Cancer Nutrition Network for Texans
The Caregiver Module
Part One - Understanding Caregiving
Introduction
Caregiving Statistics
Caregiver's Bill of Rights
Common Questions During Caregiving
10 Signs of Caregiver Burnout
Weekly Checklist for the Caregiver
Weekly Checklist for the Carereceiver
Part Two - Understanding Cancer
What is Cancer
What is Staging
Types of Treatment
Side Effects
Part Three - Caregiving for the Cancer Patient
Personal Care
Nutrition
Physical Conditions
Emotional Conditions
Part Four - Resources for Caregivers
Part One: Understanding Caregiving
Introduction
The Caregiver is the primary person responsible for providing care to the person in need. While the Carereceiver is the person in need receiving the care.
Learning a loved one has been diagnosed with cancer and deciding to take on the responsibilities of being the primary caregiver can be a life altering experience. Few people are ever emotionally, physically, or financially prepared for the responsibilities and tasks involved in caring for a loved one with cancer. During this time, caregivers may experience many mixed and strong emotions. Love and pride for your family member and the satisfaction you derive from helping your loved one. While some feelings of resentment about the loss of your privacy, frustration about feelings of loss of control, as well as difficulty accepting the decline of health the person for whom you are giving care may experience. To protect yourself against becoming emotionally and physically drained, the caregiver must take care of himself or herself. It is very important that the caregiver maintains their mental and physical health as well as, develops ways to cope with daily stress. It cannot be stated strongly enough; the caregiver is a vital part of the caregiving equation! The success of the equation is dependent on how well the caregiver cares for him/herself.
To help make the task of caregiving as comfortable and successful for both the caregiver and carereceiver, it is important to understand the responsibilities and roles of the caregiver, the needs of the carereceiver as well as the caregiver, and develop a plan, which accommodates both. This Caregiver Module, which offers practical approaches to common caregiving problems, has been developed primarily for the caregiver of the cancer patient, but family members who are not primary caregivers should also read this module to understand and become more aware of the daily challenges facing caregivers. Serving as the primary caregiver for a loved one with cancer should not make life meaningless. You must remember you are NOT alone!
Caregivers are problem solvers
Caregiving involves solving problems. You have been solving problems throughout your entire life. The only difference now is that many of the challenges that come with cancer are not only new to you but to the person with cancer you are assisting.
Caregivers are team players
Working with the person with cancer, other family and friends as well as the medical staff means you are part of a team to help the cancer patient through their time of need.
Caregiving can have important benefits
Caring for a person with cancer at home can give you a sense of satisfaction and confidence and can show you inner strengths that you didn't realize you had. Caregiving can bring families together and can help people feel closer to the person who needs care.
Caregivers need to take care of themselves
Helping someone who is going through cancer treatments can be difficult and stressful for you. The more you care for your own needs for rest, food, enjoyment, and relaxation, the better you will be able to help the person you are caring for. These ideas are important because they will help you to be a better caregiver.
Taking care of your own needs and feelings
You need to be at your best to do the best job of helping. Therefore, pay attention to your own needs as well as those of the person you are helping. Set limits on what you can reasonably expect yourself to do. Take time off to care of or yourself and your needs and ask others for help before stress builds up.
Schedule positive experiences for yourself, such as
- Enjoyable activities with other people
- Activities that give you a sense of accomplishment
- Activities that give you a sense of accomplishment
It's important that you reach out to others and involve them in your life as well as in your caregiving. This is also important for the person you are caring for.
- Make a list of people who can give companionship and positive support to you and the person you are caring for with cancer.
- Go down your list and for each person think what you could do to make a visit pleasant and enjoyable.
- Have a list of ways visitors can help or assist you in case they offer or if you feel comfortable asking.
Suggestions for dealing with strong feelings you may have
It is natural to have strong feelings when helping someone with a serious illness like cancer. The following is a list of strong feelings that caregivers can have and suggestions for dealing with them if they become severe.
Feeling Overwhelmed
- Try not to make important decisions while you are upset
- Take time to sort things out
- Talk over important problems with others who have been level headed and helpful in the past
Anger
- Try to see the situation from the other person's point of view and understand why he or she may have acted that way
- Express your anger in an appropriate way before it is severe
- Find safe ways to express your anger
- Get away from the situation for a while
Guilt
- Talk to other people who have gone through similar experiences about what happened and how they felt
- Don't expect yourself to be perfect
- Don't dwell on mistakes
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Fear
- Learn as much as possible about what is happening and what may happen in the future
- Talk to someone about your fears
Loss and Sorrow
- Talk about your feelings of loss with other people who have had similar experiences
- More than one quarter (26.6%) of the adult population has provided care for a chronically ill, disabled, or aged family member or friend during the past year. Based on current census data, that translates into more that 54 million people.
