Caring for a Loved One with Terminal Cancer: A Guide for Families

Published on October 9, 2023

Updated on December 1, 2023

Cancer Signs And Symptoms
Source: Cancer: Three signs

Receiving a terminal cancer diagnosis for a loved one can be overwhelming and emotional. I understand the challenges you may face in providing care and support during this difficult journey. This educational article aims to families on what to expect over the course of the disease, what changes they might see in their loved one, and how to best care for them from onset until the end.

Understanding Terminal Cancer

Terminal cancer refers to cancer that has reached an advanced stage and is no longer responding to curative treatments. The focus of care shifts to providing comfort, managing symptoms, and improving the quality of life during this time.

Early Stages

In the early stages of terminal cancer, your loved one may still feel okay most of the time. They may have some mild symptoms, such as feeling tired, having pain, feeling sick, or losing weight. These symptoms are not the same for everyone. They depend on the type of cancer, where it is in the body, and what treatments they are getting. Sometimes, these symptoms can be treated with medicines or other ways to make your loved one more comfortable.

  • Fatigue: Fatigue means feeling very tired and having no energy. It is one of the most common symptoms of terminal cancer. Your loved one may feel fatigue because of the cancer, the treatments, or other problems like anemia or infection. Fatigue can make it hard for your loved one to do the things they enjoy or need to do. They may need to rest more often and sleep longer. You can help your loved one by letting them rest when they need to, planning activities around their best times of the day, and making their environment comfortable and quiet.
  • Pain: Pain is another common symptom of terminal cancer. It can be caused by the cancer itself, the treatments, or other problems like nerve damage or inflammation. Pain can affect your loved one's mood, sleep, and quality of life. It is very important to talk to your healthcare team about your loved one's pain. They can prescribe medicines or other ways to relieve the pain, such as heat, cold, massage, or acupuncture. You can help your loved one by giving them their pain medicines as directed, watching for any side effects, and reporting any changes in their pain level or type.
  • Nausea and vomiting: Nausea means feeling sick to your stomach. Vomiting means throwing up. These symptoms can be caused by the cancer, the treatments, or other problems like constipation or infection. Nausea and vomiting can make your loved one lose their appetite, become dehydrated, and feel weak. Your healthcare team can prescribe medicines or other ways to prevent or treat these symptoms, such as ginger, peppermint, or acupressure. You can help your loved one by giving them their anti-nausea medicines as directed, offering them small, frequent, and bland meals, and keeping them hydrated with water, ice chips, or clear liquids.
  • Changes in appetite and weight loss: Your loved one may not feel like eating or drinking as much as they used to. This can be caused by the cancer, the treatments, or other symptoms like pain, nausea, or depression. Losing appetite and weight can make your loved one more tired, weak, and prone to . Your healthcare team can suggest ways to improve your loved one's appetite and nutrition, such as using supplements, appetite stimulants, or feeding tubes. You can help your loved one by offering them their favorite foods and drinks, making mealtime pleasant and social, and respecting their preferences and choices.

Advanced Stages

As cancer gets worse, your loved one may have more problems and symptoms. They may need more help and care from you and others. Here are some of the things that might happen:

  • Increased weakness: Your loved one may have less energy and strength to move around. They may have trouble walking, standing, or getting out of bed. They may need a wheelchair, a walker, or a cane to help them. They may also need help with daily activities, such as eating, drinking, bathing, dressing, or going to the bathroom. You can help your loved one by being patient, gentle, and supportive. You can also ask your health care team or hospice team for advice on how to make your loved one more comfortable and safe.
  • Cognitive changes: Cognitive means how your brain works. Sometimes, cancer can affect your brain and make it hard to think clearly. Your loved one may have confusion or memory issues. They may forget things, mix up words, or not recognize people or places. They may also have changes in their mood, behavior, or personality. They may become angry, sad, scared, or quiet. These changes can be very hard for you and your loved one. You can help your loved one by staying calm, gentle, and reassuring. You can also remind them of who you are, where they are, and what is happening. You can also talk to your health care team or hospice team about medicines or other ways to help your loved one feel better.
  • Changes in breathing: Breathing is how your body gets oxygen. Sometimes, cancer can make it hard to breathe. Your loved one may have breathlessness or labored breathing. This means they may feel like they can't get enough air or have to work hard to breathe. They may also make noises when they breathe, such as wheezing, gurgling, or rattling. These noises are normal and do not mean your loved one is in pain or suffering. You can help your loved one by raising their head with pillows, opening a window, or using a fan. You can also ask your health care team or hospice team for medicines or other ways to help your loved one breathe easier.
  • Emotional and spiritual changes: Emotions are how you feel. Spirituality is how you connect with yourself, others, and something bigger than yourself. Facing the end of life can make your loved one feel many different emotions. They may feel sad, angry, scared, guilty, or peaceful. They may also have questions or doubts about their spirituality. They may wonder why this is happening, what will happen after they die, or if there is a God or a higher power. These changes are normal and natural. You can help your loved one by listening to them, talking to them, and being there for them. You can also respect their beliefs and values, and help them find meaning and purpose in their life. You can also ask your health care team or hospice team for emotional or spiritual support, such as counseling, therapy, or services.

