Guide for Cancer Caregivers

CANCER CARE ESSENTIALS

What kind of cancer caregiver are you? What kind of caregiver do you want to be? What do you need to know in order to help your loved one get through cancer treatment?

A practical cancer caregiver is an educated caregiver, and the better the education, the better the care. This is especially important for cancer patients. Why? Cancer is a disease that is not always easy to predict. Things can go from bad to worse to better to bad and back again. When you take the time to learn about the disease and its treatment, you begin to develop strategies for helping your loved one get through it.

A practical cancer caregiver learns quickly that the side effects of cancer treatment can sometimes be harder than the disease itself. In order to help your loved one, you’re going to have to really reach deep into your bag of cancer caregiver tricks and pull out a big rabbit.

Sometimes the biggest obstacle to get past is not the cancer itself, but the fear of the disease. It can stop people in their tracks, knock them off their feet, and send them reeling through the air. Cancer changes life as you know it, especially if the terror takes over. If you are confident and conscientious, you will exude a positive attitude that can help your loved one stay focused on managing the disease. You will also begin to recognize the physical symptoms that need attention. A good cancer caregiver doesn’t pretend that life is rosy – that can feel like a lie. The best support is often very simple -- you’re committed to caring for your loved one through the long haul. Come what may, you will still be there at the end of the road. Cancer patients often need to know that they won’t be alone if things go bad. The cancer road can be rocky. But nowadays, the road can be longer, better, and even more rewarding than you might expect.

PRACTICAL CAREGIVER SKILLS FOR CANCER:

1. ORGANIZE YOUR CAREGIVING ACCORDING TO YOUR LOVED ONE’S NEED FOR CARE

2. REALIZE THE PHYSICAL, MENTAL, AND EMOTIONAL IMPACT OF CANCER AND ITS TREATMENT

3. RECOGNIZE THE SIDE EFFECTS OF TREATMENT

4. MINIMIZE THE NEGATIVES

5. MAXIMIZE THE POSITIVES

6. UTILIZE CANCER RESOURCES AND EDUCATION
 
CANCER CAREGIVER TIP – SUPPORT, DON’T PUSH

A practical caregiver never takes charge of the loved one or the cancer, unless the loved one is mentally impaired as a result of the illness or treatment. Because cancer takes away control of your loved one’s life, it’s important to find ways to help your loved one be as independent and functional as possible in a safe way.

Cancer Caregiver Command Central

Create your Cancer Caregiver Command Central. This is where you organize and store all things related to the care you provide. In basic family caregiving, a command center is helpful in organizing, because there is often an increasing amount of physical care, medications, and mobility assistance provided as cancer or resulting disability progresses. In cancer caregiving, your loved one may experience many ups and downs, and the need for you to provide physical care may be limited to the time in which he or she has difficulty managing the side effects of surgery, radiation, or chemotherapy, or as a result of the cancer changing. When your loved one feels good, you take a step or two back, encouraging independence and achievement. When he or she has trouble coping, you take a step or two forward, and you assist as needed. The care must meet the needs of the loved one on many levels, but especially emotionally. Cancer can be terrifying, and sometimes the best thing a caregiver can do is help a loved one work through that fear.

Cancer caregiving is also very different from basic family caregiving for another reason. The disease can ravage your loved one’s body, but respond to treatment. And yet the fear can still live inside and affect every aspect of family life. Doubt, anger, hopelessness, and frustration are just some of the emotions your loved one might experience. There is a psychology to cancer care. When physical changes occur, they can trigger emotional changes as well. Cancer treatment in the later stages of the disease can be a really wild roller coaster ride. The better able you are to help your loved one manage the stress of the disease, the healthier he or she will be, regardless of the cancer’s outcome.

It’s sometimes tempting to take over for a cancer patient and do everything for him or her. Many cancer patients remain highly functional during cancer treatment, while others have great difficulty doing everyday things. Much depends on the kind of cancer, its stage, the treatments used, and the side effects. Sometimes the best thing you can do as a cancer caregiver is to keep everyday life on an even keel – a sense of normalcy can be very comforting to someone with an uncertain future.
Over time, especially with chemotherapy treatment, your loved one may develop a condition commonly known as “chemo brain”, which can affect memory and the ability to concentrate. Because the drugs affect the nervous system, it’s not uncommon for patients to also develop numbness or pain in hands and feet (neuropathy), and other unpleasant side effects. This is the time you may need to physically step in and help navigate your loved one through the difficult months. Over time, he or she may resume normal responsibilities, and that’s when you will step back again. This can be a situation that is repeated over time. 

