taking charge of kidney cancer: caring for my caregiver

Taking Charge of Kidney CancerCaring for My Caregiver

Third of a Series of Four Patient Guides

Published by Action to Cure Kidney Cancer

About ACKC

Action to Cure Kidney Cancer (ACKC) is a grassroots group of kidney cancer survivors and family/caregivers who estab-lished a new not-for-profit health-advocacy organization in 2003. Our mission is to educate the public about kidney cancer, empower kidney cancer patients and their families, endow grants, and lobby for research towards finding a cure.

Our “Taking Charge” Guides

ACKC’s set of four guides provides kidney patients and their caregivers with the information they need to take a proactive role in their health care and their lives. Guide 1 Understanding My Disease is written for the newly diagnosed patient. Guide 2 Managing My Cancer is about the care and treatment of kidney cancer patients with metastatic disease. Guide 3 Caring for My Caregiver is intended for the people in your life who are helping you. Guide 4 When Treatment Ends is designed for both patients and their loved ones.

© 2013 Action to Cure Kidney Cancer

Supporting My Caregiver

P A T I E N T G U I D E 3

Caring for My Caregiver

Introduction 5

What to Expect as a Caregiver 5

Being Proactive 5

Caregiver Support 5

Counseling for the Caregiver 5

Respite Care for the Caregiver 6

Alternative Medicine 7

Complementary Medicine 7

Use the Internet 8

Lifestyle Changes 9

Stopping Smoking 9

Nutrition and Reducing Weight 9

Exercising 10

Reducing Stress 11

Protecting Your Other Kidney 11

Burnout Issues 12

Warning Signs of Burnout 12

Preventing Burnout 12

Working with the Hospital 14

Taking Charge of Kidney Cancer

“The thing that keeps me going and gives me strength is his will to live

and my will to keep him alive. I am not ready to let go.”

— Cancer Patient Caregiver


IntroductionWhile Guides 1 and 2 are for you, this guide is for your caregiver. He or she is the most important part of your medical team. When you take care of your caregiver, you are also taking care of your-self. This guide will help both of you to live your lives to the fullest extent possible.

What To Expect as a Caregiver It is one of the most challenging jobs imaginable, yet one of the most rewarding. You will probably do much of the research, learn what the various options are for your loved one’s type of kidney cancer, help choose the doctors, accompany him or her to visits to the various medical specialists, and reach out to other caregivers and kidney cancer groups and organizations.

There is an emotional toll to caregiving that is not often discussed. Taking on the physical and mental needs of another person often means setting aside your own. But the first person you need to take care of is yourself. Think of it like the safety instructions on a plane: you must put on your own oxygen mask first before you put on your child’s.

Being ProactiveYour job is seeing to the needs of your patient. This may involve such activities as providing food and drink, feeding, if necessary, and being assertive with medical and nursing staff in getting the best care for your loved one. Sometimes it means just being with your patient so that he or she is not alone.

Caregiver SupportCounseling for the CaregiverYou can start by asking the social worker at the hospital where the patient is enrolled. Most major cancer centers as well as com-munity hospitals have counselors who specialize in working with cancer patients and their families. Or they may have a list of agen-


cies you can call. Members of religious communities can usually get help from their church leaders or chaplains. Cancer discussion groups such as https://www.smartpatients.com and cancer sup-port groups allow caregivers to share their experience, issues, and concerns with others who are in the same boat.

Respite Care for the Caregiver Give yourself a break, literally. No matter how devoted you are to your loved one, nobody can be a caregiver 24/7. Respite (pro-nounced RESpit) care refers to people who spend time with the patient so that you can have personal time to do the things you want to do for yourself. It may be something as simple as getting out of the house instead of feeling trapped. Respite helpers can as-sist with physical demands such as lifting the patient into a chair or onto the toilet.

While caregiver relief seems like an obvious solution, there are many reasons why you and/or the patient may be reluctant to ask for assistance. You may feel that this is something you have to do yourself, you don’t want to burden your friends or family who “have their own lives,” or you or your mate may feel that other people can be an intrusion. But having those few hours to yourself

Joan’s Story

“I was incapacitated and needed help with activities, such as dinner and toileting at night. I also wanted intellectual companionship. I set up a network of friends with one person acting as coordinator, who sent out instructions and a schedule. So many people volunteered that we ended up with 14 people who came once every two weeks for 2 to 3 hours. I used my union, but one could use any network such as a community group, fellow workers, or church members.”

For valuable information for caregivers, go to the NCI site “For Caregivers, Family, and Friends,” which can be found at http://tinyurl.com/mt3ekgg.


can recharge your batteries, refresh your outlook, revive your en-ergy and make you feel you are not alone.

