The devastating effects of cancer are felt by millions of victims each and every year. Cancer has had a major impact on society not only in the United States, but on an international scale as well. It is estimated that approximately 38.4 percent of men and women will be diagnosed with cancer at some point in their lifetime.
While more advanced forms of cancer will require the patient to be hospitalized, many prefer the comforts of home if it is at all possible. Caring for cancer patients at home has become the central role of cancer caregivers. It is a mission we at CamWell™ fully support and empower as we also serve cancer patients themselves through our radiation cream, by treating hand and foot syndrome caused by Chemotherapy, and through cancer care packages.
There is no denying the terrible circumstances that surround the diagnosis of cancer. As a patient, you may find yourself feeling hopeless, sad, lonely, and despondent. As a family member or friend, a sense of helplessness and frustration may be felt in addition to the same emotions the patient may be feeling.
Of course, medical care is the first line of defense against cancer and throughout cancer treatment – early detection and prompt remedial procedures will go a long way towards getting the patient back on track to healthy living.
Aside from medical care, however, is the role of cancer caregivers as it pertains to caring for cancer patients at home. These friends and family serve an all important role in the treatment and recovery of the patient – mentally, physically, and spiritually.
Caring for Cancer Patients at Home:
What is a Cancer Caregiver?
While a cancer caregiver plays many roles and fills multiple needs of the patient in question, they do fit an official medical definition.
A cancer caregiver is defined as the person who most often helps the person with cancer and is not paid to do so. In many cases, the primary caregiver is a spouse, partner, parent, or adult child. If family is not available, close friends, co-workers or neighbors may fill this role.
In a good amount of cases that don’t require continuous medical supervision, cancer treatment takes place in outpatient treatment centers. Because of this, a cancer caregiver is needed to take part in the day-to-day care of the patient. Their role is expansive and covers a good amount of daily as well as long-term tasks.
Who are Cancer Caregivers?
A cancer caregiver can be anyone, from close family and friends to co-workers or in-home nurses. Caregivers have diverse characteristics and come from a multitude of different backgrounds:
- Most cancer caregivers tend to be women (58 percent of the population)
- 88 percent of cancer caregivers provide care to a relative
- Cancer caregivers are 53 years-old on average
- Despite the average age, Millennial caregivers spend more of their income (27 percent) on caregiving, and make less on average than their older counterparts
- Millennials make up 24 percent of the nation’s unpaid caregivers
The Role of the Cancer Caregiver – Relationship Support
First and foremost, the cancer caregiver serves as an immediate and primary emotional and mental resource for the patient. Cancer caregivers spend an average of 32.9 hours per week caring, and 32 percent of them provide 41 hours or more of care weekly – the equivalent of a full-time job.
As much of the patient’s time at home will be occupied in the presence of the caregiver, it’s important for them to maintain a positive attitude towards the situation and include the patient as much as possible.
Forging strong, meaningful relationships while caring for cancer patients at home can have a lasting impact on their well-being, as well as their ability to fight off sickness to a degree. Strong social ties are linked to a longer life, and having a variety of social networks may improve a patient’s ability to fight off infection or give them a more positive outlook on their diagnosis.
Physical contact has also been studied as a beneficial factor while caring for cancer patients at home – something as small as a cancer caregiver holding the hand of a patient can have a monumental effect on their immediate well-being. Physical contact has been known to trigger the release of hormones and brain chemicals that leave parties with an overall sense of happiness and general well-being.
The Role of the Cancer Caregiver – Nutrition
Nutrition is one of the most controllable facets of caring for cancer patients at home. Cancer caregivers play a big role in what the person they are caring for eats on a daily basis, and communication is key when it comes to making decisions – both with the patient themselves, and additional health care resources like the patient’s doctor.
Cancer treatment may affect appetite, depending upon if radiation therapy or chemotherapy was involved, and it may not always be comfortable or easy for the person you are caring for to have a meal. Be sure to communicate with the patient about these factors, as consistent nutrition is vital to not only maintaining healthy energy levels, but aiding in the fight against the cancer itself.
Perhaps just as important as the physical effects of proper nutrition, communication between cancer caregiver and patient is essential. A cancer diagnosis leaves many feeling a complete loss of control – foods, meals, when to eat and when not to eat are a few things patients may still feel like they have control over throughout the duration of their treatment.
How Food Can Help
Adequate nutrition can help at all stages of the fight against cancer, and food plays a very important role in cancer caregiver treatment.
Generally speaking, the American Cancer Society and the American Institute for Cancer Research recommend a plant-based diet. This whole food diet emphasizes vegetables, fruits, whole grains, legumes, nuts and seeds. It may also include lean proteins such as dairy, meats, poultry and seafood.
Cancer caregivers should pay special attention to the diet of the patients under their supervision – nutrition will help manage treatment side effects and aid in recovery post-treatment. In addition to this, adequate nutrition provides the body with energy to sustain itself throughout treatment.
Aside from the general diet recommendations, there are a wealth of foods that have proven to be beneficial for patients dealing with cancer treatments – cancer caregivers can discuss which options may be the most appealing to the patient.
