knowin theIssue 33

complimentarymagazine

understanding the cancer experience

CAREGIVINGPractical advice aboutcaring for a loved one

with cancer

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THIS ISSUE:INThe 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 Tiscareo,

Executive Director

F E A T U R E S

Its 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.

Caregiving 101 Hope for the best...Mealtime can be a challenge for

patient and caregiver alike. Here

our experts serve up some ideas

that are easy to digest.

The kitchen is open

BOARD OF DIRECTORSGordon 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 DIRECTORPatricia Tiscareo

PROGRAM COORDINATOR

Cindi Martinez

ADMINISTRATIVE ASSISTANTS

Maggie Rodriguez

Rachel Juarez

is published by the

Rio Grande Cancer

Foundation10460 Vista del Sol, Suite 101

El Paso, TX 79925

(915) 562-7660

fax (915) 562-7841

www.rgcf.org

knowin the

by

Snappy Publishingted@snappypublishing.com

El Paso, Texas 79912

(915) 820-2800

Caregiving and Cancer

155 20

YEARS

MORE THAN

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

HOW TEXANS FIGHT CANCER.

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 GATEWAY7848 Gateway EastEl Paso, TX 79915915-599-1313

EL PASO CANCER TREATMENT CENTER GRANDVIEW1901 Grandview AvenueEl Paso, TX 79902915-544-6750

EL PASO CANCER TREATMENT CENTER JOE BATTLE3270 Joe Battle Boulevard, Suite 312El Paso, TX 79938915-849-2700

When youre treated at Texas Oncology, you can be sure youre 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.

F I G H TCANCER

MORE THAN

YEARS

5

N

R

G

J

O

KNOW MORE>

101CGCAREGIVING 101

From diagnosis to treatment and through recovery the role of the caregiver evolves astheir patients needs change. Upon diagnosis, the caregiver will offer emotional andtangible support. During treatment, the caregiver becomes more engaged and shouldbe prepared to assist the patient more directly. After treatment, as the patient beginsto approach life beyond cancer, the caregivers role changes yet again.

By Manny Rodriguez

66

Perhaps the most importantthing that one should considerin caregiving is to understandthat cancer presents in manyforms, and thus one shouldseek to understand thediagnosis and proposedtreatment plan that the patientwill eventually undertake.Seeking knowledge and doingas much as you can to learnabout the type of cancer thatyou will be facing together withyour patient will help you inunderstanding how best tosupport and provide care forthem.

No one can ever be quite readyto accept a cancer diagnosis.This goes for the person beingdiagnosed as well as theirfriends and family membersthe people who will eventuallybecome their caregivers. Thismeans you will need to becomequickly acquainted with thetechnical aspects of how thecancer will affect their lifestyle.This is where you must prepareemotionally and become thecrutch that your patient will relyon going forward. For manycancer patients the initialresponse upon diagnosis isconfusion and a sense of beinglost, not knowing where tobegin. This is when you as acaregiver should be preparedto take your patient by the handand walk them through theirdiagnosis, preparing for thechallenges that lie ahead.

In this initial phase it isextremely important tounderstand the mindset andemotional state of your patient.There is a wide range ofemotions that your patient willbe experiencing - from angerand denial to acceptance and

exhaustion - and you will bethere every step of the way.Therefore, you should work tosharpen your emotionalintelligence to help managethis.

Oftentimes patients just needsomebody to listen to them asthey express themselves. Thecaregiver can take this as anopportunity to guide themthrough their emotions. Havingan open and honestconversation provides some ofthe best support that anybodycould ever offer. Just beingthere and helping create an airof normalcy can also be a formof emotional support. This issomething that can be doneday-to-day. You may alsoconsider planning this out byscheduling outings (if possible)to help them to break awayfrom their routine.

During the treatment phaseyour support will becomepractical and more tangiblethan ever. This is where youcan help to support yourpatient by organizing trips tothe doctor and buyinggroceries, or helping sort outmedications and keep them ontrack to recovery. This iswhere you should considerdeveloping a support networkof your own, because yousimply cannot be in all placesat all times. Draw on closefriends and family members toassist in anyway that they can.Maybe you can take turnsassisting your patient todoctors appointments andrunning errands.Youll need your rest and it'llhelp you keep your own lifetogether, too.

Treatments for cancer varywidely from radiationtherapy, chemotherapy andsurgery - and each can havevastly different side effects. Itis vitally important that youbecome familiar with andunderstand them as you helpyour patient go throughtreatment. You may alsoconsider consulting a nursenavigator to guide you withinthe healthcare system. Athome, you will become thenavigator helping your patientto stay strong in mind, bodyand spirit as the treatmentsrun their course.