What goes into the cancer caregiver command center:

PHYSICAL RECORDS KEEPING

If you are handling the physical records for your loved one, you need one central location to keep all of the printed information on your loved one’s medical, financial, insurance, and personal issues. If you are not, it’s still important to know where these are kept, should your loved one suffer a set-back and need you (or another family member) to take over.

Keep important papers in a file folder, file box, or file cabinet in one location. In an emergency, when you need to grab important papers to take with you to the hospital, you don’t want to waste time and energy looking for the records.

What kinds of records should you file? A number of cancer patients have frequent blood tests, scans, x-rays, and other lab work done. Often cancer patients are provided with copies of the test results. Why should you file these? If there is an emergency, especially during a weekend or a holiday, having those handy can save time, because it means ER physicians treating your loved one can immediately see the results. This can sometimes be important information.

Many cancer patients often benefit from meeting with the cancer center’s nutritionist. If you and your loved one do sit down and discuss ways to help your loved one eat, be sure to bring home and file any handouts you receive, and take notes during the meeting. You may not need the information at that moment in time, but it can be vital down the road. You may also find that over time, you forget what you were told, and having the opportunity to refer to the papers can assist you to prevent some of the more detrimental complications of cancer treatment and disease management.

ELECTRONIC RECORDS KEEPING

In addition to organizing physical records for your loved one, you may also want to create electronic files for important information. (You may choose to take advantage of some of the many programs and apps available to caregivers that help them get medications organized. The costs vary for these, as do the features.)

You may also wish to make notes on what the cancer treatment team shares – nutrition strategies, possible side effects, and issues specific to your loved one.

CANCER CALENDAR
More than with any other kind of caregiving, cancer caregivers benefit from keeping a calendar. Why? Cancer treatment is given on a schedule. There are usually cycles of treatments, and during the cycles, the cancer patients experience certain side effects. When you begin to understand what those side effects are, you can begin to help your loved one stay active on the good days and take it easy on the bad days.

It’s also helpful to have a calendar of your loved one’s appointments, so you can coordinate your own busy schedule with that of your loved one. During cancer treatment, there may be some treatments done daily, some weekly, and some monthly. Your loved one is likely to be treated by several members of the oncology and radiology teams, who will provide different types of care. It can be very confusing to keep it all straight, especially when you or your loved one are booking the appointments. You’ll need to make sure that you schedule appointments to avoid conflicts.

Sometimes when cancer patients have more than one treatment scheduled in a day, the cancer center will help you coordinate the appointments. If you are unsure about the time frame for two appointments on the same day with different departments, ask for help.

Chemotherapy has side effects that you may want to track on the calendar. Depending on the type of chemotherapy drug given, these side effects are likely to pop up in a predictable fashion, once you begin to understand how they affect your loved one. For example, if your loved one has treatment on a Monday, feels good on Tuesday, and sleeps most of the day on Wednesday, he or she is probably going to feel good for the weekend. This tells you that Wednesday is going to be a day you should not schedule events on.

If your loved one is still employed during cancer treatment, he or she may want to schedule treatment to avoid as much “down time” during the work week as possible. This may mean the best option is for your loved one to receive chemotherapy on Thursday or Friday, so that he or she can spend the weekend recovering.

CANCER CAREGIVER TIP – BE FLEXIBLE, NOT RIGID

Take the time to set up your command center according to what your loved one needs, not what you want to provide. Down the road, things may change, and then change again. You may need to do some things for your loved one or just assist. Gear your support to the real needs of your loved one.

Organizing Cancer Care

Your loved one is likely to be tested and retested during cancer treatment. Why is this important for a cancer caregiver to know? There will be times your loved one may be very vulnerable, as the result of his or her immune system being weakened by chemotherapy or the disease itself. You will need to take reasonable precautions to keep your loved one safer.

The first thing any caregiver benefits from is to review the loved one’s health situation. Assess the needs of your loved one, so that you can begin to develop strategies to help your loved one get the best medical care available.

