Intheknowissue33

Page 1

know in the

understanding the cancer experience

CAREGIVING Practical advice about caring for a loved one with cancer

Issue 33 complimentary magazine



IN BOARD OF DIRECTORS Gordon L. Black, M.D., Honorary Michele Aboud Robert Ash Patricia Carter, RN Ted Edmunds Sam Faraone Monica Gomez Youn-mi Jaquez Dan Olivas Irene Pistella Shelly Ruddock Ruben Schaeffer Ken Slavin Katie Updike Polly Vaughn Steve Yellen EXECUTIVE DIRECTOR Patricia Tiscareño PROGRAM COORDINATOR Cindi Martinez ADMINISTRATIVE ASSISTANTS Maggie Rodriguez Rachel Juarez

THIS ISSUE: Caregiving and Cancer

The numbers are staggering. According to the National Alliance for Caregiving, more than 65 million of us provide care for a chronically ill, disabled or aged family member or friend during any given year at an average of 20 precious hours per week. Most caregivers work outside the home, have a family and are unpaid for their good work. They take on the role knowing it may be a long-term commitment they must squeeze into their already crammed days. And with this new ‘career’, they find themselves having to become experts in a role most did not envision in their life plans. As I pen this editorial, it is in mind of two dear friends -Beth and Ted - both of whom have full time careers, community commitments and charge over their aging parents. As both of their parents live independently, they traverse the freeways daily to attend to doctor appointments, shopping, meal preparation and peace of mind visits which evaporate the minute they depart. Both of them take their role as caregivers in earnest, seeking educational opportunities and professional assistance at every step. Beth recently sought the help of an organization to assist her parents in weekly grocery shopping; a much needed outing for them as well as a preservation of their treasured independence.

Ted and his sister share the responsibilities of caring for their father, utilizing logs, calendars and assignment journals to keep each other constantly informed of his needs and appointments. For both Beth and Ted, the act of helping their loved ones with their personal care has contributed to their self-identification. This is a role they embrace with a dutiful compassion. If caregiving is a burden, it is one they undertake willingly and with love. In this issue of In the Know: Understanding the Role of the Cancer Experience, we explore the world of caregiving as it related to a cancer diagnosis. If you take into account the estimated 1.6 million new cancer cases that will be diagnosed in 2015 with more than half of those diagnoses at age 65 and over, the role of caregiver looms that much larger. Keep this issue handy; it is chock full of resources, tips and practical information for that which will be inevitable for so many of us. I think Og Mandino, the author of “The Greatest Salesman in the World”, nailed it when he said "Realize that true happiness lies within you. Waste no time and effort searching for peace and contentment and joy in the world outside. Remember that there is no happiness in having or in getting, but only in giving. Reach out. Share. Smile. Hug. Happiness is a perfume you cannot pour on others without getting a few drops on yourself." Sincerely, Patty Tiscareño, Executive Director

F E AT U R E S in the

know is published by the

5

15

20

Rio Grande Cancer Foundation 10460 Vista del Sol, Suite 101 El Paso, TX 79925 (915) 562-7660 fax (915) 562-7841 www.rgcf.org by

Caregiving 101

Hope for the best...

The kitchen is open

It’s time to get out your notebooks and get schooled. Here we offer a myriad of advice on the complicated and challenging subject of caregiving.

Dealing with difficult decisions is part of the caregiving experience. In this feature we illuminate some of your options for dealing with them.

Mealtime can be a challenge for patient and caregiver alike. Here our experts serve up some ideas that are easy to digest.

Snappy Publishing ted@snappypublishing.com El Paso, Texas 79912 (915) 820-2800 Those submitting manuscripts, photographs, artwork, or other materials to In the Know for consideration should not send originals unless specifically requested to do so by In the Know in writing. Unsolicited manuscripts, photographs, and other submitted materials must be accompanied by a self-addressed overnight delivery return envelope, postage pre-paid. However, In the Know is not responsible for unsolicited submissions. ©2015 Rio Grande Cancer Foundation. All rights reserved. No part of any article or photograph contained in this magazine may be reproduced in any way without the written consent of In the Know. In the Know assumes no responsibility whatsoever for errors, including without limitation, typographical errors or omissions in In the Know. Editorial or advertising content in In the Know does not necessarily reflect the opinions of the publishers. In the Know assumes no responsibility for the products or services advertised in this magazine. Publisher reserves the right to edit any material or refuse any advertising submitted.


MORE THAN

YEARS

FIGHT CANCER When you’re treated at Texas Oncology, you can be sure you’re getting world-renowned cancer care right here in El Paso. Our physicians provide compassionate patient care, offer the latest treatment innovations and share one goal: to be the best at what they do. With more than 150 locations and 350 oncologists throughout the state, every Texan can receive recognized cancer care close to home. Maria C. Aloba, M.D. • Byron Chesbro, M.D. • Jesus A. Gomez, M.D. Nanda K. Gopalan, M.D. • Anuradha Gupta, M.D. • Stephanie C. Han, M.D. • Juan Herrada, M.D. • Arsenio Lopez, M.D. Raul Portillo, M.D. • Ragene Rivera, M.D. • Ines Sanchez-Rivera, M.D. • Panagiotis Valilis, M.D.

EL PASO CANCER TREATMENT CENTER GATEWAY 7848 Gateway East El Paso, TX 79915 915-599-1313

EL PASO CANCER TREATMENT CENTER GRANDVIEW 1901 Grandview Avenue El Paso, TX 79902 915-544-6750

1-888-864-I CAN (4226) • www.TexasOncology.com

HOW TEXANS FIGHT CANCER.

EL PASO CANCER TREATMENT CENTER JOE BATTLE 3270 Joe Battle Boulevard, Suite 312 El Paso, TX 79938 915-849-2700


5

CAREGIVING 101

CG 101 rom diagnosis to treatment and through recovery the role of the caregiver evolves as their patient’s needs change. Upon diagnosis, the caregiver will offer emotional and tangible support. During treatment, the caregiver becomes more engaged and should be prepared to assist the patient more directly. After treatment, as the patient begins to approach life beyond cancer, the caregiver’s role changes yet again.

F

By Manny Rodriguez

K N OW MO R E >


6 CAREGIVING 101

CG 101 Who are caregivers, and what do they do? Caregivers are usually unpaid loved ones who give the person with cancer physical and emotional care. Caregivers may be partners, family members, or close friends. Most often, they are not trained for the caregiver job. Many times, they are the lifeline of the person with cancer. Here are a few ways caregivers can help: • Shopping for and preparing food • Encourage eating even when they don’t feel like it • Organizing and dispensing medications • Bathing and grooming • Housekeeping and laundry • Paying bills • Emotional support • Get to and from doctor’s appointments, tests, and treatments • Manage medical problems at home • Coordinate cancer care • Decide when to consult a doctor for new problems

I am a very positive and happy person but I am not Superwoman. I also have feelings. I get mad, upset and grouchy too. That is why I am constantly praying - especially when I am bathing, changing or taking care of my husband’s personal needs. I really admire all caregivers, nurses who work with difficult issues, and families that have disabled children. I have only 15 years experience and I am still learning everyday. -Rosa Guerrero, Caregiver

Perhaps the most important thing that one should consider in caregiving is to understand that cancer presents in many forms, and thus one should seek to understand the diagnosis and proposed treatment plan that the patient will eventually undertake. Seeking knowledge and doing as much as you can to learn about the type of cancer that you will be facing together with your patient will help you in understanding how best to support and provide care for them. No one can ever be quite ready to accept a cancer diagnosis. This goes for the person being diagnosed as well as their friends and family members… the people who will eventually become their caregivers. This means you will need to become quickly acquainted with the technical aspects of how the cancer will affect their lifestyle. This is where you must prepare emotionally and become the crutch that your patient will rely on going forward. For many cancer patients the initial response upon diagnosis is confusion and a sense of being lost, not knowing where to begin. This is when you as a caregiver should be prepared to take your patient by the hand and walk them through their diagnosis, preparing for the challenges that lie ahead. In this initial phase it is extremely important to understand the mindset and emotional state of your patient. There is a wide range of emotions that your patient will be experiencing - from anger and denial to acceptance and

exhaustion - and you will be there every step of the way. Therefore, you should work to sharpen your emotional intelligence to help manage this. Oftentimes patients just need somebody to listen to them as they express themselves. The caregiver can take this as an opportunity to guide them through their emotions. Having an open and honest conversation provides some of the best support that anybody could ever offer. Just being there and helping create an air of normalcy can also be a form of emotional support. This is something that can be done day-to-day. You may also consider planning this out by scheduling outings (if possible) to help them to break away from their routine. During the treatment phase your support will become practical and more tangible than ever. This is where you can help to support your patient by organizing trips to the doctor and buying groceries, or helping sort out medications and keep them on track to recovery. This is where you should consider developing a support network of your own, because you simply cannot be in all places at all times. Draw on close friends and family members to assist in anyway that they can. Maybe you can take turns assisting your patient to doctor’s appointments and running errands. You’ll need your rest and it'll help you keep your own life together, too.