During recovery you will bethere to help your patientcelebrate their achievementsas they face the prospect ofliving cancer free. Oftentimes,patients need help to see theincredible strides that theyvemade in their battle againstcancer or how theyveovercome so many obstacleson their road to recovery. Thisis when you can bring this tolight and celebrate theirstrength and resolve. You mayeven want to encourage themto participate in events thatbring people together, such asraces, walks and gatherings tohelp them break free of thefear and uncertainty thattheyve been experiencing. Liftthem up, praise them for thechampions that they are andhelp them to begin building afuture filled with newpossibilities.

101CGCAREGIVING 101

Who arecaregivers, andwhat do they do?

Caregivers are usuallyunpaid loved ones whogive the person withcancer physical and emotional care.Caregivers may bepartners, familymembers, or closefriends. Most often, theyare not trained for thecaregiver job. Manytimes, they are thelifeline of the person withcancer.

Here are a few wayscaregivers can help:

Shopping for andpreparing food

Encourage eating -even when they dontfeel like it

Organizing anddispensing medications

Bathing and grooming Housekeeping andlaundry

Paying bills Emotional support Get to and fromdoctors appointments,tests, and treatments

Manage medicalproblems at home

Coordinate cancer care Decide when to consulta doctor for newproblems

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

husbands 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

7Rosa 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.

Sergios 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 husbands many illnesses. Physically, I will

never be able to dance again but I can lecture, inspire, energize

and motivate others with my bag of Rosas 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 husbands

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 Im, 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.

101CGCAREGIVING 101

One way to keepeveryone informed isto have familymeetings.

When planning a familymeeting, its important toinclude everyone who is orwill be part of the homecaregiving team. This couldinclude a family friend,neighbor, or paid caregiver and dont forget thepatient! If its hard to geteveryone together, aconference call or speakerphone might help solve theproblem. Some of thethings that you may want todiscuss:

The latest report from thedoctor: How things aregoing and what to expectnext.

Feelings and concerns

What the person withcancer wants and needs

How much time eachfamily member has to helpout or visit.

Ways each person canhelp or arrange help, i.e.cleaning, laundry, yardwork, child care, etc.

How to get breaks fromcaregiving from time totime

Try to get everyone to focuson the issues at hand. Youmight even want to write upa list of issues or questionsand have everyone look atit and add their own.

8

Youll need to be able to talkto the patient, the medical team,friends, family, and even peopleyou barely know who areconcerned about the patient.This can be hard to do. Andwhen you need information fromthe medical team, it may not bepossible to get it without signedpermission from the patient.

A few tips to help youcommunicate clearly:

Respect your own feelings,needs, and desires, as well asthose of the patient.

Speak out about your feelingswhile being sensitive to thoseof others.

Try to use I statementsrather than you statements.For instance, say, I need abreak instead of You neverhelp me! Beware ofstatements like, I feel youignored me, which says to theother person that he or she didsomething wrong. Instead, tryI didnt hear you answer whenI mentioned ______, or Ineed help with this problem.

Focus on the present ratherthan bringing up old patternsor hurts.

How do I talk to the patient?Start with the patient. Let

them know you want to be therefor them and want and need tobe included in their care. Trysomething like:This is a scary time for both

of us, but I want to be here foryou to help you get through this.Youre not alone.Ill do whatever I can to help

you through this. I might do the

wrong thing sometimes, or notknow what to do, but Ill do mybest.We can do this together.

Lets try to be open with eachother and work with each otherno matter what happens.Its good to set a goal of

openness and sharing right fromthe start. Remind each otherthat youre on the same team.Share your fears and worries.Sometimes it may be hard andyoull disagree and maybe evenfight, but openness will help youdeal with the conflict. It will alsohelp you keep supporting eachother and reduce distress andanxiety. Acceptance and sharingwill help keep your relationshipstrong.

How do I talk with the medicalteam?

First, get the patientsconsent.The caregiver is often the link

between the patient and themedical team. In general, themedical team can shareinformation with you anytimeyou are with the patient. Butthere are laws that protectprivate health information.These laws affect what medicalinformation your loved oneshealth care team can talk to youabout when the patient isntpresent. Still, there are waysyou can get information onbehalf of the person withcancer. The simplest and mostcommon way is for the patientto sign a release form that letsthe doctor discuss their carewith you.Talk to the doctor about what

steps need to be taken so thatthe health care team can talk toyou about the patients care.

