthexperiences.ca to see and hear how others have experienced being a caregiver.

    Close friends and relatives

    When you are part of the same family or a circle of friends, your relationship with the person needing care may be challenged for many different reasons. Caregivers may need to take into account mood changes and the fragile state of health of their loved one. Getting through cancer treatment is a cause for rejoicing, but it is possible that the care recipient may face new hurdles in the months ahead. A young caregiver (aged 18 and under) is someone who provides significant care to a member of their family. Like adult caregivers, they can provide practical, personal and emotional support. Having to combine studies, work or other activities with caregiving may be challenging. Here are a couple of online resources for young caregivers:

    Partners

    If your spouse or partner is ill, you may find that you have to meet the financial, spiritual and emotional needs for both of you on your own.

    While caring for your partner can be very enriching for both of you, it may also be emotionally challenging. Some healthcare teams (at your hospital or in your community) offer support to couples. There are also support groups that offer special sessions for couples who are facing difficult times together. Find more information in Chapter 6: Family Caregiver Support / Section 5: Practical services and support for caregivers.

    Understanding how to distinguish between anger and frustration due to illness, and the normal trials of life as a couple, can help you reconnect. Many problems encountered during treatment will improve over time with some adjustments and compromises on both sides.

    In our case, it took many discussions and the realignment of our goal to live every day to the fullest no matter what. We had to change our priorities and forget about tomorrow and concentrate on the now. Paul, partner caregiver, age 70

    Talking about your relationship

    Many partner caregivers who maintained communication and made listening central to their relationship, felt their relationship with their loved one grow stronger after cancer treatment. Keep listening even after the end of treatment—your partner may still need your emotional support coping with physical changes, for example. Also, do not hesitate to surround yourself with professionals who can provide support.

    As a partner and caregiver, it is important to keep communicating with your loved one in order to find the best ways for you to reconnect as a couple. Intimacy may be disrupted during and after cancer treatment. Communication is, therefore, essential in order to restore balance in the relationship.

    It is helpful to not judge your sexual relationship, either in terms of performance or desire. Certain side effects and symptoms, as well as body image concerns, may continue after cancer treatment, which can affect sexual activity (desire and sexual function). Find more information in Chapter 2 What to Expect After Treatment / Section 2: What are the possible side effects / Heading: Changes in sexuality and intimacy.

    Talking to your children about cancer

    If you have children, you may want to speak with them to help them understand the situation and how it may affect your partner during recovery. It might be a good idea to let them know what kinds of things could happen in the coming weeks and months. Find more information on how to talk to children and adolescents about cancer at www.cancer.ca/en and startthetalk.ca/en/home.

    It is important to listen to your children, even if it seems like they do not want to talk about this subject. Listen carefully to whatever they do say. You may wish to speak to their teachers, coaches and other adults in your children’s life, to find out if they notice any changes in their behaviour. If you require further help, you can speak to your children’s principal—each public school has a social worker assigned to its territory.

    If you are feeling anxious or distressed, acknowledging and attending to these feelings is one of the most important things you can do for yourself. Every person is unique, and there are many different ways to find help and support: therapy, caregiver support groups, speaking to your spiritual advisor, yoga, or meditation, to name a few. Try what you think is best for you. Janet Steinberg, psychotherapist

    Top tips

    Section 2

    New challenges after treatment

    Communication: A basic part of caregiving

    Throughout caregiving, maintaining contact and open communication with different people creates awareness and can help you keep a balanced perspective. Communication is key to managing the situation successfully, as much for you as for any other family and friends involved, to make sure your loved one receives the help and support they need during and after cancer treatment.

    Communicating with other family members

    While some people may be aware that your care recipient needs continued support, others may think that the end of treatment means a total recovery. Speak openly with the people in your life and explain what kind of support is needed now that cancer treatment is complete. You are more likely to get the help you need if you give others the information they need to understand the situation. Try to create an awareness about the recovery process with relatives who are unfamiliar with the disease or who may not want to hear about it (fearing the disease). You can also ask for advice from a support group or use someone who is part of a peer support program. Or you can ask a social worker for tips on how to communicate with your family to get more help and support from them. This can be beneficial for you and the person you are caring for.

