The Practical Caregiver’s Guide to Cancer Care: How to Help Someone You Love
By Sara M. Barton, The Practical Caregiver
Published by Sara M. Barton, The Practical Caregiver, at Smashwords
Copyright Sara M. Barton 2011
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What are The Practical Caregiver Guides? They are educational guides to help you be a better family caregiver. When you are providing basic care, you need the right tools to help you get the job done. My goal is to help you provide better care to your loved one, without losing yourself in the process. Cancer treatment is a big challenge for many people. Sometimes it’s hard to know what to say and do. Even the best intentions won’t get you to where you want to be as a cancer caregiver. There are three important rules for good cancer care:
-- Love is never enough. You can love someone utterly and completely, but without the right tools and education, you can fail as a caregiver.
-- You have to take care of yourself in order to be able to take care of your loved one. If you fail, there will be two people who need a caregiver -- you and your loved one!
-- What you don't know or understand can hurt you AND your loved one -- when you learn about what ails your loved one, you can also learn about what will make care better.
Believe in yourself. Believe that for every problem there is at least one solution. Believe in family care -- there's no place like home. Direct your caregiving to meet your loved one's real needs. The rewards can be great. Love really does make the world go around, but if you want a smoother ride, grease the wheels!
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 skills for cancer care:
-- Organize your caregiving according to your loved one’s need for care.
-- Realize the physical, mental, and emotional impact of cancer and its treatment.
-- Recognize the side effects of treatment.
-- Minimize the negatives.
-- Maximize the positives.
-- Utilize cancer resources and education.
In cancer care, 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 care is also very different from basic family care 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 and happier 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.
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.
HAVE A CAREGIVER COMMAND CENTER
This is where you organize and store all things related to the care you provide. In cancer care, 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. Test results, records, prescriptions, and instructions can quickly add up into a thick stack of paper or electronic information. Managing the material can be important. Very often, your loved one will still see his or her other physicians, and one of your duties is to make sure all physicians, and sometimes other medical services, have it. For example, you may be asked for the date and place of your loved one’s last scan or the physician who ordered it. You need to have a system that allows you to retrieve it quickly and efficiently, otherwise, your loved one may have unnecessary duplication of medical tests, services, and costs. What goes into a 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 care, 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. There are likely to be blood tests, scans, biopsies, and even x-rays. 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. When the medical team notifies you that your loved one needs to avoid crowds because he or she is at risk, follow that instruction. Cancer treatment can make your loved one temporarily weakened, and in that state, it is critical to protect your loved one’s compromised health. Why? Because as cancer treatment ends, your loved one is likely to enjoy better health, but only if he or she survives cancer treatment.
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.
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. These products can actually trigger allergic reactions in people with certain allergies. Contact dermatitis and other reactions can result. For someone who is already vulnerable, with a compromised immune system, fighting an allergy attack can be difficult, especially if the skin has been adversely affected by cancer treatments. Always check with the cancer team before using any substitute skin product. Always read the ingredient label and monitor your loved one for potential problems. Cancer centers generally recommend hypoallergenic products to their patients to avoid this kind of complication.
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. You may also keep some of your loved one’s medical information on your cell phone, via health apps. This is another way to assist physicians who are treating him or her. Just remember that if you need to transmit information, to the doctor’s office, you may need to do it before your loved one arrives for a medical appointment.
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 general physician not on the cancer team. 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
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 can occur as the result of some chemotherapy treatments, brain cancers, or even just the stress of coping with a cancer diagnosis. Sometimes the lapses are temporary, sometimes not. If you find your loved one has trouble remembering, post reminders of important information or events.
CAREGIVER TIP
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.
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.
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.
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 cancer caregiving, 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.
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.
CAREGIVER TIP -- 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.
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.
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.
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?
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.
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 footware 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.
HAVE A 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:
PHYSICAL SUPPORT – You need help to get it all done.
You should never provide all of the care 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. If you feel guilty about asking for help, consider this -- having other people interact with your loved one can be a very beneficial experience, especially if your loved one feels isolated from the rest of the world, due to fatigue or immunity issues. We all need a social life, and getting friends and family involved in positive ways can enable a cancer patient to remain connected to life.
EMOTIONAL SUPPORT – You need a shoulder or two to cry on.
It’s important to have your own emotional support during your time as a cancer caregiver. You have to be able to vent your feelings in healthy ways. Right now, your loved one is challenged by cancer and that makes it hard for you to share your emotional burden with him or her. 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. Turn to trusted family members and friends when you need a sympathetic ear. Consider people who have walked in your shoes as family caregivers. Whether it’s a national disease organization, a family caregiver organization, or even a local community group of caregivers, there are people who want to help you get through this experience.
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.