How to Best Care for Your Loved One

Caring for a loved one who has terminal cancer can be very hard and stressful. You may feel sad, scared, angry, or guilty. You may also feel tired, overwhelmed, or lonely. It is normal to have these feelings. You are not alone. There are people who can help you, such as your health care team, hospice team, family, friends, or support groups. You also need to take care of yourself, by getting enough rest, eating well, and doing things that make you happy.

Your loved one needs your care and support, too. They may also have many feelings and worries. They may need your help with their physical and emotional comfort. Here are some tips on how to do that:

Communication and Emotional Support

Communication means talking and listening. Emotional support means making your loved one feel loved and cared for. You can do this by:

  • Be present: Be there for your loved one, physically and emotionally. Spend time with them, doing things they enjoy or need. Hold their hand, hug them, or touch them gently. Show them that you love them and that they are not alone.
  • Listen actively: Listen to what your loved one has to say, without interrupting, judging, or giving advice. Let them express their feelings and concerns, even if they are hard to hear. Try to understand what they are going through, and show them that you care.
  • Offer reassurance: Reassure your loved one that you are there for them, no matter what. Tell them that it's okay to talk about their fears and worries, and that you will try to help them. Remind them of the good things in their life, and the positive memories you have together.

Physical Comfort

Physical comfort means making your loved one feel as good as possible in their body. You can do this by:

  • : Pain is when your body hurts. Pain can make your loved one feel very bad and unhappy. You can help your loved one by working closely with their health care team to make sure their pain is well controlled. Give them their pain medicines as directed, and watch for any side effects. Tell their health care team if their pain gets worse or changes. Ask them for other ways to relieve pain, such as heat, cold, massage, or acupuncture.
  • Positioning and mobility: Positioning means how your loved one lies or sits. Mobility means how your loved one moves around. You can help your loved one by finding a comfortable position for them, and changing it often to prevent bedsores and muscle stiffness. You can also help them with gentle movements, such as stretching, bending, or walking, if they are able to. You can use pillows, blankets, or cushions to support their body. You can also ask their health care team or hospice team for advice on how to position and move your loved one safely and comfortably.
  • Personal care: Personal care means helping your loved one with their hygiene and grooming. Hygiene means keeping their body clean and healthy. Grooming means keeping their hair, nails, and skin neat and tidy. You can help your loved one by assisting them with bathing, washing, brushing, shaving, or dressing, as they need or want. You can also help them with other personal tasks, such as using the toilet, changing their clothes, or cleaning their teeth. You can be sensitive to their preferences and privacy, and make them feel good about themselves.

Providing End-of-Life Care

There may come a time when the cancer treatment is no longer working, and your loved one is nearing the end of life. This can be an exceedingly difficult and emotional time for both of you. You may feel sad, angry, scared, or numb. You may also have many questions and concerns about what will happen and how to help your loved one. In this section, we will give you some tips on how to provide end-of-life care and ensure comfort and peace for your loved one.