    Communicating with the medical team

    Maintaining communication with the doctor and the medical team is essential to the recovery process. When you share your concerns and questions, you can receive professional guidance and get a better understanding of the key points in the recovery of your loved one.

    Communicating with the person you are caring for

    Talk to the person you are caring for about the experience you went through together and how you both see this new stage of recovery. Discuss your expectations and concerns. You may also find yourself having unexpected conversations with your loved one because of their cancer experience. For example, although they may be in recovery, they may be thinking about the future and want to make sure that their wishes are officially registered in legal documents, known as advance directives. Advance directives can include a living will or a power of attorney for health care. These documents are meant to help with decisions about future medical care and treatment if the person you are caring for is ever unable to speak or decide for themselves. Advance directives, wills, insurance policies, and other similar official documents, must be approved by a lawyer or a notary public. Resources can be found in Chapter 6: Family Caregiver Support / Section 5: Practical services and support for caregivers / Heading: Administrative.

    Care and medical follow-up for your care recipient: Where you fit in

    After cancer treatment, recovery may seem to you, as a caregiver, more challenging than you thought it would be. The end of treatment can cause a variety of physical and emotional changes due to side effects your care recipient may be experiencing. Emotional support is especially important during this transition towards wellness. Medical follow-up will be planned by the doctor and their team, to closely monitor the health of your loved one. Monitoring occurs at regular intervals, and will be determined by the healthcare team.

    Communicating with the person you are caring for about their medical follow-up is also important to their recovery. You can help them keep track of medical details and record a clear medical history. You can also help them ask questions that may come up during the recovery period—about side effects, complementary therapies, physical activities, nutritional concerns, and anything else that could be useful in their daily life.

    In addition, during the year following the end of cancer treatment, the fear of recurrence is very common. Although it usually fades over time, this fear may reappear because of a milestone, such as events that remind your loved one of their diagnosis or treatment, or symptoms of the disease. For more information on the fear of cancer recurrence, go to Chapter 3: Emotions, Fears and Relationships / Section 5: The fear of recurrence.

    By being active in the medical follow-up and recovery of your care recipient, you can help each other and strengthen your relationship.

    After cancer treatment: Side effects and symptoms to look out for

    Once cancer treatment is complete, the recovery period can take more or less time depending on the care recipient’s physical and psychological condition. Post-treatment side effects also depend very much on the individual. The type of side effect—and related symptoms—when it begins, how bad it feels, how long it lasts, and the best way to handle it, are experiences that are unique to each person.

    After cancer treatment, if you notice symptoms similar to those that occurred during treatment, the person you are caring for may be suffering from side effects. These may include:

    • Fatigue
    • Pain
    • Memory and concentration problems (cognitive impairment)
    • Swelling (lymphedema)
    • Mouth and teeth problems
    • Changes in weight and eating habits
    • Bladder or bowel control problems (incontinence)
    • Menopause symptoms or sexual dysfunction.

    Above all, do not hesitate to ask the healthcare team questions. A better understanding of the side effects and symptoms to look out for after cancer treatment will make it easier for you to identify them, and to make the most of the recovery process for your loved one.

    See Chapter 2: What to Expect After Treatment for descriptions of possible side effect, signs to look out for and more.

    Top tips

    • Look out for side effects and symptoms.
    • Note any forgetfulness or memory loss that at first may not seem important.
    • Pay attention to any physical changes,
    • Ask your care recipient if they are comfortable with your presence during medical visits.

    If the person you are caring for refuses outside help and support

    It can be difficult for someone who is not feeling well to ask for help. Perhaps it is you who would like to have extra help, but your care recipient does not feel comfortable having people they do not know coming into your home. If your care recipient refuses additional help when you think it is required, talk to them about their concerns and express your own needs. Communication is key in this situation. While their feelings and decisions about their recovery need to be validated, they also need to understand what you need to be able to care for them in the best way possible.