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 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.
DIFFERENT TYPES OF CARE
Every cancer patient is different. Your loved one’s outcome is not going to be the same as other patients you meet during treatment. What are examples of the differences?
-- Cancer patients may share a disease, but the outcome can be different for each type, each stage, and what part of the body is directly impacted
-- Some cancers are more manageable than others
-- Survival rates can vary and it’s not always easy to predict the outcome
During treatment, complications can arise, especially if a patient is already in a weakened state. It can compound the difficulties of both the cancer and the treatment. These days, doctors try to target the cancer more successfully and conservatively; this kind of approach is geared towards the specifics of the kind of cancer it is, its likely prognosis, and research on what treatments work best. Not all patients get chemotherapy, radiation, and surgery. For some patients, chemotherapy is not a good option. For others, radiation might not be successful. For many, whose cancer is discovered at a later stage of development, surgery is not a good option. If you and your loved one are unsure of why a doctor is recommending a course of treatment, discuss it. When you ask questions, you learn, and this helps you to take better care of your loved one.
Caregiving should always be a cooperative effort:
-- Engage your loved one in the planned caregiving as much as possible
-- Involve your loved one as much as possible in the care
-- Working together as a team puts you on the same page -- you’re both invested in a positive outcome
There are four types of cancer care that caregivers provide. These are temporary, serial, progressive, and permanent.
Temporary care has a beginning and end.The most common reasons for people needing temporary care are:
-- They have an form of cancer that is easily treatable or has been caught in an early stage
-- They are recovering from cancer surgery
-- They have a good prognosis for the future, once they heal
Progressive care increases over time. The most common reasons for people to need progressive care are:
-- They have a cancer that is continuing to grow, despite treatment
-- They have a form of cancer that has spread to other parts of the body
-- They are elderly or physically fragile and are likely to experience other issues over time
Serial care is repeated episodes of temporary care for cancer management. The most common reasons people need serial care are because:
-- They have a form of cancer that can go into periodic remission
-- The cancer has spread to another part of the body, but is still treatable
-- They develop complications
Permanent care is the result of cancer that has created a secondary issue for your loved one, such as a disability that results from an amputation to contain the cancer or heart failure that occurs with long-term chemotherapy treatment. The most common reasons why people need permanent care are:
-- They are permanently handicapped or disabled by cancer treatment
UPS AND DOWNS, INS AND OUTS
What are the common issues for cancer caregivers? Temporary and serial care can be complicated by uncertainty:
-- It’s hard to plan for the duration of the care
-- It’s important to gauge when to step forward and when to step back
-- You can provide care for a period of time and then resume your normal life, only to have to provide care yet again when health issues require it
Progressive and permanent care needs are more obvious, allowing you to plan, but there are still challenges for caregivers:
-- It’s a serious commitment for the caregiver to provide care on a long-term, ongoing basis
-- It’s important to understand what your loved one can and can’t do without assistance
-- You have to adjust the care to provide for your own needs and goals
STRATEGIES IN CARE
There are different strategies for helping loved ones who need care, depending on the expected duration of the need for care:
-- How you approach caregiving can help your loved one in positive or negative ways
-- Encourage independence
-- Loved ones who feel capable of providing for themselves tend to be more cooperative when receiving care
-- People who need care have fewer opportunities to achieve their goals than people who don’t need care, so it’s important to assist your loved one to succeed
-- Appreciate what your loved one can do alone and find ways to build on those successes
CAREGIVERS HAVE NEEDS, TOO --
As much as you need to dedicate yourself to providing care for your loved one, you also have to care for yourself. How you approach caregiving can help you affect your own life in positive or negative ways -- always keep a piece of yourself for you. Recognize that you are more than just a caregiver. Appreciate that you have to overcome obstacles in order to stay true to yourself while a caregiver. Set realistic goals for your own achievements and be proud of your accomplishments – toot your own horn once in a while.