Then be sure theres a copy ofthe form in the patients recordsand keep the release form up todate. Its also a good idea tokeep a back-up copy for yourfiles. When you call the doctorsoffice, you may need to remindthem that they have the formand they can discuss thepatients care with you.If you dont have a form like

this completed yet, you probablywont be able to get certainkinds of information. But youcan still share information withthe doctor. You can tell theoffice staff that you are givinginformation rather than askingfor it. Even without the patientsconsent, you can try asking forgeneral information aboutproblems the patient has; forexample, Is vomiting one of theside effects of thechemotherapy that Joe got thisweek? Or you can ask foradvice; for instance, If Joe hasbeen vomiting for 2 days,should we come in to see you?Even though you may not getdetails of Joes care, you maybe able to get some help indeciding what to do next.Keep in mind that there are

different forms that are signedfor different purposes. Here weare talking about a release formthat allows the doctor to sharemedical information with you.Doctors offices may call this aHIPAA form. This type ofrelease does not give youpermission to make decisionsabout the patients care.

Which doctor do I talk to?Cancer treatment often

involves more than one doctor.There may even be a team ofdoctors, nurses, and otherpeople taking care of your loved

COMMUNICATION

9

one. You might get informationfrom many of these people, butits a good idea to pick onedoctor to be the one you go towith questions. Most peoplechoose the doctor they seemost often. In choosing a doctoras your main contact, somethings you may want to ask are:

Will you be the one tocoordinate care?Will you keep the otherdoctors updated on whatsgoing on?The person with cancer

should feel at ease with thedoctor, and you should too. Butsometimes, it takes a little timeand work before this happens.Take the time to ask yourquestions and make yourconcerns known. The doctorshould also take the time toanswer your questions andlisten to your concerns. If you,the patient, and the doctor feelthe same way about sharinginformation and making choices,youll probably have a goodrelationship and you can getwhat you need.Most health experts who work

in the field of cancer do sobecause they care about theneeds of people with cancer.When you look back on thisexperience, some of yourstrongest memories may be ofthose health care providers whowere with you through a reallyhard time.

Should I go to doctor visitswith the patient?Going to see the doctor with

the patient is a good way tolearn more about his or hermedical condition. This can bevery helpful when caring for thepatient later on. It can also help

the patient who forgets tomention problems to the doctorand/or comes home without theinformation you need. Andfinally, if you need a referral,maybe for a specialist, socialworker, or medical supplier, youmay be able to get the namesof people who can help.

How do I use time with thedoctor well?The average doctors

appointment is about 10 to 15minutes or even less, so it helpsto be ready for each visit. Youand the patient should figure outthe most important things youneed to talk about before yougo. For instance:

What symptoms do you needto tell the cancer team about?When did these symptomsstart?Making a list ahead of time to

take with you will help you touse your time in the office well.And it means you wont forgetanything important.Dont leave the office until the

doctor answers all yourquestions and you bothunderstand what to do next.Nurses can also be greatsources of information, and youmight get to spend more timewith them than the doctor. Takenotes on whats said to you.This will help you keep track ofwhat you should remember. Ifyoure getting back test results,be sure you understand theresults before you leave. Ifblood work or other tests weredone, find out when and howyoull get the results. Also, askwho will tell you what the resultsmean.

Source: www.cancer.org

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

Good medication managementincludes asking lots ofquestions. Here are some thatmany family caregivers maywant to ask:

For New MedicationsWhat is the name of thismedication?

Why does your family memberneed to take it?

What time each day should yourfamily member take thismedication?

Can this medication be takenwith food? If it is to be taken onan empty stomach, howmany hours before or aftermeals?

Are there any foods, drinks, oractivities(such as driving) toavoid when taking thismedication?

If the medication is prescribedas needed,how do I knowwhen to give it?

Should I expect any problemssuch as side effects or allergicreactions? What do I watchfor?

What should I do if the patienthas any of these problems?

Is this prescription for the brandname or generic form of thismedication?

If a generic version is available,can my family member takethat?

How much does this medicationcost? Does my pharmacyhave it? Will insurancepay for it? If not, how else can Iget this medication?

For Medications Your Familyis Taking NowWhat should I do if my familymember misses a medicationdose? Should the next dose bedoubled or should I give theusual dose?

What if the patient takes toomuch or too little of thismedication?

