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What is caregiver anger?

Many caregivers feel angry at some point. They may curse, yell, get irritated, withdraw, or even get physically sick. Caregiver anger usually comes from feeling out of control, overwhelmed, anxious, scared, tired, or stressed. As a caregiver, you may feel angry that others are not helping enough, or angry at yourself for not doing more. You may be angry because of a change in routine or lifestyle.

You may feel that you need more information regarding the cancer and cancer treatment from health care professionals. You may be unhappy with the care your loved one has received or dissatisfied with the way in which healthcare professionals have included you in the patient’s care. You may be angry with other cancer-related issues such as the cost or financial burden. You may feel that the situation is unfair and/or too much. You may experience a sense of loss.

What can I do about my anger?

Here are some tips for dealing with your anger:

  • Try to identify what causes the anger.
  • Get help with caregiving.
  • Do not let anger build up.
  • Talk to someone to express your anger. Try not to hide your feelings. Sharing how you feel helps others understand and gives them a chance to help.
  • Recognize when you’re angry.
  • Explore what’s causing the feeling. There may be perfectly good reasons you’re upset.
  • Remove yourself from the situation. Take a short break when you need to.
  • Find someone that you can talk to about your feelings. This could be a trusted friend, a mental healthcare professional, or counselor.
  • Avoid lashing out at others.
  • Try putting yourself in the other person's shoes.
  • Use your anger to motivate you to take action.
  • Find a support group for caregivers.
  • Ask friends and family to distract you when you are angry.
  • Avoid abusing alcohol or other substances to relieve your anger.
  • Use physical activity to release your anger.
  • Try using relaxation techniques, massage, or art and music therapy.

When should I talk to my doctor about my anger?

Call 911 or your health provider immediately if you feel you might harm yourself or someone else. Also, contact your healthcare provider if you:

References

  • Cancer.Net. (2022). How to Cope with Anger. Retrieved from https://www.cancer.net/coping-with-cancer/managing-emotions/how-cope-wi…
  • Levoy, K., Wool, J., Ashare, R.L., Rosa, W.E., Barg, F.K., Meghani, S.H. (2022). “It’s rougher on me than it is on him”: Family caregiver-generated and prioritized illness concerns while patients undergo cancer treatments. JCO Oncology Practice, 18(4), e525-e536. doi: 10.1200/OP.21.00164.
  • Zauszniewski, J.A., Burant, C.J., MartinR.J., Sweetko, J.S., DiFranco, E. (2022). Caregivers' use of personal and social resourcefulness: Differences by care recipient condition. Western Journal of Nursing Research, 44(3), 288-295. doi: 10.1177/01939459211050951.
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What is caregiver anxiety?

Anxiety is a feeling of uneasiness, discomfort, or impending doom. It is common for people taking care of someone with cancer to experience anxiety. It can be caused by a loss of control, fear for the patient’s well-being, worry over family finances, uncertainty about the future, and feelings of being overwhelmed.

Caregivers with anxiety can have physical and emotional symptoms. Emotionally, you may feel tense, worried, wary, agitated, or distracted. Physically, you may tremble, sweat, or shake. You may be short of breath, have a rapid heart rate, or feel like your heart is pounding in your chest. You may have an upset stomach, headaches, loss of appetite, nausea, or difficulty sleeping.

What can I do about my anxiety?

Here are some tips you may find helpful:

  • Accept help with caregiving.
  • Try to identify what "triggers" your anxiety.
  • List things that have helped in the past, and then try them out.
  • Talk about your feelings with others. Be honest. Try to describe how you're truly feeling. Ask your family and friends for ideas on managing your anxiety.
  • Join a support group or online forum for caregivers.
  • Set realistic goals.
  • Learn about the patient’s type of cancer, treatment, and what to expect. You can research this yourself or ask someone to do it for you.
  • Do things you enjoy or find distracting, like listening to music.
  • Try using controlled breathing or guided imagery to relax. Consider asking a friend to help with this.
  • Surround yourself with friends if that relaxes you.
  • Seek social support.
  • Try prayer or meditation.
  • Get exercise. For example, go for a walk with a friend.
  • Spend time outdoors.
  • Get a massage.
  • Eat well.
  • Limit caffeine, including coffee, colas, black teas, and chocolate.
  • Avoid alcohol.
  • Take care of your own health.
  • Ask your doctor for a counseling referral, or talk to him or her about medications for anxiety.
  • Take a break from caregiving – get respite.
  • Make positive statements, and increase positive thoughts.

When should I talk to my doctor about my anxiety?

Talk to your doctor if you have:

  • Constant fearfulness, worry, or impending doom.
  • Depression that lasts longer than two weeks.
  • Trouble eating – gaining or losing weight.
  • Shortness of breath that keeps coming back.
  • Sleep problems – too much sleep or not enough sleep.
  • Heart racing or beating hard in the chest.
  • Frequent headaches or bodily pain.
  • Constant irritability.
  • Excessive sweating.
  • Alcohol or drug abuse.

References

  • Cao, Q., Gong, J., Chen, M., Lin, Y., Li, Q. (2022) The dyadic effects of self-efficacy on quality of life in advanced cancer patient and family caregiver dyads: The mediating role of benefit finding, anxiety, and depression. Hindawi Journal of Oncology, 2, 3073358.
  • Deshields, T.L., Asvat, Y., Tippey, A.R., Vanderlan, J.R. (2022). Distress, depression, anxiety, and resilience in patients with cancer and caregivers. Health Psychology, 41(4), 246-255.
  • Kusi, G., Atenafu, E.G., Mensah, A.B.B., Lee, C.T., Viswabandya, A., Puts, M., Mayo, S. (2023). The effectiveness of psychoeducational interventions on caregiver-oriented outcomes in caregivers of adult cancer patients: A systematic review and meta-analysis. Psychooncology, 32(2), 189-202.
  • Forst, D.A., Kaslow-Zieve, E.R., Hansen, A., Mesa, M. Landay, S.L., Quain, K.M., Sereno, I., El-Jawahri, A., J Greer, J.A., Temel, J.S., Jacobs, J.M. (2023). Characterizing distress and identifying modifiable intervention targets for family caregivers of patients with malignant gliomas. Journal of Palliative Medicine, 26(1), 17-27.
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What is substance abuse?

Substance abuse is the overuse of alcohol, illegal drugs, prescription drugs, or over-the-counter medications. The line between use and abuse is not always clear. A person has to decide where the line is for him or herself.

Substance abuse may feel like a loss of control, an inability to stop using a substance once you start, a dependence on the substance, and/or cravings for it. You may have a strong urge to which you cannot "Just say no." You may find you need more and more of the substance to get an effect. And if you stop using it, you may experience nausea, sweating, shaking, vomiting, and anxiety.

Caregivers tend to have higher levels of stress, anger, anxiety, depression, fatigue, loneliness, sleep problems, and fear. This puts you at greater risk of mental and physical health problems, including substance abuse.

What can I do to avoid substance abuse?

To prevent substance abuse:

What can I do if I have a problem with substance abuse?

To get help with substance abuse:

  • Admit the problem.
  • Talk openly with your doctor.
  • Call your local Alcoholics Anonymous (AA) hotline or go to an AA meeting.
  • Call the National Drug & Alcohol Treatment Hotline at 800-662-HELP.

How can I talk to others about substance abuse problems?

Here are some ideas for talking with family:

  • Be open about how caregiving is affecting you. Talk about your feelings.
  • Be honest if you’re worried about how you’re using alcohol and/or other substances. Talk about how it’s affecting you.
  • Ask your family how it’s affecting them.
  • Ask your family to help you find help.
     

Where can I get more information on substance abuse?

Here are some helpful websites:

References

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What is caregiver burnout and stress?

Taking care of another person can be stressful. Everyone has some stress, but too much can harm your health, relationships, and enjoyment of life. Caregiver burnout happens when you are in a state of stress or distress for a prolonged period of time. It can affect your mood and make you feel tense, angry, anxious, depressed, irritable, frustrated, or fearful. Caregiver burnout can make you feel out of control, unable to focus, unsatisfied with work, or lonely. Caregiver stress and burnout can also cause physical symptoms like sleep problems, muscle tension (back, shoulder, or neck pain), headaches, stomach problems, weight gain or loss, fatigue, chest pain, heart problems, hair loss, skin problems, or a colds and infections.

WARNING SIGNS

Get help from a healthcare provider if you are:

What causes caregiver burnout and stress?

These things can lead to caregiver stress or make it worse:

  • Fear & uncertainty: Cancer treatment isn’t certain. It’s hard not to worry about the person with cancer and the future.
  • Shifting roles: Caregiving can change relationships. This isn’t bad. It can be upsetting when someone who has been a source of strength is suddenly vulnerable or when you find yourself making decisions somebody else used to make.
  • Too much to do: As a caregiver, you may feel overwhelmed by all you have to do, and as though everything is falling on your shoulders.
  • Financial pressure: The costs of cancer care can be a source of stress. Also, you and the patient may be unable to work full-time—or at all.
  • Loneliness & isolation: Caregiving takes time. You may find you don’t have time to spend with friends, take part in outside activities, or pursue hobbies.
  • Little time alone: Everyone needs time for themselves. This can be difficult to get when you are caring for someone with cancer.
  • Constant demands: Being on call around-the-clock can be especially hard.
  • Guilt: You may feel bad that you can’t give more, or you may feel that you are short-changing other family members and friends. While all these things are common among caregivers, there are things you can do to lessen your stress.

How can I deal with my burnout and stress?

Here are some tips for dealing with your caregiver burnout or stress:

  • Recognize the warning signs of stress early. Never dismiss your feelings as "just stress."
  • Ask for help with caregiving! Accept it when it’s offered. Take time for yourself. Ask a friend or family member, or hire someone to stay with your loved one to give you time off to shop, go to a movie, or visit a friend. Try to prioritize taking care of yourself. Eat well, drink enough water and other fluids.
  • Try to get some exercise every day, even if it’s just a walk around the neighborhood.
  • Get regular medical and dental checkups.
  • Identify sources of stress and write them down. This is especially helpful for feelings that you don’t want to share. Identify things you can improve. Try prayer and/or meditation to accept the things you can’t change.
  • Make a list of priorities for each day. Set realistic goals. If you cannot meet these goals, it is okay to complete them the next day. Give yourself permission to grieve, cry and express your feelings.
  • Try meditation, yoga, music, or deep breathing to relax.
  • Talk to someone—a friend, counselor, family member, or clergy member.
  • Talk to a professional if your stress is overwhelming. Watch funny memes, videos, or movies. There is evidence to show that laughter helps offset some caregiver stress and burnout symptoms. Join a support group like My Cancer Circle, which is especially for caregivers of people with cancer.
  • Make a list of the good things that have happened. Give yourself credit for what you’re doing. Forgive yourself when you don’t do things as well as you want. Remember that you are doing the best that you can.
  • Learn to say "no" when someone asks you to do something that you don’t want to do, and/or that may be draining (like hosting a holiday meal).
  • Educate yourself about what to anticipate with your loved one’s cancer treatment. Get information from your doctor, the Internet, local library, bookstores, or local support groups. This may help with feelings of uncertainty. You’ll find a list of valuable resources here.
  • Find someone who can help you understand all of the medical information. This could be a healthcare professional, someone in a support group, or someone who has been through the same thing. Keep a list of questions to discuss with the patient’s healthcare providers.
  • Try to plan for legal and financial matters. Planning now will lessen stress later. Involve other family members in these activities and decisions.

When should I talk to my doctor?

Call your doctor or 911 immediately if you feel like you could hurt yourself or someone else. Talk to your doctor if you have any of these feelings for more than two weeks:

  • Depression
  • Anxiety
  • Fatigue
  • Generalized anger

References

  • Hee, M., Songjah, J., Lee, S. (2022). Effect of laughter therapy on mood disturbances, pain, and burnout in termally ill cancer patients and family caregivers. Cancer Nursing. Epub before print. DOI: 10.1097/NCC.0000000000001162
  • Koumarianou, A., Symeonidi, A., Kattamis, A., Linardatou, K., Chrousos, G., & Darviri, C. (2021). A review of psychosocial interventions targeting families of children with cancer. Palliative & Supportive Care, 19(1), 103-118. https://doi.org/10.1017/S1478951520000449
  • Yaman, A., & Büyükyılmaz, F. (2022). The effect of relaxation exercises on burden, burnout, and anxiety levels in palliative caregivers. Perspectives in Psychiatric Care, 58(3), 1089-1095. DOI: 10.1111/ppc.12906
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What is caregiver depression?