CAREGIVERS NEED TO KNOW:
There are temporary care issues that affect the care you give and how you manage your own needs:
-- Temporary care has a beginning and an end
-- It’s sometimes hard to know how much help to give and how to give it
-- People who need temporary care can become impatient with the limitations they face because they know they are supposed to get back to a normal life
There are temporary care strategies that can help you if you understand how they can positively affect the care you give. Temporary care is the least stressful kind of care. In essence, it’s an interruption to your normal life:
-- Temporary care will end when your loved one is able to resume normal activities
-- Your loved one needs to focus on what it takes to get back to his or her normal life
-- Enable, don’t disable your loved one
There are progressive care issues that affect the care you give and how you manage your own needs:
-- Progressive care needs increase over time
-- It can be difficult to determine the need for more care, especially if a loved one is resistant
-- It’s sometimes hard to accept that things are going to get worse, for loved one and caregiver
There are progressive care strategies that can help you if you understand how they can positively affect the care you give. It’s important to recognize that a progressive disease or disorder is going to change how your loved one lives in significant ways, and this will affect you, too:
-- Progressive care needs will escalate, requiring that the caregiver become more involved
-- You will need to plan for future care, have an understanding of the progressive steps your loved one faces, and know what actions can help
There are serial care issues that affect the care you give and how you manage your own needs:
-- Serial care is repeated periods of temporary care as needed on an ongoing basis
-- A return to a need for care can make your loved one (and you) very frustrated
-- It’s not always easy to predict how long and how much care will be needed
There are serial care strategies that can help you if you understand how they can positively affect the care you give. When you know that it is likely you will have to repeatedly interrupt your own life to provide more care for your loved one, you can start to find ways to minimize the impact on your own life before you need to provide the serial care. Cancer and its treatment can create complications, so you may need to step in as a caregiver on short notice:
-- Serial caregiving will only be necessary as symptoms and limitations warrant
-- You will need to plan for current care and for potential care
--Expect the worst, plan for the best -- cover all your bases by anticipating what might go wrong, but keep hope alive and work to keep things positive by using opportunities
There are permanent care issues that affect the care you give and how you manage your own needs:
-- Permanent care needs are consistent
-- It can be difficult to assess your loved one’s capabilities and to foster independence
-- It’s hard for caregivers to achieve their own goals without a concerted effort
There are permanent care strategies that can help you if you understand how they can positively affect the care you give. Once you know what your loved one’s limitations and needs are, you can build in a structure and team that enable you to provide good care for your loved one:
-- Permanent caregiving will require your participation over time
-- You will need to merge your caregiving with your own needs and goals
-- Recognize that you need a long-term support system to help you do long-term care
STAGES OF CARE
There are four stages of care, but not all cancer caregivers go through each stage. Where are you as a cancer caregiver?
Stage 1 -- Basic care is easy, casual assistance for common tasks, activities and issues
Stage 2 -- Intermediate care is more involved assistance for common tasks, activities and issues, greater dependence on the family caregiver
Stage 3 -- Advanced care is very "hands on", with much time spent providing physical care and dealing with related issues
Stage 4 -- End-of-Life care involves focuses on comfort for loved one who is dying, and it is a very intense, often emotional stage of care for the whole family
BASIC CARE
In basic cancer care, your role as caregiver is minimal. You’re there as much for emotional support as for limited physical support:
-- You usually spends 4-8 hours a week providing care
-- The care is uncomplicated and straightforward
-- You act as a helpful companion
-- Your loved one is still active and independent, but has some limitations
-- The need for care may be temporary, such as after surgery or treatment
-- There are simple solutions to common problems
-- This is a mutually cooperative relationship because care needs are manageable by both loved one and caregiver
There are common tasks in basic cancer care that can develop as your loved one faces new limitations:
-- Your loved one may need help with big physical tasks
-- You may occasionally drive for your loved one, especially if he or she is suffering some of the more debilitating effects of chemotherapy
-- You may accompany a loved one to important medical appointments and take notes
-- Your loved one may need assistance with grocery shopping and other errands
-- You may provide assistance and physical support after surgery or during illness
-- You may organize activities and home duties to make things easier for your loved one, especially if chemotherapy results in neuropathy or “chemo brain”
There are common issues in basic care that can arise while you are helping your loved one:
-- Your loved one has an awareness of dependence, even on a temporary basis
-- He or she may experience frustration with current limitations
-- Your loved one is looking for a balance between needing help and providing for self
Your caregiver goal for basic cancer care is to encourage your loved one to remain independent and focused on the positive things he or she can still do.
INTERMEDIATE CARE
In intermediate cancer care, your participation is more involved in helping your loved one manage not only cancer, but cancer treatment. It’s important to monitor side effects carefully, because these can often create actual physical issues that need to be addressed by the cancer team. The emotional impact of cancer is often greater at this stage, not only on your loved one, but also on you:
-- You provide more than 8, but less than 15 hours of care a week
-- Physical limitations interfere with your loved one's normal activities
-- You arrange care around your loved one’s needs
-- Your loved one has a greater need for monitoring, communication, reassurance
-- The balance of the relationship begins to shift from cooperative to dependent
There are common tasks in intermediate cancer care that can develop as your loved one faces new limitations:
-- The family caregiver is the care coordinator
-- You and/or other family members do routine driving around town for your loved one
-- Your loved one needs help with meals and other household activities
-- You accompany your loved one to medical appointments, tracking medical issues and records, prescriptions, treatments
-- You coordinate and/or monitor care in the home
-- You spend more time organizing, overseeing, or completing household tasks and responsibilities for your loved one
There are common issues in intermediate care that can arise while you are helping your loved one:
-- Your loved one has a growing awareness of increasing dependence
-- He or she may have a fear of the future, what will happen
-- Your loved one may be concerned about becoming a burden
-- Decreasing physical abilities interfere with everyday life
-- Your loved one may experience increasing frustration when trying to overcome obstacles
Your caregiver goals in intermediate care are to keep your loved one as independent as possible, find ways to address the physical limitations and emotional aspects of cancer, and to create your resources list.