1. MEDICATIONS – You are the official pharmacy assistant.

Make a list of all medications your loved one is currently taking, the name of the physician who prescribed each one, as well as the dosage. Also list all vitamins, supplements, and minerals, as well as all Over-The-Counter (OTC) medications. These include allergy relief, antacids, and even pain relievers. These can interfere with certain medications and cause serious health problems. You will need this information every time your loved one goes for a medical appointment. It’s important that each doctor knows what the other doctors are doing for your loved one. Be sure to read the printed information for each drug. Many side effects are missed by patients and caregivers, and that can cause discomfort for your loved one. Sometimes medications need to be altered or changed.

You should know that some common OTC medications may need to be avoided during certain chemotherapy treatments. Very often, the cancer treatment team can find a safe substitute. It’s not always easy to remember this, so having a system that allows you to track medication information is important.

For many cancer patients, skin care is critical, especially if they are receiving radiation. If the radiation team instructs your loved one to apply a skin cream after treatment, it’s important to do this. Many times the radiation treatment burns the skin, and the cream can help soothe this. But it can also do more than just comfort. Damaged skin is vulnerable to infection, too, and if your loved one is already experiencing problems with his or her immune system, there is a greater risk of harm. 

A WORD OF CAUTION – MANY PEOPLE TURN TO “NATURAL” AND “ORGANIC” SKIN CARE PRODUCTS IN THE BELIEF THAT THESE ARE KINDER AND GENTLER. MANY PEOPLE ARE ACTUALLY ALLERGIC TO THE INGREDIENTS IN SOME OF THESE -- CONTACT DERMATITIS AND OTHER ALLERGIC REACTIONS CAN RESULT. FOR SOMEONE WHO IS VULNERABLE, AN ALLERGIC REACTION CAN BE MORE THAN JUST UNPLEASANT. ALWAYS CHECK WITH THE CANCER TEAM BEFORE USING A SUBSTITUTE SKIN PRODUCT, ALWAYS READ THE INGREDIENT LABEL, AND ALWAYS OBSERVE YOUR LOVED ONE FOR POTENTIAL ALLERGIC REACTIONS. CANCER CENTERS GENERALLY RECOMMEND SKIN CARE PRODUCTS THAT DO NOT TRIGGER ALLERGIC REACTIONS IN PATIENTS.

2. MEDICAL ISSUES – You are the official cancer care coordinator.

Make a list of every physician your loved one sees and the contact information for each office. If the physicians offer a medical records tracking program, consider using this. It’s often a USB stick that downloads current medical records and the information can be shared among the physicians treating your loved one. This is a handy tool if you need to rush your loved one to the emergency room.

Talk to your loved one’s cancer team and be sure you understand who to call when your loved one needs medical care. Sometimes, if it is not related to the cancer, the issue will be addressed by a physician not on the cancer team. Other times, your cancer team will take the lead.

Other helpful information you will want to manage:

-- Dates and types of laboratory tests, such as blood, x-ray, and scans ordered by other physicians
-- Dates and types of treatments by other physicians
-- Any changes in treatments or medications prescribed by other physicians

Keep a copy of your loved one’s insurance information and driver’s license to keep in your wallet. In an emergency, this can be important. Encourage your loved one to keep the insurance cards in a specific location in his or her wallet. Some cancer centers require patients identify themselves by driver’s license or other acceptable form of photo identification. Be sure your loved one has it handy.

Make sure your loved one is prepared for cancer appointments and treatments. With cancer treatment, there are usually many different tests done over time, to check on the cancer situation. Be sure you and your loved one understand all instructions, including any regarding fasting, taking required dyes, and medications. If you have questions, always call the cancer team, laboratory, or physician’s office to double-check.

BE AWARE THAT MEMORY LAPSES MAY OCCUR AS THE RESULT OF CHEMOTHERAPY, BRAIN CANCER, OR EVEN JUST THE STRESS OF COPING WITH CANCER. SOMETIMES THE LAPSES ARE TEMPORARY, SOMETIMES NOT. IF YOU FIND YOUR LOVED ONE HAS TROUBLE, POST A REMINDER.