Depression is a deep sadness that lasts more than two weeks and gets in the way of daily activities. If you are depressed or have depressive symptoms, you may cry often, have problems sleeping, eat too much or too little, feel hopeless, helpless, sad, guilty, worthless, and/or sluggish. You may have trouble feeling pleasure, or find yourself pulling away from family and friends. You may even want to hurt yourself. (Call your doctor or 911 immediately if you do.)

Feeling sad is normal when dealing with cancer. People can usually deal with this short term. But, ongoing feelings of depression need to be treated with counseling and/or medication. Caregiver stress and overload can put you at risk of depression. Studies have shown that caregivers have higher levels of depression than non-caregivers. It is important to deal with depression or depressive symptoms because your ability to care for your loved one may be negatively affected.

What can I do about my depression?

Here are some tips for dealing with depression:

  • Don’t be afraid to ask for help. Talk to a healthcare provider if your depression lasts more than two weeks.
  • Tell your doctor exactly how you feel, and what medications you are taking.
  • Ask for a referral to a psychologist, clinical social worker, counselor and/or support group for help.
  • Learn about the symptoms of depression and recognize if you have them.
  • Learn how to effectively cope with your stress. Know what works to lower your stress.
  • Get help with caregiving so you have time for yourself.
  • Stay active and try to keep as much of a regular routine as you did before your loved one was diagnosed with cancer.
  • Try to understand what’s causing your depression.
  • Talk to friends or family. Try to describe your feelings and how they are affecting you. Ask your family and friends for ideas to help you deal with your depression.
  • Avoid being isolated. Join a support group.
  • Talk to a counselor, pastor, priest, or psychologist.
  • Cry and express your feelings. You can do this with a friend or use a journal.
  • Try meditation, massage, and relaxation exercises.
  • Try focusing on something other than how you feel.
  • Find a creative outlet like cooking, dance, painting, or music.
  • Avoid drinking alcohol.
  • Eat a nutritious meal. Seek professional help if you are having eating problems.
  • Prioritize getting enough sleep.
  • Engage in a hobby each day that brings you pleasure.
  • Be around other people in restful, relaxing situations.
  • Get exercise and spend time outside.
  • Ask family and friends to stay with you during difficult times, check in with you often, do enjoyable activities with you, and help with stressful tasks like doctor visits, bill paying, or household chores.
  • If you are prescribed medication for depression, take it as directed.

When should I talk to my doctor about my depression?

Call 911 or your doctor immediately if you feel you might harm yourself or someone else, and/or call a regional suicide hotline.

Contact your doctor if you experience any of these symptoms most of the time for two or more weeks:

  1. Depressed mood every day for most of the day
  2. Little interest or pleasure in most activities
  3. Noticeable weight loss, gain, or a major change in appetite
  4. Sleep problems
  5. Agitation or the feeling of being “slowed down”
  6. Excessive tiredness or lack of energy
  7. Feelings of worthlessness or guilt
  8. Inability to concentrate or make decisions
  9. Frequent thoughts of death or suicide

References

  • Cheng, Q., Xu, B., Ng, M.S.N., Duan, Y., So, W.K.W. (2022). Effectiveness of psychoeducational interventions among caregivers of patients with cancer: A systematic review and meta-analysis. International Journal of Nursing sStudies, 127, 104162. https://doi-org.proxy1.cl.msu.edu/10.1016/j.ijnurstu.2021.104162
  • Lei, F., Lee, E., Shin., J., Lee, S.Y. (2023). Non-pharmacological interventions on anxiety and depression in lung cancer patients’ informal caregivers: A systematic review and meta-analysis. PLoS One, 18(3) e0282887. doi: 10.1371/journal.pone.0282887.
  • Li, Y., Li, J., Zhang, Y., Ding, Y., Hu, X. (2022). The effectiveness of e-Health interventions on caregiver burden, depression, and quality of life in informal caregivers of patients with cancer: A systematic review and meta-analysis of randomized controlled trials. International Journal of Nursing Studies, 127, 104179. https://doi.org/10.1016/j.ijnurstu.2022.104179
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Why is it important to pay attention to my eating now?

Eating right can be difficult when you’re caring for someone with cancer. Appointments may get in the way of meals. You might not like the food at the hospital or transfusion center. You may not have time or energy to cook. If your loved one is not eating on a regular schedule, you may be less motivated to prepare meals. But caregiving can stress your body and spirit. You're at greater risk of getting sick. So is the person with cancer. Eating well will help you both stay healthy. Nourished bodies can help you manage stress. A healthy diet can help protect you from heart disease, bone loss, diabetes, high blood pressure, and other illnesses. Heart-healthy eating patterns and Mediterranean diets are good for overall health.

How can I eat better?

Here are some tips for eating right:

  • Get help with caregiving so you have time to eat well.
  • Plan ahead for meals. Prepare some meals in advance. Consider asking a friend to help, try an online meal-planning tool (e.g., Interactive Menu Planner, Healthy Eating Plate, MyPlate Weekly Meal Planner), or a food delivery service (check to see what services may be available in your area).
  • Avoid skipping meals. Try to eat breakfast. Pack a lunch if you’re going to be taking the patient to treatment during the day.
  • Try to get a variety of healthy foods and beverages each day. Eat lots of fruits and vegetables. Try to eat 2 cups of fruit and 2.5 cups of vegetables daily (4-5 cups per day).
  • Vary your protein choices.
  • Read food labels so you know what you are eating, and try to avoid saturated fats (cheeses, some meats, whole milk, butter, etc.), trans-saturated fats (snack foods, frozen dinners, cakes, cookies, margarine, fried foods), cholesterol, and added sugars.
  • Try incorporating the Mediterranean diet, which includes little red meat and emphasizes whole grains, fruits, vegetables, fish, nuts, olive oil, and healthy fats.
  • Limit your intake of alcohol.
  • Drink 3 cups per day of fat-free or low-fat milk or equivalent milk products.
  • Eat plenty of fish and nuts.
  • Consume less than 10% of calories from added sugars.
  • Cook with vegetable oils (olive, canola, sunflower, soy, and corn) rather than butter.
  • Drink low-calorie beverages without added sugars or sweeteners.
  • Drinking 6-8 glasses of water per day.
  • Limit salt.
  • Consume less than 2,300 mg per day of sodium.
  • Keep healthy snacks like fresh fruit, unsalted nuts, or low-fat string cheese on hand.
  • Keep a food diary for three days. Write down what, when, where, and how much you eat. Your food diary will help you understand your eating habits and what areas you need to work on.

Where can I get more information on eating well?

Here are some helpful websites:

You might also consider asking your doctor or a nutritionist for help in planning a balanced diet for you, given your age and any chronic illness restrictions you might have.

References

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Long-distance caregiving presents unique challenges. If you find yourself in the long-distance caregiving role, here is a summary of things to keep in mind.

  1. Know what you need to know as a long-distance caregiver
    Experienced caregivers recommend that you learn as much as you can about your family member or friend's illness, medicines, and resources that might be available. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier. Make sure at least one family member has written permission to receive medical and financial information. To the extent possible, one family member should handle conversations with all health care providers.

    Try putting all the vital information in one place — perhaps in a notebook or in a shared, secure online document. This includes all the important information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers, and keep the information up to date.
     
  2. Plan your visits with an aging parent or relative
    When visiting your loved one, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your family member or friend ahead of time and finding out what he or she would like to do. Also, check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to get some new winter clothes or visit another family member? Could your father use help fixing things around the house? Would you like to talk to your mother's physician? Decide on the priorities and leave other tasks for another visit.
     
  3. Activities to do when visiting an aging parent or relative
    Try to make time to do things unrelated to being a caregiver. Maybe you could find a movie to watch with your relative or plan a visit with old friends or other family members. Perhaps they would like to attend worship services. Offer to play a game of cards or a board game. Take a drive, or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone, and it builds more family memories. And keep in mind that your friend or relative is the focus of your trip — try to let outside distractions wait until you are home again.
     
  4. Get in touch and stay in touch
    Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff so several relatives can participate in one conversation and get up-to-date information about a relative's health and progress. If your family member is in a nursing home, you can request occasional teleconferences with the facility's staff. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. You might also talk with a family member or friend in the community who can provide a realistic view of what is going on. In some cases, this will be your other parent. Don't underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents' needs.
     
  5. Help an aging parent stay in contact from afar
    For one family, having a private phone line installed in their father's nursing home room allowed him to stay in touch. For another family, giving Grandma a cell phone (and then teaching her how to use it) gave everyone some peace of mind. These simple strategies can be a lifeline. But be prepared — you may find you are inundated with calls or text messages. It's good to think in advance about a workable approach for coping with numerous calls.
     
  6. Organize paperwork for an aging parent
    Organizing paperwork is one way that a long-distance caregiver can be a big help. An important part of effective caregiving depends on keeping a great deal of information in order and up to date. Often, long-distance caregivers will need access to a parent’s or relative's personal, health, financial, and legal records.

    Getting all this material together is a lot of work at first, and from far away it can seem even more challenging. But once you have gathered everything together, many other caregiving tasks will be easier. Maintaining current information about your parent’s health and medical care, as well as finances, home ownership, and other legal issues, lets you get a handle on what is going on and allows you to respond more quickly if there is a crisis.

    As you're getting started, try to focus on gathering the essentials first, and fill in the blanks as you go along. Talk with the older person and the primary caregiver about any missing information or documentation and how you might help to organize the records. It is also a good idea to make sure that all financial matters, including wills and life insurance policies, are in order. It will also help if someone has a durable power of attorney (the legal document naming one person to handle financial and property issues for another).

    Your family member or friend may be reluctant to share personal information with you. Explain that you are not trying to invade their privacy or take over their personal lives — you are only trying to assemble what will be needed in the event of an emergency. Assure them that you will respect their privacy, and then keep your promise. If they are still uncomfortable, ask if they would be willing to work with an attorney (some lawyers specialize in elder affairs) or perhaps with another trusted family member or friend.

    For a list of documents and other information to gather, see Getting Your Affairs In Order. Find more information about advance care planning.
     
  7. Learn additional tips for caregiving.
    Whether you are the primary caregiver or a long-distance caregiver, getting some caregiving training can be helpful. As with a lot of things in life, many of us don't automatically have a lot of caregiver skills. For example, training can teach you how to safely move someone from a bed to a chair, how to help someone bathe, and how to prevent and treat bed sores, as well as basic first aid. Information about training opportunities is available online. Some local chapters of the American Red Cross might offer courses, as do some nonprofit organizations focused on caregiving. Medicare and Medicaid will sometimes pay for this training.
     
  8. Gather a list of resources in your aging relative's neighborhood
    Searching the internet is a good way to start collecting resources. Check with a local library or senior center, the Area Agency on Aging, or the Eldercare Locator to find out about sources of help.

Find more caregiving resources.

References

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What should I prepare for?

People with cancer sometimes have serious, even life-threatening unexpected events. These can be caused by the disease or treatment. You are less likely to be surprised by emergencies if you’ve learned about the person’s illness and know what to expect and what to watch for. You’re also less likely to be caught off guard if you stay informed about expectations of the disease, common complications, and adverse events from their medications or chemotherapy.

How can I prepare for emergencies?

Some caregivers prepare a notebook or checklist so that, if ever needed, all materials are collected in one location.