    Sometimes communicating with your loved one can be difficult, either because you don't want to hurt their feelings, or you don't share the same viewpoint. Whatever the reason, maintaining an honest and clear dialogue with your care recipient (about your limitations, feelings, aspirations) is central to respecting yourself. It will also help to reduce potential struggles and distress due to feeling misunderstood or not acknowledged. Nancy Moscato, social worker

    Top tips

    • Do not rush things. Stay patient and open.
    • Plan for gradual changes, allowing time for your loved one to become more independent.
    • Organize extra help at home on a trial basis. You can then discuss the situation with your loved one so that they can make a decision about more regular help.
    • Remind them that you are on their side and there to support them, but that the final decision is theirs.
    • Involve a third party, such as a doctor or another trusted professional, and brainstorm options.
    • Discuss options with your care recipient if you are concerned about the decisions they are making. Try to come up with compromises that you can both agree on.
    • Listen and communicate regularly. Acknowledge their right to be independent.

    Section 3

    Taking care of yourself as a caregiver

    Finding a new rhythm after treatment

    Taking care of a person usually starts with an unfortunate event, such as a cancer diagnosis or the beginning of cancer treatment. During treatment, the main care goals are to get the patient to appointments, support them, and protect them from infections that would disrupt the treatment schedule.

    The end of treatment can also present its own particular challenges. After treatment, the main goal is to get back to ‘normal’—but the patient and you as a caregiver need to define what that will look like, and figure out together how you will progress towards this new life. Going back to ‘normal’ usually means developing new perspectives in a new environment. The reaction or response at the end of caregiving is unique to each person. Talk to your loved ones, and to professionals, and express your feelings and emotions.

    Post-treatment is about finding a ‘new normal’. It takes a lot of time and patience to get there, particularly if hormone therapy is involved, causing lots of emotional responses. Expectations need to be realistic. Post-treatment can easily take a year or more. Paul, partner caregiver, age 70

    You may be experiencing many conflicting emotions at this time: joy and sadness, stress and excitement. Now that you may be able to take some time for yourself, you may be afraid that something could happen to your loved one when you go out. You may also feel abandoned by your family and other relatives or friends, as they don’t follow up with you and your loved one as often (or not at all) now that the worst is over. These feelings and emotions are common for many caregivers.

    Top tips

    • Follow up on your own medical appointments.
    • Do something pleasurable for yourself as regularly as you can.
    • Keep a journal. This is a safe way to express your feelings and experiences.
    • Ask others for help.

    The impact of caregiving on other areas of your life

    Impact on your finances

    Cancer treatment may result in financial challenges for your family, and you may need some help with this. You may want to inform yourself about tax benefits and other types of financial help available to caregivers from the federal and provincial governments. Below are some examples of the type of resources that are available. Use this as a guide to find more information or information for resources available in your particular area.

    Quebec/Montreal

    • The Association cooperative d’économie familiale offers consultations, workshops and information sessions about finances (budgeting) at a low cost: www.consommateur.qc.ca (in French only).
    • The West Island Cancer Wellness Centre offers financial planning information sessions at no cost: www.wicwc.org.

    Ontario/Toronto

    Alberta/Calgary

    British Columbia/Vancouver

    Impact on your job

    If you have a job in addition to your responsibility as a caregiver, you may find it a challenge to balance these roles.

    If you have not already done so, it may be useful to check your company’s policies regarding your situation. Contact the human resources department or speak directly with your employer, to find out about your options in terms of time management and flexibility. Perhaps you may be able to work on a more flexible schedule, such as reduced hours or part-time. Or you might be able to work from home, for example. You may also want to explore the possibility of early retirement or unpaid leave.

    Ask your employer and your human resources department about additional employee benefits that may help with your caregiving responsibilities. Common terms for such benefits are ‘extended health benefits’ and ‘employee and family assistance programs’. In addition, your own benefit plan may include a clause regarding ‘dependents’—check to see how your plan describes this (sometimes another term is used instead of ‘dependents’).

    Impact on your physical, emotional and mental health

    When we provide care, we often concentrate all of our attention on the person that needs the help and support. Sometimes we ignore or forget about our own health. To lower the risk of having to face health problems, caregivers who have been in similar situations strongly recommend taking a step back to focus on the basics, including:

    Assess your emotional and mental health

    The wide range of emotions that are associated with caregiving—love, dislike, anger, impatience, joy, anxiety—are all very normal. There are many ways to deal with the more negative emotions by using healthy strategies, such as being physically active, meditating, doing something you enjoy, or speaking with friends. If you find that your emotions are making it difficult for you to take care of yourself, or your care recipient, it may be a good idea to get help from a caregiver support group, or from other community resources where professional support is available.