When should the patient stoptaking this medication?

www.nextstepincare.org2010United Hospital Fund

Questions to Ask about MedicationManagement

101CGCAREGIVING 101

Tips to ManageCaregiver StressYou can ease your stresswith a few simpletechniques that don't take alot of time. Try thesemethods to ratchet downthe tension.

Two-minute relaxation.Switch your thoughts toyourself and yourbreathing. Take a fewdeep breaths and exhaleslowly.

Then do a mental scan ofyour body to find whichareas feel tense orcramped. Quickly loosenup these areas. Let go ofas much tension as youcan.

Rotate your head in asmooth, circular motiononce or twice. (Stop anymovements that causepain.) Roll your shouldersforward and backwardseveral times. Let all ofyour muscles completelyrelax. Recall a pleasantthought for a fewseconds. Take anotherdeep breath and exhaleslowly. You should feelrelaxed.

Mind relaxation Close your eyes. Breathenormally through yournose. As you exhale,silently say to yourself theword "one," a short wordsuch as "peaceful," or ashort phrase such as "Ifeel quiet."

Continue for 10 minutes.If your mind wanders,gently remind yourself tothink about your breathingand your chosen word orphrase. Let your breathingbecome slow and steady

Making health decisionsThe health care team will

always discuss major healthdecisions with a patient if thepatient can think clearly andshare their thoughts. And thepatients decisions about theirown health will be followedwhen their decisions do notcreate safety issues.Sometimes, what the patient

wants is not what others want orwill do for them. When patientsneed help carrying out theirwishes, it can be hard on thosewho want something differentfrom what the patient wants.

What if we cant agree onsomething important?Its good to know that you and

the patient dont always have toagree. Some of the decisionsand problems that come with acancer diagnosis can be verytough and very emotional.Remember to let the personwith cancer make decisionsabout his or her care wheneverpossible. There are some thingsyou can do to help them makethe best choice.Explain your needs and wants

clearly and let the patient to dothe same. As an example, youmay need to do this whendeciding whether to give certaintreatments, such as IVantibiotics, at home or in aninfusion center. The patient maywant to do this at home, but willneed your help. You might needto say This is too scary for me.I dont think I can do this athome, but I can make sureyoure at the clinic every day. Offer choices or a time limit

when decisions need to bemade. A change in medicines isa good example. Lets try this

sleeping pill for a few nights andsee if it helps you get somerest. If not, well talk to Dr. Smithabout trying something else.Focus your energy and

influence on the issues that areimportant. Let the patient makeas many choices as possible.For example, arguing over whatclothes to wear probably isntthe best use of anyonesenergy. But not takingmedicines or not followingactivity restrictions may beissues that you cant ignore. Ifreasoning with the patientdoesnt work, explain that youwill talk to the medical team andget their help then do it.Again, open communication

with the person you are caringfor is the most important part ofyour role. Speak up for thepatient and his or her needs.Help the patient get neededinformation. Get input fromother team members, then offeryour support andencouragement.

When do I call the doctor?Sometimes its hard to know if

something is bad enough tocall the doctor after hours or inthe middle of the night. The bestway to know when to call is toask. Ask the doctor or nursewhat problems you should callabout right away, no matterwhat time it is. This may be afever or new pain, or someother problem. You can also askwhat can wait until the next dayor the next appointment.Also be sure you know whom

to call after hours, onweekends, and on holidays. Ifyou do not have 24-hour accessto someone on the medicalteam, find out what you should

do if there are problems. Shouldyou call your pharmacist if thereare problems with themedicines? Should you go tothe ER? It often seems likeproblems come up when thedoctors office is closed, so besure you have an emergencyplan in place.You can find more details on

dealing with symptoms andwhen to call the doctor in thebooklet, Caring for the CancerPatient at Home: A Guide forPatients and Families availableat the Rio Grande CancerFoundation.

How do I know what thepatient wants?Everyday choices are easier

to make if you understand thepatients preferences, habits,and values. Whats mostimportant in the patients life?Everyday choices includedeciding what to wear, when tobathe or eat, and what else todo after that. But when youredealing with cancer even thesesimple choices can beoverwhelming and hard tomake. Sometimes a small crisiscan make the patient unable toexpress what she or he wantsor needs. As much as possible,honor the patients wishes, butbe realistic about the limits onwhat you and other caregiverscan do, as discussed above.

What if the patient wont dothings for himself or herself?This can be frustrating for a

caregiver. You feel sure that thepatient can do some things forthemselves, but you do all ofthem because the patient wont.Sometimes there are medical oremotional causes for the

DECISION MAKING

10

problem, such as severe tiredness (fatigue)or clinical depression. If youre not sure, getthe patient to the doctor and state theproblem clearly. The medical team can helpyou figure out what may be going on.