3. EDUCATION – You are the cancer care navigator.

Your loved one may hesitate to learn as much as possible about the stages of cancer, the way each stage is affected by the type of cancer, and other critical issues. This is often important information that will help your loved one maximize his or her survival. You can encourage your loved one to remain optimistic and engaged in managing the cancer. Focus on the positive information that the cancer team provides. Enable your loved one to utilize the tips and strategies provided by being supportive and informed. For some cancer patients, just getting through the tough times can improve chances for longer survival.

4. ACTION -- You are the official cancer care advocate.

Some cancer patients are afraid to speak up when they are experiencing pain or discomfort during treatment. They sometimes hesitate to tell the cancer team that they are feeling worse. It’s important for the cancer team to know when your loved one is having difficulty. Be an advocate. Don’t assume that what your loved one is experiencing is normal. Some patients have difficulty tolerating some medications, and it is often a matter of finding a drug that works effectively with fewer side effects. Many patients are helped by palliative care during cancer treatment. Pain management specialists can help with nausea, vomiting, pain, and other discomfort experienced. This saves your loved one from unnecessary suffering. It can also empower your loved one in very positive ways, allowing him or her to be more active, eat a healthier diet, and be less overwhelmed. Explore all the options.

5. NUTRITION AND DIET – You are the official nutrition coordinator.

Cancer patients often have greater nutritional issues than other patients. Why? Very often, the disease and treatment decrease appetite. The resulting weight loss can affect how your loved one survives. For some cancer patients, the thought of eating is unappealing. Without proper nourishment, the body begins to fail, and this makes it difficult to tolerate the rigors of cancer treatment. Educate yourself. Make an appointment with the cancer center nutritionist. Find ways to help your loved one maintain his or her weight. Cancer patients are often too tired to chew food, so it’s helpful to have a list of foods that are easily tolerated. Some foods, like protein shakes, can deliver lots of calories and comfort. Some cancer patients eat small meals throughout the day. Some eat their bigger meals early in the day, when they have more energy.

Sometimes chemotherapy treatments include saline solution, to flush the drugs out of your loved one’s system. During these times, it may be important to avoid foods high in salt. Talk to the cancer team about how to address this issue, especially if your loved one also has high blood pressure or heart disease.

Some patients develop diabetes after long-term steroid use. When cancer patients also have diabetes, it can be difficult to provide the right kind of nutrition and still manage the insulin levels. It is critical to work with professionals, such as a diabetes specialist or a cancer nutritionist, to make sure your loved one is getting the right kind of nutrition.

CANCER CAREGIVER TIP –DON’T START A REBELLION

Food control issues can be triggered because of fatigue and frustration from the disease and treatment, but also because of the sense of powerlessness cancer creates. You don’t want to become the bad guy, always nagging your loved one to eat. You don’t want your loved one to rebel against you as a way of blowing off steam. If you approach cancer nutrition with some insight and the help of the cancer team, you’re more likely to find ways to encourage reluctant eaters successfully. 

Organizing Cancer Care
 
If you are new to the cancer caregiving situation, it’s important for you to understand your loved one’s needs for care. Cancer and its treatment can often be isolating for your loved one. Finding ways to keep cancer patients engaged in life is important, and having a caregiver structure can help. Cancer patients often benefit from maintaining as normal a life as is possible. This helps to create a sense that cancer is not in charge of the family. The biggest hurdle for cancer patients is often managing the fear of what will happen, the great unknown. This creates a very real stress, not only for the patient, but for the family.

Cancer patients need to focus on staying as true to their selves as possible, during treatment and after treatment. As well as activities are tolerated, it’s important for your loved one to continue to be engaged in all aspects of life. Sometimes, due to the effects of the disease or its treatment, it can be difficult to get out and about. This is where your assistance is critical. What can you do to empower your loved one to be active? Help your loved one to maximize his or her strengths, and find ways to minimize the weaknesses that result from cancer or its treatment.

DUI ISSUES – CHEMOTHERAPY AND DRIVING

Some patients are able to continue functioning well under some kinds of chemotherapy. Others are not, because the type of chemotherapy adversely affects the skills normally used in driving a motor vehicle. You may find that your loved one’s timing, motor skills, and coordination are negatively impacted by chemotherapy. Driving under the influence of chemotherapy may be dangerous for your loved one and others on the road. There may be periods of time in which your loved one needs a driver. It’s important to recognize the potential dangers and address them in a reasonable manner. If you are concerned about your loved one’s driving capabilities, speak to the cancer team. They can assist you in dealing with this situation.