: is a type of care that focuses on making your loved one as comfortable as possible in the last months, weeks, or days of life. Hospice care does not try to cure the cancer or prolong life, but rather to relieve pain and other symptoms, such as nausea, , or . Hospice care also provides emotional and spiritual support for your loved one and your family. Hospice care can be given at home, in a hospital, or in a hospice facility, depending on your loved one's needs and preferences. You can help your loved one by:

  • Talking to the doctor about hospice care. You can ask the doctor if your loved one is eligible for hospice care and when it might be appropriate to start. You can also ask the doctor for a referral to a hospice program in your area. You can find more information about hospice care from the National Hospice and Palliative Care Organization or the American Cancer Society.
  • Choosing a hospice program that meets your loved one's needs. You can compare different hospice programs based on their services, staff, costs, and location. You can also visit the hospice facility or talk to the hospice staff to get a sense of their philosophy and approach. You can ask questions such as:
    • What services do you offer and how often?
    • Who will be part of the hospice team and how will they communicate with us?
    • How do you manage pain and other symptoms?
    • How do you provide emotional and spiritual support?
    • How do you involve the family in the care plan?
    • How do you handle emergencies or after-hours calls?
    • How do you coordinate with other health care providers?
    • How do you bill for your services and what insurance do you accept?
  • Working with the hospice team to create a care plan. The hospice team will include a doctor, a nurse, a , a , a counselor, a home health aide, and a . They will work with you and your loved one to create a care plan that reflects your loved one's wishes and goals. The care plan will include details such as:
    • What medications and treatments your loved one will receive and how they will be administered.
    • What equipment and supplies your loved one will need and how they will be delivered.
    • What comfort measures and complementary therapies your loved one will use, such as massage, music, or aromatherapy.
    • What emotional and spiritual support your loved one and your family will receive, such as counseling, prayer, or rituals.
    • What legal and financial matters your loved one and your family will need to address, such as advance directives, wills, or funeral arrangements.
  • Providing care and support for your loved one. You will be the primary caregiver for your loved one, but you will not be alone. The hospice team will visit your loved one regularly and be available by phone 24/7. They will teach you how to care for your loved one, such as giving medications, changing dressings, or using equipment. They will also monitor your loved one's condition and adjust the care plan as needed. You can also ask for help from other family members, friends, or volunteers. You can help your loved one by:
    • Giving them their medications and treatments as prescribed and on time. Do not skip or change the doses without consulting the hospice team.
    • Keeping track of their pain and symptom level and how well the medications and treatments are working. Report any changes or concerns to the hospice team.
    • Providing comfort measures, such as massage, heat, ice, or distraction. You can also help them find a comfortable position, use pillows or cushions, or adjust the lighting or temperature in the room.
    • Being there for them emotionally and spiritually. Listen to their feelings and concerns without judging or interrupting. Try to be positive and hopeful, but also realistic and honest. Share your own feelings and fears with your loved one or someone else you trust. You can also seek professional help from a counselor or therapist if you or your loved one are feeling overwhelmed, depressed, or anxious.

Emotional Well-being: The end of life can be a time of mixed emotions for your loved one and your family. Your loved one may feel grateful, peaceful, or relieved, but also sad, angry, or scared. They may also have regrets, unfinished business, or unfulfilled dreams. You can help your loved one by:

  • Helping them find meaning and purpose in their life. You can help them reflect on their life story, their achievements, their values, and their legacy. You can also help them express their gratitude, forgiveness, or love to the people who matter to them. You can use different methods, such as writing, drawing, recording, or making a scrapbook.
  • Helping them cope with their fears and worries. You can help them identify and address their sources of fear and worry, such as pain, suffering, loss of control, or the unknown. You can also help them find ways to reduce their fear and worry, such as talking, praying, meditating, or breathing. You can also help them find comfort and hope in their , beliefs, or philosophy.
  • Helping them create cherished memories. You can help them make the most of the time they have left with their loved ones. You can help them plan and enjoy special occasions, such as birthdays, anniversaries, or holidays. You can also help them create meaningful gifts, such as letters, videos, or jewelry, for their loved ones to remember them by.

Conclusion

Remember, you don't have to face this journey alone. Reach out to your healthcare team, support groups, and friends for assistance and understanding. Taking care of yourself is also vital during this time, so don't hesitate to seek help and support for yourself as well.

Resources

American Cancer Society – Understanding Advanced Cancer

Caring for a loved one with cancer

Coping with cancer

Cancer help with the emotional side

Cancer: Three signs suggesting you have terminal cancer – seen in ‘palliative care' units

Understanding Hospice Care: Is it Too Early to Start Hospice?

What's the process of getting your loved one on hospice service?

Picking a hospice agency to provide hospice services

Medicare — Find and compare hospice providers

The Importance of Caregiver Journaling

Reporting Changes of Condition to Hospice

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Providing Comfort During the Last Days of Life with Barbara Karnes RN (YouTube Video)

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