THE T.U.F.F SERVICES MINISTRIES™    
                                        

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Caregiver Information And Guidelines

 
Who are caregivers?

Caregivers may be partners, family members, or close friends. Most often, they are not trained for the caregiver job. Many times, they’re the lifeline of the person with cancer. Life changes when a person is told “You have cancer.” But the patient is only one of the people affected by the cancer. Life also changes for those who care about and love the person with cancer. And life also changes for the person who will help the patient get through the cancer experience – the caregiver.  Click here for the Caregiver Manual.


Here are a few things caregivers might help the person with cancer do, or in some cases even do for them:


  • Shop for and prepare food
  • Eat
  • Take medicines
  • Bathe, groom, and dress
  • Use the bathroom
  • Clean house and do laundry
  • Pay bills
  • Find emotional support
  • Get to and from doctor’s appointments, tests, and treatments
  • Manage medical problems at home
  • Coordinate cancer care
  • Decide when to seek health care or see a doctor for new problems


All of this work costs caregivers time and money. There may also be a cost to the caregiver’s health and well-being, but often the caregiver just keeps doing what needs to be done and may suffer in silence. You may be glad to put the well-being of the person with cancer above your own well-being. And your love for this person may give you the energy and drive you need to help them through this difficult time. Still, no matter how you feel about it, care giving is a hard job! And many caregivers are there for their loved one 24 hours a day for months or even years.


Caregivers who take care of their own needs and get the information, help, and support they need are better prepared to take care of their loved ones.


Being a caregiver is a tough job, but it’s an important and rewarding one, too. Today, more than 13 million Americans have or have had cancer. Each of them probably needed a caregiver at some point to help them through their cancer experience, especially the first year or 2 after diagnosis. This is when most of the treatment takes place and caregivers can be very important to its success.

 
 
Why is a caregiver needed?


Today people spend far less time in the hospital than in the past. This means that sicker people are being cared for at home.

There has also been a shift in cancer treatment, and a lot of it is now done in outpatient treatment centers. This has led to a need for the family to be part of the day-to-day care of the person with cancer. Today, families provide about 80% of home-care services. Caregivers are doing things that, until recently, were done by trained health professionals.


What does a caregiver do?


Caregivers have many roles. The roles change as the patient’s needs change during and after cancer treatment. Caregivers serve as home health aides and companions. They may help feed, dress, and bathe the patient. Caregivers arrange schedules, manage insurance issues, and provide transportation. They are legal assistants, financial managers, and housekeepers. They often have to take over the duties of the person with cancer, and still meet the needs of other family members.


As a caregiver, you have a huge influence – both positive and negative – on how the cancer patient deals with their illness. Your encouragement can help the patient stick with a demanding treatment plan and take other steps to get well, like eating healthy meals or getting enough rest.




Caregivers solve problems


The person with cancer faces many new challenges. As the caregiver you can help the patient deal with these challenges and get through any problems that come up. The best way to prioritize and manage problems is to first try to understand the problem, as well as the desired result. Caregivers who are realistic, but positive; careful, but creative; and focused, but flexible are sources of strength and security for people with cancer.


For example, suppose the patient’s white blood counts drop, she develops a fever, and as a result, needs to be in the hospital. This can be very upsetting and may be seen as a setback by the family and the patient.   The caregiver can:


  • Help address their concerns by pointing out that the patient will need to be in the hospital for only a short time until antibiotic treatment has the infection under control.

  • Make sure that the patient has everything she needs while in the hospital, including doctor’s prescriptions for non-cancer related medicines she may be taking at home, such as thyroid or blood pressure medicine.

  • Call all the doctors involved in the patient’s care and tell them about the infection and that she is in the hospital.

  • Check that arrangements have been made for the patient to stay on the antibiotics at home or as an outpatient after she leaves the hospital. If daily visits to the outpatient clinic for IV (intravenous) antibiotics are needed, the caregiver can coordinate people to help her get there and back each day. These kinds of tasks may be too much for the patient to tackle while fighting infection. This kind of help is valuable. It’s a reassuring sign for the patient that this short-term problem can be managed and solved.



