Caregiving

Caregiving for a loved one diagnosed with cancer can be a very important, but demanding and emotional, full time job.

It is important for the caregiver to care for themselves along with the patient.

 

For caregivers of a loved one, there is a real struggle to balance hope and love with fear, financial stress, physical exhaustion and guilt.  Starting from the time of the diagnosis life can become confusing and exhausting and as caregivers we feel and usually bear much, if not all, of the responsibility to keep life going as usual.  The diagnosis of cancer can and will invade every aspect of your life and as we learn to navigate this new world of caregiving for our loved one with Cancer, we need not only to educate ourselves about this disease but also on how to maintain our own health, wellness and dignity.    We cannot successfully take care of our loved ones if we do not also take care of ourselves.  While a caregiver may not always be a spouse or family member in this text we are mainly talking to the spouse or family member.

As caregivers you can expect to experience every emotion out there:

Guilt:  Sometimes caregivers feel guilty that they are healthy, others may feel badly about enjoying things in life that their loved one cannot. It is also common for caregivers to feel that they are not doing enough to help.

Worry:  A caregiver may feel tense, nervous and or scared and have difficulty relaxing.

Sadness:  It’s natural to feel sad when someone you love is seriously ill some of that sadness may come from missing the life you had prior to cancer.

Anger:  Caregivers may feel angry with the cancer, themselves, their loved one, family members, doctors, or others.  While this is a common feeling, it is important to find the source in order to manage feelings.

Discouragement:  As a caregiver it is easy to get discouraged, especially if the cancer treatments are prolonged or the cancer is progressing

Overwhelmed or burnt out:  It is common to feel overwhelmed, giving practical and emotional support to someone with cancer can feel like, and sometimes is a full-time job.

Loneliness:  It is so easy to feel you are alone and the only one who has dealt with your exact situation.  While each situation is different the loneliness felt is the same.

Unloved:  You may feel unloved and unwanted by your patient and may ask, “Why is it we seem to hurt the people we love!”

It is very common for people to direct their feelings at those they are closest too.  Their stress, worries and fears can come out as anger.  Try not to take this personally and just understand that you didn’t have to do anything to trigger it.  Sometimes patients don’t realize the effect their anger has on others, so try to share your feelings about this with them when they are calm.

Joy:  Yes there will be joy at times but it is up to you to find joy in the littlest triumphs and daily adventures.

There are so many other emotions to feel:  pain, fear, anxiety, pity, distrust, admiration, love, and the list goes on.  Each emotion is valid and each is dealt with differently by most.

Below are some tips on how to keep you at your best, while caring for your family member/friend:

Where to start?

FIRST STEP: DIAGNOSIS AND TREATMENT
It is important for patients to receive the correct diagnosis. ALL is diagnosed with blood and bone marrow tests. 

After your loved receives the diagnosis you will have so many questions; how did he/she get this, was it preventable, what are the treatment options, etc.  Many of these questions will be answered by your doctor at the time, but you may not be in the frame of mind to comprehend all that you are hearing.  It is very important for you to do your research on the type of blood cancer, causes, symptoms and treatments, take notes and write down questions that arise.  One of the best ideas is to start a note book.  This notebook can be used to keep track of everything.  Each time you visit a doctor, and there may be many, take your book and record all new information, answers to questions from the last visit, questions that have come up since your last visit or treatments.  Another good idea is to use your phone to record conversations at your doctor visit.  This way when you have a question about what the doctor said or when you and the patient remember 2 different things, you can hear again.

Questions to Consider Asking your Healthcare about Diagnosis and Testing

• What kind of testing will be done to monitor the disease and treatment?
• How long does it take to get the results back?
• How are the results communicated to me (us)?
• Are there additional tests that can aid in diagnosis / treatment that can be performed at another facility?
• How often will testing be needed?
•  Where will the testing be done?
• How much experience do you have with this form of cancer?
• If this was your mother, where would you go?
• Are there any forms we need to fill out in order to allow the caregiver to talk directly with physicians, nurses, etc.?