- Caregiving is no longer predominately a women’s issue. Men now make up 44% of the caregiving.
- The value of the services family caregivers provide for “free” is estimated to be $196 billion a year.
- People over the age of 85 years of age are the fastest growing segment of the population. Half of them need some help with personal care.
- Elderly caregivers with a history of chronic illness themselves who are experiencing caregiving related stress have a 63% higher mortality rate than their non-caregiving peers.
- Sixty-one percent (61%) of “intense” family caregivers (those providing at least 21 hours of care a week) have suffered from depression. Some studies have shown that caregiver stress inhibits healing.
- Heavy-duty caregivers, especially spousal caregivers, do not get consistent help from other family members. One study has shown that as many as three fourths of these caregivers are “going it alone.”
- Family caregivers provide approximately 80% of home care services.
- A recent study calculated that American businesses loses between $11 billion and $29 billion each year due to employees’ need to care for loved ones 50 years of age and older.
- Fifty nine percent of the adult population either is or expects to be a family caregiver.
The Caregiver's Bill of Rights
- Caregivers have the right to receive sufficient training in caregiving skills along with accurate understandable information about the condition and needs of the care recipient.
- Caregivers have the right to appreciation and emotional support for their decision to accept the challenges of providing care.
- Caregivers have the right to protect their assets and financial future without severing their relationship with the carereceiver.
- Caregivers have the right to respite care during emergencies and in order to care for their own health, spirit, and relationships.
- Caregivers have the right to expect all family members, both men and women, to participate in the care for aging relatives.
- Caregivers have the right to provide care at home as long as physically, financially and emotionally feasible; however, when it is no longer feasible caregivers have the obligation to explore other alternatives, such as a residential care facility
- Caregivers have the right to temporarily alter their premises as necessary to provide safe and livable housing for carereceivers.
- Caregivers have the right to accessible and culturally appropriate services to aid in caring for aging carereceivers.
- Caregivers have the right to expect professionals, within their area of specialization, to recognize the importance of palliative care and to be knowledgeable about concerns and options related to older people and caregivers.
- Caregivers have the right to a sensitive, supportive response by employers in dealing with the unexpected or severe care needs.
Common Questions in Caregiving
As the primary caregiver begins caregiving, several questions may present themselves, such as:
- What are the needs of the cancer patient?
- Who is going to provide the care? When? How?
- What type of treatment will be used? How long?
- Who will provide transportation to the treatment facility?
- Where should the carereceiver live? At home? With children? Other relatives?
- How can living arrangements be improved to help the person with cancer stay in their home or continue to remain independent?
- How will outside services be paid for?
- How will I provide adequate care while not denying attention to my spouse, children, or myself?
- How will I control added stress in my life?
While answering these questions may be difficult and the answers may vary at different stages of caregiving, ultimately, these questions will not only determine the needs of the person with cancer, but the caregiver, as well. As recent literature has shown, a person who assumes the role of primary caretaker of a loved one with cancer may experience various forms of stress, such as physical, emotional, financial, and/or environmental that eventually may affect the ability of the caregiver to continue giving necessary levels of care.
For example, physical stress can occur during daily homemaking and housekeeping activities such as cleaning, laundry, shopping, and meal preparation, which all require energy and can be tiring, particularly when added to existing responsibilities in one's own home. Personal care required for the supervision of medications and the maintenance of hygiene can also be stressful, particularly in situations of colostomies or assistance with bathing. Also, lifting and transferring individuals with limited mobility is not only tiring, but can result in injury to the caregiver or the impaired person.
back to topThe 10 Signs of Caregiver Burnout
- Denial about the disease and its effect on the person who's been diagnosed with cancer.
- Anger at the person with cancer or others .
- Social withdrawal from friends and activities that once brought pleasure.
- Anxiety about facing another day and what the future may hold.
- Depression begins to break your spirit and affects your ability to cope.
- Exhaustion makes it nearly impossible to complete necessary daily tasks.
- Sleeplessness about the disease and its effect on the person who's been diagnosed with cancer.
- Irritability leads to moodiness and triggers negative responses and reactions.
- Lack of concentration makes it difficult to perform familiar daily or weekly tasks.
- Health problems begin to take their toll, both mentally and physically.
If you experience several of these stress symptoms on a regular basis, consult a physician and use the following steps to help manage the stress in your life.
Get a diagnosisas early as possible. Once you know what you're dealing with, you'll be able to better manage the present and plan for the future.
Know resources that are available about cancer and caregiving in your community.
