Caregivers: Facing Advanced Cancer
Facing advanced cancer—whether this is the initial diagnosis or the cancer has returned, is never easy. You and your loved one are now going to have to adjust to a new normal in which you will be dealing with cancer and cancer treatments on an ongoing basis. There will be good times and there will be hard times.
If you were with your loved one the first time he or she had cancer, you have already gained the experience you need to adapt to the situation. If you were not with your loved one the first time she or he had cancer, you will want to talk to them about some of the things that did and did not work well in the past. Together, you will learn how to live with this new reality.
As much as possible, try to share your feelings and concerns about what you are facing with your loved one. If you can cry, laugh, debate and worry with each other, you will feel a greater sense of connection and understanding. If you are not able to share all of your feelings with your loved one, consider reaching out to a counselor and/or joining a support group.
As a caregiver for a loved one with advanced cancer you may want to:
One important thing to do is to help your loved one think seriously about his or her priorities. What is most important? How does he or she want to spend her time? Who are the people that matter most in your lives? Your best, shared decisions will take into account both of your hopes and wishes, family needs, finances, available support and resources. You may have different feelings about these issues. Your loved one may want to stop working and spend time traveling while you may be worried about paying bills and keeping your job. Your loved one may not want to tell anyone about the new diagnosis while you may want to tell close friends so that they can help and support you. It is important that you talk about these things and, if necessary, find ways to compromise.
Since your partner is the patient, remember that he or she makes the final decision. However, your opinions are important too, and you need to honestly express your thoughts and feelings. It is generally good advice to avoid making major changes right now. Give yourselves a little time to adjust to this new situation, and then you will be in a better position to know what you need and want to do.
Your loved one’s values and beliefs should guide medical choices, not the other way around. While none of us likes to think about life’s end, most of us do have ideas about what we would and would not like to have happen. It is important to talk about planning for life’s end when your lone one is feeling well, so that you have a plan in place to talk about with the health care team. Answers to questions like: “At what point would your loved one wish to stop active treatment?” and “What is most important to him or her at this time?” can help to guide everyone on the care team.
In general, advance care planning is when a patient decides and writes down his or her goals and wishes for specific treatments. Knowing what a person wants can help doctors make the right decisions about treatment. Preparing for this to happen will help you not have to make decisions in the middle of a crisis.
There are several important documents to consider for advance planning. If you have questions, please speak with your doctor, nurse, or social worker.
Advance Directive: This is any statement, oral or written, a person makes about his or her choices for future treatment. It will be very useful if your loved one becomes unable to make decisions. It is best if this is a written document. Most doctors have a state form you can fill out. It is important that your doctor(s) have a copy, and that you and your loved one keep your copy in a place where you can easily get it.
Health Care Proxy: This allows you to give another person the legal power to make medical decisions for you if and when you no longer can make decisions for yourself. The written form used to appoint the proxy is often called the “durable power of attorney for health care.” In many states this form is combined with the advance directive.
Living Will: This is a legal form that states how you wish to be treated if you can’t make decisions due to illness, injury, or old age. It states whether or not you would like to be placed on life-support if your body cannot survive without it.
Last Will and Testament: A legal document that defines what will be done with property, money and other possessions (including care for children) after a person passes away. Guardianship for young children or dependents may be a key element of a Last Will and Testament. If a Will is not written, state laws will determine how wealth is passed along to family members. This can be a lengthy, and sometimes expensive, process.
Manage Pain & Other Symptoms
When a cancer can no longer be cured, you and your loved one will need to make decisions about whether a treatment that may extend life for a few weeks or months is worth taking if it will have serious side effects that will affect how your loved one might enjoy those extra weeks or months.
There also will be a new focus on managing pain and other cancer-related symptoms and side-effects, like being tired, nauseous and, possibly, breathless at times. Encourage your loved one to report all of these symptoms to the doctor, so he or she can help find relief. In order to help the doctor understand the pain your loved one is experiencing, ask him or her to describe as best as they can, including where it is, how it feels, when it began, and how much it hurts on a scale from 1 (not very painful) to 10 (very, very, very painful). It is important for him or her to take pain medication as prescribed to manage the pain. This is called “staying ahead of the pain.” Talk to you healthcare team about the types of pain medicines available to relieve symptoms.
Quality of Life Resources
People facing metastatic disease have a variety of needs, including comfort, family support, and guidance. Most people benefit from talking to a hospice or palliative care team. Many people confuse palliative care with hospice. They are not the same.
Palliative care can start at any point in a patient’s experience to treat pain and other symptoms. The goal of palliative care is to achieve comfort, manage symptoms and improve quality of life. Palliative care is also called symptom management, comfort care and supportive care. Many medical institutions have a palliative care team made up of doctors and other health providers trained in pain and symptom management. Palliative care is not hospice.
You and your loved one will want to discuss questions such as these with the treatment team:
- How can we reduce the pain?
- How can we improve quality of life?
- What are your loved one’s preferences?
- How can I help the person I care about?
- Are there special things that my loved one wants to experience? What kind of medical support will we need to make that happen?
Hospice care is a coordinated program of care that uses a team of health care professionals to reduce pain and other symptoms and support patients and their loved ones in the last months of life. Hospice care involves a team of doctors, nurses, social workers, chaplains and volunteers.
Respite care is short-term care that helps caregivers take a break from the daily routine and stress of caregiving. It can be provided in your home or elsewhere. Respite care is an essential part of the overall support that families may need to keep a person with late stage cancer living at home. Sometimes it involves getting a health aide to take care of your loved one while you take time for yourself.
Initiate Hard Conversations
You may wonder how long your loved has to live, and you may experience fear, sadness and grief when envisioning the future. You may also find it difficult to talk about such painful topics. Finding ways to talk about what is happening can be very helpful to both of you. Most people feel relieved once they begin to have conversations about death and the future. Not only can it help you to know what your loved one’s wishes are, but it also helps both of you feel less alone.
If you are having trouble getting started, seek the help of a social worker or counselor skilled in working with people with cancer, or talk to a spiritual leader you trust. Often, you are both scared. Just admitting your fear may be enough to get the conversation started. Among the most important discussions are those involving hopes about living life. For example, you may want to discuss thoughts about being with family, quality of life, being at home, and making peace with your circumstances, to mention a few. Perhaps these can be uplifting conversations that give you both a sense of peace.
As you think about losing your loved one, there are specific things you can do to take care of yourself. You may want to:
- Think about what you can do to take care of yourself. Taking a walk, getting rest, drinking less alcohol and eating well, will help you find the strength you need to manage your emotions.
- Give yourself permission to take a break from your sadness. It is okay to laugh or have fun in order to relieve the stress and tension that grief brings into our lives.
- Consider ways to deal with your fears and emotions by talking with a professional, faith leader or joining a support group for caregivers or a bereavement group.
- Know that you may experience a range of emotions including sorrow, anger, relief, confusion and a deep sense of longing.
- Relax your expectations of yourself. You may not be able to do all the things you are used to doing and that is okay.
- Remember that everyone goes through this process in their own way and at their own pace. There is no “right” way.
- The loss of a loved one can be a roller coaster of emotions and deep sadness is a normal response. If you feel a deep sense of guilt, thoughts of suicide, can’t stop thinking about death or dying or can’t function in your daily life, please seek the help of a professional counselor.
Information provided by Cancer Support Community.