There are lots of ways to prepare:

  • Make sure that the patient’s phone has important emergency numbers on “speed dial," including 911, yourself, other family, friends and support people, healthcare providers, and neighbors.
  • Know where and who to call in the evening and on weekends.
  • Know the nearest hospital or patient’s preferred hospital. (Emergency Department and Urgent Care)
  • Make sure the patient has an emergency pack ready with his or her detailed medication list, medical insurance cards, identification, medical allergies, Social Security number, and emergency contact information (Medicare card if applicable). Include water for both the patient and yourself.
  • Make sure you have a “Caregiver Go Bag” ready in advance so that you have what you need in case of an unexpected emergency room visit. Items to pack: phone charger, change of clothes, healthy snacks, and anything that may help pass the time during long waits (books, a deck of cards). Caregiver Action Network has some tips for an effective emergency room visit.
  • Keep a list of important names and numbers handy. Include the patient’s healthcare providers (by role), home healthcare agencies, local caregivers, and the patient’s other family, friends, neighbors, or support people and local clergy.
  • Keep a list of medical conditions and a list of allergies.
  • Keep an up-to-date medication record for the patient on hand in case you need to speak with his or her healthcare providers.
  • Know the adverse events for the patient’s medications. Know what signs or symptoms should be provided to health care providers.
  • Know what to watch for, early signs of a serious problem.
  • If you have a Healthcare Proxy, keep a copy with you. The Healthcare Proxy shows your legal power to make medical decisions if the patient can’t.
  • Have a list of banks and financial counselors and set up a financial power of attorney.
  • Be sure you have the exact address of the patient in case you need to call an ambulance for him or her. Be prepared to tell emergency services how to enter the home and where a key is, if necessary.
  • Set up a phone tree to keep people in the patient’s support network up-to-date.
  • Know the health care services in the community.

What if I live far away?

If you are caring for a loved one from far away, be sure to have an emergency plan in place regardless if you feel one is needed. Unexpected emergencies happen, be prepared. This can reduce the stress and anxiety for the patient, other caregivers, and yourself.

  • Have a designated backup emergency contact who is within a short distance of the patient.
  • Ensure you have the emergency contact numbers (home, cell, work).
  • Talk with other caregivers on the emergency list often to keep them updated on the patient’s status changes so they can be prepared.
  • The designated emergency backup person should know where the emergency packet of information is so they can quickly retrieve it.
  • Keep the emergency packet in the same place and be sure to update this information frequently or as changes are made to care.
  • Have systems in place so that the patient can reach you or others in an emergency, a call system such as LifeAlert.
  • Be accessible and keep your phone with you.
  • Make sure the patient knows how to reach you at all times.
  • If you are not available for calls, be sure the patient knows this, and they know who to call for backup in an emergency or other mechanisms to reach you

When do I call 911?

Call 911 if you know that the patient:

  • Is unconscious, confused, delirious, and/or hallucinating
  • Has severe chest pain
  • Has severe abdominal pain
  • Is having trouble breathing, is short of breath
  • Has no pulse
  • Is bleeding severely, vomiting blood, or having a large amount of blood in stools
  • Has had a seizure
  • Has had a bad fall and is unable to get up
  • Has a severe headache and slurred speech
  • Is numb or lost use of arm or leg
  • Is unable to walk

References

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What are family meetings?

Family meetings can help you make sure that everyone understands the situation. Caring for someone with cancer is not a one-person job. You need others to pitch in. Even if they don’t give direct care, the time you spend caregiving may affect them. Meetings are a way to keep everyone informed and involved. Family meetings can be a good place to problem-solve and share opinions. Sometimes, doctors and nurses hold meetings to help the family understand the diagnosis and treatment. Include those who will be involved in caregiving.

Not all family meetings go smoothly. Feelings about the person’s cancer diagnosis and future, bad past relationships, and poor communication can get in the way. But the results can be positive. It may be valuable to discuss the roles each will assume in the patient’s care.

When should we have a family meeting?

You should have a family meeting when:

  • Your loved one is diagnosed.
  • You need to make decisions.
  • When there are transitions from one phase of care to another
  • You need to solve problems.
  • The health of the patient changes.
  • There is a need to change the setting of care (home, nursing home, hospice)
  • When a caregiver’s roles/responsibilities change (e.g., a new caregiver is added, or a caregiver is no longer able to assume their responsibilities).

Some families meet on a regular basis to share news, deal with issues as they come up, make decisions, and talk about their feelings and needs. These meetings can also serve as a sense of support for each other.

Who should be at our family meetings?

Invite everyone who will be caring for the person with cancer, including family members, close friends, neighbors, and paid caregivers. Consider including family and friends who live outside the area. There are ways for them to help from a distance.

A big decision is whether your loved one should be at every family meeting. On one hand, the patient needs to voice his or her ideas and concerns. On the other hand, family members and friends may not be as frank around him or her. If you don’t include the person being cared for, sit down with them before so that you can properly advocate for their needs/desires. Sit down with them after the meeting so that they stay in the loop.

How do we make our family meetings work?

Here are some tips:

  1. Review the tips on talking with family & friends about caregiving. Consider sharing these with everyone before the meeting.
  2. Hold the family meeting in a neutral and comfortable place. This could be someone's home, office, a room at the doctor’s, the phone, FaceTime, Skype, or Zoom.
  3. Pick a time and place when you will not be interrupted. Ask people to turn off their cell phones or put them on vibrate. If small children will be present, have a sitter watch them in a different part of the house.
  4. Consider having an “outsider” moderate the meeting. A social worker, pastor, or nurse may be more able to keep the meeting on track.
  5. Prepare an agenda and give it out before the meeting. Put the most important items first. For example, you may want to discuss:

    - Patient’s health status (especially any changes) or latest report
    - Goals of treatment/care
    - Daily caregiving needs
    Financial issues
    - Decision-making / problem-solving
    - Individual roles
    - Fears / Stressors / Barriers
    - Primary caregiver support needs
    - Patient concerns or wishes
     
  6. Focus on the immediate problems and the care of the patient.
  7. Put a time limit on each item. For example, "We will talk for 20 minutes about money and then we need to move on to helping with housework." Ask someone to keep track of the time.
  8. Give each member of the group space and time to talk. If they do not want to talk, that is okay.
  9. Prepare for “difficult” people. If you think some of the attendees might bring personal issues to the meeting, talk to them in advance. Define the limit that this meeting has a preset agenda and certain topics are off limits. If you have an outside moderator leading the meeting, give them a heads up.
  10. Prepare for disagreements. The family may not agree on some things. If you can’t reach an agreement, that is okay. Decide to try it one way for a month and set a time to talk again about how things are working. Keep an open mind, compromise, and be flexible.
  11. Have someone take notes or make a recording of the meeting. The note-taker should write down decisions and assignments. Give everyone a copy of the notes after the meeting.
  12. Make sure to assign people tasks they can do well. For example, ask your accountant to review bills and expenses.
  13. Remember that you can’t solve everything in one meeting. At the end of the family meeting, set up a time and a place for the next one.
  14. Be sure there is a summary of the meeting and that everyone understands. Family meetings require communication skills.
  15. Give emotional support during the meeting. Provide the information that individuals need to be of assistance
  16. Open questions should be asked, and constructive commenting should occur.
  17. Be diligent about following up. When you meet again, start by reviewing the notes and decisions from the previous meeting.

References

  • Littell, R.D., Kumar, A., Einstein, M.H., Karam, A., & Bevis, K. (2019). Advanced communication: a critical component of high quality gynecologic cancer care: A Society of Gynecologic Oncology evidence based review and guide. Gynecologic oncology, 155(1), 161-169.
  • Ghoshal, A., Salins, N., Damani, A., Chowdhury, J., Chitre, A., Muckaden, M.A., ... & Badwe, R. (2019). To tell or not to tell: Exploring the preferences and attitudes of patients and family caregivers on disclosure of a cancer-related diagnosis and prognosis. Journal of global oncology, 5, 1-12.
  • Jung, M.Y., & Matthews, A.K. (2021). A systematic review of clinical interventions facilitating end-of-life communication between patients and family caregivers. American Journal of Hospice and Palliative Medicine®, 38(2), 180-190.
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What is caregiver fatigue?

Fatigue is an overwhelming sense of tiredness. If you are fatigued, you may have little energy to do the things you normally do - even if you are getting enough sleep. You may feel tired all the time, weak, worn out, slow, or heavy. You may also feel sad, irritable, and frustrated. Fatigue can affect your quality of life, mood, relationships, and performance. You should deal with symptoms of fatigue as this can impact the care you are able to deliver to your loved one.

Caregivers are at risk of fatigue from burnout and stress, poor sleep, poor nutrition, and not enough exercise.

What can I do about my fatigue?

Here are some tips:

  • Allow yourself to get enough sleep, roughly 8 hours of sleep a night.
  • Nap no more than 30-45 minutes in the late morning or early afternoon.
  • Stay active during the day. Get at least 15 minutes of exercise every day.
  • Try not to overload your daily to-do list. Be realistic about what you can accomplish each day.
  • Space out your activities with periods of rest.
  • Make time for things you enjoy. Read a book or take a relaxing bath.
  • Try relaxation exercises or meditation.
  • Eat a healthy diet. Have healthy snacks around, like a bowl of fruit, vegetables, or cheese. Avoid fatty and fried foods, especially at bedtime.
  • Drink water or beverages without caffeine to keep hydrated. Avoid caffeine after 3 pm, including coffee, colas, black teas, and chocolate.
  • Join an online or in-person support group. Support groups can provide suggestions and reassurance in a safe environment.
  • Talk to others about your fatigue.
  • Get help with caregiving and household chores so you can take breaks. Consider respite care if needed.

When should I talk to my doctor about my fatigue?

Talk to your doctor if you are:

  • Unable to get out of bed for 24 hours
  • Having a hard time focusing while talking, reading, watching TV, etc.
  • Unable to do your usual daily activities
  • Have severe chills or sweats
  • Have a temperature above 100.9 F (38.3 C) or a temperature higher than 100.4 F (38.0 C) that lasts for more than an hour
  • Are short of breath

Also, let your doctor know:

  • When your fatigue started
  • If it’s gotten worse
  • What helps or makes it worse
  • How it affects your activities

References

  • Zheng, Y., Cotton, A.C., He, L., & Wuest, L. G. (2021). Spirituality-integrated interventions for caregivers of patients with terminal illness: A systematic review of quantitative outcomes. Journal of Religion and Health, 60, 2939–2959 (2021). https://doi.org/10.1007/s10943-021-01221-w
  • Faieta, J., Sheehan, J., & DiGiovine , C. (2022). Mhealth interventions to improve health and quality of life related outcomes for informal dementia caregivers: A scoping review. Assistive Technology, 34(3), 362-374, DOI: 10.1080/10400435.2020.1829174
  • Langenberg, S.M.C.H., vanHerpen, C.M.L., van Opstal, C.C.M., Wymenga, A.N.M., van der Graaf, W.T.A., Prins, J.B. (2019). Caregivers’ burden and fatigue during and after patients’ treatment with concomitant chemoradiotherapy for locally advanced head and neck cancer: A prospective observational pilot study. Supportive Care in Cancer, 27(11) 4145-4154
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What is caregiver fear and uncertainty?

Uncertainty is the inability to know what will happen in the future. Cancer and cancer treatment can be scary and unpredictable. Feelings of fear and uncertainty can be triggered by not knowing how the disease will impact the patient and family physically, emotionally, and financially or how the illness may impact employment. Changing roles may also cause anxiety. You may also fear losing your loved one. Feelings of fear and uncertainty among caregivers are normal. There are many things about cancer care that is not predictable. Sometimes uncertainty can change the plans people had, such as retirement or travel.

Family caregivers need information to reduce fear and uncertainty. But, they can become a problem if the caregiver feels he or she has no control over life or is overly anxious, angry, depressed, or stressed as a result. Sometimes this comes from a lack of information, so be sure to get the information you need and want. This will give you a better sense of control.

What can I do about my fear and uncertainty?

