Your Journey As A Caregiver:
Parents and Spouses

Finding out a loved one has cancer and then being there for them is a big adjustment; one that can take a toll on you, regardless of how prepared you are. If you are a family member such as a parent or spouse, chances are you are the primary caregiver. 

As hospital stays become shorter than they used to be, cancer patients today receive a large part of their care at home. More people are opting to be cared for at home as much as possible. This care is often given by family caregivers. 

As a parent or a spouse, your role is to liaise with the doctor and undertake the healthcare formalities along with taking care of the in-house care. You play an important part in improving your loved one’s health and quality of life. Your role involves helping the patient with medicines, doctor visits, meals, and health insurance matters. It also includes giving emotional support and making hard decisions on their behalf. 

You have one of the most important responsibilities of monitoring and observing changes in the patient’s medical condition while giving long-term care at home. It thus becomes imperative for you to get involved right at the beginning of the cancer care process. Your role evolves as per the needs of the cancer patient and that is something you may need to quickly adapt to.

This in no way implies that your own needs aren’t important, which is why it is important to take time for yourself and ask for help wherever necessary. How you respond to the cancer diagnosis and treatment is just as important; your feelings and emotions need to be taken into consideration. As a primary caregiver, you need to take out the time to deal with and process this change. Here are a few ways you could try to cope better, along the various stages of treatment.

During Diagnosis

Your role as a primary caregiver begins when the cancer is first diagnosed. You may take on new responsibilities, such as learning more about the cancer you’re dealing with, new medical terms, and researching possible treatment options.

It is helpful to start your cancer care journey by understanding the basics of cancer and how the disease originates. Learn about cancer, how it develops in the body, and what causes it. Read more

Here you can learn about the crucial aspects of cancer screening and diagnosis, and what to expect along the way. Read more

During Treatment: at Home

While the shift to a home environment is a welcome change for the patient, it generally means added work for the caregiver. You can prepare yourself early and help make this transition easier for yourself and the patient by:

  • Getting extra help
  • Setting and stocking up on necessities
  • Taking care of medicines and meals
  • Scheduling doctor visits, plan travel to and from the visits, and go with the patient to them
    In some cases, cancer and its treatment can have debilitating physical effects on the patient’s body.

Your loved one may experience side effects like pain, fatigue, or hair and weight loss issues. Studies show that focusing on physical well-being and remaining active during treatment can help patients cope with the side effects of treatment. Read more

During Treatment: at the Hospital

Prior to starting treatment, you might need to help your loved one make treatment decisions. It is important to be on the same page with your child or spouse to ensure a smooth transition into the treatment. In addition to talking to the doctors, you can help them by:

  • Taking on many of the patient’s household duties
  • Scheduling hospital visits and plan travel to and from the visits
  • Arranging for home care
  • Taking care of insurance matters

Empower yourself through an ongoing process of self-education about your loved one’s cancer journey. Always remember to stay positive and hopeful. Sometimes, cancer treatment may span over a couple of months or even years. Since cancer is a multidisciplinary treatment – which means that several different types of healthcare professionals will be involved in the care – make sure you take informed decisions about selecting your loved one’s cancer care team. You and your team will then work together to chart out an effective treatment plan and manage various aspects of the cancer care journey. In addition to the core treatment, also focus on making lifestyle changes that will boost your loved one’s overall physical, emotional and social well-being.

This section will help you understand the different types of cancer treatments and their side effects. Read more

After Treatment

It may seem like life might go back to normal once treatment is over, but that is rarely the case. Your role may change once again as the situation changes, and you may have trouble adjusting for the first year after the end of treatment.

A lot of this can be attributed to the fear of remission. It is perfectly normal to be worried that your loved one’s cancer will come back after they have completed their treatment. Certain types of cancer have a higher risk of recurrence. It is important to have an open discussion with members of your clinical team to discuss the specific type of cancer your loved one is battling and be aware of the risk of recurrence. It is also important to be vigilant; encourage the person you are caring for to perform frequent self-examinations. You can help by scheduling regular follow-up scans and check-ups with the clinical team. Read more

People with cancer may often hesitate to talk to their spouses about the effects of the treatment on their sexuality and fertility. Feelings of unease or discomfort are common while talking about these issues and many patients find it hard to candidly discuss what they are going through. It is important to address these issues, talk to your spouse and their physician about them, and learn the best way to cope. In this section we have more information on the effects of cancer and its treatment on sexual well being and fertility. We also offer guidance on having a frank and fulfilling discussion with your partner about these issues. Read more

Towards the end of life

Sometimes cancer may stop responding to all treatments, and your loved one may start deteriorating rapidly. This may be the most difficult and emotionally taxing part of your cancer care journey, since you may need to consider the fact that continuing treatments will not improve the health of your loved one or increase their chances of surviving cancer. Being prepared to deal with the eventuality of what may happen towards the end of the cancer care journey will enable you to deal with the physical, and emotional aspects of the situation. Refer to this section for more information on what to expect when the end of life due to cancer may become a reality. Read more

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