If you do need to drive your loved one, it’s important to recognize that this new dependency is likely to have an emotional impact on his or her outlook for life. When you emphasize the temporary nature of this situation -- that it is the result of the drugs used to treat the cancer, and you note the treatment is limited to the cycle specified by the oncologist – it’s easier for the cancer patient to accept the need for this special assistance from you.

When you set up your home care structure for your loved one with cancer, it’s important to recognize that the more active he or she is, even with the cancer, the better your loved one will function physically, mentally, and emotionally. You may need to make some important adjustments and compromises. For example, if he or she is experiencing neuropathy as the result of chemotherapy, some chores around the house will be difficult or dangerous. You don’t want someone who can’t feel his or her hands and feet to operate heavy machinery or be vulnerable to burns. Using a power saw or cooking on the range may not be a good idea. Carrying heavy loads or taking a hot casserole out of the microwave may be risky. If you and your loved one trade off chores, he or she is still functioning as part of the household. Cleaning a kitchen floor may not be glamorous, but it doesn’t endanger your loved one. Doing laundry is a necessity, and your loved one can do it as part of the team.

If your loved one still wants to cook, there are ways to cope with the difficulties. A smaller or lighter casserole dish may be safer. A crockpot is great for slow-cooking a tasty meal. If your loved one has difficulty chopping vegetables, you can often buy these at the grocery store already to go into the pot.

For many cancer patients, the biggest need is to adapt to the constraints of cancer and its treatment. Rather than taking over the responsibilities for your loved one, your most important job is to find the adaptations that enable him or her to continue functioning as highly as possible. Empower your loved one to be active.

What activities are most important to your loved one? What can he or she still do without assistance? What activities can he or she do with some assistance? What activities should be temporarily put on hold? The more you help your loved one to lead as normal a life as possible with cancer and its treatment, the better. Cancer patients need to believe that life can still go on and be filled with meaning, joy, laughter, and hope. Sometimes that means focusing on the here and now, rather than the distant future. Embrace the good part of every day and celebrate it.

1. NEEDS – You are the official cancer care assistant.

Make a list of the things your loved one needs help with in everyday life. This requires you to understand the problems your loved one is experiencing. Discuss this. Take the time to observe your loved one in action. Your goal here is not to physically do everything. It’s to identify problems and find solutions that will overcome these challenges. Keep your loved one as active, engaged, and independent as possible.

2. STRENGTHS – You are the official skills optimizer.

Make a list of the things your loved one can do by himself or herself at this moment in time. These can be used to maintain a sense of self-worth in your loved one. The more you encourage the use of these strengths, the less dependent your loved one will feel upon you. Everyone wants to feel like a contributor, not a burden. (Remember that things can change and you may need to adapt tools and assistance to meet these needs.) By having an inventory of your loved one’s current skills, you can find ways to enable him or her to continue achieving.

3. ACTIVITIES – You are the official social coordinator.

Make a list of the activities your loved one enjoys. Your purpose in listing these is to find ways to keep your loved one participating in life in ways that help him or her stay true to the self. Activities have real meaning for people and they provide enjoyment and stimulation. Are there new challenges because of illness or injury? Can some of the activities be adapted so your loved one can continue to do them with a little help?

4. ROUTINES –You are the official domestic routines coordinator.

Make a list of the routines your loved one needs help doing. Routines are done on a regular basis. Is it mowing the lawn, doing household chores or taking out the garbage? Will you need to hire someone, call upon a family member or friend, or do it yourself?

Does your loved one like to work in the yard, even with limitations? Or do the weekly food shopping? How can you help your loved one continue to do things that matter, even if it means making adjustments in how things are done? Many handicapped people can still be productive in the garden or the grocery store, as long as they have some help. Many can still do laundry themselves or cook uncomplicated meals. You need to understand what routines are possible and what routines are impossible for your loved one to continue.