Its not always needed and may seemhard to do, but sometimes you mighthave to set limits.

Try to figure out what self-care tasks thepatient can safely do, such as bathing,dressing, and going to the bathroom. If youdont know what the patient can do, get themedical team to evaluate the patient. Socialworkers and occupational healthprofessionals may be able to help with this.

Encourage the patient to do self-care asmuch as possible.Encourage the patient to talk about things

they enjoy so the conversation isnt alwaysabout cancer and illness.Let the patient make as many personal

choices as they can. If they areoverwhelmed with decisions, give themsimpler choices by saying, Would youprefer chicken or fish for dinner? or Wouldyou rather wear your blue pants or thebrown ones?Get others involved if the patient is

avoiding treatments or doing things that cancause harm. Family members can be astrong source of influence. Rally them forsupport.

Once a decision is made, accept it andmove on. And if you disagree with thedecision that was made about the patientstreatment, remember that its the patientsdecision to make. Congratulate them forbeing able to make a decision.Remember that professional help is

available to you. Its normal to feelfrustrated, upset, and stressed when caringfor someone with cancer. Use the resourcesand services of the health care team whenyou need them. They can help you find thesupport you need, such as mental healthcounselors, home care services, or financialassistance, so that both you and the patientcan have the help you need.

Does the patient need to be moved orrelocated?

Open and honest discussion with thepatient and other family members is the firststep in deciding whether the patient needsto live somewhere else for a time. Cancerand its treatment can cause confusion andforgetfulness, and may worsen thesymptoms of other conditions such asdementia. Patients can endangerthemselves by forgetting medicines, noteating, leaving the house, or losing trackwhile cooking. Patients can be a danger tothemselves and others if they start to hit,bite, or throw things at caregivers or familymembers. Homes are rarely set up to dealwith these kinds of problems. In such cases,the cancer care team needs to know aboutthese behaviors. The patient may need to behospitalized, if whatever is causing theproblem can be treated.For less severe problems, such as mild

forgetfulness, unsteady walking, andoccasional minor confusion, there may beother options. Again, tell the cancer careteam about these problems to find out ifthere is a medical reason for them and iftreatment is needed.Sometimes the less severe problems can

be managed at home if someone can staywith the patient at all times. But theseproblems deserve special discussion by thefamily. Otherwise, other family membersmight assume that the caregiver will be theone to stay home and provide 24-hour carefor the patient.

Family meetings with the patient, spouse,children, siblings, and other key people canallow everyone to share their thoughts andcan help you decide what to do. Sometimesthese talks can be very difficult andemotional, but certain topics will need to becovered.What amount or type of care is needed.

For instance, does the patient need 24-hoursupervision? What can she or he safely dowithout help?What other living arrangements are

available? Can the patient move in withanother family member? An apartmentcloser to the primary caregiver? A smallerhouse? An independent retirementcommunity?This discussion can be tricky if the patient

gets confused or fearful at times. It helps tohave the doctors or occupational therapists(OT) assessment of the patients needs. Forexample, if their professional opinion is thatthe patient cannot be alone at all, and theonly caregiver has to work full-time to makethe house payment, something else must bedone. An occupational therapistsassessment can also tell you if the patientcan be kept safely in the home if certainmodifications are made. Ask your doctorabout a referral to an OT. This may beeasier if the patient is in a hospital orextended care facility. Ask the doctor ornurse about getting an OT evaluation beforethe patient leaves.

KNOW MORE>

Give people enough guidance to make the decisions you want them tomake. Don't tell them what to do, but encourage them to do what isbest.

- Jimmy Johnson Read more at www.brainyquote.com

11

My caregiver mantra is to remember:

the only control you have is over the

changes you choose to make.

-Nancy L. Kriseman,

The Mindful Caregiver:

Finding Ease in the Caregiving Journey

101CGCAREGIVING 101

Is a nursing home orextended care anoption?

There may come a timewhen your loved one needsextended care or nursinghome care. Even thoughyou might not be with theperson all day, youll stillfind that you are acaregiver. It just may lookdifferent, since you are nolonger providing all of thehands-on care. But you willstill be talking with the staffat the facility, visiting thepatient, and staying intouch with those who areproviding care.Youll also be the first

one called if there areproblems. Your caregivingexperience will help youdeal with the situations thatmay come up. You also willknow who to call if morehelp is needed.In some cases you have

to be firm, especially if thepresent situation isunhealthy or unsafe. If youhave to act against thewishes of the person withcancer, be direct andexplain what youre goingto do. In other cases,theres room to negotiate.All of you, the patient, thefamily, and you, thecaregiver, will need to besure you have covered alloptions.