Caregivers are part of the team


The caregiver is part of a health care team made up of the patient, other family and friends, and the medical staff. As a caregiver, you may find yourself working closely with the health care team, doing things like:


  • Giving drugs
  • Managing side effects
  • Reporting problems
  • Trying to keep other family members and friends informed of what’s happening
  • Helping to decide whether a treatment is working


As part of the team, you will help coordinate the patient’s care. Caregivers often have to keep track of prescriptions, know which tests are to be done, and make sure all involved doctors know what’s going on. They often find themselves preventing mix-ups and keeping track of paperwork.


A good caregiver is a vital health care resource. In many cases, the caregiver is the one person who knows everything that’s going on with the patient. Don’t be afraid to ask questions and take notes during doctor visits. Learn who the members of the health care team are and know how to contact them. Getting the right support and information can help both you and your loved one with cancer.




Caregivers involve the patient


Good communication with the person you are caring for is the most important part of your role. It may be hard for the patient to take part in daily planning and decision-making because he’s dealing with the physical, emotional, and social effects of cancer and treatment. Your job is to involve the patient as much as possible, so he knows he’s doing his part to get better and not be a burden to you. Here are some things you can try to do to keep the patient involved:


  • Help him live as normal a life as possible. To do this you might start by helping him decide what activities are most important. He may need to put aside those that are less important in order to do the things he enjoys most.

  • Encourage him to share feelings and support his efforts to share. For instance, if he begins talking to you about his feelings about cancer, don’t change the subject. Listen and let him talk. You might want to share how you are feeling, too.

  • Let him know you are available, but don’t press issues. This might involve something that he’s trying to do, such as dress himself. He may be struggling, but it’s important to him that he be able to do this. You may want to do it for him, but don’t. Let him decide when he needs help.

  • Remember that people communicate in different ways. Try sharing by writing or by using gestures, expressions, or touch. Sometimes, it may be really hard to say what you are feeling, but a gesture such as holding hands might tell him how you feel.

  • Take your cues from the person with cancer. Some people are very private while others will talk more about what they are going through. Respect the person’s need to share or his need to remain quiet.

  • Be realistic and flexible about what you hope to talk about and agree on. You may need or want to talk, only to find that the patient does not want to do it at that time.

  • Respect the need to be alone. Sometimes, we all need time alone – even you.


You might find that the person you are caring for is acting different – angry, quiet and withdrawn, or just sad. If you get the feeling that he is not talking to you because he wants to spare your feelings, make sure he knows that you are always open to listening, even about tough topics. If he keeps acting very sad or withdrawn, you might want to talk to the cancer care team about what could be causing it and what can be done. 


What does it feel like to be a caregiver?

Despite the sadness and shock of having a loved one with cancer, many people find personal satisfaction in caring for that person. You may see it as a meaningful role that allows you to show your love and respect for the person. It may also feel good to be helpful and know that you are needed by a loved one.


You may find that caregiving enriches your life. You might feel a deep sense of satisfaction, confidence, and accomplishment in caring for someone. You may also learn about inner strengths and abilities that you didn’t even know you had, and find a greater sense of purpose for your own life.


The caregiving role can open up doors to new friends and relationships, too. Through a support group, you can get to know people who have faced the same kinds of problems. Caregiving can also draw families together and help people feel closer to the person who needs care.


Caregiving can also be frustrating and painful. People caring for very sick patients may notice their own feelings of severe sadness and emotional distress. They can develop physical symptoms, like tiredness and trouble sleeping. This is more likely to be a problem for caregivers who aren’t able to get the support they need, and who don’t take care of themselves – especially those who try to press forward alone, even as their own quality of life suffers.


Caring for someone going through cancer treatment is a demanding role, but being good at it can give you a sense of meaning and pride. These good feelings can give you the strength and endurance to continue in the role for as long as you are needed.



What if I make mistakes?