Treatments for cancer vary widely – from radiation therapy, chemotherapy and surgery - and each can have vastly different side effects. It is vitally important that you become familiar with and understand them as you help your patient go through treatment. You may also consider consulting a nurse navigator to guide you within the healthcare system. At home, you will become the navigator helping your patient to stay strong in mind, body and spirit as the treatments run their course. During recovery you will be there to help your patient celebrate their achievements as they face the prospect of living cancer free. Oftentimes, patients need help to see the incredible strides that they’ve made in their battle against cancer or how they’ve overcome so many obstacles on their road to recovery. This is when you can bring this to light and celebrate their strength and resolve. You may even want to encourage them to participate in events that bring people together, such as races, walks and gatherings to help them break free of the fear and uncertainty that they’ve been experiencing. Lift them up, praise them for the champions that they are and help them to begin building a future filled with new possibilities.


7

Rosa Ramirez Guerrero of El Paso, Texas, has played many roles in her eighty years. She is an artist, educator, dance historian and humanitarian. In her most recent role as a caregiver, Rosa shares her story...

In my own words: Rosa Guerrero The role of being a caregiver is incredibly difficult and is not a task one undertakes lightly. No one ever knows if they are going to be a caregiver when one is young. I did not even know what a caregiver was. We never ever had them when we were young and the idea did not exist in our era. We had nursemaids to take care of children, but not caregivers. As the world changed and people started to live longer all these health groups and senior citizen living centers also grew to take care of this population. I have been married to Sergio for sixty years and the last fifteen have been the hardest. My husband retired at the age of sixty from teaching. After retirement we had all these plans to travel the country and see the world. For the first few years after retirement we went to the YWCA to swim or do water aerobics three times a week and we would walk at our football stadium every morning. Then his knees began to hurt and walking became to difficult for him so we stopped exercising. Sergio’s knees were the first in a long and tragic line of illnesses that would follow over the next few years. With the death of three close friends in a matter of six months, my husband sunk into a deep depression. He lost 100 pounds and developed severe anxiety which lead to the over prescription of medications by his doctors. The constant intake of medication and treatment of his prostate cancer led to osteoporosis and the breaking of both hips as well as a herniated disk. Being in the hospital bed for a long period of time led to a pressure ulcer on his heel and MRSA, which is a staph infection found in hospitals. As he recovered and began physical therapy my husband then developed an arrhythmia in his heart and received a pace maker. Our life together had changed and the plans we made for retirement were gone. The little trips we used to take to northern New Mexico, Ruidoso and Cloudcroft had ended. We have not had a vacation for fourteen years now, and because of

his illness and numerous doctor visits our finances have been greatly depleted. When Sergio was finally home again after his physical therapy he had a stroke right before Christmas and has been in a wheel chair ever since. He cannot stand up, go to the bathroom or get into bed without help. I had to learn to change him, bathe him and help him with all his personal needs. His illness and old age has now taken a toll on my own health. I have developed diabetes and severe lower back problems that require a treatment of routine steroid injections. Of course, I also blame seventy seven years of dancing as the wear and tear of my body has caught up with me. I use a cane now and try to remain active in my community - cane and all. My dearest friend, Terri Wyatt gave me a special cross to hold when she saw me down and crying as a way of helping me keep my faith strong. Prayer is what gives us the strength and faith to continue with fortitude. Being a caregiver has taught me so much. Since he has to be in bed at 8:00, I have discovered the greatest form of peace and tranquility and prayer with no one interrupting me. I had never had such quietness in my life. My home was like Grand Central Station with my children and grandchildren. This peace make me reflect on how lucky I am to have great doctors, nurses and now a part-time provider who helps e tremendously I am a very positive person and get mentally and spiritually stronger with my husband’s many illnesses. Physically, I will never be able to dance again but I can lecture, inspire, energize and motivate others with my bag of Rosa’s tricks. God is good and we should all be thankful for all the blessings we have in this great country. I am a very positive and happy person but I am not Superwoman. I also have feelings. I get mad, upset and grouchy too. That is why I am constantly praying - especially when I am bathing, changing or taking care of my husband’s personal needs. I really admire all caregivers, nurses who work with difficult issues, and families that have disabled children. I have only 1 years experience and I am learning everyday. I try to make my husband happy and laugh with I’m, not at him We have both developed a strong love of reading and now have the time to do it. We also play dominoes - one of his favorite games because he beats me all the time. We do not consider ourselves TV watchers but we do enjoy watching the news and our favorite shows, Jeopardy and Wheel of Fortune. This experience has taught me to develop more patience and control over my own anger and personal issues. Now with the pain in my lower back, which is getting worse each day, I have learned to rely on family and our provider to help with everyday tasks. I wish I could have been more informed and truly prepared how my life as a caregiver would affect me. It does not get any easier and it will only get harder as time goes by, but with the grace of God and the love of my family, I will find a way to make it through.


8 CAREGIVING 101

CG 101 One way to keep everyone informed is to have family meetings. When planning a family meeting, it’s important to include everyone who is or will be part of the home caregiving team. This could include a family friend, neighbor, or paid caregiver – and don’t forget the patient! If it’s hard to get everyone together, a conference call or speaker phone might help solve the problem. Some of the things that you may want to discuss: • The latest report from the doctor: How things are going and what to expect next. • Feelings and concerns • What the person with cancer wants and needs • How much time each family member has to help out or visit. • Ways each person can help or arrange help, i.e. cleaning, laundry, yard work, child care, etc. • How to get breaks from caregiving from time to time Try to get everyone to focus on the issues at hand. You might even want to write up a list of issues or questions and have everyone look at it and add their own.

COMMUNICATION You’ll need to be able to talk to the patient, the medical team, friends, family, and even people you barely know who are concerned about the patient. This can be hard to do. And when you need information from the medical team, it may not be possible to get it without signed permission from the patient. A few tips to help you communicate clearly: • Respect your own feelings, needs, and desires, as well as those of the patient. • Speak out about your feelings while being sensitive to those of others. • Try to use “I” statements rather than “you” statements. For instance, say, “I need a break” instead of “You never help me!” Beware of statements like, “I feel you ignored me,” which says to the other person that he or she did something wrong. Instead, try “I didn’t hear you answer when I mentioned ______,” or “I need help with this problem.” • Focus on the present rather than bringing up old patterns or hurts. How do I talk to the patient? Start with the patient. Let them know you want to be there for them and want and need to be included in their care. Try something like: “This is a scary time for both of us, but I want to be here for you to help you get through this. You’re not alone.” “I’ll do whatever I can to help you through this. I might do the

wrong thing sometimes, or not know what to do, but I’ll do my best.” “We can do this together. Let’s try to be open with each other and work with each other no matter what happens.” It’s good to set a goal of openness and sharing right from the start. Remind each other that you’re “on the same team.” Share your fears and worries. Sometimes it may be hard and you’ll disagree and maybe even fight, but openness will help you deal with the conflict. It will also help you keep supporting each other and reduce distress and anxiety. Acceptance and sharing will help keep your relationship strong.

How do I talk with the medical team? First, get the patient’s consent. The caregiver is often the link between the patient and the medical team. In general, the medical team can share information with you anytime you are with the patient. But there are laws that protect private health information. These laws affect what medical information your loved one’s health care team can talk to you about when the patient isn’t present. Still, there are ways you can get information on behalf of the person with cancer. The simplest and most common way is for the patient to sign a release form that lets the doctor discuss their care with you. Talk to the doctor about what steps need to be taken so that the health care team can talk to you about the patient’s care.