Questions to Consider Before Treatment Begins:

• Will this be an in-hospital or an outpatient treatment? If the treatment is outpatient:
    Is it alright to attend work or school during treatment?
    Will someone be needed to drive me home after treatment? Will this treatment affect the ability to have a child in the future?
• What kind of testing will be done to monitor this disease and treatment? How often will testing be needed? Where is the
  testing done?
• How will we know if the treatment is effective? What options are available if the treatment is not effective?
• What is the likely outcome of the disease (prognosis)? 
• Are there other treatment options available?
• What are the options for preserving fertility?
• How much time do I (we) have to make decisions?
• What is the subtype?
• What is the goal of treatment?
• What are the treatment options?
• Are there any clinical trials he/she could join?
• When do you think treatment should begin?
• Are there any medical procedures needed prior to treatment starting?
• How long will treatment last?
• What are the benefits and risks of these treatments?
• Is there one treatment recommended over the others?
• How can potential side effects be prevented or managed?
• What should be the result of the treatment?
• List of doctors, nurses, nutritionists, therapists etc who will be involved with my treatment?
• Who will be our main point of contact during treatment, doctor, specific nurse, radiologist, etc.
• What are the long term of effects of the treatment?
• If this was your mother, what and where would you recommend treatment?

Side Effects

1. What are the common side effects for this treatment?
2. What side effects should be reported to the healthcare team
right away?
3. How long will the side effects last?
4. How can potential side effects be prevented or managed?
5. How should I report side effects (phone call, at the office visit, etc).

Here are some guidelines for you and the patient to help as you prepare for each doctor visit:

• BRING GLASSES, HEARING AIDS AND OTHER COMFORT ITEMS – It’s essential that they can hear, see and understand what the doctor tells them.
• WRITE DOWN QUESTIONS AND CONCERNS – Make a list of any new or worsening symptoms. Bring your notebook and this information should be in it.
• CREATE A LIST OF MEDICATIONS –  Write down the current medication names and dosages or physically bring the medications to the appointment.
• KEEP A LIST OF HEALTH CONDITIONS –  Write down any other conditions they are living with besides cancer and keep the list updated, this include mental as well as physical
• OUTLINE PREVIOUS MEDICAL HISTORY AND PAPERWORK – Make sure to bring your loved one’s insurance cards, names and phone numbers of other doctors they see, as well as all of their medical records to the appointment.
• Bring the notebook you are keeping so you can update with new information.

Things you can do:

• Be sure that you understand the treatment options chosen by the patient and doctor,
• Learn what you can do to keep the person with cancer as healthy as possible, and learn about the services available to you.  This can give you a greater sense of control.  A healthy cancer fighting diet can be a great help for the patient as well as rewarding for the caregiver.
•  Know that you don’t have control over some aspects of the cancer. It helps to accept this rather than fight it.
• Try to let go of your fears, but don’t deny them. It’s normal for these thoughts to enter your mind, but you don’t have to keep them there. Some people picture them floating away, or being vaporized. Others turn them over to a higher power to handle.
• Express feelings of fear or uncertainty with a trusted friend or counselor. Being open and dealing with emotions helps many people feel less worried. People have found that when they express strong feelings, like fear, they’re better able to let go of these feelings.
• Use your energy to focus on wellness and what you can do now to stay as healthy as you can. Remember to take care of yourself, as well as the person with cancer.
• Find ways to help yourself relax.
• Make time for regular exercise, and be as active as you can.
• Control what you can. Keeping your life as normal as possible and making changes in your lifestyle are just a few of the things you can control.

 

SECOND STEP: RECORD KEEPING

Keep good records of your decisions so you can go back and review your steps.