Respite care may be part-time paid helpers, or friends and families you can call on for a few hours. Asking for help is easier when you realize that many people are happy to do so. Organizations and agencies that provide home health services, adult day care, or the local Agency on Aging can supply you with the names of people. Or you can form your own respite group, asking people what time they have available and then setting up a weekly schedule.

Alternative MedicineNo doubt, you and your patient have been flooded with informa-tion on alternative approaches to treating cancer. These may be in addition to, or instead of, traditional treatments. But it is best to proceed with caution.

There are many so-called cancer cures that are widely publicized on the internet and in various documentaries. While many of them purport to have achieved amazing results and might pos-sibly even work in certain cases, none of them have been clinically tested in double-blind studies and published in peer-reviewed sci-entific journals. At most, they offer only anecdotal evidence. By choosing to go an alternative route, your patient may be risking his or her life and health on an unproven treatment and missing out on therapies that have been shown to reduce metastases, help prevent recurrence, and extend life.

Complementary MedicineOn the other hand, complementary medicine, which is used to augment traditional therapies, may be beneficial in lessening symptoms, increasing the sense of well-being, and supporting overall patient care. Many of these benefits have been demonstrat-ed in clinical trials. Options include acupuncture, massage, music, mind-body therapies (see below) and certain herbs and supple-ments. For example, some studies have shown that maitake mush-room has anti-tumor properties, see http://tinyurl.com/96njrq7. Search specific herbs at http://tinyurl.com/cwlygx3.

Complementary and Alternative Medicine

For a scientific research overview of this topic, see “The Prevalence of Complementary/Alternative Medicine (CAM) on Cancer” in the journal Cancer, August 1998, available online at www.pubmed.gov.

Acupuncture

“The evidence currently avail-able has suggested that acu-puncture is a safe and effective therapy to manage cancer and treatment related symptoms, while giving patients the ability to actively participate in their own care plan.”Source: “The Value of Acupuncture in Cancer Care” http://tinyurl.com/6veotku


Evaluating Information

Beware of sites that promise to cure all or most cancers. Some red flags: • Are you asked to send your

medical records and pay a lot of money up front?

• Is this treatment a “secret”?• Do you have to travel to

another country, such as Mexico, where the laws are more lax?

Talk to your doctor or other health provider about any treat-ment you may be considering, including those from social media sites. If you want more information about nontradition-al treatments, call the American Cancer Society at 800-227-2345 or call NCI at (800-CANCER) or 800-422-6238.

Use the Internet The advent of the internet has transformed delivery of medical care and in particular the doctor-patient relationship. Through-out most of history, doctors were almost a secret society privy to knowledge that was largely unknown to the patients they treated. Now information on every disease, including the same medical reports read by your doctor, is available at your fingertips. Trusted sites on kidney cancer care are listed in the chart below.

Cancer and Urology Organizations

The National Cancer Institute http://tinyurl.com/6hdxwv

American Society of Clinical Oncology http://tinyurl.com/lsy2bkl

American Urological Association Foundation http://tinyurl.com/cqto64h

American Cancer Society http://tinyurl.com/ldhfk2w (a detailed guide to kidney cancer)

National Comprehensive Cancer Network www.nccn.org

Action to Cure Kidney Cancer www.ackc.org (latest news about kidney cancer and treatments)

Top Kidney Cancer Medical Centers

Cleveland Clinic http://tinyurl.com/d4hshat (publishes the “Kidney Cancer Treatment Guide”)

MD Anderson Cancer Center http://tinyurl.com/28gce28

Memorial Sloan-Kettering http://tinyurl.com/cmwk8k4

Do your own research at http://www.ncbi.nlm.nih.gov/pubmed which carries abstracts on almost every medical journal article and often the entire text as well.

Ask your patient’s hospital if they will provide online access to his or her medical records, as some hospitals are now starting to do, e.g., Memorial Sloan-Kettering and Mt. Sinai in New York City.


Lifestyle ChangesTaking care of yourself and your loved one may be a matter of changing your respective lifestyles. The following are some chang-es that can help preserve your health, lower your risk of becoming ill, and extend both your lives.

Stopping SmokingCigarette smoking is a strong risk factor in kidney cancer. If your patient continues to smoke he or she increases the risk of cancer attacking the other working kidney as well as worsening the health of almost every organ of the body. Secondhand smoke is also a risk factor, so giving up smoking benefits both of you. There are patches, medications, smoking cessation clinics, and other helpful ways to break this habit. It also helps to have a partner to support you and not be in a smoking environment.