Then be sure there’s a copy of the form in the patient’s records and keep the release form up to date. It’s also a good idea to keep a back-up copy for your files. When you call the doctor’s office, you may need to remind them that they have the form and they can discuss the patient’s care with you. If you don’t have a form like this completed yet, you probably won’t be able to get certain kinds of information. But you can still share information with the doctor. You can tell the office staff that you are giving information rather than asking for it. Even without the patient’s consent, you can try asking for general information about problems the patient has; for example, “Is vomiting one of the side effects of the chemotherapy that Joe got this week?” Or you can ask for advice; for instance, “If Joe has been vomiting for 2 days, should we come in to see you?” Even though you may not get details of Joe’s care, you may be able to get some help in deciding what to do next. Keep in mind that there are different forms that are signed for different purposes. Here we are talking about a release form that allows the doctor to share medical information with you. Doctor’s offices may call this a “HIPAA form.” This type of release does not give you permission to make decisions about the patient’s care. Which doctor do I talk to? Cancer treatment often involves more than one doctor. There may even be a team of doctors, nurses, and other people taking care of your loved


9

Good communication lets you express yourself, help others understand your limits and needs, and understand the limits and needs of the person with cancer.

one. You might get information from many of these people, but it’s a good idea to pick one doctor to be the one you go to with questions. Most people choose the doctor they see most often. In choosing a doctor as your main contact, some things you may want to ask are:

the patient who forgets to mention problems to the doctor and/or comes home without the information you need. And finally, if you need a referral, maybe for a specialist, social worker, or medical supplier, you may be able to get the names of people who can help.

Will you be the one to coordinate care? Will you keep the other doctors updated on what’s going on? The person with cancer should feel at ease with the doctor, and you should too. But sometimes, it takes a little time and work before this happens. Take the time to ask your questions and make your concerns known. The doctor should also take the time to answer your questions and listen to your concerns. If you, the patient, and the doctor feel the same way about sharing information and making choices, you’ll probably have a good relationship and you can get what you need. Most health experts who work in the field of cancer do so because they care about the needs of people with cancer. When you look back on this experience, some of your strongest memories may be of those health care providers who were with you through a really hard time.

How do I use time with the doctor well? The average doctor’s appointment is about 10 to 15 minutes or even less, so it helps to be ready for each visit. You and the patient should figure out the most important things you need to talk about before you go. For instance:

Should I go to doctor visits with the patient? Going to see the doctor with the patient is a good way to learn more about his or her medical condition. This can be very helpful when caring for the patient later on. It can also help

What symptoms do you need to tell the cancer team about? When did these symptoms start? Making a list ahead of time to take with you will help you to use your time in the office well. And it means you won’t forget anything important. Don’t leave the office until the doctor answers all your questions and you both understand what to do next. Nurses can also be great sources of information, and you might get to spend more time with them than the doctor. Take notes on what’s said to you. This will help you keep track of what you should remember. If you’re getting back test results, be sure you understand the results before you leave. If blood work or other tests were done, find out when and how you’ll get the results. Also, ask who will tell you what the results mean. Source: www.cancer.org

Questions to Ask about Medication Management

Good medication management includes asking lots of questions. Here are some that many family caregivers may want to ask: For New Medications What is the name of this medication? Why does your family member need to take it? What time each day should your family member take this medication? Can this medication be taken with food? If it is to be taken “on an empty stomach,” how many hours before or after meals? Are there any foods, drinks, or activities(such as driving) to avoid when taking this medication? If the medication is prescribed as needed,”how do I know when to give it? Should I expect any problems such as side effects or allergic reactions? What do I watch for?

What should I do if the patient has any of these problems? Is this prescription for the brand name or generic form of this medication? If a generic version is available, can my family member take that? How much does this medication cost? Does my pharmacy have it? Will insurance pay for it? If not, how else can I get this medication? For Medications Your Family is Taking Now What should I do if my family member misses a medication dose? Should the next dose be doubled or should I give the usual dose? What if the patient takes too much or too little of this medication? When should the patient stop taking this medication? www.nextstepincare.org ©2010 United Hospital Fund


10 CAREGIVING 101

CG 101 Tips to Manage Caregiver Stress You can ease your stress with a few simple techniques that don't take a lot of time. Try these methods to ratchet down the tension. • Two-minute relaxation. Switch your thoughts to yourself and your breathing. Take a few deep breaths and exhale slowly. • Then do a mental scan of your body to find which areas feel tense or cramped. Quickly loosen up these areas. Let go of as much tension as you can. • Rotate your head in a smooth, circular motion once or twice. (Stop any movements that cause pain.) Roll your shoulders forward and backward several times. Let all of your muscles completely relax. Recall a pleasant thought for a few seconds. Take another deep breath and exhale slowly. You should feel relaxed. Mind relaxation • Close your eyes. Breathe normally through your nose. As you exhale, silently say to yourself the word "one," a short word such as "peaceful," or a short phrase such as "I feel quiet." • Continue for 10 minutes. If your mind wanders, gently remind yourself to think about your breathing and your chosen word or phrase. Let your breathing become slow and steady

DECISION MAKING Making health decisions The health care team will always discuss major health decisions with a patient if the patient can think clearly and share their thoughts. And the patient’s decisions about their own health will be followed when their decisions do not create safety issues. Sometimes, what the patient wants is not what others want or will do for them. When patients need help carrying out their wishes, it can be hard on those who want something different from what the patient wants. What if we can’t agree on something important? It’s good to know that you and the patient don’t always have to agree. Some of the decisions and problems that come with a cancer diagnosis can be very tough and very emotional. Remember to let the person with cancer make decisions about his or her care whenever possible. There are some things you can do to help them make the best choice. Explain your needs and wants clearly and let the patient to do the same. As an example, you may need to do this when deciding whether to give certain treatments, such as IV antibiotics, at home or in an infusion center. The patient may want to do this at home, but will need your help. You might need to say “This is too scary for me. I don’t think I can do this at home, but I can make sure you’re at the clinic every day.” Offer choices or a time limit when decisions need to be made. A change in medicines is a good example. “Let’s try this

sleeping pill for a few nights and see if it helps you get some rest. If not, we’ll talk to Dr. Smith about trying something else.” Focus your energy and influence on the issues that are important. Let the patient make as many choices as possible. For example, arguing over what clothes to wear probably isn’t the best use of anyone’s energy. But not taking medicines or not following activity restrictions may be issues that you can’t ignore. If reasoning with the patient doesn’t work, explain that you will talk to the medical team and get their help – then do it. Again, open communication with the person you are caring for is the most important part of your role. Speak up for the patient and his or her needs. Help the patient get needed information. Get input from other team members, then offer your support and encouragement. When do I call the doctor? Sometimes it’s hard to know if something is “bad enough” to call the doctor after hours or in the middle of the night. The best way to know when to call is to ask. Ask the doctor or nurse what problems you should call about right away, no matter what time it is. This may be a fever or new pain, or some other problem. You can also ask what can wait until the next day or the next appointment. Also be sure you know whom to call after hours, on weekends, and on holidays. If you do not have 24-hour access to someone on the medical team, find out what you should

do if there are problems. Should you call your pharmacist if there are problems with the medicines? Should you go to the ER? It often seems like problems come up when the doctor’s office is closed, so be sure you have an emergency plan in place. You can find more details on dealing with symptoms and when to call the doctor in the booklet, Caring for the Cancer Patient at Home: A Guide for Patients and Families available at the Rio Grande Cancer Foundation. How do I know what the patient wants? Everyday choices are easier to make if you understand the patient’s preferences, habits, and values. What’s most important in the patient’s life? Everyday choices include deciding what to wear, when to bathe or eat, and what else to do after that. But when you’re dealing with cancer even these simple choices can be overwhelming and hard to make. Sometimes a small crisis can make the patient unable to express what she or he wants or needs. As much as possible, honor the patient’s wishes, but be realistic about the limits on what you and other caregivers can do, as discussed above. What if the patient won’t do things for himself or herself? This can be frustrating for a caregiver. You feel sure that the patient can do some things for themselves, but you do all of them because the patient won’t. Sometimes there are medical or emotional causes for the


11

Give people enough guidance to make the decisions you want them to make. Don't tell them what to do, but encourage them to do what is best. - Jimmy Johnson Read more at www.brainyquote.com

problem, such as severe tiredness (fatigue) or clinical depression. If you’re not sure, get the patient to the doctor and state the problem clearly. The medical team can help you figure out what may be going on.

“My caregiver mantra is to remember: the only control you have is over the changes you choose to make.”

It’s not always needed and may seem hard to do, but sometimes you might have to set limits.