No matter what you do, you will very likely come to a point where you feel that you have failed in some way. It seems obvious that as a caregiver, you do the best you can. You try to include the patient, other concerned family members, and close friends in important discussions. You always try to make decisions that are in the patient’s best interest – decisions that you and the patient can live with. But sometimes you will feel that you could have handled a situation better or done something a better way.


At these times, it is important not to blame yourself. Find a way to forgive yourself and move on. It helps to keep in mind that you will keep making mistakes, just like everyone else. Try to keep a sense of humor about it. And try to recognize those things that you do well, too. These things are often easy to overlook. It also helps to keep in mind why you chose to take on this often difficult and stressful job.

As a caregiver, you have an important and unique role in helping your loved one through their cancer experience. The American Cancer Society can offer you information, resources, and support. Call us at 1-800-227-2345 any day and any time you need help for yourself or your loved one.


What about my needs and feelings?

Caring for someone going through cancer treatment can be very stressful and exhausting. It takes emotional, spiritual, and physical strength. It also takes time: in one study, over 50% of caregivers spent more than 8 hours a day caring for patients who were getting chemotherapy. There is often a financial burden to caregiving, too.


On top of your normal day-to-day tasks, such as meals, cleaning, and driving or arranging transportation, you will become an important part of the cancer treatment team. This busy schedule often does not leave time for caregivers to take care of their own needs. You also may feel the need to turn down job opportunities, work fewer hours, or even retire early in order to meet the demands of being a caregiver.


If you need some time away from work, speak with your boss or benefits office. If your workplace has an Employee Assistance Program, look into what it offers. Some offer counseling services for money concerns, stress, and depression. If you can’t or don’t want to stop working, you might be able to take unpaid time off under the Family and Medical Leave Act. Whether you will be able to do this depends on your job and how you are related to the person you care for. (See information called Family and Medical Leave Act (FMLA). You can read it on the Web site at  www.cancer.org, or you can call and ask for a copy.) You may also find that the people you work with treat you differently because of the time you must spend on caregiving tasks. This can affect you financially, as well as personally.


All these changes can lead to anxiety, hostility, anger, resentment, frustration, and depression. These are normal feelings that must be recognized and managed. Ask the health care team about resources that are available to you and use them. Informed and supported caregivers can better manage the harder parts of the role. They are better able to see the good parts of the role, too. They are also better able to see the value of their care.


The support of friends and family is key to both the person with cancer and the caregiver. Caregivers often feel tired, isolated, depressed, or anxious, and are less likely to reach out for help. In one study, California caregivers of patients with brain tumors thought it would be very helpful to be able to talk to someone who had been through a similar experience, but more than half had not been able to satisfy this need. They also mentioned the need for support to deal with their anxiety or stress, with more than half reporting that they did not have enough support. Physical problems like heart disease, high blood pressure, sleep problems, increased risk of infections, depression, and fatigue have been linked with caregiving. You may not have thought much about it, but while you are helping your loved one, you must also take care of yourself.


Overwhelming concern for a sick loved one may distract you from taking care of yourself. You may find there is conflict between the needs of the patient, your own needs, and the needs of your family. Many caregivers forget to eat, don’t get enough sleep or exercise, and ignore their own physical health concerns. Be sure to make and keep your own doctor appointments, get enough sleep, exercise, eat healthy foods, and keep your normal routine as much as you can. It is important not to feel guilty or selfish when you ask for help or take time for yourself. By taking care of yourself, you will be better able to take care of your loved one.


You can begin by setting limits on what you expect from yourself. Know that caring for someone with cancer can be an overwhelming job. It pays to ask for help before stress builds up. Here are some ways to take care of your own needs and feelings: Plan things that you enjoy:


There are 3 types of activities that you need for yourself:


  • Those that involve other people, such as having lunch with a friend.
  • Those that give you a sense of accomplishment, like exercising or finishing a project.
  • Those that make you feel good or relaxed, like watching a funny movie or taking a walk.


Make an effort to notice and talk about things you do as they happen during the day. Watch the news or take time to read the morning paper. Set aside time during the day, like during a meal, when you do not talk about your loved one’s illness.