Here are some tips:

  • Be sure you ask for information and understand the disease and treatment.
  • Talk to the patient’s healthcare provider about what to expect from treatment and the disease. Then prepare to use the information to the best of your abilities.
  • Replace expectations with plans and prepare for different possibilities.
  • Ask a friend or family member to help find information on treatment and the disease process (check sources like the American Cancer Society and National Cancer Institute).
  • Try not to let your emotions and fears sway your decisions. Seek out the information you need to make good decisions.
  • Don’t try to deny your fear and uncertainty. It is normal. Talk about it with a friend, pastor, or counselor. Talk about it with your loved ones and health care team.
  • Try to avoid thinking about "what if's." Do your best to focus on the present rather than focusing on the uncertain future.
  • Try to focus on the aspects of your life that you do have control over.
  • Acknowledge your fears but do not let them take control.
  • Find relaxing ways that give your mind a break. Distract yourself with a book, a movie, or a friendly conversation, or ask a friend to spend time with you doing something fun.
  • Take a walk, and find positive things in nature.
  • Practice mindfulness.
  • Work towards having a positive perspective. Try writing down a list of things you’re thankful for.
  • Look at your positive list when you are feeling fearful.
  • Find an online or in-person support group.
  • Rely on your faith and members of your church if applicable.
  • Figure out what helps you manage stress and utilize stress reduction techniques.
  • Gain confidence in your coping skills.
  • Try to stay up to date with information about the patient’s status – this will help reduce uncertainty.
  • If your fear becomes overwhelming and lasts for more than two weeks, consider consulting a counselor or social worker.

When should I talk to my doctor about my fear and uncertainty?

Talk to your doctor if you have:

  • Depression lasting two or more weeks
  • Anxiety and fears that gets in the way of daily activities
  • Sleep problems
  • Difficulty concentrating in your daily life
  • Overwhelming fears of uncertainty
  • Fear or uncertainty that interferes with your appetite

References

  • Guan, T., Qan’ir, Y. & Song, L. (2021). Systematic review of illness uncertainty management interventions for cancer patients and their family caregivers. Support Care Cancer 29, 4623–4640. https://doi.org/10.1007/s00520-020-05931-x
  • Petursdottir, A. B., Rayens, M. K., Sigurdardottir, V., & Svavarsdottir, E. K. (2021). Long-term effect of receiving a family strengths-oriented intervention on family cancer caregiver stress, anxiety, and depression symptoms: A longitudinal quasi-experimental study. Journal of Family Nursing, 27(2), 114-123. DOI 10.1177/1074840721994332
  • Guan, T., Chapman, M.V., de Saxe Zerden, L. et al. Correlates of illness uncertainty in cancer survivors and family caregivers: a systematic review and meta-analysis. Support Care Cancer 31, 242 (2023). DOI 10.1007/s00520-023-07705-7
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Why is it important to exercise now?

Exercise is important for good health. Just a few minutes of activity a day can improve your overall well-being. It can give you more energy, reduce stress, and lift your mood. It can also decrease your risk of heart disease, colon cancer, diabetes, osteoporosis, and high blood pressure. Caregivers that exercise regularly are less likely to be depressed, anxious, angry, or stressed.

How do I start exercising?

Talk your doctor before starting an exercise program. If he or she gives you the go-ahead, make a list of some activities you enjoy or have always wanted to try. Then look into exercise programs at nearby fitness centers, community colleges, local senior or community centers, etc. You can probably find classes for your age group and fitness level. For a personal fitness program, consider a personal trainer. Your doctor or the local health club can recommend one. If exercise has not been part of your daily routine, start slowly. Begin at a comfortable level, and add a little more activity each time you work out.

What can I do to get exercise?

Here are some things try:

  • If you can, take a daily walk around your neighborhood or to a local park.
  • When the hospital staff comes in to take the patient’s vitals, take a brisk walk up and down the hall.
  • When you’re on the phone, walk rather than sit while you talk.
  • When you’re not with the patient, take the stairs instead of the elevator, and park your car a bit farther away from your destination..
  • Do yard work.
  • Get an exercise “buddy.” Ask a friend or family member to exercise with you, or to stay with the patient while you exercise.
  • Bike to work, to run errands, visit friends or just for fun.
  • If you have time, take a dance class, play a game of tennis, or play some volleyball.
  • Go for a jog, swim or fast walk.
  • Jump rope.
  • Do some push-ups, or sit-ups.
  • Lift weights.
  • Do “chair” exercises like knee lifts, shoulder circles, and head/neck stretches. You can do these while sitting with your loved one at home or in the hospital.

Many people find it helpful to keep track of their weekly exercise activities. Seeing your progress can motivate you.

How much exercise do I need?

Try to get 30-60 minutes of exercise 4 to 6 times a week. Include aerobic and strengthening activities. Aerobic exercise raises your heart rate and makes you breathe hard. Strength-training builds muscle in your arms, shoulders, chest, stomach, back, hips, and legs.

Try to get at least 2 hours and 30 minutes of moderate aerobic exercise per week or 1 hour and 15 minutes of vigorous aerobic exercise per week. Try starting with 10 minutes. Do strength-training at least 2 days a week. Try exercising each muscle group 8-12 times a session. Don’t worry if you can’t do that much. Anything is better than nothing!

References

  • Doyle, K.L., Toepfer, M., Bradfield, A.F., Noffke, A., Ausderau, K.K., Andreae, S., Pickett, K.A. (2021). Systematic review of exercise for caregiver-care recipient dyads: What is best for spousal caregivers-exercising together or not at all? The Gerontologist, 61(6), e283-e301.
  • Hives, B.A., Buckler, E.J., Weiss, J., Schilf, S., Johansen, K.L., Epel, E.S., Puterman, E. (2021). The effects of aerobic exercise on psychological functioning in family caregivers: Secondary analyses of a randomized controlled trial. Annals of Behavioral Medicine, 55(1), 65-76.
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Why is it important to ask for and accept help?

Caring for someone with cancer can be hard, time-consuming, and stressful. As a caregiver, you are at increased risk of emotional, mental, and physical health problems. You may feel stress, anger, anxiety, depression, fatigue, loneliness, and uncertainty. Caregivers need help. Some caregivers find it difficult to ask for help. You may feel embarrassed or like you are imposing on others. But getting caregiver help is important—for both for you and the person you are caring for. Help often enables caregivers to continue providing care. Accepting help from others can help you succeed.

How can others help me with caregiving?

Prepare a list of things that need to be done and update it as care needs change.

There are lots of ways people can help caregivers. When someone offers to help, let them. Ask them to:

Emotional support

  • Spend time with the patient so you have time to take care of yourself. You need time for yourself each day.
  • Give you a chance to talk through any feelings you have of anger, anxiety, sadness, fatigue, fear, and loneliness. Find a family member or friend that you can talk to.
  • Help you find help if you’re struggling with stress, overload, substance abuse, or other issues. Consider a counselor, social worker, or minister.
  • Spend time with your family, and get out of the house (if possible).
  • Take a walk.
  • Have a positive attitude. It is catching!
  • Stay social if you can, a quick lunch, going to church.

Daily chores & activities

  • Help shop for groceries, medications, or supplies.
  • Prepare meals for your family or help you plan meals (if appropriate age consider Meals on Wheels).
  • Keep track of the patient’s medications and refills.
  • Direct patient care such as help with bathing.
  • Help with yard work, dishes, laundry, and other household chores.
  • Help with transportation, including driving or organizing rides (consider community transportation).
  • Walk or feed your pet.
  • Exercise with you—even if it is just a short walk. You need regular exercise.
  • Sit with the patient.
  • Help sort and pay bills.
  • Look for resources in your community. Case managers at the cancer clinic or hospital may be able to help coordinate the patient’s care such as home care, transportation, and meal delivery.

Communications

  • Keep other family and friends in the loop so they know when the patient needs change.
  • Help you make a list of questions for the patient’s healthcare providers.
  • Organize a family meeting so you can talk about tasks, what might be helpful, and update them on the patient’s care needs.
  • Take the lead in writing and sharing the caregiver help plan and/or keeping it up-to-date.

Money

  • Help with insurance, including figuring out coverage, getting any needed pre-approvals for treatment, and keeping track of payments, reimbursement, and communications.
  • Research any prescription assistance and other financial aid programs. Seek financial assistance and counseling in the community, specific to cancer.

Other

  • Help you research treatment options and understand what to expect.
  • Prepare a travel pack for the patient to take to treatment.
  • Make sure the patient’s home is safe for you and the patient (rugs, bars in the bathroom).
  • Assist you with finding legal aids to address advance directives or living wills.
  • Show your gratitude for the help you receive.

When and how do I ask for help?

It is never too early to ask for help. If you can, ask before you need it. This has the added benefit of giving others time to plan. If you constantly refuse help, people will stop asking and will not be there when you really need help and want it.

Start by asking the person you are taking care of to help you make a list of friends, family, and anyone else who might lend a hand. Do not overlook people you may not know well. People at your church, school, or work may want to help. Next, call the people on your list, and ask if they are willing to pitch in. Even if you do not end up needing their help, it will be good to know it is there just in case.

Remember that many people do want to help, but do not know what they can do. Tell them exactly what you would like. For example, “Can you take Joe for a lab draw on Monday morning before 9am?”

References

  • Alfano, C.M., Leach, C.R., Smith, T.G., Miller, K.D., Alcaraz, K.I., Cannady, R.S., Wender, R.C., Brawley, O.W. (2019). Equitably improving outcomes for cancer survivors and supporting caregivers: A blueprint for care delivery, research, education, and policy. CA: A Cancer Journal for Clinicians, 69(1), 35-49. DOI: 10.3322/caac.21548
  • Cancer.Net. (2019). Caregivers Taking Care of Themselves. Retrieved from https://www.cancer.net/coping-with-cancer/caring-loved-one/caregivers-t…
  • Cancer.Net. (2023). Finding Social Support and Information. Retrieved from https://www.cancer.net/coping-with-cáncer/finding-social-support-and-in… Korotkin, B.D., Hoerger, M., Voorhees, S., Allen, C.O., Robinson, W.R., Duberstein, P.R. (2019). Social support in cancer: How do patients want us to help? Journal of Psychosocial Oncology, 37(6), 699-712. doi: 10.1080/07347332.2019.1580331.
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What does it mean to help from a distance?

If you are caring for someone with cancer who lives more than an hour away, that’s “caring from afar” or helping from a distance. There are a variety of mobile and web apps that ease the burden of family caregivers, and their use should be considered. It can be emotionally and practically difficult, but tools can be used. Remote monitoring, access to information, and enhanced communication may be of assistance.

How can I help from a distance?

Here are 25 things you can do from a distance:

  1. Help the person with cancer determine how much care he or she will need. Determine whether he or she can stay at home.
  2. If needed, look into in-home healthcare, in-home support services, and/or elder care (if eligible).
  3. Make a list of things that have to be done and have available.
  4. Call members of the patient’s support group, like neighbors, friends, or the patient’s faith community. Keep them involved in the patient’s care and update them as needed.
  5. Use apps to assist multiple caregivers with communication (e.g., group messaging or WhatsApp)
  6. Make sure professionals know how to reach you.
  7. Identify someone in the local community who you can contact.
  8. Know the patient’s treatment options so that you can help the patient make decisions. If you have the patient’s permission, talk with his or her healthcare provider directly to be sure you understand the situation.
  9. Sign up to access the patient’s medical information via the health system’s patient portals as applicable. Some physician offices enable the patient and/or caregiver to view diagnostic tests, laboratory results, and even appointment schedules via a protected private web-based program.
  10. Most patient portals allow patients to give family members access to their medical records.
  11. Go over appointment schedules and transportation plans and help the patient troubleshoot if need be (share calendars).
  12. Make a directory of important names and phone numbers (medical and agencies) involved in care.
  13. Go over any questions the patient should ask his or her healthcare provider and write them down so they are easily accessible during office visits.
  14. Review the important answers together. Look into agencies that can help with transportation, prescription costs, meal delivery, and patient support, and let the patient and/or local caregivers know about them. Consider calling yourself to get information.
  15. Ask your loved one’s doctor or nurse if a social worker or other designated associate is available to help with coordinating these resources. Are there case managers available?
  16. Check in regularly with the patient to see how he or she is doing. Ask about side effects that might be troubling them and identify strategies to deal with them (recommend resources for help).
  17. Know where important papers are, such as Durable Power of Attorney (DPOA), court documents, and advanced directives.
  18. If they don’t have these important documents, consider taking the lead in making sure the person with cancer has his or her legal and financial paperwork in order.
  19. Determine if there are alterations needed in the home to increase safety (ramp, grab bars). Ensure the patient has a falls monitoring device if applicable.
  20. Have an emergency plan in place. Make sure that everyone who needs this information has it and that there is a point of contact in the patient’s local community. This may also include a plan for respite care if needed.
  21. Maintain a list of the patient’s medications. Check-in to be sure he or she is taking medications as directed by the healthcare provider.
  22. Determine if the patient needs help obtaining their medication from the pharmacy, organizing their medication, or needs help remembering to take their medication as prescribed. Make sure this information is available to local caregivers or contacts. This should be verified monthly for accuracy.
  23. Know who will help with chores, house maintenance, and yard work if living independently.
  24. Have a transportation plan for physician visits, laboratory visits, or other diagnostic testing.
  25. Know who will assist with bills, banking, and money matters.