-Nancy L. Kriseman, The Mindful Caregiver: Finding Ease in the Caregiving Journey

Try to figure out what self-care tasks the patient can safely do, such as bathing, dressing, and going to the bathroom. If you don’t know what the patient can do, get the medical team to evaluate the patient. Social workers and occupational health professionals may be able to help with this. Encourage the patient to do self-care as much as possible. Encourage the patient to talk about things they enjoy so the conversation isn’t always about cancer and illness. Let the patient make as many personal choices as they can. If they are overwhelmed with decisions, give them simpler choices by saying, “Would you prefer chicken or fish for dinner?” or “Would you rather wear your blue pants or the brown ones?” Get others involved if the patient is avoiding treatments or doing things that can cause harm. Family members can be a strong source of influence. Rally them for support. Once a decision is made, accept it and move on. And if you disagree with the decision that was made about the patient’s treatment, remember that it’s the patient’s decision to make. Congratulate them for being able to make a decision. Remember that professional help is available to you. It’s normal to feel frustrated, upset, and stressed when caring for someone with cancer. Use the resources and services of the health care team when you need them. They can help you find the support you need, such as mental health counselors, home care services, or financial assistance, so that both you and the patient can have the help you need.

Does the patient need to be moved or relocated? Open and honest discussion with the patient and other family members is the first step in deciding whether the patient needs to live somewhere else for a time. Cancer and its treatment can cause confusion and forgetfulness, and may worsen the symptoms of other conditions such as dementia. Patients can endanger themselves by forgetting medicines, not eating, leaving the house, or losing track while cooking. Patients can be a danger to themselves and others if they start to hit, bite, or throw things at caregivers or family members. Homes are rarely set up to deal with these kinds of problems. In such cases, the cancer care team needs to know about these behaviors. The patient may need to be hospitalized, if whatever is causing the problem can be treated. For less severe problems, such as mild forgetfulness, unsteady walking, and occasional minor confusion, there may be other options. Again, tell the cancer care team about these problems to find out if there is a medical reason for them and if treatment is needed. Sometimes the less severe problems can be managed at home if someone can stay with the patient at all times. But these problems deserve special discussion by the family. Otherwise, other family members might assume that the caregiver will be the one to stay home and provide 24-hour care for the patient.

Family meetings with the patient, spouse, children, siblings, and other key people can allow everyone to share their thoughts and can help you decide what to do. Sometimes these talks can be very difficult and emotional, but certain topics will need to be covered. What amount or type of care is needed. For instance, does the patient need 24-hour supervision? What can she or he safely do without help? What other living arrangements are available? Can the patient move in with another family member? An apartment closer to the primary caregiver? A smaller house? An independent retirement community? This discussion can be tricky if the patient gets confused or fearful at times. It helps to have the doctor’s or occupational therapist’s (OT) assessment of the patient’s needs. For example, if their professional opinion is that the patient cannot be alone at all, and the only caregiver has to work full-time to make the house payment, something else must be done. An occupational therapist’s assessment can also tell you if the patient can be kept safely in the home if certain modifications are made. Ask your doctor about a referral to an OT. This may be easier if the patient is in a hospital or extended care facility. Ask the doctor or nurse about getting an OT evaluation before the patient leaves. KNOW MORE>


12

CAREGIVING 101

CG 101 Is a nursing home or extended care an option? There may come a time when your loved one needs extended care or nursing home care. Even though you might not be with the person all day, you’ll still find that you are a caregiver. It just may look different, since you are no longer providing all of the hands-on care. But you will still be talking with the staff at the facility, visiting the patient, and staying in touch with those who are providing care. You’ll also be the first one called if there are problems. Your caregiving experience will help you deal with the situations that may come up. You also will know who to call if more help is needed. In some cases you have to be firm, especially if the present situation is unhealthy or unsafe. If you have to act against the wishes of the person with cancer, be direct and explain what you’re going to do. In other cases, there’s room to negotiate. All of you, the patient, the family, and you, the caregiver, will need to be sure you have covered all options.

CARE OPTIONS By Judy Phelan O’Connor A cancer diagnosis can you leave you confused about your care and wellbeing. Both the cancer and the treatments can take a toll which can lead to fatigue, weakness, and overall blahs. Sometimes you just need a little help - and it’s okay to ask! Whether you need transportation, help with your shower, meal preparation or more. Sometimes we just want someone in the house with us, even for a few hours a day. There are several caregiver options. Care choices depend on age, health and physical condition, and assistance needed with activities of daily living. Is someone in the family or a friend willing and able and to serve as caregiver? IN-HOME CARE With the initial cancer diagnosis we have every reason to expect to live independently at home. However, home alone can become isolating when we’re sick. As the saying goes – “walls don’t talk”. Companion services give you and your family peace of mind and provide personal care such as bathing and dressing, medication reminders, mental stimulation, light housekeeping and meal preparation, and transportation. These services are provided in hourly increments or sometimes the caregiver resides in the home 24/7 • One way to find the “perfect” non-agency home care provider is word of mouth. Ask friends and verify references. Criminal history and sexual offender background checks

are recommended. The advantage is one-on-one attention but remember that one needing care can be vulnerable. While this may be an affordable option, have a back-up plan for when the caregiver is absent. • Companies such as Comfort Keepers provide in-home companion and care services. The benefit is having a team of caregivers. These companies do background checks and bond employees. Based on need, those with Long Term Care insurance may claim a portion of the cost. The Star Plus Program (Medicaid) may cover some of the cost. • Depending on medical criteria Medicare or private insurance covers the services of a home health agency including regular visits by a nurse, aide and therapist. This is not 24hour care but supplements inhome care. • Elder Care Oversight Agency provides a private RN who is familiar with care of the aging and resources in the city. The nurse makes regular house calls, accompanies her clients to doctor appointments, and reports to family. • For those who have been diagnosed with a terminal illness hospice care is given in the patient’s place of residence provided by an interdisciplinary team including physicians, nurses, CNA’s, chaplains, social workers and volunteers. It is important to remember that any patient staying at home should wear a medical alert button in case of a fall or medical emergency.

COMMUNITY LIVING Some facilities offer a Respite Stay program for those who need short term care (3-6 weeks). This is beneficial to the cancer patient who lives alone. It also allows time off for family members or caregivers who are responsible for someone who is ill, injured or frail. Community living offers a safe, caring environment while the caregiver takes a break. INDEPENDENT RETIREMENT COMMUNITY A typical resident in a Senior Living Community is around 85 years old, possibly still driving (but not at night), playing bridge but not eating properly because ‘who wants to prepare a meal for one person.’ Families are worried. These residents love having an apartment where they can be independent but enjoy meals and activities with other residents their age. No more cooking, cleaning, or home maintenance! Each apartment has a pull cord for emergency assistance. ADULT FOSTER HOME When home “alone” isn’t an option and one-on-one care isn’t affordable other choices can meet the unique needs of individuals. Adult Foster Homes provide assistance in a home environment. Homes average four residents not including family members. Licensed homes have a manager and trained caregivers. Some homes are Medicaid certified. ASSISTED LIVING COMMUNITY Assisted Living is home for those who need extra help but


13

Patients may feel that they’ll no longer be able to set the rules or control their own lives, or they may be afraid of losing their independence. Maybe they don’t want to feel they are a burden on others. And if they have lived in the same place for a long time, they probably have strong ties to the community, family, friends, and health care providers, as well as social lives and daily routines.

NOT skilled nursing. Residents typically move from their home or retirement community when declining health or mobility has made independent living difficult. They are admitted by their primary physician and have a personalized care plan. In addition to the Licensed Vocational Nurses (LVN) and 24/7 Certified Nursing Assistants (CNA) on staff, home health agencies provide nursing services and therapies approved by Medicare. Residents maintain independence in private studio apartments and have the advantages of community living like 3 daily meals, transportation, and housekeeping. Activities include exercise classes, happy hour, games, music, church services, etc. Personal care is described as oral medication administration, bathing, dressing, eating, toileting, and transferring (included in the base fee or charged by level of care). Larger communities may have their own beauty salons and libraries. Assisted Living communities, licensed and inspected by state and local governments, are paid for privately by resident / family but can be supplemented for those who qualify (both medically and financially) by Long Term Care insurance or Veterans Aid and Attendance (this benefit is designed to provide financial aid to veterans to help offset the cost of long-term care ). NURSING HOME In a Skilled Nursing Facility (SNF), or nursing home, patients receive all the 24hour services of Assisted Living plus skilled services that aren’t available in one’s home such as complex wound dressings, rehabilitation, tube feedings, or rapidly changing health status. After a hospital stay some patients are transferred to SNF for rehabilitation which is covered by Medicare / Medicaid / private coinsurance for 100 days maximum. Patients who need care or treatment that can only be done by licensed nurses become long term residents. Costs are typically covered by the individual / family, Long Term Care insurance, or Medicaid in either a private or semi-private room.