Cancer patients receive care from many resources, each of these keep their own medical history.  It is important to keep an accurate up to date Personal Health Record (PHR) for many reasons:

• A PHR can give your doctor a complete overview of your health, tests that have been taken, results of all labs, tests, scans, surgeries etc. When creating a PHR be sure to include all physician information, physician contact and emergency contacts.  You should also include your living will (advance directive) and durable power of attorney for health care.  This may seem like an overwhelming task but having everthing together in a PHR allows a patient to feel as they have a more active role and allows them to read, study and understand their medical history.  A PHR is escpecially important if the patient experiences a recurrence of a cancer, had a childhood cancer or has had to change physicians and or treatment facilities.   as the PHR from the original diagnosis and treatment may assist a physician in treatment options for the new episode.
• When a patient has a copy of his or her medical history, it is always available to the patient when he or she needs it. Many times a patient transfers to a different physician or treatment facility or if records are lost or destroyed it is a great advantage to have your own history.
• A PHR is especially important for a patient who survived childhood cancer. The chances of remembering your history of physiscians, treatment etc as an adult are very difficult.
• PHR allows a patient to feel as they have a more active role and allows them to read, study and understand their medical history without feeling rushed.
• Having PHRs on hand can help in management of health coverage claims, tax issues, any questionable matters or legal matters (i.e. life insurance or disability insurance).
• If a patient experiences a recurrence of a cancer, the PHR from the original diagnosis and treatment may assist a physician in treatment options for the new episode.
• A PHR of cancer diagnosis and treatment may be important role for those cancers that are genetic.
• A PHR allows everyone involved to discuss the cancer and health issues intelligently with their physician.
• A PHR allows caregivers to have access to all information, this is extremely important if the patient should become incapacitated.
• A PHR helps to monitor improvement and goals.
• A PHR helps during emergency situations.
• A PHR will help manage and track appointments, tests, vaccinations and other healthcare-related information.

For more information on the importance of a PHR as well as what information should be included go to: https://www.mesothelioma-aid.org/records.htm

Important words you may need to know.

1. Biomarkers—Cancer biomarkers are substances in your blood, tissues or other body fluids that can be used to help figure out the appropriate treatment for you.
2. Benign—When a tumor or growth is benign, it means that it is not cancerous. Another word that means the same thing as “benign” is “nonmalignant.”
3. Biopsy—A biopsy is a procedure performed by a doctor where cells or tissue is removed from the body and looked at to find out if a disease, such as cancer, is there. If the cells are cancerous, the biopsy results can show what type of cancer it is.
4. Clinical trials—Clinical trials are research studies that involve people. Through clinical trials, doctors determine whether new medical approaches are safe and effective.
5. Grade—Cancer grade is based on how different the tumor cells and tissue look compared to normal cells and tissue under a microscope. “Low grade” usually means the cancer cells look close to normal and tend to grow and spread slowly. A cancer’s “grade” is different from its “stage,” which measures how far the cancer has spread.
6. Stage—Cancer stage describes how much cancer is in the body and how far it has spread. The staging is usually based on tumor size, whether lymph nodes contain cancer and whether the cancer has spread from its original location. A cancer’s “stage” is different from its “grade,” which measures how abnormal the tumor cells and tissue look.
7. Imaging—Imaging is a way to take pictures of the inside of the body to help screen for cancer, diagnose, plan treatment, see how a treatment is working or monitor cancer. Examples of imaging tests include x-rays, computed tomography (CT), magnetic resonance imaging (MRI), positron emission tomography (PET) and ultrasounds.
8. Lymphedema—Lymphedema is lymph fluid build-up in tissues that may cause swelling. This may happen if the lymph nodes are damaged or removed as part of cancer treatment or because of the cancer itself.
9. Malignant—A malignant tumor means that cancer cells have been found inside the tumor.
10. Margins—Margins refer to the tissue around a tumor after it has been removed. If the margin is “negative,” this means it’s likely that all the cancer has been removed. If the margin is “positive,” this means not all the cancer has been removed.
11. Metastasis—Metastasis happens when cancer spreads from where it first started to another part of the body. Even though it’s in another part of the body, it’s still the same kind of cancer, so the name doesn’t change. It is also referred to as “metastatic cancer.”
12. Recurrence—Recurrence is when cancer returns after some time.
13. Remission—Remission occurs when there is a decrease in the signs and symptoms of cancer. There are two types of remission—partial and complete.
    Partial remission—Partial remission means that some signs and symptoms of cancer have disappeared.
         • Complete remission—Complete remission means all signs and symptoms of cancer have disappeared, although cancer still may be in the body.
14. Treatment cycle—A period of treatment followed by a period of rest (no treatment) that is repeated on a schedule.
15. Tumor—A tumor is a lump of tissue inside the body that forms when cells grow more than they should or aren’t dying when they should. A tumor may be benign or malignant.

