Summary: When caregiving for a cancer patient, there can be a roller coaster of emotions that the caregiver will face at varying times from diagnosis, to treatment and aftercare. Here you can learn about the different stages of caregiving at various times during the treatment journey and learn what to expect. While the emotions and feelings are different for everyone, the same heavy load of patient care will evoke them at some point. Caregivers need to take care of their personal mental, physical and emotional state to ensure that their patient can recover and get back to their usual quality of life. If you are struggling to find your place in the caregiver role, reach out to your doctor to see if there is a best option to help get you back on track.
With almost two million new cases of cancer per year in the United States this year alone, many patients will eventually require or need the support from their family and friends in the form of a caregiver. Statistics show that family caregivers form the base of the American health care system, as their support help in treatment, advances and overall patient healing done at home, rather than in a hospital or medical care facility.
Caregivers, informal caregivers, support person, or home nurse are all terms that portray the same job: helping to provide personal and medical care for your family member or ill friend. The services that caregivers provide encompass a wide array of topics and situations. This type of support may include the physical, psychological, spiritual, and emotional areas, as well as all medical aspects. In most areas, more women than men become caregivers, and most caregivers are over the age of fifty-five (ACS).
Family based caregivers are a vital resource for the patient not only physically, but also in the management of cancer. Having a caregiver present at all appointments and there to assist with nursing and care duties help the patient to stay on their recovery plain, which can lead to faster, quicker healing. Many oncology teams now recognize the importance of a stable caregiver for their patients and try to include them in any planning, treatment decisions, decision making, and implementation.
Caregivers at Various Times during Cancer Treatment
Caregivers are humans, too, and have the same emotions, worry, fear and wonder that the patients do. Caregiver’s roles and burdens are affected and change often by a patient’s prognosis, how they are handling their cancer, stage of their illness, and ultimate goals of the medical care team, and the patient. Many medical offices and practices are working on expanding the roles of the caregiver to include more help during adjustment phases, and in the acute survivorship phase when, and if, it arrives.
Caregivers are expected to take on and learn an immense amount of information. They must learn about medications, terminology to help understand appointments and updates, as well as getting to know their patient in a way that may be unfamiliar, or not entirely comfortable for them. These types of newly, almost forced learned behaviors and things can cause caregivers to face a myriad of emotions and feelings during the treatment process.
At the time of diagnosis, your caregiver may feel that they need to learn as much as they can about your cancer and upcoming treatment. They may feel expected to:
- Integrate new medical information
- Learn new illness-related terminology
- Enter a new treatment setting
- Find the time to accompany the patient to medical appointments.
During your hospitalization and treatment, your caregivers may help advocate for you to ensure your wants and desires are fulfilled. How well a caregiver does at this role may depends on how their relationship was with the patient before the diagnosis existed. The level of agreement between the caregiver and patient also play a detrimental role in how caregivers cope with the load of stress and emotion. One tool called the Cancer Communication Assessment Tool for Patients and Families, to check the caregiver-patient relationship, can be used on patients, caregivers, or both by their oncology team, and helps to identify specific areas of conflict that may arise during this relationship. This study focuses on:
- Greater patient depression
- Higher perceived family conflict
- Lower patient and caregiver well-being
- Less expressiveness
- Lower perceived family cohesion.
In this phase of treatment where many hospital visits and stays are in order, many caregivers report feeling that they are juggling demands, workload, scheduling and arranging for home care when they cannot be there. Staying frequently at the hospital is tiring for the caregiver and can further push the emotional drain.
As you plan for and transition back into your home, this can be one of the most stressful times for the caregiver as well. The first days back in the home setting can help boost comfort levels, but also increases stress levels as the true ability and need of the patient will be seen. Many patients find themselves wanting to be homebodies while they recover and gain back their strength. This can mean that the caregiver is also stuck being at home and does not get to get out into the world as much as they need or did prior to treatment and aftercare.
After the first weeks have ended, there should be a better sense of the routine and care that will be needed from the caregiver. This will then allow them to make any other or extra home care plans with a nursing company to help ease that load. At-home nursing care professionals can help with a wide variety of medical aspects. This could be anything from helping with hygiene and bathing, to cooking for the patient a certain amount of times per day. For some, this might mean having someone there during the day while the caregiver works their main job.
There are many other services that can now assist the caregiver who is providing at-home care for the patient. On top of at-home nursing services, there are also organizing services, medical and food delivery services, grocery delivering services, and many in-home therapy services. Car services can help transport your patient to and from their appointments safely and allows you to monitor where they are and when.
Surviving as a Caregiver After Treatment & During the End of Life Care
Much of the stress and chaos that caregivers report arises from heightened fear and worry about their patient, distress that they have lost control of their lives, elevated concern of reoccurrence, and sexual frustration when the patient is their partner. Certain factors may help to predict how a caregiver will fair in handling this situation and their patient. These factors are:
- Strain in the relationship between caregiver and patient
- Negative communication patterns between caregiver and patient
- Less social support
- Role overload.
Caregiver quality of life has been found to be influenced by the cancer patient’s stage of illness and goals of care. Studies have shown that caregivers for end of life patients have lower quality-of-life scores and overall health scores than those caregivers of curative treatment patients. When it comes to recurrent illnesses, terminal illness or the dying process, the caregiver must meet a new set of emotions, challenges, and the reality of the circle of life.
Those caregivers giving end of life care report increased emotional distress, increased physical body ailments, lack of sleep, anxiety, depression, lowered self-esteem, and somatic health issues. There are certain aspects of caregiving during palliative care that relate. They are:
- Concern for quality of life of both patients and family caregivers.
- Involvement of caregivers in symptom management, communication, and medical decision making.
While your cancer doctors and medical team may not be able to assist with the mental anguish and distress of your caregivers or family members, simply noting and recognizing the symptoms aloud can help identify what is happening so that the caregiver can seek out help or services that may be of assistance and help to them.
If you have noticed that your caregiver seems more stressed out than usual, consider sitting down to talk with them privately, or in the presence of your doctor if you are more comfortable. Never allow a stressful situation to build. The caregiver-patient relationship is vital in the fight against cancer!