14 14

know in the

understanding the cancer experience

community spotlight by Patty Tiscareño and Michele Aboud

•••

Now What? Providing Care During Difficult Times For most people who receive a cancer diagnosis, there is the expectation and hope of a positive outcome - successful treatment, remission or just the ability to manage the day-to-day challenges. But how does one embrace hope when treatment is no longer an effective option? One physician calls this situation “the ultimate hope”, explaining that hope lies not in changing people and their circumstances but in changing our minds. For patients for whom hospice care has been recommended, hope becomes not what will happen in the future, but in living now and being present in the moment-to-moment choices that we make. Michele Aboud, administrator for CIMA Hospice-El Paso says that choosing hospice doesn’t mean you’ve given up. “It means that the treatment goals are different now”, she contends. “The people on our hospice team strive to make patients live each day to the fullest by making them as comfortable and symptom free as possible”, she states. Hospice, a name applied to specialized care for dying patients, originated in 1948 by physician Dame Cicely Saunders, who began her work with the terminally ill and eventually went on to create the first modern hospice in a residential suburb of London. The evolution of hospice, as we know it today, offers medical care toward the goal of maintaining or improving quality of life for someone whose illness, disease or condition is unlikely to be cured. Typically, hospice is available to the patient and entire family in their own home when curative measures have been exhausted and life prognosis is six months or less. “Care doesn’t just extend to the patient”, says Michele Aboud. “Since 2006, CIMA Hospice has provided compassionate end-of-life care to patients and offers practical support for the caregiver during the illness”. Each patient’s individualized care plan is updated as needed to address the

physical, emotional and spiritual pain that often accompanies terminal illness. An additional service is bereavement counseling that is available to family members in their time of grief. The hospice team is a unique network of skilled personnel which includes physicians, nurses, hospice aides, social workers and spiritual counselors. “There are so many things for the family to consider”, says Aboud, “so we approach the care from a holistic approach that incorporates all aspects of a patient’s needs”. “Our services include not only medical care, but equipment, supplies, pharmaceuticals, medical and nursing services and psychosocial support – all in the comfort of the patient’s home”, she adds. Home in this definition also include patients living at a nursing facility, a foster home or in the home of a loved one. CIMA Hospice understands that caring for someone who is terminally ill can and will take a toll on the caregiver’s life and mental wellbeing. It is common for caregivers to take on too much or to try to handle everything on their own. It is important for the caregiver to remember that getting help for themselves can also benefit their loved one. “We’re there to provide the entire family that support during this part of the journey”, says Aboud. Included in hospice care is respite care, available to family caregivers at times when they need to rest from their care giving responsibilities. Talking about serious issues is never easy, especially with a loved one who is facing the end of life. While you and your loved one can still have hope for longer life or an unexpected recovery, it is a good idea to talk about what’s really happening and that the future is uncertain. What is most important is that you remember your loved one has the right to choose how to live the rest of their life.

Those eligible to receive hospice care may already be covered under Medicare, Medicaid, HMOs or private insurance plans. CIMA Hospice accepts all insurances including commercial, Medicare, Medicaid and private pay. A partial list of services they offer includes: • Time and services of the care team, including visits to the patient’s location by the hospice physician, nurse, medical social worker, home-health aide and chaplain/spiritual counselor • Medication for symptom control or pain relief • Medical equipment like wheelchairs or walkers and medical supplies like bandages and catheters • Physical and occupational therapy • Speech-language pathology services • Dietary counseling • Short-term inpatient care (e.g. when adequate pain and symptom management cannot be achieved in the home setting) • Short-term respite care (e.g. temporary relief from caregiving to avoid or address “caregiver burnout”) • Grief and loss counseling for patient and loved ones

CIMA Hospice – El Paso 6600 Montana Avenue, Suite G El Paso, Texas 79925 915-778-1222 www.cimahospice.com


15 15

Hope for the best.

Prepare for the worst. by Robert Warach, Attorney at Law

ne of the toughest topics to discuss with our families is our mortality. But (and excuse the cliché) it is a fact of life. A large part of my legal practice has been in the area of probate law and one of the best gifts you can give your family is to execute the appropriate legal documents that will, if needed, take care of you during your lifetime and additionally make sure your wishes are followed after your death. As a general rule, there are 5 documents that I recommend to my clients when they come in to speak about these issues.

O

Powers of Attorney There are two types of Powers of Attorney…Statutory Durable and Medical. The person who signs the Power of Attorney is known as the Principal.The person authorized to act for the Principal is the Agent. The Statutory Durable Power of Attorney and the Medical Power of Attorney cannot be combined. They must be two separate documents. • Statutory Durable Power of Attorney. Think of this as a business power of attorney. It allows the agent to, among other things, write checks, sign contracts and sell property on behalf of the Principal. A Statutory Durable Power of Attorney can be effective immediately upon signing it or it may not go into effect until you become incapacitated. One of the reasons it is referred to as “durable” is that you are competent when you execute it but it retains its power and remains in effect even after you become incapacitated. • Medical Power of Attorney. This is self explanatory. It allows the agent to make medical decisions for you ONLY if you are incapable of making these decisions for yourself. There are two common misconceptions regarding Powers of Attorney. First, many people think that Statutory Durable Power of Attorney is effective even after the death of the Principal. This is wrong. By law, the authority to act under the Power of Attorney ceases upon the death of the Principal.

Second, you are not giving up any rights by signing Powers of Attorney and naming an Agent. You are simply allowing the Agent to act for you but that doesn’t mean that you cannot still act for yourself as long as you are competent to do so. Directive to Physicians This document is also referred to as a Living Will. This is the document that sets out your philosophy on death. Do you want to be kept alive by every means then available or if a doctor indicates that you are terminal, do you want to be allowed to pass away as comfortably as possible? I deal with people who have both of these philosophies. It is a private decision but once made should be honored by family members. It is very important to discuss your decision with your family so that they understand that you want your wishes honored. Wills are what are referred to as testamentary documents. Wills only become effective after death. In otherwords, no matter what you say in your Will, you retain full ownership and control of your property while you are alive. In fact, as long as your are mentally competent, you can continually change the terms of your Will and upon your death, the terms of your most recent Will control. There are a number of things to consider when writing your Will; probably the most important of which is who is to get your property. The following is a list of the things that you will be discussing with your attorney so that your Will can be properly drafted.

Who is going to receive your property? We do not have forced heirship in Texas. In other words you can leave your property to whomever you please. For example, you don’t have to leave it or a portion of it to a spouse or children. However, you can only give away what you own. Texas is a community property state and consequently, if you and your wife purchased a home together and your Will states that you leave your home to the author of this article, all you are really giving me is a 50% interest in the home because your wife owns the other 50% as her community property. If the children have not yet reached the age of 18 the Will will most likely direct that their share be kept in trust for their benefit until they at least reach the age of 18 since minors cannot own property in their own right. The trustee will be required to manage and invest the property for the children. Individuals become legal adults in the state of Texas upon attaining the age of 18. If the children are under the age of 18 you will have to name a person to serve as guardian of their person. This individual is responsible for caring for the child’s daily needs; making sure the child is in a safe and secure environment and in general do what a natural parent would do. Who will be the estate representative? In Texas, if you have a Will, this person will most likely be referred to as the Independent Executor. This is the person who is responsible to gather the property of the estate; pay all of the obligations of the estate and distribute whatever property is left in accordance with the terms set out in the Will. Probate Procedure What is probate? In very simple terms probate is the procedure that must be followed to have the property owned by the deceased legally distributed to the beneficiaries named in the Will. In a straight forward procedure without complications the probate procedure can take anywhere from 3 weeks to 2 months. There are different types of procedures and your attorney will advise you which one is appropriate for your situation. Texas has an expedited probate procedure and it is relatively inexpensive compared to similar proceedings in other states. Texas allows expedited probates even if there is no Will to probate. Of course you will want to use the procedure that is least expensive and yet appropriate for your particular situation. Your attorney can point you in the right direction. Generally, the estate representative must only appear in court when the Will is being admitted to probate. All other matters can be handled by the attorney.