This newly declared super-fruit has a great number of benefits, both for those suffering with cancer and healthy bodies alike.
Papaya is loaded with antioxidants and nutrients – both key allies in the fight against cancer. Antioxidants in papaya, such as lycopene, are powerful compounds with disease fighting qualities. These antioxidants are more readily available and better absorbed by the body when found in papaya than when compared to other fruits and vegetables.
Papaya also plays a large role in aiding with constipation – an unfortunate side-effect for many being treated for cancer. Studies have shown papaya as a contributor to the maintenance of digestive tract physiology.
Perhaps the most beneficial properties of papaya have to do with its ability to actually help prevent and fight against cancer. In a study completed at the University of Florida, researchers showed papaya as an effective anti-cancer agent – particularly as it related to cervical, breast, liver, pancreas and lung cancer.
Dr. Nam Dang of the University of Florida elaborates on the same study:
“This regulation of the immune system, in addition to papaya’s direct anti-tumor effect on various cancers, suggests possible therapeutic strategies that use the immune system to fight cancers.”
Additionally, papaya does not display any toxic or harmful side-effects on existing cells.
Phytochemicals are naturally occurring compounds found in plants. These powerful agents provide numerous benefits that stimulate the immune system and block the production of carcinogens. Phytochemicals have also been found to reduce inflammation that can trigger cancer growth, slow cancer cell growth, and reduce reproduction of damaged cells.
Phytochemicals can be found in various fruits and vegetables. Examples include:
- Beta-Carotene (pumpkins, sweet potatoes, carrots)
- Lycopene (red bell peppers, tomatoes, watermelon)
- Lutein (broccoli, brussel sprouts, artichokes)
- Polyphenols (green tea, grapes, whole grains)
- Anthocyanidins (blueberries, blackberries, plums, strawberries)
- Isoflavones (soy products)
- Omega-3 Fats – Regulate inflammatory response and cell growth (cold water fish, flaxseed, walnuts, grass-fed meat)
- Fiber – Encourage the growth of good bacteria in the gut (legumes, onions, barley, bananas)
- Spices – Turmeric, Garlic & Cinnamon
You can find additional information in the resource library related to other herbs that may help cancer, and plant-based considerations.
The Role of the Cancer Caregiver – Communication
As is the case in any relationship, communication will be one of the keys to a healthy pairing between caregiver and patient.
As a cancer caregiver, one of the most important duties is to care for the emotional well-being of the person with cancer. A good caregiver can help maintain a sense of comfort and support for a friend or family member that is suffering.
Communication, particularly as it relates to plans, meals, pain management as in the case of radiation burn treatment, or any other potentially sensitive subject should be done at a quiet time when both parties are available to talk. Remember, the patient you re caregiving for may feel a sense of lost control as it relates to many aspects of their life. Communication is one of the more empowering things to include them in. Some keys to effective communication:
- Choose a quiet time when both patient and caregiver are available to discuss any range of topics
- Ask if you can help with specific tasks or decisions instead of just assuming responsibility
- Be open to feelings and opinions of the patient, while still taking your own feelings and opinions into consideration
Tips for Being a Successful Caregiver
While the above are far and away some of the most integral parts of being an effective cancer caregiver, here are few additional tips and strategies to take into account:
- Caregiving is a Team Effort – While you may be an important person in charge of care, the patient’s friends, family and doctors are all apart of the team with you. Include these people in your discussions and decision making.
- Create Task Lists – Make a list of all your important caregiving duties and prioritize them by importance. This list will also help you divide specific tasks between yourself and other members of the team.
- Be Proactive – Take charge as much as possible and plan things out to prevent last minute emergencies.
- Stay Positive – A positive attitude is of the utmost importance. Positive attitudes can set the tone for all you do, and will provide the patient with reinforcement and support.
The Truth About Caregiver Burnout
Of course, caring for someone with cancer can be an intensive process. Aside from the mental anguish you may experience while seeing a loved one in pain, chances are as a cancer caregiver you’ll experience some extreme fatigue and problematic symptoms yourself over the course of your caregiving.
It’s important not only to consider the feelings and well-being of the person you are caring for, but your own as well. Knowing yourself – your strengths, weaknesses, and areas of expertise, is critical for maintaining a healthy long-term caregiving situation for you as well as the patient.
What is Caregiver Burnout?
It’s important to differentiate between caregiver stress and caregiver burnout.
Caregiver stress is defined as stress that results from the caregiver not having the time to do all that is asked of or expected from them. If you fall into this category, you may be experiencing a feeling of everything being on your shoulders. You may also feel as though no matter what you do, it’s never enough.
Caregiver burnout, on the other hand, is defined as burnout that occurs when the cancer caregiver is in a state of stress or distress for a prolonged period of time.
While caregivers in all situations may experience burnout and stress, cancer caregivers have it especially difficult. A study showed that, among caregivers observed in all facets of illness, cancer caregivers experienced the highest symptom burden of fatigue.