    Some of the signs that may indicate that you need help to improve your emotional and mental health are:*

    • Changes in appetite, sleep or mood.
    • Changes in thinking.
    • Difficulty concentrating or with memory.
    • Feeling anxious and/or irritable.
    • Feeling stressed and overwhelmed.
    • Thinking about suicide.
    • Avoiding daily activities.
    • Experiencing more conflict in your relationships.
    • Feeling isolated.

    While feeling stressed, anxious and sad are common and normal, if these feelings are negatively affecting your day-to-day life and lasting more than two weeks, you may need help.

    Get more information on support for caregivers in Section 4. Chapter 6: Family Caregiver Support / Section 5: Practical services and support for caregivers / Headling: Local and online support groups.

    * Source: St. Mary’s Research Centre. Guidebook for Family Caregivers. Montreal: St. Mary’s Hospital Foundation, September 2013. Print.

    How to cope with stress

    It is very common for caregivers to feel high levels of stress at times. Perhaps you would like to ask for help, but you do not want to impose on others. It is very possible that relatives or friends may want to help, but do not know what kind of help they should offer. Feel free to share with them the kinds of tasks you need help with. You can be specific, such as suggesting they prepare a meal, do some gardening for you, or spend time with the person you are caring for so that you can take some time for yourself.

    Accepting this help will reduce your stress, and will be beneficial for both you and the person needing care. You can involve your loved one in selecting the people to ask for help, and the tasks that you would like them to help with.

    • A good way to begin is to list all of the things that you would like help with such as: physical care, visits for moral support, transportation, groceries, meals, housekeeping, medical care (picking up prescriptions or going to appointments), organizing finances (budget, bills, taxes), support groups or workshop information, or contact information for social workers.
    • Join an online network to share caregiving stories: www.tyze.com, for example.
    • Talk to people. Share information about what it is like being a caregiver and the difficulties you face in your role.
    • Manage your care recipient‘s health record booklet information carefully, so that you can always easily find this information.
    • Use a calendar or agenda to schedule caregiving activities with your loved one, and activities for yourself, such as napping, doing yoga (or another physical activity that you like), going to the movies, shopping, or simply getting in touch with friends and acquaintances.
    • Keep a list of key contacts at your loved one’s house and with you in case of an emergency.

    Stress test for caregivers

    Caregivers can sometimes feel overwhelmed by their responsibilities. You may feel a high level of stress in your role as a caregiver and it may be time to ask for help from friends or family, or from resources in your community.

    Answer the 11 following statements with one of the following: a) seldom, b) sometimes, c) often, d) usually or e) always.*

    1. I find I can’t get enough rest
    2. I don’t have enough time for myself
    3. I don’t have time to be with other family members besides the person I care for
    4. I feel guilty about my situation
    5. I don’t get out much anymore
    6. I have conflict with the person I care for
    7. I have conflict with other family members
    8. I cry every day
    9. I worry about having enough money to make ends meet
    10. I don’t feel I have enough knowledge or experience to give care as well as I’d like
    11. My own health is not good

    If your response to two or more of these statements is ‘usually’ or ‘often’, it may be time to begin looking for help with caring for your family member or friend, as well as help in taking care of yourself.

    * Statements 1 to 11 reproduced from: St. Mary’s Research Centre. Guidebook for Family Caregivers. Montreal: St. Mary’s Hospital Foundation, September 2013. Print.

    The best thing that happened to us is when our family doctor, a former cancer victim patient himself, counselled us to get into a serious gym and yoga program and rebuild our physical health. Physical activity is really important. Paul, partner caregiver, age 70

    Here are some simple ideas from the Ministry of Health and Long-Term Care in Ontario to increase your physical activity:

    • Get off the bus 10 minutes from where you work.
    • Add 10 minutes of movement to your morning routine.
    • Park the car 10 minutes from where you are going.
    • Dance to your favourite music for 10 minutes each day.
    • Take the stairs instead of the escalator.
    • Take a 10-minute stretching break at work.
    • Walk or bike to work.