It is important that readers of this article understand that it is informational only and not to be used for or understood as legal advice. I have simply highlighted some areas that you should discuss with both your family and your attorney before making any decisions regarding the matters set out below.


16

Suggestions for being an effective caregiver The responsibilities of caring for a person with cancer may seem complex and overwhelming at first. Depending on the person's needs, you may provide emotional support; practical assistance, such as help with medical care, financial issues, or insurance issues; or serve as the communicator between the patient and the health care team. The following tips are designed to help you become a successful caregiver: Remember that caregiving is a team effort. A caregiver is a member of an important team that includes family members, friends, other volunteers, and the health care team. Each member of the team brings different skills and strengths to the group and is working towards a common goal—

providing effective care. If you are the primary or lead caregiver, help each team member express concerns, opinions, and emotions, and make sure that the person with cancer has a central role in all discussions and decisions, if possible. It is very important for the person with cancer to have a sense of control and a way to be as proactive as possible. For example, CancerCare provides a special website for caregivers called My Cancer Circle to help caregivers organize the family and friends who want to help the patient or the primary caregiver. Find other online communities for support. Create a list of tasks. Caregiving, like any responsibility, is made up of individual tasks of varying importance. Make a list of all of your caregiving tasks and use it to decide how to divide the tasks between friends, family, hired professionals, and community organization volunteers. Be proactive. Being proactive means taking charge and planning as much as possible to prevent last-minute emergencies. This can also help

provide a sense of control and order. Create schedules that list which relative, friend, or other volunteer is available when and for what tasks. Make sure that all of the caregivers involved have some time to be away without feeling guilty or concerned. Long-distance caregiving takes even more planning. Find out more about how to be an effective long-distance caregiver. Be a problem solver. To be a good problem solver, identify problems, find out what needs to be done, and follow through. Most importantly, do not be afraid to seek advice and help from others. Look for creative solutions that work for your situation. Try to stay positive. Sometimes it’s easier said than done, but having a positive attitude can help set the tone for everything you do. You may not have control of what happens to you, but you can change how you react. Turn to members of the caregiving team, relatives, friends, religious or spiritual advisors, counselors, and health care professionals to help you cope.


17

Know yourself. Recognize your own strengths and limitations as a caregiver. This allows you to set boundaries and know when to ask for help. Setting limits can be beneficial to both the caregiver and the person receiving care; the person with cancer can exercise some independence, while the caregiver gets a needed break. Compassionate caregivers must recognize when they need a break so they don’t become overwhelmed or burned out. Consider professional and volunteer services. These services include professional home care, homedelivered meals, and help with everyday activities. Some community agencies have volunteers who can help with transportation or advocate for health insurance or other benefits. A local hospital or community social worker is a great source for referrals to programs in your community. Caring for the emotional well-being of the person with cancer When caring for a person with cancer, it’s important to help them maintain a sense of control, as a person with cancer may feel that the diagnosis has limited their control over their life. Respecting a person’s independence can be as simple as asking them if you can help them with a specific task or decision instead of doing it on your own. Communicate. One of the caregiver's most important jobs is to communicate openly with the person who has cancer. Choose a time that is convenient for both of you to talk. Provide assurance that he or she will be a central part of all discussions and decisions. Be open to the person’s feelings and opinions and allow enough time to fully explain your feelings. Accept the limitations of a person who is seriously ill. For example, a person who just received chemotherapy may not be able to taste a meal you worked hard to prepare, or a person who is on pain medication may not notice all of

the small things you do. Also, be aware that caregiving tasks may change as the person’s health changes. Include the person with cancer in activities that provide meaning or pleasure. Even if the person with cancer is no longer able to actively participate in activities he or she enjoys, look for other ways to encourage involvement. It is important to help the person stay connected to the world beyond the cancer and to maintain a sense of normalcy. Participating in medical and physical care Gather information about the patient’s diagnosis, treatment, and prognosis (the chance of recovery). As a caregiver, learn more about cancer, including the patient’s type of cancer. Many patient advocacy groups also can provide information related to specific cancers. Ask the doctor about other reliable resources. In addition, you may want to keep a medical journal, which can include the patient’s medical appointments, test results, medications and dosages, symptoms and side effects, new questions between appointments, and names and numbers for resources.

Be an advocate. Take an active role in the patient's medical care. If possible, go with him or her to all medical appointments. It is helpful to write down questions for the doctor beforehand and to write down answers. In addition, give the doctor any new information that helps him or her make informed decisions. Learn how to provide proper physical care. If a person requires physical care— such as bathing, dressing, feeding, using the toilet, and grooming— consider talking with a health care professional, or watching health care videos, or reading manuals or books that explain how to do these tasks. You may also want to hire professional help for these tasks.

Addressing legal and financial issues Ask about being assigned an insurance case manager. Many insurance companies will assign a representative to help manage insurance concerns for a person with a serious illness. This representative can be a resource for determining which benefits are covered, deciding whether arrangements can be made to access out-of-plan benefits for medically necessary care, finding available home care, or troubleshooting insurance problems. Determine financial status. Providing care for a person who is seriously ill can be financially challenging. For services that cannot be provided by family members—such as medical, pharmaceutical, or therapeutic services—determine who will perform these services and how they will be paid. Knowing the financial status of the patient can help guide future health care choices. Some community organizations may provide financial assistance for caregivingrelated and treatment issues. Have legal documents in place. Legal documents called advance directives are an effective, legally binding way to communicate a patient's wishes. More importantly, a health care proxy (a person who can legally make health care decisions on another person’s behalf) can be designated to speak for the patient when he or she is unable to do so. Identifying a health care proxy is an important decision that should be made at an early stage and communicated to the professionals involved in care. Other documents, such as a durable power of attorney for health care and a living will, may also be needed. For more information, please see page 15 of this issue, From: http://www.cancer.net


know in the

18

Mind|Body|Soul

Take Care of Yourself Advice for Caregivers Whether you’re an experienced caregiver or encountering this role for the first time, caring for someone with cancer can be mentally, physically and emotionally taxing. As you enter into this role you should be sure to take your own wellbeing into account and make time to care for yourself as well. One of the first things you should consider is bringing some structure to your day-today activities. Time management and careful planning will not only help to keep your activities in check, it will also help to reduce stress. Recognize that you need to make time for yourself to regenerate, rejuvenate and re-energize. You may not have time to do this every day, but if you plan carefully, you may be able to carve out some “me time” a few days a week. Take this time to run errands, pay bills before they get away from you, attend to chores and care for children and other family members who depend on you. This will help you to remain as stress-free as possible during trying times. Another way to maintain your energy is to eat healthy nutritious meals and exercise whenever possible. Exercise, even light walking and yoga can improve your stamina, mental focus and help you prepare for the many challenges to come. If attending church or religious worship is important to you, then by all means build this into your schedule. Many of these activities require you to step away form your role as a caregiver. However, in order to do this, you’ll first need to develop a small network of friends and family members to help relieve you whenever you need to attend to personal matters. Be careful here, speak with your patient first and be

sure that they are confortable with the arrangements you’ve made. You may also consider doing this on a limited basis so as to maintain stability and a sense of dependability for your patient. And finally, spend time with the people in your life who bring stability to your mental health. Share your experiences with a friend to unwind emotionally. All of these things seem simple enough, but they are all fundamental to your health and wellbeing. You’ll be better prepared to assist your patient and they will thank you for being the best caregiver that you can be. -By Manny Rodriguez

Keep Fit! Caregivers have little spare time for themselves. So when you do get a break, you're probably craving rest, rather than thinking of exercise. Yet, of the two, exercise could be a far better choice. It may prevent you from getting sick, help you sleep better and is almost certain to give you more energy — three things of prime importance to a caregiver. Your well-being can affect the quality of care you provide to your loved one, says Wendy Lustbader, M.S.W., a national lecturer and the coauthor of Taking Care of Aging Family Members: A Practical Guide. "It is better to get a break, if you can, as you're taking care of two lives," she says. Also, research has found that caregivers are more vulnerable to illness and can get sicker if they don't take care of themselves. How Caregivers Can Find Time to Exercise. Going to the health club may be attractive, but it may not be realistic. Here are some other options and a

few steps you can take to get yourself moving: Keep it simple Going to the gym may be attractive, but it may not be realistic if you squander precious time on packing appropriate clothes, traveling to and from the gym, and arranging alternative care for your loved one while you're there. Instead, you can keep exercise as simple as a brisk walk around the block. "I recommend not thinking big. Just take a walk," Lustbader says. "[Caregivers] are often overwhelmed from a busy workday, so just walking as exercise may be the most they can do. It's a great release and way to be alone, recharge, meditate and collect oneself." Don't think of this as "inferior" exercise. Many studies have demonstrated that regular walking is one of the best things you can do to improve physical and mental health. Another option is to use exercise videos at home. Your loved one may be able to sit on the couch and watch you work out, or you can try to schedule your video during nap time or when he or she is otherwise occupied. You can always stop a video quickly if your loved one needs your immediate attention. Exercise recommendations are much the same for anyone. Your goal should be 30 to 40 minutes of moderately intense exercise at least three times a week. Ideally, you'll want to exercise continuously for 30 minutes or more. (Some research says this gives you the maximum benefit). However, taking that much time off may not be an option unless you have backup help. It's OK to get your exercise "here and there" throughout the day.