Become and educated caregiver.
Get help, when you need it.
Take care of yourself, first
Manage your level of stress.
Accept changes as they occur.
Do legal and financial planning.
Be realistic with daily tasks and goals.
Give yourself credit, not guilt.
back to topWeekly Checklist for the Caregiver
_______ I am getting at least seven hours of restful sleep a night
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_______ Personal hygiene and grooming are done on a daily basis
_______ I am keeping social obligations
_______ I talk with or spend time with friends at least twice a week
_______ I am spending adequate time with my spouse and/or children
_______ I am exercising at least three times a week
_______ I am eating well balanced nutritious meals and snacks
_______ I have not gained weight or lost weight
_______ I am taking only the medications as prescribed to keep up my health
_______ I keep annual medical and dental appointments
_______ My legal and financial papers, including wills, are in order and available
_______ I have checked a new resource regarding caregiving
_______ I have read and am aware of the Caregiver's Bill of RightsWeekly Checklist for the Carereceiver
_______ All legal and financial matters are in order and available
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_______ Physical and dental appointments are kept annually or more often if needed
_______ The home environment is clean, safe, and pleasant
_______ My current nutritional needs are being met
_______ My current exercise and activity needs are being met
_______ I have not gained weight or lost weight
_______ I am getting at least 7 hours of restful sleep a night
_______ Personal hygiene and grooming are done daily
_______ Respite services have been utilized
_______ Level of care is reviewed monthly to ensure carereceiver is able to remain in the home
_______ I talk with or spend time with friends and family at least twice a week
Part Two: Understanding Cancer
Cancer is a group of many related diseases. All forms of cancer involve out-of-control growth and spread of abnormal cells. Normal body cells grown divide, and die in an orderly fashion. During the early years of a person’s life, normal cells divide more rapidly until the person becomes an adult. After that, normal cells of most tissues divide only to replace worn-out or dying cells and to repair injuries. Cancer cells, however, continue to grow and divide, and can spread to other parts of the body. These cells accumulate and form tumors (lumps) that compress, invade, and destroy normal tissue. If cells break away from such a tumor, they can travel through the bloodstream, or the lymph system to other areas of the body. There, they may settle and form “colony” tumors. In their new location, the cancer cells continue growing. The spread of a tumor to a new site is called metastasis.
Leukemia, a form of cancer, does not usually form a tumor. Instead, these cancer cells involve the blood and blood-forming organs (bone marrow, lymphatic system, and spleen), and circulate through other tissues where they can accumulate.
Most cancer falls into five major groups:
- Carcinoma is a cancer that develops from cells that cover the surface of the body (skin), glands (breast, prostate), and internal organs (lungs, stomach, and intestine). Eighty to ninety percent of all cancers fall into this category.
- Sarcoma is a cancer that occurs in connective tissues such as bones, tendons, and cartilage, fat and muscle.
- Leukemia is a cancer that develops from cells in bone marrow and the lymph system that make blood.
- Lymphoma is a cancer that develops from cells in the glands of the immune system. Hodgkin’s disease is in this group.
- Myeloma is a cancer that develops in the plasma cells of bone marrow.
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Staging is the process of finding out how far the cancer has spread. This is very important because the choice of treatment and the outlook of recovery depend on the stage of the cancer. There is more than one system for staging. The TNM system is the one used most often. It gives three key pieces of information:
T refers to the size of the Tumor, measured in centimeters.
N describes how far the cancer has spread to nearby lymph nodes.
M shows whether the cancer has spread to other organs of the body.
Letters or numbers after the T, N, and M give more details about each of these factors. To make this information somewhat clearer, the TNM descriptions can be grouped together into a simpler set of stages, labeled stage 0 though stage IV (0-4). In general, the lower the number, the less the cancer has spread. A higher number, such as stage IV (4), means a more serious cancer.
back to topThe four major types of treatment for cancer are surgery, radiation, chemotherapy, and biologic therapies. New kinds of treatment also available include hormone therapy (tamoxifen), and bone marrow transplants.
- Surgery is often the first treatment of choice for many cancers. About 60% of all people with cancer undergo surgery. If the cancer appears localized, surgery may be used to remove it along with any surrounding tissue that might contain cancer cells. Sometimes it is difficult to tell how much surgery will be needed until the surgeon sees the extent of the cancer during the operation. Success of surgery depends on whether or not the tumor has spread to other areas. About 30% of all people with cancer are cured by surgery alone. Other treatments such as radiation therapy and chemotherapy can be used along with surgery.
