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Organizing Caregiving

Create a list of caregiving tasks. Consider creating your own caregiving map to help organize roles, tasks and activities that would arise throughout the trajectory of the cancer progression. Depending on your loved one’s own coping ability, as well as the type of cancer and stage, there are different roles and tasks that you may need to take on. It may help to start by making a list of all of your caregiving tasks. You can try to list them in order of importance. Every cancer patient deals with cancer in his or her own unique way. Thus, it is important to assess if what you do in your caregiving is relevant in meeting the needs of your loved one.

By recognizing your personal strengths, available resources and limitations, you have a rough guide towards drafting a reasonable caregiving plan. A caregiving plan is a plan that can help you take better care of your loved one by laying out key tasks that need to be accomplished in managing the health and well-being of your loved one. This plan can help you better manage various caregiving and medical schedules, serve as a communication tool and help you plan for help in advance.

Caregivers often try to balance their caregiving with other responsibilities. Having a caregiving plan can help you get organized and maximize your time. When making a caregiving plan, it is important to work with your loved one to understand his or her wishes, needs and situation, and so that he or she will be more motivated to cooperate and follow through with the plan. It may be worthwhile to consider other family members’ input on this caregiving plan to foster open communication and minimize potential conflict. Consider your loved one’s diagnosis, prognosis and needs. Know what medication and equipment your loved one needs. Be aware of what the treatment goal (immediate, medium-term and long term) is for your loved one. Care needs may increase or decrease along the cancer journey and caregiving tasks may change as the person’s health changes. It is always good to be ready to anticipate changes to your caregiving plan and your loved one’s health goals. Learn about the roles played by different healthcare professionals so you know how they can complement your role as a caregiver. Sharing with the healthcare team about your family values and beliefs help them to understand what treatment options and care preference are important to your loved one.

You may want to organize a caregiving file to organize various caregiving information. You may want to include the caregiving plan in this file. You can also file your caregiving notes and pointers in this file, as well as a contingency plan of what to do in case the primary caregiver or key service providers are unavailable at some point. Photocopy important documents (such as medical records and test results) and keep them in the caregiving file. Keep a list of contact details of your family members as well as healthcare professionals in this file for emergencies. You may also want to include a timetable of how different people involved in the caregiving can help in the caregiving duties.

Enlist the support of others. Remember that caregiving is a team effort. As a caregiver, you are part of a team of family members, friends, neighbors, supporters, volunteers and health care professionals. Together with others you may be able to come up with creative solutions for your loved one’s caregiving needs. They may have strengths and skills that can complement your role. As everyone may have their own views on how care should be provided, you may want to hold a family meeting to ensure that there is a discussion of different perspectives. This ensures that everyone in the family is able to participate in planning and decision-making about supporting your loved one. This way, there can be a clearer understanding of who is available to help and how each member of the family can contribute in caring for the loved one. The meeting will also ensure that everyone is on the same page in understanding your loved one’s medical condition and needs. You can consider family meeting based on demand. As there is a likelihood that care needs will be changing, it may take more than one session throughout the caregiving journey. You may also want to get assistance from a social worker in facilitating the family meeting to make best use of the time spent.

Consider tapping on professional and volunteer resources and services. Services may include professional home care, therapy services, meals delivery, medical escort services, respite care and help with everyday activities. Depending on the type of services and your family’s household income, you may qualify for subsidies for some of the services.

Making informed healthcare decisions as a cancer caregiver - discuss all the relevant information, factors and options with your loved one as well as your family members involved in the care to ensure all the pros and cons have been considered before coming to a conclusion. Consider making decisions that are in the best interests of your loved one. Explain to your loved one how some decisions were arrived at and make sure he/she understands the decision.

For more practical tips, visit NCCS’ write up at https://www.nccs.com.sg/patient-care/providing-care.

Communicating With Your Loved One

As a caregiver, being able to communicate constructively and effectively is crucial. Your loved one may not be the same person he/she used to be. It is important to have an open and honest conversation with your loved one about what both of you want.

Keep open lines of communication: Try to maintain two-way communication between your loved one and yourself and between your family members involved in the care. Have an open and honest communication of you and your loved one’s expectations and frustrations without judging what he/she shares. It is important not to assume. Ask what will or will not be helpful for your loved one. In your communication, avoid comparing your experiences, or your family member’s experiences with those of other persons who had cancer as each person’s experience with cancer is unique. Focus on being a good listener. Be patient. Avoid steering conversation to your own agenda and imposing your own views without listening to what your loved one has to say. Especially in conversations with difficult emotional content, it is important to reflect (rephrase back in your own words) what you think your loved one is trying to say and check in if you understood him/her correctly. Be alert to all cues, including non-verbal ones (e.g. hesitations, pauses, inflection, tone, volume, facial expression, body posture, breathing, etc) when you are communicating.

Coping with conflicts: As a caregiver, you do not only have to deal with your loved one’s illness but also individual and family dynamics. Remember that your loved one will have his or her own wishes and personality even though he or she has cancer. He/she may have certain choices that you may not agree with. Try to diffuse the tension by practicing listening with empathy. Acknowledge the feelings of your loved one and try to understand where he or she is coming from. Try to discuss your concerns openly by focusing on the issue. Focus on facts without attacking the person. Remember to keep your loved one’s best interests as your priority when disagreements occur. It may be helpful to involve a neutral party, to offer another perspective on the issue. It may also help to put plans and agreements down in writing to prevent misunderstanding.

Breaking bad news: If your loved one has been diagnosed with end-stage cancer, or if your loved one’s condition has deteriorated, sometimes you may find yourself having to break bad news. It is recommended that you find suitable support to disclose the news together. You may get professional help from a social worker to facilitate such difficult discussions. Prepare yourself for such difficult discussions by making sure you are ready. You may like to note down what you like to say on a piece of paper. If your loved one feels that you are comfortable with the topic, it will make him or her more at ease to discuss it. As far as possible, try to use language that is direct, clear and easy to understand. Try to keep your sentences short. Check in on how much details your loved one may wish to know without being overwhelmed. Your loved one may need privacy and time to accept and adjust to the news. Be sensitive to his/her needs. Do check in on how your loved one may want to release the news of his/her diagnosis. He/she may want you to inform all relatives and friends, or quietly keep the news within the family. Being on the same page with your loved ones for the disclosure of illness may help prevent any unnecessary misunderstanding.