Nutrition and Reducing WeightMaintaining a normal weight is important for a healthy body, but it also significantly lowers the risk of kidney cancer. Cutting out red meat, eating more fish and piling up your plate with fruits and vegetables have been shown in numerous studies to reduce the

Smoking

A study of kidney cancer and smoking by UCLA found that smokers have a decrease in overall survival of 50% versus non-smokers, with an increase in mortality of 1% per each pack-year. Nils Kroeger, “Tobac-co Exposure Negatively Impacts RCC Survival,” presented at ASCO Conference 2011.

Drinking

Drinking moderate amounts of alcohol daily — a glass of wine, beer, or 1½ ounces of hard liquor lowered the risk of renal cell carcinoma by about 28%, researchers reported in The Journal of the National Cancer Institute.

Walk Away from Cancer

A recent study on the effect of physical activity on colon cancer in the Journal of Clinical Oncology found that 150 minutes of brisk walking per week increased survival by a whopping 42 per cent compared to little or no exercise. Similar findings are true for women with breast cancer.


risk of cancer and heart disease. There are many great recipes and nutritional information available on the website of the American Institute of Cancer Research at www.aicr.org. Your medical team should also include a nutritional expert who can guide you on what to eat and how best to lose weight.

ExercisingA regular exercise program helps both you and your loved one in many ways including reducing weight, keeping blood pressure down, and relieving stress. These are all factors known to play a role in kidney cancer. The National Comprehensive Cancer Net-work (NCCN) recommends both moderate aerobic exercise such as stationary bike-riding or a daily walk and strength training with light weights. Exercising together makes it more pleasurable and increases the chances that both of you will stick to the pro-gram. What exercise you and your patient can do and how much should be discussed with your health care professional. In gen-eral, a minimum of 30 minutes of aerobic exercise daily is recom-mended. There is no need to go to a gym. Simply walking at a brisk pace, jogging, or running—whatever you are capable of doing—is extremely helpful. Other excellent exercises are cycling and swim-ming. If you have been sedentary or are not able to do 30 minutes, start with a level you are comfortable with and build up gradually.

Martha’s Story

“We were living in Japan when my husband’s tumor was found.After his treatment in the U.S., Ben asked the doctor what hewould recommend to someonereturning to normal life. The doctor said, “avoid stress.” My husband went right back to his high-stress job in Japan. But the doctor was absolutely right.”


Reducing StressThe following are simple time-tested techniques that you and your loved one can do to lower stress and amplify positive thinking.

Meditation. Relaxation techniques allow your own body to release the chemicals that lower the stress hormones. The simplest method is to sit in a comfortable chair with your hands at your side or on your lap. Close your eyes and breathe in and out, lightly and eas-ily, focusing on your breathing. If your mind wanders, bring your attention to your breathing. As you inhale, feel your breath enter your nostrils and flow down to your lungs. When you exhale, feel your breath leave your lungs and flow out from your mouth. Do this for five to ten minutes. Practice it every day and you will find that you easily enter a calm, meditative, even spiritual state.

Visualization. Visualization is another method used by many people to calm their minds. Close your eyes and picture some-thing pleasurable such as the ebb and flow of ocean waves or palm trees swaying in the breeze. Imagine that you are in that place and feel it with all your senses. Again, five or ten minutes of visualiza-tion has a healing effect on your body. There are many books, CDs, and apps on meditation and visualization.

Movement Techniques. There are ancient techniques practiced by people today all over the world that engage the mind, body, and spirit. Taking classes in yoga, tai chi, or qigong has the added benefit of bringing you together with other people and having a master in the technique guide you through it.

Protecting Your Other KidneyKidney cancer survivors are at higher risk of contracting kidney disease. Maintain your other kidney by reducing protein intake, drinking lots of water every day, and avoiding medicines that can damage your kidney, like ibuprofen; watch your blood sugar lev-el, blood pressure, and cholesterol as hypertension, diabetes, and heart disease can damage the kidney; moderate alcohol intake, keep your weight down, and be physically active; stop smoking.

Meditation

Practicing meditation on a regu-lar basis improves the quality of life and reduces stress on the mind and body. Studies have shown that it lowers anxiety, blood pressure, chronic pain, and insomnia and raises the immune response. According to the American Cancer Society, a study of 90 cancer patients who meditated for seven weeks found that 31% had fewer symp-toms of stress and 65% experi-enced fewer mood disturbances than non-meditators.

“Meditation is not really forcing your mind to be quiet, it’s finding the quiet that is already there.”— Deepak Chopra Perfect Health

For more information, go to the National Kidney Foundation, www.kidney.org/kidneydisease.