- Radiation Therapy, like surgery, is used for localized cancers. Radiation therapy is used to destroy, shrink, or damage cancer cells so much that they cannot multiply. It can be used alone, or in addition to surgery or chemotherapy. More than half of all people with cancer have radiation treatment at some point. Radiation therapy is given either through external high-energy rays, or through internal implants. External radiation is painless and is usually giving in an outpatient setting. Treatment typically lasts five days a week for five to eight weeks, depending on the size, location, and type of cancer being treated. In some circumstances, radiation may be given through implants. These are small containers of radiation placed in or near the tumor while a person is under general or local anesthesia. They allow a person to receive a higher total dose of radiation to a smaller area and in a shorter amount of time than with external radiation. Radiation implants are often used for cancer of the head and neck, breast, uterus, thyroid, cervix and prostate. Some implants can be placed in the body at an outpatient center, while some may require the person to stay in the hospital for a few days. Once an implant is removed, there is no radioactivity in the body.
- Chemotherapy is used to treat cancer cells that have spread or metastasized to other parts of the body.< Depending on the type of cancer and its stage of development, chemotherapy can be used to cure cancer, to keep the cancer from spreading, to slow the cancer growth, to kill cancer cells that may have spread to other parts of the body, or to relieve symptoms caused by cancer. Chemotherapy is treatment with powerful anticancer drugs that are most commonly given by injection into a blood vessel, or by mouth. The drugs travel throughout the body in the bloodstream. Often, a combination of anticancer drugs is used because that has proven more effective than relying on a single drug. Chemotherapy is given in cycles; each followed by a recovery period. Then another cycle of treatment is followed by a recovery period, and so on.The total course of chemotherapy is often about six months, usually ranging from three to nine months.
- Biologic Therapies is a promising new treatment for certain cancers. It is sometimes called immunotherapy, biotherapy, or biological response modifier therapy. Biologic therapies use the body’s immune system to fight cancer or lessen the side effects of some cancer treatments.Biologic therapies can act in several ways in cancer treatment.These include interfering with cancer cell growth, acting indirectly to help healthy cells, particularly immune cells, control cancer, and helping to repair normal cells damaged by other forms of cancer treatment. There are several kinds of biologic therapy now in use.You may hear terms such as interferons, interleukins, or tumor necrosis factor.More than one kind may be used, or biologic therapy may be combined with chemotherapy or radiation therapy.
- Complementary Therapy refers to supportive methods that are used to enhance mainstream treatments. Examples include relaxation training, acupuncture, and biofeedback. Complementary methods do not cure disease; rather they help control symptoms and improve well-being.
- Alternative therapy refers to treatments that have not proven to be effective in treating a particular disease and are taken instead of conventional treatment. Examples of these include hydrogen peroxide therapy, hydrazine sulfate, and essiac tea.
Side effects of chemotherapy and radiation therapy depend on the part of the body being treated, the type of drugs used, the amount taken, and the length of treatment period. The most common side effects are nausea and vomiting, weight loss, temporary hair loss, increased chance of infections and fatigue. Some side effects may be harder to cope with, while others may be mild. Fortunately, most side effects can be controlled with medications, supportive care measures, or by changing the treatment schedule.
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Part Three: Caregiving for the Cancer Patient
During the course of our daily lives personal care and grooming activities, such as eating, bathing, caring for the skin, hair, and transferring (moving from chairs, toilets or bed) are simply taken for granted until weakness from treatment makes them difficult for the person with cancer to accomplish safely or independently. Many cancer patients who are actively undergoing treatment may experience difficulty with some of these activities.
Difficulty eating
Mouth problems associated with cancer treatments can be very painful and can interfere with eating. These problems with the mouth are a common side effect of cancer treatments because the skin inside of the mouth contains rapidly growing cells. Chemotherapy can slow the growth of healthy cells in the mouth. As a result, the mouth tissues are weakened, mouth sores develop, and sores may take longer to heal.
Suggestions to moisten a dry mouth
- Rinse the mouth before meals and throughout the day
- Use a lip moisturizer before eating
- Drink small sips of liquids with meals
- Sip two to three quarts of decaffeinated liquids throughout the day
- Eat ice chips, Popsicles, or frozen drinks
- Mix gravies, sauces, salad dressings, melting butter or margarine, mayonnaise, or yogurt into food
- Eat soft liquid food
Suggestions to soothe a sore mouth and ease swallowing
- Rinse the mouth with baking soda after eating
- Eat soft, moist, bland foods
- Drink pureed food from a cup or through a straw
- Use a blender or hand masher to soften foods
Suggestions to treat mouth sores, ulcers, or infections
- Ask about using a numbing liquid
- Use a topical ointment on mouth sores
- Ask about prescription mouth rinses to swish and swallow
- Ask about using mild pain pills
- Avoid using peroxide or peroxide rinses
- Avoid cigarettes, pipes, chewing tobacco, and alcoholic beverages
Suggestions to prevent mouth sores
- Brush their teeth at least every four hours
- Throw away toothbrush after a mouth infection
- Avoid commercial mouthwashes
- Remove dentures when rinsing or sleeping
Bathing
Bathing someone who is ill from treatment may require strength, special equipment, and skills. It is advised that caregivers ask the doctor and/or physical therapist for special instructions on how to safely bathe the person with cancer.