Research shows that even little bursts of activity are beneficial. Park the car farther away from the grocery store to get some extra steps in, or take the stairs instead of the elevator. Build up to more time as you begin to see and feel the benefits of exercise. Challenge yourself for a good workout Your exercise goals may include losing weight or toning certain body parts. Or you may be seeking to release stress and regain energy, stamina and strength. Try to get the most from the time you exercise. When you take a walk you should move briskly, to get your heart rate elevated. You should feel that you've exerted yourself a bit. Working up a sweat is one way to tell that you are getting a good workout. Another clue is to listen to your breathing. — it should become shorter, but you should be able to hold a conversation. If you can't have a conversation (even with yourself), slow down. And, remember, check with a health professional before beginning any exercise program. Pick a destination, and time yourself to get there. Change the destination and path frequently to prevent boredom and to challenge your body. Write down your goals and stick to them. Using an electronic or a manual pace counter can help you track your progress and stay motivated. Competing against yourself (or against a friend) can make exercise a fun and interesting challenge. Don't forget strength training On days when you can't walk outside or visit the fitness center, make time for strength training. Caregivers responsible for lifting loved ones in and out of bed or chairs require a strong core. Your core is the area around your trunk and pelvis and is where your center of gravity is located. -This story was previously published by Johnson & Johnson

If done right, exercise can help reduce stress, increase energy, and make you a better caregiver. The Importance Of Exercise For You No one is too out-of-shape, too tired, or too busy to benefit from a regular exercise program. We often hear about the benefits: “ Lose weight! Feel good! Sleep better! Prevent osteoporosis! Prevent heart disease! Reduce stress!” —and they’re all true. If you have excuses, “I’ve never exercised before,” “My knees and feet hurt too much,” or “I don’t have time,” do yourself a favor. In as little as 10 minutes a day, and as few as three days a week, the right exercise will help you feel better, sleep better, reduce stress, and enjoy life more. Some General Guidelines When You Exercise • Set aside a specific time every day for exercise. • Be consistent. To get benefits from any exercise program, do it regularly. • Warm up and cool down; stretch both before and after you exercise. • Start with as little as 10 minutes of exercise a day and increase gradually to 30 minutes for maximum benefits. • Use the talk/sing test. To find out if you’re exercising hard enough or not enough, use this simple check. If you can’t talk and exercise at the same time, you’re working too hard. If you can sing and exercise, you’re not working hard enough.

• Always ease into an activity for the first five minutes, and slow down the pace for the last five minutes instead of stopping suddenly. Exercise Ideas • Take a daily walk. Find a friend to walk with. You will encourage each other when you’re tempted to take a day off. • Try an exercise video. Look for videos for beginners. Avoid starting with programs that include jumping and twisting. Instead, try videos for stretching, muscle toning, or relaxation. A note of caution: Always check with your doctor before starting any exercise program. • Check out exercise classes offered through community centers, gyms and senior centers. Look into yoga, tai chi or other non-traditional exercise programs. They are a great way to improve flexibility, muscle tone and relaxation. Call your community swimming pools about adult swim times or water exercise classes. Many pools offer classes just for seniors or others who want a slower pace. • Dance your way to better health. Square dancing, ballroom or folk dancing are excellent ways to increase your endurance and improve your balance. If you think you need help to find the right exercise program, ask your doctor for advice. Originally written and published by the Aging and Adult Services Administration Department of Social and Health Services, State of Washington. Reprinted with permission.


know in the

20

Healthy Habits | eat, live and be well

Nutrition: Planning ahead eases mealtime challenges By Sallie Damron

Taking advice on nutrition can seem the very least of one's concerns after receiving a cancer diagnosis but it is actually the best way to feel better before, during, and after treatment. Supplying the body with the nutrients it needs before treatment helps reserve the strength needed to fight the illness. According to the American Cancer Society, eating well during treatment also helps patients tolerate chemotherapy, radiation therapy, surgery or biotherapy and their side effects. A healthy diet can also decreases the risk of infection and help maintain a healthy immune system, both of which aid in the healing process during and after treatment. The advice is simple. Make nutritious choices and plan ahead whenever possible. Preparation is the best way to ensure healthy eating in any stage. If you aren't already experienced at meal planning consider the basics: selecting your meals; grocery shopping; and preparing your meals. This can be a lot

to manage so talk to your friends or family members about ways they can help you with these tasks. Avoid the easy route of picking up frozen meals which are typically chalk full of preservatives and sodium and do not provide enough fruits and vegetables to meet your daily nutritional needs. Think fresh produce, lean proteins, whole grains and good-for-you fats. To plan your meals start with a weekly calendar that will include three to four meals for each day. Keep breakfast simple by choosing items like cereal with milk, eggs with whole grain toast, or yogurt and fresh fruit. For lunch and dinner choose a few quick and easy recipes that can be made in advance and frozen in individual meal-sized portions (i.e. pasta, casserole, soup, etc.). This will limit the amount of time you or your caregiver spend in the kitchen on a daily basis. It is also a good idea to choose foods that you know you can eat when you are sick, just make healthy choices and avoid sugary or salty foods. Add a variety snacks, particularly for doctor's visits or treatment. Snacks that travel well and are good for you include fruit and veggies (such as berries, bananas, and apples, carrots, celery, snap peas, and cherry tomatoes) and prepackaged items like string cheese, whole grain crackers, popcorn, and pretzels. When selecting your meals consider

the potential side effects of treatment. Foods may not taste or smell the same to you as they did before treatment; use this as an opportunity to try new foods, particularly those you have not liked in the past. Eating in general may be more challenging once you're in treatment. Smoothies, shakes, juices and soups should help with mouth sores and tenderness and difficulty swallowing. Stay away from high-fat foods --anything fried or greasy will be more difficult to digest. Stuck for lunch or dinner ideas? Leaf through cookbooks or search for quick and healthy recipes online. If you want immediate ideas look no further than our recipes. The Savory Turkey and Veggie casserole is great fresh or frozen and reheated. It is made with brown rice which means it is full of whole grain goodness. The Super Immunity-Boosting Broth is exactly as its name indicates--full of vitamins and minerals that will boost your immunity. It can be added as a side to any main dish and it is also perfect as a meal when eating is difficult. The Berry Coconut Smoothie is a quick and nutritious breakfast or snack. It takes only five minutes and allows for substitutes such as a mix of berries or other frozen fruit like mango or banana. The rolled oats can also be replaced with two tablespoons of flax seed or protein powder. Create your grocery list based on your meal plan and, once your shopping is complete, consider preparing the majority of your main dishes on one day so your meals only need to be reheated throughout the week. If you are not normally responsible for the shopping and cooking you can still share your intention to eat more nutritiously with those who cook for you. Don't be too hard on yourself if side effects make it impossible to follow your meal plan. Consider eating small, frequent meals or snacks. The important thing is you'll have healthy foods on hand and will eat nutritiously when you can. If you are still uncertain about how to effectively plan your meals ask your health care team. They may be able to provide an eating plan that takes into account your diagnosis, treatment plan, and any side effects. They are the most familiar with your immune status and overall nutritional needs so do not hesitate to ask for their advice.