Tools for long-distance caregiving

  • Video conferencing (Skype, Zoom, or FaceTime) can be used to check in on status
  • Calendaring - using shared calendars (e.g., Google Calendar, Outlook Calendar, Notion)
  • Medication tracking with reminders
  • Cognitive health tracking - through conversations
  • Sleep and physical activity tracking - wear devices that track and share the data
  • Communication via email, text message, instant message
  • Photo sharing can be used to keep track of wounds, cuts, lumps, or bruises

Ask the patient’s care team to help you get started to care from afar. Often nurses and social works can be of assistance.

References

  • Douglas, S.L., Mazanec, P., Lipson, A.R., Day, K., Blackstone, E., Bajor, D.L., ... & Krishnamurthi, S. (2021). Videoconference intervention for distance caregivers of patients with cancer: A randomized controlled trial. JCO oncology practice, 17(1), e26-e35.
  • Wang, J., Fu, Y., Lou, V., Tan, S. Y., & Chui, E. (2021). A systematic review of factors influencing attitudes towards and intention to use the long-distance caregiving technologies for older adults. International journal of medical informatics, 153, 104536.

Websites

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What can I do to make the patient’s home safe?

Patients with cancer often have health-related problems that make safety important. Side effects from treatment such as weakness, pain, and numbness in legs and feet all can contribute to falls. There is an increased tendency for cancer patients to fall. Most homes are not designed for people with disabilities or chronic illnesses. Follow the tips below to improve home safety. You might also ask a home healthcare worker to check the home for hazards.

Throughout the house you’ll want to:

  • Remove rugs or raised room dividers to prevent falls, and/or secure rugs, door mats, and floor coverings.
  • Move furniture to make clear pathways from room to room. • Make sure the phone can be reached easily. Post emergency numbers by the phones.
  • Identify potential hazards like dangling cords (phone and light), toxins, and unsteady chairs, and remove them.
  • Ensure that stair steps have treads.
  • Remove clutter, especially on the floor.
  • Remove excess equipment and supplies.
  • Make sure the house is well-lit. (Changing light bulbs is a great way for a friend to help!)
  • Get assistance devices (cane or walker) if the patient is unsteady and weak.
  • Make sure light switches are easy to reach and are at the top and bottom of staircases.
  • Check that home's smoke alarms and fire extinguishers work.
  • Consider installing a personal emergency response system (to enable your family member or friend to get help with the push of a button).
  • Get a fall-monitoring device so the caregiver can be notified when the patient is getting out of bed. This is especially important if the patient is taking multiple medications that make them unsteady, dizzy, or confused such as strong pain medication or sleep-enhancing medication. Consider giving the patient an intercom, baby monitor, or bell, so he or she can get the caregiver’s attention when not in the same room.
  • Consider car door framesstraps to help the patient get into and out of a car.
  • Assist the patient in getting up from bed or chairs as needed.
  • Assure the patient has access to glasses if needed as poor vision may increase their risk of falling.
  • Ensure that extra medications are not sitting around for others to accidentally get to.

Hallways & entryways

  • If needed, build a ramp for wheelchair access.
  • Add nightlights in hallways.
  • Install handrails on both sides of stairways and in the halls.
  • Place carpet or safety grip on the stairs.
  • Consider whether doorways can accommodate a wheelchair or walker

Bedroom

  • Make sure the bed is not too high.
  • Be sure there is a clear, well-lighted path from the bed to the bathroom.
  • Place a phone in the bedroom.
  • If the patient is using an assistive device (cane or walker) have one nearby so they can reach it when needed. • Have a call device handy so they can call for help.
  • Consider a bedside commode if the patient has difficulty walking to the bathroom, especially at night.

Kitchen

  • Make sure that the workplaces are easy to reach.
  • Make sure the person can sit down while preparing food or cleaning up.
  • Make sure cords are not in pathways.
  • Keep rubber gloves available for washing dishes if the patient experiences numbness and tingling in their hands. They may not be able to detect hot temperatures.
  • Keep oven gloves available for moving pots on the stove or removing items from the oven.

Bathrooms

  • Install a raised toilet seat.
  • Add grab bars near the toilet and bathtub or shower. Grab bars are needed near the tub and in the shower and to get up and down to the toilet.
  • Have a stool or seat in the shower so the patient can sit.
  • Use nonskid mats on the bathroom floor and in the bath and shower to prevent falls.
  • Install a hand-held shower.
  • Check the water faucets for ease of use.
  • Check the towel racks and be sure they can support an adult.
  • Check the water heater to make sure it's not set too high or too low.
  • Check to see if one can get in and out of the tub with ease or if a step stool is needed.

References

  • Gewandter, J. S., Fan, L., Magnuson, A., Mustian, K., Peppone, L., Heckler, C., ... & Mohile, S. G. (2013). Falls and functional impairments in cancer survivors with chemotherapy-induced peripheral neuropathy (CIPN): A University of Rochester CCOP study. Supportive Care in Cancer, 21(7), 2059-2066.
  • Huff, C. (2020). Oral chemotherapy: A home safety educational framework for healthcare providers, patients, and caregivers. Clinical Journal of Oncology Nursing, 24(1), 22-30. doi: 10.1188/20.CJON.22-30
  • Kuriya, M., Yennurajalingam, S., de la Cruz, M. G., Wei, W., Palla, S., & Bruera, E. (2015). Frequency and factors associated with falls in patients with advanced cancer presenting to an outpatient supportive care clinic. Palliative and Supportive Care, 13(02), 223-227.
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What are caregiver loneliness and isolation?

Isolation happens when a person does not spend time with other people enjoying themselves. Caregivers have a lot to do, and this often takes them away from their usual connections with family and friends. There are bills to pay, people to call, direct care to provide, prescriptions to pick up, and appointments to go to. You may lose track of friendships and stop having a social life because of caregiving responsibilities. This isolation can make you feel lonely, depressed, or sick. Caregivers often withdraw from previous hobbies and lifestyle activities. You may also feel that no one understands what you are going through.

What can I do about my loneliness and isolation?

Staying in contact with people other than the patient is important. These connections can promote happiness, better sleep, and better health.

Here are some tips for avoiding isolation and loneliness:

  • Do a little something for yourself each day. If you can’t take an afternoon off with a friend, schedule a daily phone “date” with someone.
  • Ask family members and friends to understand that even though you may be busy, you need and want them to reach out. Ask them to check in with you even if you cannot return their calls right away. Ask them to keep inviting you out even if you often have to say no.
  • Engage in social interaction with family and friends.
  • Invite friends, family, and church members over to visit, take a ride, go for a walk, or eat out.
  • Schedule time to get in touch with others.
  • Join an in-person or online support community.
  • Get help with caregiving so you can get out of the house for a little while for a bit of respite.
  • Stay in touch with the news and events that are going on around you.
  • Do not feel guilty! Making time for others does not mean you’re short-changing the person you are caring for.
  • Express your true feelings as it will lighten your load.
  • Use video chat to keep in touch with people.
  • Consider a companion robot.
  • Do not routinely and continuously turn down invitations from others. Accept invitations to social gatherings.
  • Take the time to call and catch up with those friends and family with whom you have lost touch.
  • Consider attending church and other religious events. Practicing your religion and maintaining your faith may be helpful.
  • If you have a hobby, do it for a little while every day.
  • Rent a movie. Go to a play or concert. Go out to lunch.
  • Take a walk or go to a library.
  • Take a class to learn about something that interests you.
  • Take care of yourself – journal – do things you enjoy.
  • Accept praise for what you do.

When should I talk to my doctor about my loneliness and isolation?

Talk to your doctor if you are:

References

  • Hebdon, M., Badger, T. A., Segrin, C., & Pasvogel, A. (2021). Social support and healthcare utilization of caregivers of Latinas with breast cancer. Supportive Care in Cancer, 29(8), 4395–4404. https://doi.org/10.1007/s00520-020-05983-z
  • Li, L., Wister, A.V., Mitchell, B. (2020). Social isolation among spousal and adult-child caregivers: Findings from the Canadian longitudinal study on aging. Journal of Gerontology: Series B, 76(7), 1415-1429. doi: 10.1093/geronb/gbaa197. Moss, K.O., Kurzawa, C., Daly, B., Prince-Paul, M. (2019). Identifying and addressing family caregiver anxiety. Journal of Hospice and Palliative Nursing, 21(1), 14-20. https://doi.org/10.1097/NJH.0000000000000489.
  • Pohl, J.S., Bell, J.F., Tancredi, D.J., Woods, N.F. (2022). Social isolation and health among family caregivers of older adults: Less community participation may indicate poor self-reported health. Health and Social Care Community, 30(6), e6175-e6184. https://doi.org/10.1111/hsc.14054.
  • Rokach A, Findler L, Chin J, Lev S, Kollender Y. (2013). Cancer patients, their caregivers and coping with loneliness. Psychol Health Med, 18(2), 135-144. Thana, K., Lehto, R., Sikorskii, A., Wyatt, G. (2021). Informal caregiver burden for solid tumour cancer patients: a review and future directions. Psychology & Health, 36(12), 1514–1535. https://doi.org/10.1080/08870446.2020.1867136
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What is a Care Plan?

It is important to have a written plan of care for your loved one.

A Care Plan lays out what needs to be done to manage the health and well-being of the cancer patient. Unlike the doctor’s “plan of care,” the Care Plan addresses non-medical issues. A Care Plan can help you line up outside help ahead of time, avoid schedule conflicts, improve communication, and reduce caregiver burnout and stress by having a clear plan.

How do we make a Care Plan?

To make a Care Plan:

  1. Include the patient
    Talk to the patient about the level of care he or she thinks will be needed. The person receiving care should have the biggest voice unless he or she is mentally or physically unable. What help is needed?
  2. Pull your home team together
    Make a list of everyone who wants to help, can help, and should help - including family members, close friends, health professionals, home care workers, volunteers from church, and others in the community.
  3. Take stock of the situation
    Remember that the level of care needed by the patient can change. Make a list of all the components of the patient’s care: appointments, treatments, medications, and types of assistance needed. The person with cancer may only need help for brief periods of time, like after surgery or during chemotherapy. Or, he or she may need constant or almost-constant care. People who are not able to recover will likely need more help as time passes. Other patients only need help a few days a week, such as around the days of treatment when side effects are most obvious.
  4. Have a family meeting
    Learn more about planning a family meeting.
  5. Make the Care Plan
    Once you have put together your care team, and considered the patient’s needs, it is time to sit down with all the players and put your Care Plan together. The written Plan should include:

    - Contact information (phone numbers, websites, addresses) for all the patient’s healthcare providers and care team members
    - A care schedule of needed appointments and treatments
    - A list of assigned tasks (for example, “Laundry: Rebecca, Tuesday evenings”)
    - A list of the patient's medications and instructions for administration
    - A care schedule of when medications need to be refilled
    - List of areas for patient assistance, such as with physical function
    - Other important medical information
    - Organizing medical records
    - Instructions for what to do in an emergency
    - Emergency numbers
     
  6. Take action
    Make sure everyone involved has a copy of the Care Plan. Check-in with each other regularly to make sure things are getting done. There should be one person who coordinates the Care Plan. This does not mean that person has to do everything -just that he or she is responsible for seeing to it that those tasks are done or changed as needed. As things change, be sure to update the Care Plan. Periodic family meetings may be helpful.

What areas do we need to think about when making a Care Plan?