Suggestions for safety
- Install handrails in the shower or tub
- Place non-slip appliqués on the tub floor
- Remove loose rugs
- Use a steady shower chair in the bathtub
- Install a showerhead with a flexible hose that can be held in the hand
Caring for the Skin
Skin problems are not usually an emergency, but can be upsetting and uncomfortable for the person who has them and can indicate other medical problems. As the caregiver, you can help by noticing early signs of skin problems, by helping to treat them, and by encouraging the person with cancer to care for the skin in order to avoid future problems.
Suggestions to relieve itching and drying
- Suggest bathing with cool water and using gentle soap
- Add baking soda to bath water
- Pat skin dry
- Limit bathing to once a day or less
- Suggest using skin lotions to help keep skin moist
- Remind the person with cancer to rinse skin thoroughly and pat dry
- Change bed sheets daily
- Wash sheets and towels in gentle laundry soap
- Avoid extreme heat, cold, or wind
- Avoid colognes, after-shaves, or after bath splashes that contain alcohol
Suggestions for taking care of skin during and after radiation therapy
- Avoid scratching treated skin
- Wear loose clothing
- Avoid direct sunlight to treated skin
- Avoid ice packs
- Avoid cornstarch to control perspiration
- Avoid using scented or medicated lotions, creams and body oils
- Keep the treatment area clean and dry
- Wash with lukewarm water and mild soap
Hair Loss
Some chemotherapy treatments can cause partial or complete hair loss. This may start as early as seven to 14 days after treatment begins, and hair may not grow back until six to 12 months after chemotherapy treatments are completed. Radiation to the head may cause permanent hair loss.
Suggestions for caring for the scalp and coping with hair loss
Encourage the person losing hair to:
- Consider getting a shorter hair style before treatments begin
- Gently brush and wash away hair that is falling out
- Gently clean hair and scalp with a mild protein shampoo twice a week
- Use a satin pillow or hair net while sleeping
- Consider cutting or shaving the last few remaining hairs
During treatment
- Protect the head and newly exposed skin from the sun with a hat and sunblock of SPF 15 or higher
- Wear a hat or a head scarf to retain heat in cold weather
- Wear sunglasses to protect the eyelashes
As hair grows back
- Use a protein conditioner
- Avoid hair care product that contain bleach, peroxide, ammonia, alcohol, or lacquer
- Avoid heat, curling irons, hot rollers, or blow dryers as much has possible
- Postpone a perm on new hair
- Keep hair short and easy to style
Transferring
People with cancer can experience a variety of physical problems at different times during the course of treatment and over the length of illness. Helping with transfers in the bathroom or around the home can be a challenge to many caregivers. If you have a bad back or health problems that prohibit lifting or straining, then helping the person with cancer may be especially difficult. Many pieces of equipment make moving around and transfers safer and easier for both of you. It’s a matter of learning what is available and how to use the necessary equipment to the best advantage.
Suggestions for safety during transferring
- When lifting, do not add your own weight to whatever you are lifting-get close and keep your balance centered
- Do not use weak back muscles to lift - use your leg muscles because they are much stronger
- Do not twist when you are lifting - instead, change the position of your feet so that you face the person, keeping your spine straight. -- Balance is vital - spread your feet to serve as a base for support. -- Your doctor can refer you to a physical therapist who can teach you to transfer safely
- Use wheelchair or commode weight lift-off arms and lift-off footrests
- Raise beds, toilets, chairs, and couches to make it easier for the person with cancer to move onto and off of them
- Consider using Lifeline, a telephones service, to get help from neighbors
One of the biggest challenges to people living with cancer and their caregivers is obtaining adequate nutrition during treatment. Many of the side effects from cancer treatment can cause the cancer patient to experience a loss of appetite, constipation, diarrhea, nausea and vomiting, and fatigue, which, all can lead to weight loss and/or malnutrition over time. The disturbing problem reported in the literature is the loss of quality-of-life that is caused by patients not being able to eat. A study conducted by the Easter Cooperative Oncology Group reported that in all but cancer of the pancreas, measurable gastric cancer, and leukemia, patients who lost weight survived for a significantly shorter period.