ADVANCED CARE
When you provide advanced care for someone with cancer, it’s likely to be because there are serious physical issues that present overwhelming challenges to your loved one. He or she may be actively doing battle or may have serious side effects resulting from the cancer or its treatment. Your loved one is probably unable to do a lot for himself or herself, and as a result, needs help with many daily living activities:
-- You provide more than 15 hours a week – it's labor intensive
-- Your loved one has a greater need for hands-on physical care
-- He or she has a higher level of dependence on the family caregiver
-- Palliative care and pain management can help reduce symptom discomfort
-- Safety often becomes an issue for your loved one
There are common tasks in advanced cancer care that can develop as your loved one faces new limitations:
-- Family caregiver is the care manager
-- Your loved one needs help with most activities
-- There is a greater need to assist with mobility, especially if your loved one is unsteady or suffers from neuropathy
-- You often have to take over the physical management of the household
-- Medication management is important -- you may have to take over dispensing prescriptions and supplements, to insure patient safety
-- You may be in charge of coordinating in-home care services
-- You are likely to provide greater assistance in making decisions about all aspects of your loved one’s life
There are common Issues in advanced care that can arise while you are helping your loved one:
-- Your loved one (and also you) may experience increased depression, frustration, sadness, or anger about the cancer and its toll
-- Fatigue –- physical, mental, and emotional -- may limit your loved one's activities
-- You can observe progressive physical deterioration
-- There is greater risk of injury in the home from falls, burns, accidents
-- Your loved one may experience an increase in serious health problems that require routine and emergency medical treatment
Your caregiver goals in advanced care are to address the changing physical, mental, and emotional needs of your loved one, identify and use your available resources to get the kind of assistance you need to be a good caregiver, take care of your own health -- don't ignore symptoms, and to take respite time to recharge your batteries.
END-OF-LIFE CARE (HOSPICE)
If your loved one has been admitted into a hospice program, it means that the medical effort has turned from cure to comfort. Pain management and symptom control are often utilized to provide your loved one with as much quality of life as is possible. This is often a very stressful time for you as a caregiver:
-- You are likely to provide and/or coordinate around-the-clock care
-- The hospice team comes to the home to provide medical treatment for your loved one and to instruct you in care
-- You, as the family caregiver, work with the hospice team
-- This is a very emotional time for family and friends
-- Directed comfort care and pain management can ease suffering for your loved one
-- There are often rapid physical changes, and medical treatment is likely to change to meet your loved one’s needs for comfort
-- Rest is important for your loved one and you may see a significant increase in sleeping
There are common tasks in end-of-life cancer care that can develop as your loved one faces new limitations:
-- You have to shift your way of providing care from “curing” your loved one to maximizing your loved one’s comfort level
-- You are the hospice coordinator, working under the direction of the hospice team
-- Medication and nutrition management for the dying patient are critical
-- You are likely to provide physical assistance for most or all activities
-- You can help loved one finish any “unfinished business”
-- You are likely to keep family and friends directly informed of loved one’s condition, or work with a family member to do so
There are common Issues in end-of-life care that can arise while you are helping your loved one:
-- Many families experience depression, anger, sadness, uncertainty, and dread as your loved one's health begins to spiral downward
-- Your loved one may feel frustration with or denial of impending death, or have fears of how death will come and what will happen to the family afterwards
-- Your loved one may have extreme fatigue due to the physicality of death
-- Physical pain, discomfort and muscle atrophy may result from the body's deterioration
-- Your love one may begin to physically and socially withdraw while preparing for death
Your caregiver goals in end-of-life care are to provide physical, mental and emotional comfort, coordinate with the hospice team and family, take regular respite time, appreciate the reality of your loved one’s need for hospice, and to accept that the death of your loved one is not a failure of your care.
When the end comes, gather your family and friends together, understand that your emotions will be strong, reach out to each other and share your grief and your memories, and honor your loved one.
For more help with your caregiving, please visit The Practical Caregiver Guides:
http://www.practicalcaregiverguides.com
Other Practical Caregiver ebooks are available at Smashwords:
http://www.smashwords.com/profile/view/practicalcaregiver