By Judy Phelan OConnorA cancer diagnosis can you

leave you confused about yourcare and wellbeing. Both thecancer and the treatments cantake a toll which can lead tofatigue, weakness, and overallblahs. Sometimes you justneed a little help - and its okayto ask! Whether you needtransportation, help with yourshower, meal preparation ormore. Sometimes we just wantsomeone in the house with us,even for a few hours a day.There are several caregiveroptions.Care choices depend on age,

health and physical condition,and assistance needed withactivities of daily living. Issomeone in the family or afriend willing and able and toserve as caregiver?

IN-HOME CAREWith the initial cancer

diagnosis we have every reasonto expect to live independentlyat home. However, home alonecan become isolating whenwere sick. As the saying goes walls dont talk. Companionservices give you and yourfamily peace of mind andprovide personal care such asbathing and dressing,medication reminders, mentalstimulation, light housekeepingand meal preparation, andtransportation. These servicesare provided in hourlyincrements or sometimes thecaregiver resides in the home24/7 One way to find the perfectnon-agency home careprovider is word of mouth. Askfriends and verify references.Criminal history and sexualoffender background checks

are recommended. Theadvantage is one-on-oneattention but remember thatone needing care can bevulnerable. While this maybe an affordable option, havea back-up plan for when thecaregiver is absent. Companies such as ComfortKeepers provide in-homecompanion and care services.The benefit is having a teamof caregivers. Thesecompanies do backgroundchecks and bond employees.Based on need, those withLong Term Care insurancemay claim a portion of thecost. The Star Plus Program(Medicaid) may cover some ofthe cost. Depending on medical criteriaMedicare or private insurancecovers the services of a homehealth agency includingregular visits by a nurse, aideand therapist. This is not 24-hour care but supplements in-home care. Elder Care Oversight Agencyprovides a private RN who isfamiliar with care of the agingand resources in the city. Thenurse makes regular housecalls, accompanies her clientsto doctor appointments, andreports to family. For those who have beendiagnosed with a terminalillness hospice care is given inthe patients place ofresidence provided by aninterdisciplinary team includingphysicians, nurses, CNAs,chaplains, social workers andvolunteers. It is important to remember

that any patient staying at homeshould wear a medical alertbutton in case of a fall ormedical emergency.

COMMUNITY LIVINGSome facilities offer a RespiteStay program for those whoneed short term care (3-6weeks). This is beneficial to thecancer patient who lives alone.It also allows time off for familymembers or caregivers who areresponsible for someone who isill, injured or frail. Communityliving offers a safe, caringenvironment while the caregivertakes a break.

INDEPENDENT RETIREMENTCOMMUNITYA typical resident in a Senior

Living Community is around 85years old, possibly still driving(but not at night), playing bridgebut not eating properly becausewho wants to prepare a mealfor one person. Families areworried. These residents lovehaving an apartment where theycan be independent but enjoymeals and activities with otherresidents their age. No morecooking, cleaning, or homemaintenance! Each apartmenthas a pull cord for emergencyassistance.

ADULT FOSTER HOMEWhen home alone isnt an

option and one-on-one care isntaffordable other choices canmeet the unique needs ofindividuals. Adult Foster Homesprovide assistance in a homeenvironment. Homes averagefour residents not includingfamily members. Licensedhomes have a manager andtrained caregivers. Some homesare Medicaid certified.

ASSISTED LIVINGCOMMUNITYAssisted Living is home for

those who need extra help but

CARE OPTIONS

12

13

NOT skilled nursing. Residents typicallymove from their home or retirementcommunity when declining health or mobilityhas made independent living difficult. Theyare admitted by their primary physician andhave a personalized care plan. In additionto the Licensed Vocational Nurses (LVN)and 24/7 Certified Nursing Assistants (CNA)on staff, home health agencies providenursing services and therapies approved byMedicare.Residents maintain independence in

private studio apartments and have theadvantages of community living like 3 dailymeals, transportation, and housekeeping.Activities include exercise classes, happyhour, games, music, church services, etc.Personal care is described as oralmedication administration, bathing, dressing,eating, toileting, and transferring (included inthe base fee or charged by level of care).Larger communities may have their ownbeauty salons and libraries. Assisted Living communities, licensed andinspected by state and local governments,are paid for privately by resident / family butcan be supplemented for those who qualify(both medically and financially) by LongTerm Care insurance or Veterans Aid andAttendance (this benefit is designed toprovide financial aid to veterans to helpoffset the cost of long-term care ).