Today, we know that malnutrition is present in 40 – 80% of cancer patients who undergo treatment. Malnourished patients are less likely to tolerate surgery, radiation, or chemotherapy. Nutrient depletion contributes to disease progression, altered metabolism, less cellular immunity, and in advanced stages, the catabolic cascade of lean body mass, muscle wasting, and glucose intolerance.
Therefore, providing adequate nutrition and actively managing the nutritional side effects of cancer treatment is vital to the cancer patient. To seek information regarding the specific nutritional needs of the person whom you are caring for, make sure to speak to the Registered Dietitian at the facility the cancer patient is receiving care.
Encourage Healthy Eating
Good nutrition is extremely important for the person undergoing cancer treatment. This is certainly not the time to restrict calories, fat, or protein from the diet. Eating well helps cancer patients cope with the side effects of treatment. Healthy eating also helps to keep up strength, build immune system functioning, rebuild tissues, and speed healing.
Fruits and Vegetables
- Provide important vitamins such as A and C as well as mineral the body needs
Protein
- Helps tissues heal and fight infection
Grains
- Provide carbohydrates and B vitamins
Dairy food
- Are an important source of protein, calcium, and many vitamins
The Food Guide Pyramid is an excellent reference for daily serving suggestions: Click Here or on the Graphic below to open a complete version in PDF file format of the Food Guide Pyramid.
Appetite
Preparing and serving food is often an important part of caregiving. It is a very personal way to show we care. How well a sick person eats in often an indication of his or her health. People with cancer may lose their appetite. Cancer treatments and other medications can decrease the desire for food, as well, the emotional stress of undergoing treatment.
Suggestions for increasing the appetite
- Encourage light exercise or walking before meals, in fresh air if possible
- Serve meals with other people, whenever possible
- Serve meals nicely in a pleasant, relaxed atmosphere, if possible
- Use small plates and serve smaller portions
- Keep food out of sight when not eating
Eliminating tastes and smells that are bothersome
- Use plastic instead of metal utensils
- Try new spices, such as basil, curry, mint, or rosemary
- Marinate meat in liquids
- Sprinkle more sugar and salt on food if these are not restricted
- Serve carbohydrates and high-protein foods
- Serve cold food
Suggestions for preventing early feelings of fullness
- Try light exercise between meals
- Walk around or sit up for awhile after meals
- Drink beverages between meals instead of with meals
- Eat small amounts of food six to eight times a day, rather than three times a day
- Eat slowly and chew food well
Adding protein and calories to the diet
- Add butter or margarine to any recipes
- Add sugar, syrup, honey and jelly to complementary dishes
- Use sour cream, cream cheese, ricotta cheese, or yogurt on baked potatoes, vegetables, and crackers
- Add whipped cream to desserts
- Add powdered coffee creamer or powered milk to gravy, sauces, soups and hot cereals.
- Use milk instead of water to dilute condensed soups or cooked cereals
- Add nonfat dry milk to one quart of whole milk for drinking and cooking
- Use peanut butter on crackers, bread, waffles, or celery sticks
- Use commercial nutritional supplements in your milkshakes
Constipation
Constipation occurs when bowl movements happen less often than usual and when stools are hard or difficult to move. Constipation is a common problem for people who are weak, spend a lot of time in bed, and are not eating. Even if the person with cancer isn’t eating much, the body still makes waste, and regular bowel movements are necessary. When persons with cancer are constipated, they often have decreased appetite, or feel bloated and might have abdominal cramps.
Suggestions for preventing constipation
- Add unprocessed bran to the diet
- Encouraged the drinking of plenty of fluids
- Offer hot or warm liquids
- Serve prune juice, hot lemon water, or tea
- Encourage daily exercise, such as walking everyday
- Give one or two stool softener every day
Suggestions to relieve constipation
- Give oral laxatives that have stool softeners in them
- Increase the number of laxative tablets
- Give a rectal suppository after checking with the doctor
Diarrhea
Diarrhea can have serious health effects so correct management is important. Losing fluids through diarrhea adds to fatigue and feeling “washed out”. Diarrhea can also cause dehydration, which can be a serious health problem. Therefore, stopping diarrhea is important for both comfort and health.
Avoid Certain Foods
- Avoid serving foods that produce gas
- Avoid serving foods that contain acids
- Avoid serving high fatty foods
- Limit caffeine intake
- Avoid milk products if they seem to make diarrhea worse
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Replace lost fluids and nutrients
- Offer clear liquids
- Serve fluids between meals
- Serve lower fiber foods
- Serve small meals through out the day instead of three larger meals
- Increase high-potassium foods in the diet
Nausea and Vomiting
Some people never experience any nausea or vomiting from cancer, its treatments, or other medicines. Others may deal with one or both symptoms at different times in their illness, depending on which treatments they receive, and how they react to them.