5. SCHEDULES – You are the official schedule coordinator.

Make a list of the schedule your loved one normally keeps. What time does he or she usually get up? What time does he or she normally go to bed? When are meals usually eaten? One important thing caregivers need to understand is that their loved ones usually have an established schedule. When you are being treated for an illness or disorder, schedules can often be disrupted. This can create a sense of chaos for your loved one. By following his or her normal schedule, you can help bring focus and a sense of normalcy back to the family. You won’t always be able to do things on schedule, but understanding it can be very helpful for everyone.

CANCER CAREGIVER TIP – GETTING OUT OF THE HOUSE ON TIME

If your loved one is physically limited by cancer or side effects, getting ready to go out can take a lot of time and energy. Some patients can feel overwhelmed by the effort. If your loved one is exhausted, frustrated or rushed, find ways to cut down on unnecessary actions and make the whole process easier for your loved one to endure. Clothing and footwear that are easy to get into and out of can help conserve your loved one's precious energy and prevent unnecessary fatigue. Consider elastic waists for pants and skirts, velcro-fastened or slip-on shoes. Layered clothing can sometimes help to hide the weight loss caused by cancer and cancer treatment. Appearance is a big issue for a lot of cancer patients, so empower your loved one to look as good, if not better, than people who don't have the disease. It's a great morale booster.

Cancer Caregiver Support Team

What is your caregiver support team? This is a critical issue for you to understand because your caregiver support team help you avoid some of the biggest pitfalls of taking care of a loved one. Stress, depression, and physical neglect can take its toll on family caregivers. The better you understand your responsibility to take good care of yourself, the better the care you will provide to your loved one. You need to be able to focus, to manage crises that arise, and to meet the constantly changing demands of caregiving. You will need:

1. PHYSICAL SUPPORT – You need help to get it all done.

You should never do caregiving all by yourself. Whether you get family support, friend support, volunteer support, or hired help, you need to know who you can call on for those times you need help providing care. Make a list of the people you can count on, what they can provide, and what their strengths are. There may be some people who are good at visiting your loved one when you want to pop out to the store for a few things. There may be others who are willing to be involved in regularly helping you with your loved one.

2. EMOTIONAL SUPPORT – You need a shoulder or two to cry on.

You will need emotional support during your time as a cancer caregiver, and the harder the challenges you face, the greater the need for quality support. You need good people who can help you troubleshoot issues and find realistic solutions for problems. Avoid pessimistic people for your support team. Consider people who have walked in your shoes as family caregivers. Many find it helpful to join support groups. Whether it’s a national disease organization, a family caregiver organization, or even a local community group of caregivers, there are people out there like you who are looking to help out.

3. FINANCIAL/WORK SUPPORT – You need help balancing out the realities of caregiving.

If you are still working full-time when you take on the care of your loved one, you will need to work out the challenges of sometimes being in two places at once. If your loved one’s needs require you to scale back your job or take on full-time caregiver duties, how will you manage the financial burdens of caring for your loved one? Some families provide a stipend to family members providing care, to help cover the loss of wages. Caregivers still need to have medical and other insurances, but in some cases, it’s possible to downsize while being a family caregiver. Make a list of your financial needs, ways to adjust them to fit the caregiver situation, and ways that you can eliminate unnecessary costs. If you are providing serial caregiving to your loved one with cancer, you are likely to face disruptions to your career on an unpredictable basis. You may have long periods during which you provide little or no care. Other times, situations can arise in which your personal life is turned upside down. Be aware of these issues and what your options and resources are for meeting the challenges before they arise, and you will be better prepared to move quickly to provide the best care for your loved one.

4. RESPITE CARE SUPPORT – Taking time for you is NOT optional.

Caregivers need to understand and appreciate the need for respite care. When you take time off from your caregiving, you are recharging your batteries. You should never feel guilty. If you start your caregiving by regularly scheduling respite time for yourself, your loved one has the chance to get used to the concept. It’s important to do this because down the road, should your loved one become more affected by his or her physical limitations, you will have established your routine of respite care. Make a list of family members, friends, and volunteer respite providers you can call upon. If you can afford it, there may be times that you utilize paid home health aides to care for your loved one.

CAREGIVER TIP – YOU NEED TO MAKE IT WORK FOR YOU AND YOU ALONE
This is your support team, your choice. It’s just for you. Pick the people you think are most likely to help. Recognize what each person can do for you.

Copyright Sara M. Barton 2013
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