Think about joining a support group for caregivers or using counseling services


Talk with a nurse or social worker or contact your local American Cancer Society for services in your area. Talking with other caregivers can help you feel less alone. If you can’t visit a group in person, the American Cancer Society also has the Cancer Survivors Network (CSN), an online community of people whose lives have been touched by cancer. Other organizations have internet-based groups and even online counseling, too. Through online or in person support groups, people can share their stories, offer practical advice, and support each other through shared experiences.


Most importantly, don’t try to do it all yourself. 
Caregiving alone for any period of time is not realistic. Reach out to others. Involve them in your life and in the things you must do for your loved one.

What if I don`t want to be the caregiver?

It’s quite normal to feel overwhelmed, burdened, and even trapped while caregiving. If your family has had troubled relationships in the past, you may wonder “why me?” You may feel that the role was dumped on you without your consent. You may feel unprepared or even unable to manage the responsibilities and feelings that go with it. You may feel pressure from family members, friends, and members of the health care team to provide care, despite having little or no desire or ability to do so.


If you became a caregiver because of other people’s wishes, you need to think about how you feel about being pressured into caregiving. Mixed feelings at the onset of this role can lead to a greater sense of frustration later on. You should decide on your limits and make them known as soon as you can – before the demands of caregiving become a problem. This way you and the patient can get the help you need, and if you have to, make other plans for care. In situations like this, it might be helpful to find someone to help you with caregiving so that you know from the start that the role will be shared. It also may be better to find someone else to act as the primary (main) caregiver.


When others want to help

Although caring for someone with cancer can be fulfilling, it can also be demanding and stressful. Good communication can help you work through tough times, but almost always there is just too much for one person to do. Asking for help or allowing others to help can take some of the pressure off and allow you time to take care of yourself. 


Often family and friends want to help but may not know how or what you need. Here are some tips for including family and friends:


  • Look for areas where you need help. Make a list or note them on a calendar.

  • Hold regular family conferences to keep everyone involved. Use these meetings as updates and care-planning sessions. Include the patient.

  • Ask family and friends when they can help and what jobs they think they can do. You may also contact a person with a certain request. Be very clear about what you need.

  • As you hear back from each person, note it on your list to make sure they have taken care of what you needed.


There are many online resources that can help you manage your job as caregiver, such as the American Cancer Society’s Cancer Survivors Network, the Cancer Support Community, and others listed in the “National organizations and Web sites” section of “To learn more about caregiving and coping”. These offer support for people caring for a loved one who has cancer. Some sites also offer other features, such as group calendars to organize helpers and areas to create personal Web sites that concerned people can access for updates. Examples of these are caringbridge.org, lotsahelpinghands.com, and thepatientpartnerproject.org. Taking full advantage of the resources available to you is another way you can take care of yourself.


Tips for managing the challenges of caregiving
  • Grieve your losses. It's normal to miss the life you and your loved one had before cancer. You may need some time to grieve your losses. Yet, try not to get caught up in focusing on the past and why this is happening to you. Instead, think about what you can do now. Take it one day at a time, understanding there will be both good and bad days.

  • Go easy on yourself. Caregivers often feel the need to do everything right. When you make mistakes, you may feel like you could have done something better. You may also feel guilty about being healthy. Try to let go of the guilt and don't be too hard on yourself. Most of all, recognize that protecting your own health is essential to being a good caregiver.

  • Put family conflict aside. Sometimes hard feelings develop if one caregiver feels they are doing all the work and other family members aren’t chipping in. Everyone reacts differently in this type of situation. Try to be patient with other family members; they are probably doing the best they can do. Don’t try to solve any underlying issues/conflicts while your loved one is struggling to get better. Try to focus on what is most important at this time.

  • Prioritize responsibilities. It helps to make a list of daily tasks and prioritize what needs to be done. Space out your activities with short rest periods, and postpone small jobs. Also, you don’t have to take over all of your loved one's responsibilities. Your loved one probably wants to feel as independent and in control as possible right now. Try to encourage them to be as self-sufficient as they want to be.