21

Easy recipes for Cancer Patients & their caregivers High Protien

Savory Turkey & Veggie Casserole Makes 8 Servings

Ingredients 1 1/2 cups cooked brown rice nonstick spray 4 tsp. olive oil, divided 1 lb. brown mushrooms, washed and cut into thick slices 1 medium onion, chopped into 1/2 inch pieces 1 green pepper, seeds removed and chopped into 1/2 inch pieces 1 tsp. Greek seasoning 1 tsp. Greek oregano 1 1/2 lb. ground turkey salt and fresh-ground black pepper to taste 2/3 cup low-fat sour cream 1/3 cup chicken stock 3/4 cup crumbled Feta 8 oz. grated reduced fat Mozzarella, divided 3/4 cup and 1 1/4 cup Instructions Cook rice according to package directions. Preheat oven to 375F. Spray a casserole dish with nonstick spray. SautĂŠ mushrooms for 5 minutes over medium-high heat in a large nonstick frying pan with 2 teaspoons of olive oil. Place mushrooms in a large bowl to cool. Heat one teaspoon of olive oil in the same frying pan, add the chopped onion and green pepper, and cook over mediumhigh heat until slightly brown. Add the Greek seasoning and Greek oregano and cook about 1 minute more. Add the vegetables to the cooling mushrooms. Heat one teaspoon of olive oil in the same frying pan, add the ground turkey, and cook over medium-high heat for 10 minutes (until brown and all water has evaporated). Season the turkey with a pinch of salt and fresh-ground black pepper and break apart as it cooks. Add turkey to bowl of vegetables and stir in the brown rice.

In a separate bowl mix together the sour cream, chicken stock, crumbled Feta, and 3/4 cup of the reduced-fat Mozzarella. Gently mix this into the turkey, rice, and veggie mixture. Put the combined ingredients into the prepared casserole dish and spread slightly until flat. Top with 1 1/4 cups Mozzarella and cover with foil or lid of casserole dish. Bake covered for 20 minutes, then remove foil or lid and bake another 20 minutes until the top is nicely browned and the whole casserole is bubbling. Serve hot or let cool and freeze in individual serving sizes. This also keeps for several days in the refrigerator. Reheat in the oven or microwave. High Comfort

Super ImmunityBoosting Broth

Instructions Rinse all vegetables well (including the kombu) and place in a 12-quart or larger stock pot. Fill the pot with 8 quarts of water, cover and bring to a boil. Remove the lid, decrease the heat to low and simmer, uncovered, for 2 to 4 hours, adding more water if the vegetables begin to peek out. A longer simmer will increase the broth’s taste and nutrient density. Once the full richness of the vegetables can be tasted, strain the broth through a large, course-mesh sieve into heat-resistant container. Serve hot with a squeeze of lemon juice and 1/8 teaspoon sea salt per cup. Let cool to room temperature before refrigerating or freezing. The broth will keep for 5 to 7 days if refrigerated in an airtight container or in the freezer for 4 months. High Taste

Berry Coconut Smoothie Makes 1 Serving

Ingredients 1 fennel bulb, plus tops 2 unpeeled yellow onions, cut into quarters 6 unpeeled carrots, cut into thirds 1 leek, white and green parts, cut into thirds 1 bunch celery, including the heart, cut into thirds 2 unpeeled sweet potatoes, washed and cut into chunks 1 garnet yam, washed and cut into chunks 1 large bunch fresh, flat-leaf parsley 6 sprigs fresh thyme 12 large cloves unpeeled garlic, cloves smashed 3 inches unpeeled ginger, cut in half, lengthwise 1 8-inch strip of kombu (kelp, also known konbu, dashima or haidai) 12 black peppercorns 4 juniper berries or allspice berries 2 bay leaves 8 quarts cold, filtered water 1 lemon Sea salt

Ingredients 2 cups frozen berries (strawberries, blueberries, or raspberries work best) 1/2 cup plain low fat yogurt 1/2 cup shredded, unsweetened coconut 2 Tbsp rolled oats Pinch of ground cinnamon Instructions Place frozen berries, yogurt, coconut, rolled oats and cinnamon into a blender. Blend until smooth. Enjoy!


22

SPEC IA L FR REE PRE VIE W E VE NT IAL FREE PREVIEW EVENT

NA ATIONALL TIONALL LL LY BY SPONSORED NATIONALLY BY::

M arch h 18th, 1 8th, 6:30 pm m March at at Basset Basset Premiere Pre miere Cinemas C in e mas Rese er ve your sea t: Reserve seatt a at: kc ostv.org/ canc er kcostv.org/cancer SPO ONSORED LOCALL LY Y BY SPONSORED LOCALLY BY::

CanCer: The emperor of all maladies Cancer is built into us: the genes that unmoor normal cell division are not foreign to our bodies but rather mutated, distorted versions of the very genes that allow us to grow, to adapt, to recover, to repair—to live. Malignant growth and normal growth are so genetically intertwined that unbraiding the two is one of the most significant scientific challenges faced by our species. If we seek immortality, then so, too, in a rather perverse sense, does the cancer cell. - Siddhartha Mukherjee it is one of the longest running wars in human history. fought with razor-sharp scalpels, invisible rays, and lethal poisons, its battlegrounds are deep within the human cell. its casualties number in the hundreds of millions – nearly one in two men, and one in three women will fight cancer directly; nearly all of us will feel its collateral damage. The story of the war on cancer spans centuries and continents. it is a scientific story, but also a deeply human one: of doctors, researchers, and especially patients who -- through courage, suffering, and occasional hubris -- pushed the boundaries of knowledge. These

people helped define cancer as the scourge of the modern age, and then mobilized the federal government and private industry to wage an all-out campaign against it -- a campaign we are still fighting. Cancer: The Emperor of All Maladies, based on the pulitzer prize-winning book by siddhartha mukherjee, tells the complete story of cancer, from its first description in an ancient egyptian scroll to the gleaming laboratories of modern research institutions. at six hours, the film interweaves a sweeping historical narrative; with intimate stories about contemporary patients; and an

investigation into the latest scientific breakthroughs that may have brought us, at long last, to the brink of lasting cures. Cancer: The Emperor of All Maladies is directed by Barak Goodman and executive produced by Ken Burns, who is also the senior creative consultant. The film is written by Geoffrey Ward. Ken Burns, Barak Goodman and david Blistein. executive producers are Burns, dalton delan, david Thompson, and pamela Williams.

Tune in March 30, 31 and April at 8PM on KCOS


2015 PREMIERE EDITION

COLORS OF CANCER COOKBOOK The Rio Grande Cancer Foundation invites you to grab a spoon and get cooking in our first edition of the Colors of Cancer Cookbook. Each dish tells a story and we want to share yours. In this special collection of recipes we honor those who have touched our hearts and taste buds. Do you have a special recipe that brings back warm memories? Submit it to the Rio Grande Cancer Foundation for consideration! Here’s how: Entries can be submitted by mail, e-mail or by visiting our website or facebook page. Please include your name, contact information, the person you are honoring and their story. All recipes should include a list of ingredients and preparation instructions as well as the number of people the recipe serves.

10460 Vista Del Sol Dr #101, El Paso, TX 79925 (915) 562-7660

www.rgcf.org


Rio Grande Cancer Foundation 10460 Vista del Sol Suite 101 El Paso, TX 79925

NON PROFIT ORG U.S. POSTAGE PAID EL PASO, TX PERMIT N0 173

Get ‘In The Know’ delivered to your in-box instead of your mailbox

Help RGCF save valuable time and resources As you already know and have experienced for yourself, our magazine, “In The Know: Understanding the Cancer Experience” is a real treasure of insight and inspiration. One of our biggest charges here at the Rio Grande Cancer Foundation is to be FISCALLY prudent so we can continue granting dollars to not-for-profits and to sustain our own programs. Another is to be SOCIALLY responsible to our community and resources. To that end we are now offering two ways for our readers to get In The Know and stay in the know. We will offer a digital version of our magazine to be a little more earth friendly and to cut down on printing costs!

So for those of you who are computer savvy, you will now be able to receive your copy of “In The Know: Understanding the Cancer Experience” at your desktop, smart phone or tablet. We DO realize that there are still those readers that like to hunker down in the tub or outside under a tree reading our informative and enlightening articles so for you, we will continue to deliver a paper version of our magazine to your door. All you have to do is to pick how you want to….GET IN THE KNOW!

To receive your free online subscription of ‘In the Know’ and help the Rio Grande Cancer Foundation simply submit your e-mail address to: cmartinez@rgcf.org


Turn static files into dynamic content formats.

Create a flipbook
Issuu converts static files into: digital portfolios, online yearbooks, online catalogs, digital photo albums and more. Sign up and create your flipbook.