Burnout IssuesIt is easy to lose perspective when you are a caregiver. Watching the person you love being in pain, anticipating and taking care of your loved one’s needs, keeping up with the medical literature, and communicating with the medical team all take a toll on your mind, body, and relationships, which can lead to a devastating state called “burnout.” You may find your positive feelings of love and concern turning to negative feelings of being trapped and unsympathetic.

Warning Signs of Burnout• Depression, anxiety, irritability

• Change in attitude toward patient

• Mental and physical exhaustion

• Excessive eating, drinking alcohol, smoking, or drug use

• Difficulty sleeping and/or overuse of sleep medications

• Wanting to hurt yourself or the person you are caring for

• New or worsening health problems

• Neglecting your own needs

• Feeling helpless and hopeless

Preventing BurnoutAsk for Help. You may be afraid, embarrassed or ashamed to ask others to help you, but not doing so means that you will become increasingly unable to care for your loved one. This may mean see-ing a therapist, notifying your friends and family about your state of mind and asking what they can do to help, delegating responsi-bilities, or getting help from governmental or private agencies that offer financial help in paying for caregiving assistance.

Journaling. A daily journal provides a safe space for you to write down all your innermost thoughts and feelings, however trouble-some. You can also write about things that made you feel good that day. Studies have shown that keeping a journal helps reduce stress and can actually improve health.

Nancy’s Story

“I took my widowed father with advanced kidney cancer into my home so that I could more easily care for him. But I found that his demands became too much for me. I was doing most of the work myself with little help from others. After eight months, I found myself increasingly less willing to cook his meals, take him to the toilet, even bring him water when he asked. The greater my reluctance, the guiltier I felt. Luckily, a social worker at the hospital noted my change in at-titude and got me the help I needed.”


Humor. Laughter is still the best medicine. Get a stack of Marx Brothers DVDs or other movies that make you laugh. Keeping a sense of humor is one of the best ways to cope with a challenging situation.

Be Good to Yourself. Do something on a daily basis that makes you feel special. It might be a delicacy, a place to visit, a warm bath with lighted candles, a massage, a good book, lunch with friends. The important thing is to take a break from your regular routines and have something to look forward to every day.

Fall In Love All Over Again. Many caregivers find that going through the ordeal of cancer brings them closer to their loved one. Facing the roller coaster ride of cancer treatment together can strengthen a relationship, whether it be with your mate, a family member, or a close friend. It will help you both have a more posi-tive and hopeful outlook.

Journaling

A single 20-minute writing session helped patients change the way they thought about their illness and improved their outlook, according to a study by Georgetown University researchers in the February 2005 issue of The Oncologist.

For more information on burnout, visit: http://tinyurl.com/9j8ozrs


Working with the HospitalHospitalization is an unsettling, scary, and confusing experience for most people and puts an extra burden on caregivers. The hos-pital is an enclosed system with its own rules, staff, hierarchy, and customs.

Here are some ways you can help smooth the way for your loved one. Develop a friendly relationship with the residents and nurses, who can be enormously helpful. Find out when the doctors make their rounds so you can be there at that time. Know the contact information for the doctors. Most specialists have a nurse-practi-tioner or physician’s assistant, who can address many of your con-cerns. Many hospitals have a patient representative who can act as your advocate. A publication you may find helpful is “The Patient’s Checklist” by Elizabeth Bailey.

Just being there with your patient can be very comforting. It also allows you to monitor his or her meals and medication to con-firm that the doctor’s orders are being followed. You can usually arrange to stay at the hospital or nearby if you are coming from a distance. And once your patient has settled in, you can take time off knowing that your loved one is in good hands.


“Taking Charge” Guide 4

In Guide 4 When Treatment Ends, we will provide information on what is involved in home care, hospice care, and palliative care, and tell you what you need to know in dealing with a variety of legal and financial issues.

Stay in Touch with ACKC

Like us on Facebookwww.facebook.com/ActionToCureKidneyCancer

Follow us on Twitterwww.twitter.com/ACKCancer

Read our Newsletter to keep up to date regarding ACKC news and activities. Email us at [email protected] to subscribe.

Join our Committee. Meetings are held in New York City. Contact us for more information.

Contact ACKC

Action to Cure Kidney Cancer 150 West 75th Street, New York, NY 10023

Telephone 212 714 5341 Email: [email protected]

Credits

Written and Researched by Carol Kahn Designed by Sara Mears | Communication By Design

Page 10, 13, 14 and cover images: istockphoto.com Page 4 image: shutterstock.com Page 6 and 9 images: bigstock.com

© 2016 Action to Cure Kidney Cancer

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Action to Cure Kidney Cancer 150 West 75th Street, Suite 4, New York, NY 10023

212 714 5341 • [email protected]

ackc.org

taking charge of kidney cancer: caring for my caregiver

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