  • Make time for yourself. Caregiving can sometimes be confining and a little lonely. You don't have to feel guilty about needing some time for yourself. Your loved one may need the space too. Start out with small increments of time to yourself each day. Take a walk, watch a movie, call a friend, read a book, get a massage, take a warm bath, or listen to music. Even if it's just for a few minutes, doing something you enjoy can help you feel refreshed.

  • Monitor your own health. Your health is just as important as your loved one’s is. Don’t ignore physical and emotional symptoms, such as loss of appetite, difficulty sleeping, or difficulty concentrating. Stay on top of your doctor's appointments and any medications you are taking. Make sure to get enough sleep, exercise regularly and eat well, all which can minimize irritability and fatigue. Also, try mind-body techniques, such as relaxation or deep breathing, to reduce stress.

  • Keep a journal. Many caregivers feel more emotional than usual as they try to cope with a loved one’s cancer. You may feel angry with the cancer itself, the situation, yourself, your loved one, other family members, doctors, etc. These feelings are all normal. It can help to keep a journal or write a letter to release your thoughts and feelings so you can better manage them.

  • Try not to take things personally. At times, your loved one may take some of their anger and frustration out on you. Try to remember that they are going through a difficult time, and are probably scared and confused. You may resent having to be the one who admonishes them when they stray too far from their diet and the one who nudges them to do their exercises. Know they appreciate everything you do, even if they don’t say it all the time.

  • Know your limitations. It's common for caregivers to feel that they aren't doing enough to help. Try not to take on more than you can handle. You may be struggling to balance your caregiving duties with your full time job and other responsibilities. Look into the family medical leave policies at your workplace. Consult with your loved one's doctor to determine if/when professional nursing services may be needed.

  • Accept help. Some caregivers think they are the only person who can do the job. Don't be afraid to share the responsibility with others. When people offer to help, be specific about what you need done, such as cooking, cleaning, shopping, laundry, yard work, etc. If you need financial advice and assistance, contact your hospital social worker. Also, some websites provide calendars and other tools for coordinating help from others.

  • Stay connected. Staying connected with others can help you feel less alone and provide a much-needed emotional outlet. Share your feelings and concerns with family and friends. Join a caregiver support group, where you can talk about your experiences and trade advice. Online social networks can help you feel connected with others without having to leave home. You may also consider speaking with a professional counselor or spiritual leader.

  • Spend time together. Take some time away from cancer-related business to do something fun with your loved one. When you're together, tell your loved one what they mean to you. Not only is it important for your loved one to hear, but it will make you feel better too. Remember that being able to spend time together is a gift.


To learn more about caregiving and coping


The following related information may also be helpful to you. These materials may be ordered from the American Cancer Society as follows:  toll-free number, 1-800-227-2345.


About Caregiving

What You Need to Know as a Cancer Caregiver

Caring for the Patient With Cancer at Home (also in Spanish)

Distress Checklist for Caregivers

Coping Checklist for Caregivers

Coping with cancer and treatment

After Diagnosis: A Guide for Patients and Families (also in Spanish)

Distress in People With Cancer

Anxiety, Fear, and Depression (also in Spanish)

Choosing a Doctor and a Hospital (also in Spanish)

Talking With Your Doctor (also in Spanish)

Understanding Chemotherapy: A Guide for Patients and Families (also in Spanish)

Understanding Radiation Therapy (also in Spanish)

Surgery (also in Spanish)

Nutrition for the Person With Cancer During Treatment (also in Spanish)

Sexuality for the Man With Cancer (also in Spanish)

Sexuality for the Woman With Cancer (also in Spanish)

Advanced Cancer (also in Spanish)

Children and family members

Helping Children When a Family Member Has Cancer: Dealing With Diagnosis (also in Spanish)

Helping Children When a Family Member Has Cancer: Dealing With Treatment (also in Spanish)

Where to Turn - Patient and Family Support Program (brochure)

Job, insurance, money, and legal issues

Financial Guidance for Cancer Survivors and Their Families: In Treatment (also in Spanish)

Health Insurance and Financial Assistance for the Cancer Patient (also in Spanish)

Family and Medical Leave Act (FMLA)

Americans with Disabilities Act: Information for People Facing Cancer

What is COBRA?