    Top tips

    The fear of losing someone you love

    When you begin caregiving, the fear of losing your loved one may be something that you start to worry about. This feeling may get stronger the longer you are in this role. If you feel that this emotion is affecting your daily life and your relationship with your care recipient, know that you are not alone. It may be helpful for you to talk about how you feel with people who are in a similar situation, or with a professional such as a psychologist. See Chapter 6: Family Caregiver Support / Section 5: Practical services and support for caregivers / Heading: Local and online support groups for more information on the support you can receive.

    At the same time that you are experiencing this fear, the person you are caring for may also have similar worries—about recurrence and dying. See Chapter 3: Emotions, Fears and Relationships for more information on this subject.

    When caregiving is no longer required

    When the person you have been caring for has finished treatment and their health is improving, a time may come when they will be able to continue their life without needing the same amount of help from you as before. They need to find a new routine as part of the recovery process, and the same goes for you. It may be difficult for you to get used to the reality that your relationship with the person you have been caring for is changing. It can be helpful to think of this stage as a time of reconnection or renewal with your partner, spouse, family member or friend. Instead of the stress and worry of treatment, you can now begin to discover, or rediscover, each other and the value of your relationship. Think of the things you used to do together—perhaps you can begin these activities again. Maybe you can talk about trying something new or look at adjusting your roles and responsibilities. You could also reconnect with friends and family. Above all, take the time to enjoy each other and your time together.

    If you would like to meet new people, think about the places you often go to, and the types of activities you like to do, as a simple way to approach this. Explore your passions and interests for possible activities that you would enjoy doing and could meet new people at the same time.

    Joining a support group may help with reducing isolation, and increase feeling connected and understood. Nancy Moscato, social worker

    Think about where you could meet people with the same interests as you. Some ideas include:

    • Attend community events that interest you, such as concerts, lectures, or book readings.
    • Volunteer for a cause that is important to you. Most cities have volunteer centres that can help match you with organizations in need.
    • Take a class, or join a club. Find organizations that interest you, or create one of your own with the website www.meetup.com.
    • Carpool to work, or ask your colleagues if they would like to share rides (www.kangaride.com).
    • Break the ice with a neighbour or work colleague, and invite them to go to a movie or for coffee.

    Top Tips

    • Express how you feel in a diary.
    • Talk about your emotions and feelings with a counsellor, psychologist or social worker.
    • Take care of yourself—Help you might need for resources laugh whenever you feel like it!
    • Try exercising 30 minutes a day, 3 times a week. Exercise relieves stress and boosts energy.
    • Connect with friends and family members. Take time to visit them.

    Section 4

    Practical services and support for caregivers

    Below are some of the services and support resources available, in general and in some of the provinces for the different categories listed. You can use this as a guide to search for more information, or for resources available in your particular area.

    For more information on support groups and psychosocial support, also see the last section of Chapters 2, 3, 4 and 7.

    General information

    Quebec/Montreal

    Ontario/Toronto

    Alberta/Calgary

    British Columbia/Vancouver

    Administrative: Notaries and lawyers

    Quebec/Montreal

    Ontario/Toronto

    Alberta/Calgary

    British Columbia/Vancouver

    Home care and private services (nurses, companions)

    Quebec/Montreal

    Ontario/Toronto

    Alberta/Calgary

    British Columbia/Vancouver

    Local and online support groups

    Quebec/Montreal

    Ontario/Toronto

    Alberta/Calgary

    British Columbia/Vancouver

    Psychosocial support

    Quebec/Montreal

    • Tel-aide (anonymous and confidential listening service for people in distress): www.telaide.org/en
    • Ordre des psychologues du Québec: www.ordrepsy.qc.ca
    • Ami Québec – Action on Mental Health (phone and in-person counselling for caregivers): www.amiquebec.org
    • Montreal Therapy Centre (individual, couples, family counselling at sliding fee scale rates): www.montrealtherapy.com
    • The Argyle Institute (individual, couples, family counselling. Rates determined by household income): www.argyleinstitute.org

    Ontario/Toronto

    Alberta/Calgary

    British Columbia/Vancouver