THIRD STEPS: BUILD A NETWORK OF SUPPORT
Create a network or join a network of those going through similar steps so that you may learn more about options and outcomes. 

Once you receive a cancer diagnosis it is important for you as the caregiver to build a network of support, however it is not up to you to run out and spread the news.  This can be a very private matter and it is not your story to tell, give them time to deal and process it.

• Spiritual support, such as religious activity, prayer, journaling, or meditation
• Recreational time, when you can enjoy friends socially
• Help from a trained mental health professional
• Support from family and friends in caring for the patient

Take care of yourself

Taking care of a loved one can be a positive experience, some say that it strengthened their relationship. But it can also be very stressful, many say it often feels like a full-time job. Care-giving can be even more challenging if you have many other responsibilities, like working, raising children, or caring for your own health.  As a result caregivers tend to put their own needs and feelings aside or feel they have no time to tend to their own needs. In order to make this experience less stressful for you it is important to take good care of yourself, this means add yourself to your daily schedule.  Here are a few tips for caring for yourself.

Here are 25 tips to help you truly practice self-care:

• Let go of guilt
• Join a caregiver support group
• Stretch and breathe
• Get some laughs
• Talk to someone once a day
• Get rest
• Prioritize nutrition
• Ask for help
• Start a Caring Bridge site
• Don’t be afraid to say “no”
• Ask for flexibility at work
• Spend quality time with friends and family
• Take time for prayer/church
• Keep a gratitude journal
• Find time for exercise
• Reduce caffeine intake
• Listen to music
• Treat yourself
• Make time for your hobbies
• Play with a furry friend
• Read books
• Create self-love mantras
• Consider professional help
• Don’t make self-care another “to-do”
• Be kind to yourself

Physical Health:

Stay active. Experts recommend exercising for at least 30 minutes each day. Activities can include walking quickly, jogging, or riding a bike. You don’t have to set aside a lot of time to exercise you can work it into your day – take the stairs instead of the elevator, or park your car farther away than you normally do. Some exercises can also be done in at home, such as yoga which which offers physical and mental health benefits for people of all ages.

Be mindful of what you are eating:  Keeping a balanced diet is an important part of taking care of yourself. Include fruits and vegetables in your meals. Nuts, yogurt, and peanut butter sandwiches are easy snacks with lots of protein that will keep your energy level up. Pack snacks if you know you will be with your loved one at the doctor’s office or the hospital all day.

Get enough sleep. Care-giving can be emotionally and physically draining. You may find yourself more tired than usual. Try to get enough sleep.—The Center for Disease Control and Prevention (CDC) recommends at least seven hours per night for adults.   Take naps when they nap if you need them!

Rest regularly.  You may find that it is hard to relax, even if you have time for it. Deep breathing, meditating, or gentle stretching exercises can help reduce stress.

Keep up with your own checkups, screenings, and medications. Your health is very important!  Don’t forget your own medical appointments, and find a system for remembering to take any medicines you need to stay healthy.

 Mental Health:

It is important to maintain your mental health, don’t allow relatives or friends to criticize your care-giving.  It is best to listen to their objections, but recognize they are not the ones providing this care.  If you and the patient are comfortable with your strategies continue on.  If (when) you start having feelings of guilt about not doing more, take credit for what you are accomplishing, and ask yourself if doing more is necessary or even possible.  Remember this is a very demanding job and there is no one way to perform it!