Advance Directives



Books


The following books are available from the American Cancer Society. Call them at 1-800-227-2345 to ask about costs or to place your order:


Cancer in the Family

Caregiving: A Step-by-Step Resource for Caring for the Person With Cancer at Home

Couples Confronting Cancer: Keeping Your Relationship Strong

Crossing Divides: A Couple’s Story of Cancer, Hope, and Hiking Montana’s Continental Divide

What Helped Get Me Through: Cancer Patients Share Wisdom and Hope

What to Eat During Cancer Treatment





Other sources of information and support include:



Family Caregiver Alliance (FCA)/National Center on Caregiving
Toll-free number: 1-800-445-8106
Web site: www.caregiver.org

    For free information and resources on long-term caregiving



National Alliance for Caregiving (NAC)
Web site: www.caregiving.org

    Provides information and other resources focused on caregiving issues, as well as www.familycaregiving101.org, a source of answers, new ideas, and helpful advice for caregivers.



National Family Caregivers Association (NFCA)
Toll-free number: 1-800-896-3650
Web site: www.thefamilycaregiver.org

    Offers a free caregiver welcome kit and www.lotsahelpinghands.com – a volunteer coordination service for friends, family, colleagues, and neighbors to help loved ones in need. The program lets a chosen “coordinator” and helpers sign up on an easy-to-use, private group calendar to help with meals, rides, and other tasks needed for life to run smoothly during a crisis.



Well Spouse Association (WSA)
Toll-free number: 1-800-838-0879
Web site: www.wellspouse.org

    A national, non-profit membership organization (dues are charged) which provides emotional support for spouses and partners of chronically ill and/or disabled people.



Cancer Support Community (was Gilda's Club)
Toll-free number: 1-888-793-9355
Web site: www.cancersupportcommunity.org

    Provides support for those living with cancer and their loved ones. Offers information, stress management, and online support groups led by professionals, including some in Spanish; has a special subsite (http://grouploop.org/) for teens and parents.



CancerCare
Toll-free number: 1-800-813-4673
Web site: www.cancercare.org

    Free professional support, such as phone counseling, online support groups, and educational materials, for people with cancer, their loved ones, and caregivers. Also offers CancerCare for Kids at www.cancercareforkids.org or CancerCare’s main number, above. This program is for kids with a parent, sibling, or other family member who has cancer. It offers practical support, education, and counseling to parents and children.



American Association for Marriage and Family Therapy
Telephone: 1-703-838-9808
Web site: www.aamft.org

    Sponsors www.therapistlocator.net which provides referrals to local marriage and family therapists. The site also contains educational materials on helping couples live with illness, as well as other issues related to families and health.



Cancer Hope Network
Toll-free number: 1-877-467-3638
Web site: www.cancerhopenetwork.org

    Volunteers provide free and confidential one-on-one telephone support for people with cancer and family members.



Cancer Legal Resource Center
Toll-free number: 1-866-843-2572
TTY: 213-736-8310
Web site: www.disabilityrightslegalcenter.org/about/cancerlegalresource.cfm

    A non-profit program of the Disability Rights Legal Center offering free and confidential information and resources on cancer-related legal issues to cancer survivors, their families, friends, employers, health care professionals, and others coping with cancer.



National Cancer Institute
Toll-free number: 1-800-422-6237
TTY: 1-800-332-8615
Web site: www.cancer.gov

    An excellent source of up-to-date information about cancer for patients and their families.






NOTE: This information is not intended nor implied to be a substitute for professional medical advice. Always seek the advice of your physician or other qualified health provider prior to making decisions about your treatment. *Inclusion on this list does not imply endorsement by The T.U.F.F Services Ministries*