You’ll want to look at how the patient is doing in these areas:

  • Physical health & function
  • Medication receipt and administration
  • Mental and emotional health
  • Everyday activities of daily living (e.g. bathing, meals, etc.)
  • Chores
  • Home safety
  • Supplies
  • Finances and medical bills
  • Insurance
  • Legal
  • Lifestyle and social activities

Physical health & function

Is the patient able to see and hear well? Does the person need professional nursing care to manage wounds, drains, catheters, or other medical equipment?

Be sure to address the following areas on the care plan:

  • A list of activities the patient will need assistance with. Also include any assistive devices needed, such as a cane, walker, or wheelchair.
  • If the patient needs assistance with activities of daily living such as eating, bathing, or grooming, ask them about their preference for utilizing help. Note this on the care plan. For example, be sure to ask them what time they like to eat breakfast, lunch, or dinner or if they like or dislike any particular food. List food allergies.
  • Note if the patient is continent or incontinent and how often the patient should be checked if incontinent.
  • Be sure to include any physical or occupational therapy in the care plan and note whether this therapy takes place in the home or at a clinic.
  • Whether the patient needs assistance in handling finances and banking.
  • Whether assistance is needed with grocery shopping or preparing meals. Whether the patient receives meals from outside sources such as Meals on Wheels.

Medications

Does he or she have other diseases that need to be managed, like diabetes, high blood pressure, arthritis, or emphysema? What medication is the patient taking? Does the patient need assistance taking medication or remembering to take medication?

It is important to have an updated list of medications, including the time to take, dosage, frequency, route of administration (oral versus injection), and the purpose and side effects associated with the medication.

Also include proper storage, handling, and disposal instructions.

Update the Care Plan frequently to include any changes to medications.

Have the name and number of the pharmacy and whether or not the patient uses a specialty pharmacy.

Include any known medication allergies.

Mental and emotional health

Does the patient have any mental health issues like depression, anxiety or delirium that lasts more than two weeks? Should he or she be seen by a mental healthcare professional?

Everyday activities of daily living

Does the patient have problems with incontinence (inability to control urine or bowel movements)? Can he or she move around safely and comfortably? Can he or she dress, bathe, shave, brush teeth, wash hair, use the toilet, and use the phone without assistance? Can the person get help in an emergency, shop, prepare meals, do housework, do yard work, and/or drive safely? Does the patient have any eating issues?

Home safety

Are there any hazards in the home? What type of yard and house maintenance is needed? Are there stairs? Can the patient manage these? Are there grab bars in the bathroom? Are these needed? If the person with cancer lives alone, is there an emergency call system in place? (Learn more about home safety.)

Household chores

Be sure to note any household chores that need to be completed and give specific details of when these chores should be completed. For example, laundry on Mondays or vacuuming on Saturdays.

Include the patient to discuss their regular schedule of housework and/or yard work.

Include any care for household pets, such as walking the dog or feeding the cat.

Have the names and numbers of repairmen should something in the household malfunction, such as the furnace or plumbing.

Finances and medical bills

Can the patient manage his or her affairs, including paying bills? What is the patient earning and spending? What are his or her income sources (e.g. Social Security, pensions, salary, investments, etc.)? How long will his or her savings last? Are there any other sources of financial assistance? Where are important financial documents—like the car and home title and insurance policies—stored? Who handles the medical expenses and bills?

Insurance

What insurance coverage does the patient have? Medicare? Medicaid? Private insurance? Does the patient have long-term care insurance, supplementary insurance, or life insurance? Does insurance cover "non-medical" personal care? Has the patient been told that insurance won't cover medical tests or procedures that the doctor has ordered? Ensure that co-pays are considered when seeking care. Pay care bills and coordinate insurance concerns and issues.

Legal

Does the patient have a will, trust, advance directive, or living will? Have they signed a healthcare proxy or power of attorney? Does the primary caregiver and/or caregiving team have access to these?

Interests & lifestyle

What are the patient’s hobbies? Does he or she belong to a church or other faith-based group? Does he or she get out of the house for social reasons? Get visitors at home? Do family members live close by? Is there someone from the patient’s faith community that can drive them to services? Take to social events such as concerts, etc.

Supplies and equipment

Know the supplies and equipment needs of the patient and include in the Care Plan. The patient may need supplies for dressing changes following surgery or have wounds that require care.

The patient may have a bedside commode, hospital bed, a walker/cane/or wheelchair, oxygen, feeding tubes, or need tracheostomy care supplies.

Know where the supplies and equipment come from, and the number to contact in the event you need to reorder supplies or if there is an issue with equipment.

Be sure to include on the Care Plan any maintenance on equipment and how to operate or use equipment safely.

References

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What are the medication issues related to cancer?

People with cancer often take many medications both for their cancer as well as for other chronic health problems. Following the doctor’s orders can be hard when some need to be taken with food, some without, some in the morning, some at bedtime, some as needed, some once a day, and others multiple times a day or even around the clock. Now there are a number of cancer treatments that can be directed to be taken at home by the patient with the help of the family.

Some medications may be taken by mouth; others injected. There are topicals, eye drops, transdermal patches, etc. It can be complicated! Some of the newer oral anticancer agents have very complicated schedules for administration. Patients may have a hard time keeping track and need your help. Dealing with multiple medications can be a challenge.

Also, cancer drugs may cause side effects. These can make the patient feel unable or unwilling to take them as prescribed. Medication interactions can occur even when the patient is taking everything as prescribed. Patients need to know how they can try to manage the side effects of their medications. Caregivers can assist patients with symptom management.

Cancer patients often see several healthcare providers who may not know what else the patient has been prescribed. Family members assume major responsibility for helping the patient. Caregivers should be sure providers know and understand what medications the patient is taking. Avoiding medication errors is a top priority for patients on medications.

How can we better manage the patient’s medications?

Keeping track

The most important thing is helping the patient keep track of medications; over-the-counter medications and supplements should be included. Labels need to be read carefully. If you or the patient have difficulty reading the pharmacy labels, request large print labels. Work with your loved one to create a record with the following information for each medication:

  • Name of the medication
  • Prescribed by (doctor)
  • Prescribed for (purpose)
  • Instructions (how much to take, when to take, for how long, how many times a day)
  • Possible common side effects
  • How long it takes for certain medications to work, such as pain medications
  • How medication should be stored
  • Foods to avoid and how to take medication in relation to food and fluids
  • What to do if dose missed
  • Pharmacy (try and use the same pharmacy for all prescriptions)

You can use this medication worksheet as a starting point. You can also ask another friend or family member—someone who is very well organized!—to handle this.

Whoever manages the medication records should be sure to include over-the-counter medications, vitamins, and herbal supplements. These can interact with prescription medication, so the patient’s healthcare providers need to know about them. And, be sure to write down when prescriptions need to be refilled.

Do not mix different medications together in the same container.

If possible, encourage the patient to use the same pharmacy to fill all prescriptions. The pharmacist can identify any drugs that might interact badly. Know where and how to get the medications.

Make sure your loved one knows to take his or her medication record to all medical appointments and asks his or her healthcare provider to update it as needed.

Get prescriptions filled early or use a medication delivery service.

Help the patient take their medication

You—or another person on the care team—can help the patient take medications day-to-day. Try to have a reminder system. For example, create a calendar together. Or suggest the patient set an alarm or daily phone reminders at medication times. Reminders are important.

Some people with cancer find it helpful to prepare (or have someone prepare) their medications on a weekly basis. Setting up a system using pill containers can help patients keep on track with times and pills per day. For oral medications, you can pick up a pill organizer with different slots for morning, noon, evening, and bedtime at any pharmacy. This can save time and make it easier to keep track.

But be sure to store medications as directed. Some need to be refrigerated; others must be kept out of the light, etc.

Ask the patient's doctor or nurse about the safe handling of medication. Oral cancer medications can be toxic and should be handled with care. Keep medications stored in a secure place, out of the reach of children.

Be sure to check all medication expiration dates and discard any expired medication according to the doctor's or pharmacist’s advice.

Medication reconciliation

Medication reconciliation is the process of comparing current and older lists of medications. With a cancer diagnosis, new medications are often added or discontinued. It means making sure everything is on the list, nothing is missing, there are no contra indicators, and changes are noted. This should be done after hospitalizations, ER or urgent care visits, and physician visits. Caregivers need to keep an up-to-date medication record and know when changes occur and why.

When should I talk to the patient's healthcare provider about medication?

You or the patient should contact his or her healthcare provider if:

  • The patient has missed a dose, and you don’t know what to do.
  • The patient is having symptoms that may be side effects of medication, like rashes, drowsiness, confusion, depression, insomnia, incontinence, muscle weakness, loss of appetite, balance problems, and/or changes in speech and memory that interfere with daily life.
  • The medication is not working.
  • The patient is having a hard time taking medications as prescribed (e.g., swallowing).
  • The patient’s medication is not covered by insurance, and financial assistance is needed.
  • The medication comes from a specialty pharmacy.

References

  • Polenick, C.A., Stanz, S.D., Leggett, A.N., Maust, D.T., Hodgson, N.A., & Kales, H.C. (2020). Stressors and resources related to medication management: Associations with spousal caregivers’ role overload. The Gerontologist, 60(1), 165–173. https://doi.org/10.1093/geront/gny130
  • Whitman, A., Fitch, E., & Nightingale, G. (2023). The role of oncology pharmacists and comprehensive medication reconciliation in informing treatment plans for older adults with cancer and downstream outcomes. Current Opinion in Supportive and Palliative Care, 17(1), 3-7. DOI 10.1097/SPC.0000000000000634
  • Schumacher, K.L., Clark, V.L.P., West, C.M., Dodd, M.J., Rabow, M.W., & Miaskowski, C. (2014). Pain medication management processes used by oncology outpatients and family caregivers part II: Home and lifestyle contexts. Journal of Pain and Symptom Management, 48(5), 784-796.
  • Latter, S., Hopkinson, J.B., Richardson, A., Hughes, J.A., Lowson, E., & Edwards, D. (2016). How can we help family carers manage pain medicines for patients with advanced cancer? A systematic review of intervention studies. BMJ Supportive & Palliative Care, 6(3), 263-275. DOI 10.1136/bmjspcare-2015-000958
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What are some financial issues related to cancer care?

Cancer can be a huge financial burden on families, and money can be a major concern. Many treatment-related costs are not covered by insurance. You may also have additional non-medical expenses like transportation, in-home care, or childcare. And, both you and the person with cancer may be unable to work as much during treatment and recovery - if at all. Handling health care bills and finances can also be overwhelming.

How can we deal with financial issues related to cancer care?

Here are some tips:

Insurance coverage

  • Ask the insurance company to assign a case manager to your loved one. This may give you a single point of contact for questions about coverage and out-of-plan benefits.
  • Talk with a social worker, as they often have strategies that work. Ask the social worker if there are some non-profit agencies that can help pay for items that may not be covered by insurance companies, such as wigs, head wraps, and even transportation.
  • Find out if supplies and equipment (walkers, wigs, slings, dressings, etc.) are covered under the insurance plan. (Sometimes insurance companies will cover part or all the cost if a healthcare provider writes a prescription).
  • Make sure you and your loved one understand what treatments need to be pre-approved by the insurance company and get the necessary approvals.
  • Make sure you understand how much and how long the insurance will pay; some reach a dollar limit, and others have limits within a year.
  • Keep detailed records when either you or your loved one speak with the insurance company. Write down: who you spoke to, what was said, and when you were in contact.
  • Understand your co-pays, deductibles, and other payments, and keep track of them.
  • If the insurance declines to pay for something, ask again. Often it takes several tries; try appealing their decision.
  • Check out your state’s Health Insurance Assistance program.

Hospital bills

  • Check to be sure that medical bills are accurate. Consider asking for an itemized hospital bill because billing errors happen. Call the hospital billing department if you have questions or concerns about charges.
  • If your insurance does not pay a particular charge, call the doctor’s office/hospital for help verifying the correct billing codes are in place. Sometimes there are errors on the medical professional’s part (e.g., the wrong diagnosis code was placed for the procedure).
  • Arrange for a meeting with someone from the hospital's billing department or talk to a hospital social worker or case manager about payment plans, reduced rates, "charity care," or "indigent care" programs.