It is easy in this situation to feel unloved and even disliked by your patient.  It is the age old question:  “Why do we hurt the ones we love?”  Remember it is very common for people to direct their feelings at those they are closest too.  Your loved one’s stress, worries and fears can come out as anger.  Try not to take this personally and try to understand that you didn’t have to do anything to trigger the anger.  Unfortunately sometimes patients don’t realize the effect their anger has on others, for this reason it is best to try to share your feelings about their anger at a time when they are calm.

Watch yourself for signs of depression. Be aware that changes such as lack of interest in your normal activities, inability to sleep, fatigue or lack of energy, difficulty thinking clearly, appetite or weight changes can be signs of depression. Reach out for help by speaking with a counselor or medical professional immediately. Joining a support group may offer friendship and an audience where you can express your feelings and frustrations with others who have been through similar experiences, you will realize you are not unique in your feelings. Do not let the need for support make you feel that you can manage or are not a good caregiver, everyone needs support and this support will only make you stronger.

Communication

Cancer has a major effect on marriages and other long-term partnerships. After a cancer diagnosis, both individuals may experience sadness, anxiety, anger, or even hopelessness.  In their book, “Love In The Time of Chronic Illness: How to Fight the Sickness – Not Each”, Barbara Kivowitz and Roanne Weisman write, ”Communication often becomes problematic, as husbands and wives feel disoriented and uncertain about how to respond to each other. Especially early on, illness tends to “heighten emotion and short-circuit communication.”

Good communication is important in relationships between the patient and the people who care for them.  Lack of communication can cause feelings of isolation, frustration, and misunderstanding.  So it is extremely important to talk with honesty and sincerity about your feelings and personal needs during this time.  people with cancer and those who care about them.  If communication is a struggle with you and your patient you may consider joinging a support group or talking with a counselor or social worker.

 Care-giving Strategies

Use the following suggestions so you don’t feel overwhelmed and can be at your best to help your loved one:

• • Acknowledge that an adult loved one has the right to make decisions about his or her life. Respect that right unless your loved one is no longer capable of making decisions or could put others in danger through his or her behavior.
  • Whenever possible, offer choices.
    The ability to make choices is a basic freedom, so provide choices whenever possible. Choices enable us to express ourselves. As your loved one’s options become more limited due to health changes, financial constraints or social losses, you may have to work harder to provide choices.
  • Do only those things your loved one can’t do.
  • If your loved one is still capable of performing certain activities, such as paying bills or cooking meals, encourage him or her to do so. Helping your loved one maintain a feeling of independence will make him or her feel better about being in a care-receiving situation.
  • Be prepared to do what you promise to do. Many care recipients find it emotionally difficult to depend on others, and many worry about being a burden. With all these mixed feelings, your loved one needs to be able to rely on you. Do what you promise. Remember that your loved one needs you, even if he or she doesn’t say so.
  • Take care of yourself.
    Caregivers often exhaust themselves by trying to handle care-giving responsibilities on top of normal daily routines. Providing care for a loved one while holding down a job, and perhaps taking care of a family, can lead to exhaustion. If you become exhausted, you’re more likely to make bad decisions or to take your frustrations out on your loved one. Take time out to do things you enjoy. Caregivers who take time for themselves can be there for the long haul. Ask your loved one’s doctor to suggest local resources, such as adult day care services that can give you some relief from responsibilities that may feel overwhelming.
  • Give yourself a break.
    At some point in your role as a caregiver, you may start to feel resentment toward your care-giving responsibilities or even your loved one, especially if you are a long-term caregiver. These thoughts may be followed by feelings of guilt. Care-giving is a difficult job so don’t beat yourself up over these normal and common feelings.
  • Remember that your family is your first resource.

There can be deep emotional currents when a loved one becomes ill. Some family members will want to do everything, while others will do very little unless they’re asked. Yet, spouses, brothers and sisters, children and other relatives can do a lot to ease your care-giving burden. Don’t be afraid to reach out to them for help..