Suggestions for reducing nausea and vomiting
- Encourage eating three to four hours before treatment
- Offer chewing gum, hard candy, or candied ginger
- Let fresh air into the house or have the person go outside
- Encourage rest
- Offer sips of fluids two hours after vomiting
- Offer dry crackers
- Avoid unpleasant or strong odors
- Suggest wearing loosely fitting clothes
Fatigue and Tiredness
People receiving cancer treatments often may feel very worn out and tired. Tiredness may be caused by the disease itself or by the treatments. It may also be caused by anemia, which means there are fewer red blood cells circulating oxygen to the body. Anemia can be caused by cancer, its treatment, or nutritional problems. Other causes of fatigue are malnutrition or a temporary increase in waste products as cancer cells are destroyed by cancer treatments.
Suggestions for promoting rest and sleep
- Keep as active as possible during the day
- Include an exercise plan that is approved by the doctor
- Play relaxing music before sleep
- Drink warm milk at bedtime
- Take a warm bath or have a back rub at bedtime
- Ask the doctor about sleeping pills.
Suggestions for helping the person conserve energy
- Plan the day’s activities
- Encourage resting
- Encourage doing things only for short periods of time
- Encourage getting up or moving slowly to avoid dizziness
- Serve a balanced diet with adequate protein
- Serve snacks as well as regular meals
Cancer Pain
As the caregiver, you will most likely be the person who gives pain medicines and who makes sure the health professionals are informed about and responsive to the cancer patient’s pain.
When symptoms are not an emergency, but should be reported
- No relief after taking pain medicine three times, as prescribed
- Some pain relief, but there is still significant pain after one or two days
- A new type of pain, pain in new locations. Or new pain when moving or sitting
- Numbness, tingling, or burning sensations that are new
- Medicines for “breakthrough pain” are used three to four times a day in addition to their regular pain medicines
- Tremors or involuntary jerking motions while awake or asleep
Make the best use of medicines
- Give the pain medicine at regular times, as prescribed by the doctor
- Give the pain medicine before the pain builds up
- Continue to give the pain medicine during the night
- Do not stop the pain medicine suddenly if it has been taken for a number of weeks
Ask the doctor about changing pain prescriptions, times, and doses
- Ask about increasing the amount of medicine
- Ask about shortening the time between doses of pain medicine
- Ask about taking short-acting or immediate-release opioids for “breakthrough pain”
- Ask about skin patches
- Ask about time-release pills
- Ask about subcutaneous needles attached under the skin
Manage the more common side effects of pain medicine
- Prevent constipation with diet, liquids, stool softeners, and laxatives
- Serve food with high fiber content
- Avoid foods that tend to cause constipation
- Relieve a dry mouth
- Relieve painful dry nasal passages
- Avoid an upset stomach
- Relieve mild itching
- Expect drowsiness for a few days when pain medicine is started or increased
Managing Pain Medications
- Set an alarm as a reminder to administer pain medicine
- Use a medicine tray or pillbox with slots for time of day to hold the medicines
- Telephone the pharmacy before going to fill the pain prescription
- Use the same pharmacy, if possible
- Keep at least a five-day supply of pain medicine on hand
Helping to Control the Pain
- Use warm showers, baths, hot water bottles, or warm washcloths
- Use cool cloths or ice
- Position the person carefully with pillows and soft seat cushions
- Massage sore spots, such as the neck and shoulders
- Encourage the person to avoid lifting or straining
- Encourage him or her to use deep breathing exercises
- Keep a diary, rate the pain and keep notes on what makes it worse or better
Fever and Infections
Some chemotherapies or radiation therapies increase the chances of getting infections – usually for a short time following treatments. This happens when the treatments reduce the white blood cell count, which leaves the person at a higher risk of infection. This condition is called neutropenia. If signs of infection such as swelling, pain, or redness occur when the white blood cell count is low, it is important to treat the cause of these problems immediately. Take action before a high temperature develops. The body cannot fight infection when the number of white blood cells is low-early action is the key.