Prescription coverage

Out-of-pocket prescription costs can add up quickly. Ask the oncology provider or the hospital’s patient services representative (often a case manager or social worker) if the company that makes the patient's medicine has a copay assistance program or a patient foundation to help pay for it. The patient may need to meet eligibility criteria to qualify. You can also find out about prescription assistance programs on these websites:

Home healthcare

  • Home healthcare services other than skilled care can cost a lot and are often not covered by insurance.
  • Skilled home care may have a limited number of visits.
  • Talk to a hospital discharge planner or social worker about home care options and expenses.
  • Get help from a hospital social worker to figure out what services are needed and get help contacting a home healthcare agency.
  • Check to see what your loved one’s insurance covers and what’s needed to qualify for coverage. For example, you may need a doctor’s prescription for home care.
  • Check to see if there are applicable state and federal medical assistance programs that can help.
  • Compare different home healthcare agencies. Look at what each agency provides and the cost of their services.
  • Look into borrowing home care equipment that’s not covered by insurance, like a wheelchair, walker, or hospital bed. Often community agencies and drug stores have the equipment to borrow. Or consider obtaining home care equipment second-hand, such as Salvation Army, Goodwill, or Facebook Marketplace.

Family financial planning

  • Figure out your monthly expenses. Include rent or mortgage, phone and utility bills, transportation, insurance premiums, food, clothing, child-care and elder-care costs, medical expenses, any monthly loan payments, taxes, tuition, legal and accounting fees, and anything else. Complete a budget.
  • Prioritize your bills. Determine if there are any monthly expenses that could be reduced or eliminated for a while.
  • Ask utility companies, such as gas, electric, and phone, about available assistance programs or ways to reduce the costs.
  • Meet with a financial advisor to help make a plan for your family's finances.
  • Let your creditors know about your financial situation, if you are having trouble paying your bills.
  • Look at possible Social Security and Pension benefits including compassionate allowances from the Social Security Administration. (You may need power-of-attorney to talk to others about the patient’s financial and health matters.)
  • Make sure you and other family members have healthcare coverage, and consider long-term care insurance but investigate carefully.
  • Tips for taxes for caregivers (check state tax plans for family caregivers)
    - Relatives may be eligible to claim a dependent on a tax return
    - Nonrelatives can also be claimed as a dependent
    - Cost for food, housing, medical care, clothing, and transportation may be deductible out-of-pocket costs, and copays may be deductible
    - Flexible spending accounts may be used.

Where can I get more information about cancer-related financial issues?

Here are some helpful websites:

References

  • Coumoundouros, C., Ould Brahim, L., Lambert, S. D., & McCusker, J. (2019). The direct and indirect financial costs of informal cancer care: A scoping review. Health & Social Care in the Community, 27(5), e622-e636.
  • Iragorri, N., de Oliveira, C., Fitzgerald, N., Essue, B. (2021). The out-of-pocket cost burden of cancer care – a systematic literature review. Current Oncology, 28(2), 1216-4128. doi: 10.3390/curroncol28020117
  • Nightingale, C.L., Canzona, M.R., Danhauer, S.C., Reeve, B.B., Howard, D.S., Tucker-Seeley, R.D., Golden, S.L.S., Little-Greene, D., Roth, M.E., Victorson, D.E., Salsman, J.M. (2022). Financial burden for caregivers of adolescents and young adults with cancer. Psychooncology, 31(8), 1354-1364. doi: 10.1002/pon.5937
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What are caregiver sleep problems?

Sleep problems include insomnia (the inability to fall or stay asleep), hypersomnia (problems staying awake), poor quality sleep, or inability to stay asleep. Sleep problems can change the way you think and feel. If you haven’t had a good night's sleep, you may feel tired, irritable, jittery, and/or depressed. You may not feel like doing anything - even things that are usually enjoyable.

Caregivers often have sleep problems. You may be getting up during the night to help the patient. Or, you may be staying up late to get things done. Depression, anxiety, or fatigue from caregiving can cause sleep problems.

What can I do about my sleep problems?

Here are tips for getting a good night's sleep:

  • Settle for bed and wake up at the same time every day.
  • Use your bed for sleeping only. Don’t watch TV, use electronic devices, read, or pay bills in bed.
  • Keep your bedroom quiet, comfortable, and at a consistent temperature. Try a radio, fan, or mood music to filter out noises.
  • Make sure you have a comfortable mattress and pillows.
  • Consider alternate sleeping arrangements if you share a room with your loved one who you are caring for. You can arrange for a call system so the patient can reach you when needed. This may help you be at ease which may lead to better sleep quality.
  • Try to organize your sleep around the patient’s schedule so that you can get uninterrupted sleep.
  • Keep a sleep journal that includes what makes sleeping difficult, what helps you sleep, and how sleep problems affect your usual activities.
  • Try listening to a relaxation tape at bedtime.
  • Don’t eat a heavy meal right before bed. If you are hungry at night, try a light snack with warm milk.
  • Coordinate help with caregiving.
  • Stay active and get exercise during the day (but not right before bed).
  • Take a warm bath an hour before going to bed.
  • Try to deal with problems or worries during the day, and set them aside when you go to bed.
  • Avoid using tobacco; nicotine is a stimulant.
  • Avoid caffeine (e.g., coffee, colas, black teas, and chocolate) after 3 pm.
  • Avoid drinking alcoholic beverages.
  • Try relaxation exercises or meditation before bed.
  • Ask others to avoid calling or texting you when you’re usually asleep unless it’s an emergency.
  • Set your phone for “Do Not Disturb” or “Sleep Mode” during times when you are asleep.
  • Ask someone to give you a backrub or foot massage at the end of the day.
  • If sleep medications are prescribed, take them based on your doctor’s instructions.

Here are some additional tips if you are sleeping too much (more than 12 hours per day):

  • Avoid sleeping as a way to cope with boredom. Distract yourself with hobbies or other activities when you feel sleepy during the day.
  • Avoid eating too many sweets, peanuts, and dairy products to make you sluggish.

When should I talk to my doctor about my sleep problems?

Talk to your doctor if you have:

  • Overwhelming fatigue that persists beyond 2 weeks
  • Frequent nightmares
  • Confusion on waking
  • Depression that persists
  • Frequent waking during the night
  • Inability to get back to sleep after waking
  • Inability to carry out daily activities
  • Sleep problems lasting longer than three weeks
  • Overuse of sleep medication

References

  • Chen, Q., Terhorst, L., Lowery-Allison, A., Cheng, H., Tsung, A., Layshock, M., ... & Steel, J. L. (2020). Sleep problems in advanced cancer patients and their caregivers: Who is disturbing whom? Journal of Behavioral Medicine, 43, 614-622.
  • Toygar, I., Yeşilbalkan, Ö.U., Malseven, Y.G., & Sönmez, E. (2020). Effect of reflexology on anxiety and sleep of informal cancer caregiver: Randomized controlled trial. Complementary Therapies in Clinical Practice, 39, 101143.
  • Ravyts, S.G., Sannes, T.S., Dzierzewski, J.M., Zhou, E.S., Brewer, B.W., Natvig, C., & Laudenslager, M.L. (2021). Check your sleep before you start: A secondary analysis of a stress management intervention for caregivers of stem cell transplant patients. Psycho‐Oncology, 30(6), 936-945.
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Why do I need to think about my own health now?

Caregivers often brush aside their own needs. They tend not to go to the doctor as often as they should, and many do not get the preventative care that they need. Caregivers should especially go to the doctor on a regular basis if any chronic illness should occur. But caregiving can be physically and emotionally demanding. As a caregiver, you are at greater risk for colds, infections, and chronic diseases. Taking time to care for yourself is important. Be sure that you maintain healthy behaviors such as healthy eating, staying hydrated, stress management, daily exercise, and avoiding substance abuse. If you stay healthy, you will be better able to care for your loved one.

What do I need to do to stay healthy?

It’s important that you have regular screening check-ups with your medical doctor, eye doctor, and dentist. The US Preventive Services Task Force recommends you get the following screening on a regular basis:

  • Everyone: Dental checkups and cleanings, eye exams, blood pressure checks, weight and height measurements, blood work (e.g. blood glucose, and cholesterol), fecal occult blood tests (for people age 50 or older or as directed by your doctor), and colonoscopies (as directed by your doctor).
  • Some people may also need: Mammograms (age 40 or older or as directed by your doctor), Pap smears, bone density tests (as directed by your doctor). Prostate exams (age 40 or older or as directed by your doctor). Prostate Specific Antigen (PSA) tests for prostate cancer screenings are no longer recommended by the US Preventive Services Task Force, but your physician may still order this test during your physical exam.

Other ways you can stay healthy include:

  • Recognize early warning signs of stress (exhaustion, getting sick more often, feeling irritable, withdrawing from people, not sleeping well). Talk with your doctor, counselor, or pastor if you are unable to effectively control or cope with your stress and/or emotions.
  • Learn to use mind-body stress-reducing techniques (meditation, yoga, etc.).
  • Identify the barriers that keep you from taking care of your health. Seek help with caregiving responsibilities in order to go to doctor’s appointments or exercise if needed. Scheduled needed doctor’s appointments and organize appointments on a calendar or your phone.
  • Do not miss doctor appointments. If you do not have a family doctor, eye doctor and/or dentist, ask a friend to recommend one.
  • Get roughly 8 hours of high-quality sleep at night.
  • Maintain a healthy lifestyle: eat a healthy diet with proper nutrition and stay hydrated. Try to exercise on a regular basis.
  • Take time off, and seek respite at regular intervals.
  • Take time to relax and do something you enjoy each day, even if it is only for an hour; read a book, watch your favorite television show, meet friends for coffee.

Remember to focus on your own health and well-being. Attend to your own health care needs. Set goals for your health behaviors. Seek and accept help from others. Identify ways to overcome barriers.

References

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Why is it hard to talk with family and friends about caregiving?

Many caregivers find it difficult to speak with the person who is sick. You and your loved one are in this together, but your experiences and roles are very different. For example, the cancer patient may be frustrated that he or she cannot do more. And you, the caregiver, may feel stressed and overloaded because you have too much to do. You may have negative feelings but not want to burden one another. Both of you may be deeply afraid.

You may also find it hard to speak with other family and friends about what you need in the way of help, and/or how you’re feeling. There are likely to be conflicts that cause communication issues. These should be dealt with when possible. You may not feel comfortable talking about your own needs when you’re not the one with cancer. Open communication with family and friends is important even if it is hard to share.

Talking openly and honestly is a must. You have practical challenges that need to be handled and feelings that need to be dealt with.

What sort of things do we need to talk about?

Here are some things that you may need to talk about:

How can I better talk with others about caregiving?

Here are some tips for talking with the person you are caring for and others on the caregiving team:

  • Set aside time to talk. Find a quiet time without interruptions.
  • Ask if it’s a good time before you start a talk. Be clear about why you want to talk, and what you hope will come from it.
  • Try to avoid serious talks when either party is likely to be tired, like at the end of the day or for the patient following chemotherapy.
  • Think about what you want to say ahead of time. You may even want to practice.
  • Use "I" statements like, "I have a hard time talking about this, too." Avoid using "you" statements, such as "You always..." or "You never...”
  • Try to have open body language, such as making eye contact, and not crossing your arms
  • Be patient and be sure that you “hear” and understand
  • Try staying calm when you talk and not getting angry or blaming others for your feelings.
  • Summarize what the other person has said to be sure that you have understood.
  • If the other person seems to have misunderstood, try explaining what you meant with different words.
  • Allow the other person to talk. Listen and try not to interrupt.
  • Try not to hold back to protect one another’s feelings, and ask the other person to do the same.
  • Know that the other person may not want to hear what you have to say. And, know that you may not like what he or she has to say.
  • Don’t feel like things have to be settled after one talk. It is important that the conversation is started.
  • Speak from your heart. Try not to be critical of yourself and the other person. Don't feel that you have to always say, "It'll be okay."
  • Consider technology for ongoing communication, smartphones, webcams, (virtual family gatherings).
  • Keep in mind that people express their emotions differently than you do.
  • If you are having a hard time talking with the person you are caring for or others involved in caregiving, get help. Consider seeking the help of a licensed counselor, therapist, or clergyman to mediate the conversation. Your doctor can suggest someone.
  • Today the use of the phone, Facebook blogs, and CaringBridge may be used to stay connected.