NURSING HOMEIn a Skilled Nursing Facility (SNF), or

nursing home, patients receive all the 24-hour services of Assisted Living plus skilledservices that arent available in ones homesuch as complex wound dressings,rehabilitation, tube feedings, or rapidlychanging health status.After a hospital stay some patients are

transferred to SNF for rehabilitation which iscovered by Medicare / Medicaid / private co-insurance for 100 days maximum. Patientswho need care or treatment that can only bedone by licensed nurses become long termresidents. Costs are typically covered bythe individual / family, Long Term Careinsurance, or Medicaid in either a private orsemi-private room.

Patients may feel that theyll no longer be able to set the rules or control their ownlives, or they may be afraid of losing their independence. Maybe they dont want tofeel they are a burden on others. And if they have lived in the same place for a longtime, they probably have strong ties to the community, family, friends, and healthcare providers, as well as social lives and daily routines.

1414

For most people who receive a cancerdiagnosis, there is the expectation andhope of a positive outcome - successfultreatment, remission or just the ability tomanage the day-to-day challenges. Buthow does one embrace hope whentreatment is no longer an effectiveoption?One physician calls this situation the

ultimate hope, explaining that hope liesnot in changing people and theircircumstances but in changing ourminds.For patients for whom hospice care

has been recommended, hope becomesnot what will happen in the future, but inliving now and being present in themoment-to-moment choices that wemake.Michele Aboud, administrator for CIMA

Hospice-El Paso says that choosinghospice doesnt mean youve given up.It means that the treatment goals aredifferent now, she contends. Thepeople on our hospice team strive tomake patients live each day to the fullestby making them as comfortable andsymptom free as possible, she states.Hospice, a name applied to

specialized care for dying patients,originated in 1948 by physician DameCicely Saunders, who began her workwith the terminally ill and eventually wenton to create the first modern hospice in aresidential suburb of London.The evolution of hospice, as we know

it today, offers medical care toward thegoal of maintaining or improving qualityof life for someone whose illness,disease or condition is unlikely to becured. Typically, hospice is available tothe patient and entire family in their ownhome when curative measures havebeen exhausted and life prognosis is sixmonths or less.Care doesnt just extend to the

patient, says Michele Aboud. Since2006, CIMA Hospice has providedcompassionate end-of-life care topatients and offers practical support forthe caregiver during the illness. Eachpatients individualized care plan isupdated as needed to address the

physical, emotional and spiritual painthat often accompanies terminal illness.An additional service is bereavementcounseling that is available to familymembers in their time of grief.The hospice team is a unique network

of skilled personnel which includesphysicians, nurses, hospice aides, socialworkers and spiritual counselors.There are so many things for the

family to consider, says Aboud, so weapproach the care from a holisticapproach that incorporates all aspects ofa patients needs.Our services include not only medical

care, but equipment, supplies,pharmaceuticals, medical and nursingservices and psychosocial support allin the comfort of the patients home, sheadds. Home in this definition alsoinclude patients living at a nursingfacility, a foster home or in the home of aloved one.CIMA Hospice understands that caring

for someone who is terminally ill can andwill take a toll on the caregivers life andmental wellbeing. It is common forcaregivers to take on too much or to tryto handle everything on their own. It is important for the caregiver to

remember that getting help forthemselves can also benefit their lovedone. Were there to provide the entirefamily that support during this part of thejourney, says Aboud. Included inhospice care is respite care, available tofamily caregivers at times when theyneed to rest from their care givingresponsibilities.Talking about serious issues is never

easy, especially with a loved one who isfacing the end of life. While you andyour loved one can still have hope forlonger life or an unexpected recovery, itis a good idea to talk about whats reallyhappening and that the future isuncertain. What is most important is thatyou remember your loved one has theright to choose how to live the rest oftheir life.