Suggestions for reducing a fever after reporting it
- Give acetaminophen unless you have been told not to give it
- Give any medications for fever or infection prescribed by your doctor
- Put cold washcloths on the forehead
- Encourage drinking two to three quarts of cool liquid over a 12-hour period, unless not allowed
- Serve high-calorie, high-carbohydrate foods
- Change damp clothing and bed lines
- Do not overdress the person with a fever
Suggestions to prevent fever and infection
- Encourage the person with cancer to wash their hands frequently
- Encourage using lotion and moistures on the skin to keep the skin moist and to prevent drying, chapping, and cracking
- Avoid sharing unwashed thermometers, toothbrushes, or drinking glasses
- Ask people with colds or who are ill to wait to visit until they are better
- Avoid raw fruits and vegetables that are not washed
- Encourage good dental hygiene
- Wash cuts right away with soap and water
During a stressful illness such as cancer, the person with cancer as well as family and friends often become anxious. Medical procedures or fear of the future may cause anxiety. Caregivers may worry about the person’s illness and their own ability to cope effectively with caregiving. Sometimes the person with cancer’s anxiety will make caregivers anxious. Poor communication between the person with cancer and family and friends can also be a source of anxiety for everyone.
Anxiety
One of the difficult things about anxiety is people may not know when they’re experiencing it. They may think that they are just worried. Before they realize what is happening, they are experiencing serious anxiety symptoms. Sometimes people with cancer don’t realize how anxious they are becoming, but family and friends do. Family and friends can help the person with cancer control the anxiety before it gets out of hand.
Physical symptoms of anxiousness include
- Sweaty palms
- Upset stomach
- Tight feeling in your stomach
- Shaking or tremors
- Difficulty breathing
- Racing pulse
- Hot and flush face
- Diarrhea or constipation
- Frequent urination
- Headaches
Suggestions for helping the patient cope with anxiety
- If the person is anxious about medical procedures, try to find out exactly what it is about the procedure that is upsetting
- If the person is anxious about receiving medical information, try to find out exactly what kind of news would likely cause the person to be upset
- Get the exact facts
- Look for ways around the problem
- Encourage the person with cancer to talk to someone who has been through a similar situation
- Engage in some pleasant, distracting activities
- Increase companionship and time spent with friends and family who care
- Encourage the person with cancer to use relaxation techniques
- Ask a physician about anxiety and how to treat it
Depression
The stress of dealing with an illness like cancer can cause many people to fell sad or blue. Sometimes they are able to get over the blues after a short time. However, these feelings sometimes last a long time and can severely hurt their quality of life. When a person is sad, discouraged, pessimistic, or despairing for several weeks or months, and when these feelings interfere with being able to manage day-to-day affairs, we say he or she is suffering from depression. As a caregiver, you can help prevent feelings of sadness or discouragement from becoming seen or continuing for long periods of time. Working as a team will help both of you keep depressed feeling under control. If the symptoms become sever, you can help the person with cancer get professional help.
Suggestions for taking care of your own emotional needs when caring for a depressed person
- Understand that it is not your fault if the person becomes depressed
- Schedule positive experiences for yourself
- Get the companionship you need and deserve
- You can get professional help for yourself, too, if necessary
Suggestions for working together as a team for the person who is depressed
- Acknowledge the person is depressed
- Help before the depression becomes severe
- Agree with positive thinking and correct those thoughts that seem wrong to you
- Practice giving helpful responses
Suggestions for preventing or reducing depression
- Increase the number of activities that the person with cancer does with other people
- Encourage him or her to seek reasonable, attainable goals
- Make a plan to let the person with cancer know when you think he or she is doing things that may lead to depression
- Support his or her efforts to control repetitive, negative thoughts and to substitute positive experiences and thoughts.
Part Four: Resources for Caregivers
American Cancer Society
1-800-ACS-2345
http://www.cancer.org/American Institute for Cancer Research
1-800-843-8114
http://www.aicr.org/CancerCare
1-800-813-HOPE
http://www.cancercare.org/Cancer Nutrition Network for Texans
1-806-743-1100 ext 258
http://www.ttuhsc.edu/cnnt/Lance Armstrong Foundation
1-800-496-4402
http://www.laf.org/National Cancer Institute
1-800-4-CANCER
http://www.nci.nih.gov/National Coalition for Cancer Survivorship
1-877-NCCS-YES
http://www.canceradvocacy.orgNational Family Caregivers Association
1-800-896-3650
http://www.nfcacares.org/The Center for Family Caregivers
1-847-823-0639
http://www.familycaregivers.org/BenefitsCheckUp
http://www.benefitscheckup.org/National Alliance for Caregiving
http://www.caregiving.orgNational Association for Professional Geriatric Care Managers
1-520-881-8008
http://www.caremanager.orgThe Caregivers Marketplace
Rebate and Program Inquiries: 1-951-881-8398
All other inquiries: 1-401-364-9100
http://www.caregiversmarketplace.comEldercare Locator
1-800-677-1116
http://www.eldercare.govCaregiving Resource Center
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1-800-677-1116
http://www.andthoushalthonor.org/res/