Both instances, however different, are causes for concern. Particularly because it’s nearly impossible to provide a high-level of care to a patient when you are not taking care of your own needs as well.
Causes of Caregiver Burnout
Cancer caregivers experiencing caregiver burnout and/or caregiver stress can attribute it to a wide variety of potential reasons. In particular, these causes are the most common amongst the group:
Fear & Uncertainty – Cancer treatment comes with a sometimes overwhelming amount of questions. These questions lead to uncertainty amongst both the patient and the caregiver. Many times caregivers find it difficult to not worry about the future as it relates to the person with cancer.
Too Much to Do – The most common cause of caregiver burnout, you may often feel as though you simply have too much to do, and that everything is falling on your shoulders.
Loneliness/Isolation – As many caregivers spend much of their free time providing care, it’s sometimes difficult to make time for themselves. Caregivers often report not having time to spend with their friends, attend social functions, or participate in activities.
Financial Pressures – Cancer treatment is costly, so it’s natural that financial situations may be a source of stress. Additionally, caregivers may find themselves unable to work full-time because of their caregiving duties. Thus, the financial burden also moves into their personal life.
No Time Alone – It’s always important to carve out a little bit of time for yourself. Many times, caregivers are so overwhelmed with providing care that they do not make time for themselves to disconnect and get away.
Guilt – It’s common for caregivers to feel as though they aren’t giving enough or that they could always give more. A destructive cycle that will wreak havoc on your emotional well-being.
Symptoms of Caregiver Burnout – Mental & Emotional
Caregiver stress and burnout can affect everyone in different ways. It’s important to be aware of the symptoms you may be exhibiting – this allows the caregiver to be more in-tune with their feelings and more aware of giving themselves the time and space needed to reset.
- A general feeling of out-of-control
- Inability to focus on tasks
- Unsatisfied with work – whether it be the caregiving work or your career
Symptoms of Caregiver Burnout – Physical
Of course, aside from the mental and emotional side-effects, you may be experiencing physical changes and symptoms as well. Be aware of your body, particularly if you are experiencing any of the following:
- Sleep problems
- Muscle tension
- Stomach problems
- Weight gain or loss
- Chest pain
- Heart problems
- Hair loss
How to Cope with Caregiver Burnout
Despite all of the negatives associated with caregiver burnout, there are plenty of ways to combat its effects. Pay close attention to yourself and your feelings – this is your first line of defense against burnout. Aside from that, here are some helpful strategies that can provide help for caregivers of cancer patients:
Recognize Your Symptoms – Pay attention to yourself! It’s important to not always dismiss things as “just stress” or chalk it up as a bad day. Catching your warning signs early goes a long way towards helping you combat them.
Ask For Help – As we’ve discussed, caregiving is a team effort. If you think you need help, ask a friend, family member, or medical professional for it.
Take Care of Yourself – Even though caretaking will take up much of your time, it’s important to still take care of yourself both mentally and physically. Drink plenty of fluids, eat well, and exercise as often as you can. Meditation and yoga have also proven to be beneficial.
Identify Your Sources of Stress – It’s helpful to make a list of the biggest causes of stress related to the care you are providing. This will make things more manageable for you and dissolve the feeling of being overwhelmed.
Take Time for Yourself – Do not be afraid to ask a friend or family member to take over for a day. It’s important to give yourself time to experience your own life throughout the care process.
Educate Yourself – Acquire as much information as you can relating to care and the sickness itself. This can be from books, the internet, or the medical professional in charge of care. Knowing is half the battle, and will help you deal with feelings of uncertainty.
Learn How to Say No – It’s ok to set limits on what you will and won’t do as it relates to caregiving. Learn how to politely decline suggestions that you may feel will be difficult to accomplish.
Be Kind and Patient with Yourself – It’s normal to occasionally deal with bouts of anger or frustration. Allow yourself to feel these feelings and process them, as well as finding positive ways to cope with the feelings. Talking with someone or journaling your thoughts are great starts.
Learn About FMLA – The Family Medical Leave Act requires employers with 50 or more employees to provide up to 12 weeks of unpaid, job-protected leave for employees who need time off to care for a seriously ill family member. Employers must continue employee benefits during this period – a potential huge weight off the caregiver’s shoulders should they find themselves needing extended time away from employment.
Explore Financial Assistance – The financial burden of both cancer care and lack of full-time work can become a sufficient source of stress for caregivers. Find out if the hospital or center where the patient is receiving treatment provides some sort of financial counseling service.
Cancer Caregivers Support Groups
In addition to the various coping strategies outlined, cancer caregiver support groups offer beneficial resources to caregivers suffering from stress or burnout. Support groups not only provide a valuable resource for continued education and coping strategies, but also help to reduce feelings of loneliness as they are comprised of many people in the same position.
These cancer support groups allow cancer caregivers to share their experiences with others in safe environment. These can be peer-led, professionally-led, or simply informational. Oncology social workers can help point you in the direction of the group that may be best for you. The patient’s cancer center may also have their own support network program for you to utilize. A list of cancer caregiver specific support groups can be found here. If you need to connect with likeminded individuals, please take the step today.