Talking may be hard in the beginning. But it will get easier if everyone is open and honest about their feelings. Things to remember when communicating with technology:

  • Use a safe and secure platform
  • Don’t use it for negative conversations
  • Keep it short but clear
  • Know the “lingo”
  • Don’t share too much

What do I do when someone says something hurtful?

Some people may not know how to talk with you about cancer and caregiving. Their well-meaning comments may be hurtful. It is OK to feel hurt, angry, or shocked. Here are four ways to deal with insensitive remarks:

  1. Be straightforward and honest. Tell the person that the question or comment hurt your feelings.
  2. Ignore the comment and try not to take it personally.
  3. Answer questions in a general way to avoid further discussion. It is your right to share as much or as little as you want.
  4. Ask to continue with the conversation at a later time when everyone can think clearly. Communicating with family and friends can provide support and encouragement to make the cancer journey easier.

References

  • Tiete, J., Delvaux, N., Liénard, A., & Razavi, D. (2021). Efficacy of a dyadic intervention to improve communication between patients with cancer and their caregivers: A randomized pilot trial. Patient education and counseling, 104(3), 563–570. https://doi.org/10.1016/j.pec.2020.08.024
  • Van der Wel, M., van der Smissend, D., Dierickx, S., Cohen, J., Hudson, P., De Velminck, A., … & Witkamp, E. (2022). Systematic translation and adaptation of the FOCUS program, a USA-based supportive intervention for persons with cancer and their family caregivers, for use in six European countries. Support Care Cancer, 30(12), 9763-9770. https://doi.org/10.1007/s00520-022-07391-x
  • Zhou, J., Chen, X., Wang, Z., & Li, Q. (2023). Couple-based communication interventions for cancer patient-spousal caregiver dyads’ psychosocial adaptation to cancer: A systematic review. Healthcare, 11(236), 236. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9858755/
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Why is it important to talk with the patient's healthcare providers?

Please note: The patient will need to give permission for his or her healthcare providers to speak with you.

If you stay in touch with healthcare providers treating the cancer, you’ll likely have a better understanding of the disease and treatment. You’ll be better able to help the patient make decisions and better able to anticipate his or her needs. Many caregivers administer medication injections and other treatments thus, discussion with healthcare providers is important.

What do I need to know about the patient’s disease and treatment?

Depending upon the level of caregiving you’re providing, you may need to know:

  • The diagnosis, including the stage of the disease and expectations about your loved one’s disease and treatment.
  • Medicines the patient is receiving (medication name, dosage [how much], and frequency [how often/timing]).
  • Possible side effects of treatment, how to manage them, and how they may change over treatment.
  • How long the treatment will last.
  • Changes in symptoms and stage or progression of disease.
  • How the patient is expected to respond to treatment.
  • Risks and benefits of treatment.
  • Other treatment that might be available, like clinical trials.
  • When you should call the healthcare provider - what is the level of severity of a problem that requires immediate attention.
  • Where/who to go to get more information.
  • Where you can get support.
  • Who you should call when you have questions.
  • That you and your loved one can take as much time as needed to make informed decisions.
  • If there is written information you can have.

How do I talk with the patient’s healthcare providers?

Many people have a hard time talking with doctors and other healthcare providers. You may feel your questions are foolish or silly. You may be afraid that if you report too many things, the provider will stop treatment. You may not be sure who to ask about what.

Here are some tips on talking with healthcare providers:

  • Work with your loved one to write down all the questions you both have before the visit.
  • Be frank and ask clear, specific questions.
  • If your loved one is able, let them speak first.
  • Take notes during the appointment, and/or ask for permission to record the conversation.
  • Repeat what you hear and ask if you understood what has been said.
  • Take someone with you when you get information from providers so they can also listen to what is said.
  • Try to learn which staff members give different kinds of information - so you know where to get answers. For example, "Who can tell me when my family member/friend will be discharged?", or “who can tell me what treatment expectations are?”
  • If you are concerned with the way something is going, tell the provider! He or she can only help if he knows there is a problem.
  • If you don’t understand what the provider has said, ask them clarifying questions or ask them to explain it to you again using simpler terms.
  • Talk about any physical, emotional or financial problems the patient is having that may get in the way of his or her treatment.
  • Present what you need and what you want - use specific clear “I” statements.
  • Be sure you learn and understand the reason why your loved one takes each medication.
  • Ask for copies of doctors' notes. You have a right to this information, and it's a good way to make sure you are following the care plan.
  • Some questions that you can ask: What is likely to happen during and after treatment? What is likely to happen without treatment? What types of long-term care can we expect?

When should I call the patient’s healthcare provider?

If there is an emergency, call 911. If you’re not sure if it’s an emergency, call your provider, tell them what’s happening, and ask what to do.

Be sure to share any symptoms the patient is experiencing. Be specific.

  • What is happening?
  • How often?
  • How long have the symptoms been going on?
  • What makes them worse or better?
  • How severe are they on a scale of 0-10 (where 0 = no symptom and 10 = worst imaginable)?
  • Are they getting in the way of any daily activities for the patient?

This Crisis Symptom Reporting Guide is another useful resource.

References

  • American Heart Association. (2021). Communication Tips for Caregivers. https://www.heart.org/en/health-topics/caregiver-support/communication-….
  • Smith, P. D., Martin, B., Chewning, B., Hafez, S., Leege, E., Renken, J., & Smedley Ramos, R. (2018). Improving health care communication for caregivers: A pilot study. Gerontology & geriatrics education, 39(4), 433–444. https://doi.org/10.1080/02701960.2016.1188810
  • Wittenberg, E., Kerr, A.M., Goldsmith, J. (2021). Exploring family caregiver communication difficulties and caregiver quality of life and anxiety. American Journal of Hospice and Palliative Care, 38(2):147-153. doi: 10.1177/1049909120935371
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What are some transportation issues related to cancer care?

During treatment the person with cancer may need to go to the hospital or clinic often over the course of many weeks. Because treatment can cause weakness, pain, fatigue, nausea, and vomiting, he or she may not be able to drive him or herself. Added to that, you may be in charge of driving other family members. For example, you may have children you need to take to school or lessons.

How can I deal with the transportation issues related to cancer care?

Here are some tips:

Step 1: Identify the problem
Write down on a calendar who needs a ride, when, and where. Be sure to include lab draws, treatment, other tests or appointments, and family activities like school, lessons, work, etc.

Step 2: Figure out who can help
List all available transportation options. Be sure to include family, friends, neighbors, church members, public transportation, volunteer driver programs (through churches or hospitals), hospital vans, other caregiving families that might carpool, private door-through-door escort services, and paratransit (public transportation for the elderly and disabled). You can find more information at the National Aging and Disability Transportation Center.

Step 3: Make it easy for people to help
Ask others to let you know when they might be able to help drive. Then, make specific requests. For example, instead of, "Can you help me take Bob to doctor appointments?" Try, "Can you drive Bob to and from his chemotherapy next Monday at 3:00pm?" You can also ask your friends and family to help you make the transportation schedule and/or make calls to line up rides.

Step 4: Get organized
Print maps to the different appointment locations. On the top of the map, write the time of the appointment, the name of the building where the appointment is located, the room number, and a contact number for the appointment. Let the person driving know where to park. Keep a folder with multiple copies of the maps so you always have them on hand.

Step 5: Let the patient know the plan
Talk to the patient when making driving plans, and make sure the plan is OK with him or her. You don’t want the person you’re caring for to feel he or she is being "shuffled" around.

Step 6: Make a travel pack
Make a travel bag with:

  • The patient's medication list
  • Insurance cards
  • Identification
  • Small amount of money
  • Personal items like house key and cellphone
  • Your contact information
  • Other emergency contact information
  • A snack in case of delays
  • A bottle of water
  • Wipes, tissues or paper towels
  • Incontinence products (if needed)
  • Change of clothes

Be sure to give this to the driver.

What about when I just can’t get the patient to an appointment?

Sometimes, in spite of your best efforts, you won’t be able to get the patient to an appointment. Let the doctor's office or clinic know right away. They may be able to reschedule without a missed-appointment fee.

References

  • Schwartz, A.J. & Jenkins, C.L. (2020). Barriers and facilitators to cancer treatment adherence for older Rural African Americans: Understanding the experience from the view of patients and their caregivers. Journal of Family Social Work, 23(1), 20-34.
  • Transportation: What caregivers need to know. (2023). AARP website. Available at: https://www.aarp.org/caregiving/home-care/info-2020/transportation-services.html
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How can caregiving affect my work?

Many people find it hard to balance work and caregiving. Medical appointments for the patient and other tasks of care can interrupt your work day. You may be sleeping poorly or distracted by feelings of fatigue, uncertainty and fear, anger, depression, or anxiety. You may find yourself working less hours or not as well. You need to know the Family Leave benefits of your employer. You need to be alert to workplace discrimination experienced by caregivers.

How can I deal with working and caregiving?

Common work experiences by caregivers that cause issues with employers include: arriving late, leaving early, taking a leave, reducing work hours, or interruptions at work.

Here are some suggestions:

  • Know the policies of your organization and discuss them with the appropriate person to let them know you want to make your situation work.
  • When possible, try to schedule the patient’s medical appointments and other caregiving jobs during breaks or lunchtime.
  • Recognize signs of role overload between caring tasks and work role. Ask for help in caregiving responsibilities to seek a balance.
  • Job sharing may be possible.
  • Explore compressed work week policies at your workplace.
  • Offer to work an unpopular shift in exchange for flex-time.
  • Telecommuting or “work from home” may be possible for some positions.
  • Many large employers have an Employee Assistance Program (EAP). Ask your boss what support services are available. If your company doesn't have an EAP, talk with the human resources (HR) department.
  • Find support (including other caregivers) at work and take advantage of resources your employer might have.
  • If you work for a company with more than 50 employees, ask for information on the Family Medical Leave Act (FMLA).
  • Check the Leave Policy and caregiver resources for your state.
  • Find resources that may help you with your caregiving responsibilities while you are at work such as home care. Ask a case manager or social worker for information.
  • Consider your job as an opportunity to take a short break from caregiving. Studies have shown that working family caregivers do better than non-working caregivers.
  • Do not make a hasty decision to quit your job. Keep in mind that it is usually more costly for your employer to replace you than help you make it work. If you are thinking of quitting, talk with your boss first. He or she may be more willing to help make plans.

What is the Family Medical Leave Act (FMLA)?

The FMLA gives you the right to take time off work without losing your job if you are ill or caring for an ill family member.

The FMLA: 

  • Applies to workers at all government agencies and schools nationwide, as well as private companies with 50 or more employees within 75 miles of the work site.
  • Guarantees that eligible employees can take up to 12 weeks of unpaid leave, which can be used all at once or in increments as short as a few hours at a time (in the event an employee wants to work part-time or needs time off for appointments).
  • Guarantees that eligible employees maintain their health insurance benefits while out on leave.
  • Guarantees that an employee who returns to work will be given his or her previous position or an equivalent job with the same salary, benefits, and other conditions of employment.
  • Covers employees who have worked for their employer for at least 12 months, including at least 1,250 hours during the most recent 12 months.

For more information: FMLA web page (U.S. Department of Labor)

References

  • Longacre, M.L., Weber-Raley, L., & Kent, E.E. (2021). Cancer caregiving while employed: Caregiving roles, employment adjustments, employer assistance, and preferences for support. Journal of Cancer Education, 36(5), 920–932. https://doi.org/10.1007/s13187-019-01674-4
  • Xiang, E., Guzman, P., Mims, M., & Badr, H. (2022). Balancing work and cancer care: Challenges faced by employed informal caregivers. Cancers, 14(17), 4146. DOI: 10.3390/cancers14174146
  • U.S. Department of Labor. (2023). Family and Medical Leave (FMLA). https://www.dol.gov/general/topic/benefits-leave/fmla
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