Those eligible to receive hospice caremay already be covered underMedicare, Medicaid, HMOs or privateinsurance plans. CIMA Hospiceaccepts all insurances includingcommercial, Medicare, Medicaid andprivate pay. A partial list of servicesthey offer includes:

Time and services of the care team,including visits to the patients locationby the hospice physician, nurse,medical social worker, home-healthaide and chaplain/spiritual counselor

Medication for symptom control or painrelief

Medical equipment like wheelchairs orwalkers and medical supplies likebandages and catheters

Physical and occupational therapy

Speech-language pathology services

Dietary counseling

Short-term inpatient care (e.g. whenadequate pain and symptommanagement cannot be achieved in thehome setting)

Short-term respite care (e.g. temporaryrelief from caregiving to avoid oraddress caregiver burnout)

Grief and loss counseling for patientand loved ones

CIMA Hospice El Paso6600 Montana Avenue, Suite GEl Paso, Texas 79925915-778-1222www.cimahospice.com

Now What? Providing Care During Difficult Times

knowin the understanding the cancer experience community spotlight

Prepare for the worst.

by Patty Tiscareo and Michele Aboud

1515

Powers of AttorneyThere are two types of Powers ofAttorneyStatutory Durable and Medical.The person who signs the Power of Attorney isknown as the Principal.The person authorizedto act for the Principal is the Agent. TheStatutory Durable Power of Attorney and theMedical Power of Attorney cannot be combined.They must be two separate documents.

Statutory Durable Power of Attorney. Thinkof this as a business power of attorney. It allowsthe agent to, among other things, write checks,sign contracts and sell property on behalf of thePrincipal. A Statutory Durable Power of Attorneycan be effective immediately upon signing it orit may not go into effect until you becomeincapacitated. One of the reasons it is referredto as durable is that you are competent whenyou execute it but it retains its power andremains in effect even after you becomeincapacitated.

Medical Power of Attorney. This is selfexplanatory. It allows the agent to make medicaldecisions for you ONLY if you are incapable ofmaking these decisions for yourself.There are two common misconceptions

regarding Powers of Attorney. First, manypeople think that Statutory Durable Power ofAttorney is effective even after the death of thePrincipal. This is wrong. By law, the authority toact under the Power of Attorney ceases uponthe death of the Principal.

Second, you are not giving up any rights bysigning Powers of Attorney and naming anAgent. You are simply allowing the Agent to actfor you but that doesnt mean that you cannotstill act for yourself as long as you arecompetent to do so.

Directive to PhysiciansThis document is also referred to as a Living

Will. This is the document that sets out yourphilosophy on death. Do you want to be keptalive by every means then available or if adoctor indicates that you are terminal, do youwant to be allowed to pass away as comfortablyas possible?I deal with people who have both of these

philosophies. It is a private decision but oncemade should be honored by family members. Itis very important to discuss your decision withyour family so that they understand that youwant your wishes honored.Wills are what are referred to as testamentary

documents. Wills only become effective afterdeath. In otherwords, no matter what you say inyour Will, you retain full ownership and controlof your property while you are alive. In fact, aslong as your are mentally competent, you cancontinually change the terms of your Will andupon your death, the terms of your most recentWill control. There are a number of things toconsider when writing your Will; probably themost important of which is who is to get yourproperty. The following is a list of the things thatyou will be discussing with your attorney so thatyour Will can be properly drafted.

Who is going to receive your property? Wedo not have forced heirship in Texas. In otherwords you can leave your property to whomeveryou please. For example, you dont have toleave it or a portion of it to a spouse or children.However, you can only give away what youown. Texas is a community property state andconsequently, if you and your wife purchased ahome together and your Will states that youleave your home to the author of this article, allyou are really giving me is a 50% interest in thehome because your wife owns the other 50% asher community property. If the children have not yet reached the age of

18 the Will will most likely direct that their sharebe kept in trust for their benefit until they at leastreach the age of 18 since minors cannot ownproperty in their own right. The trustee will berequired to manage and invest the property forthe children. Individuals become legal adults inthe 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 oftheir person. This individual is responsible forcaring for the childs daily needs; making surethe child is in a safe and secure environmentand in general do what a natural parent woulddo.

Who will be the estate representative? InTexas, if you have a Will, this person will mostlikely be referred to as the IndependentExecutor. This is the person who is responsibleto gather the property of the estate; pay all ofthe obligations of the estate and distributewhatever property is left in accordance with theterms set out in the Will.

Probate ProcedureWhat is probate? In very simple terms probateis the procedure that must be followed to havethe property owned by the deceased legallydistributed to the beneficiaries named in theWill. In a straight forward procedure withoutcomplications the probate procedure can takeanywhere from 3 weeks to 2 months. There aredifferent types of procedures and your attorneywill advise you which one is appropriate for yoursituation. Texas has an expedited probateprocedure and it is relatively inexpensivecompared to similar proceedings in otherstates. Texas allows expedited probates even ifthere is no Will to probate. Of course you willwant to use the procedure that is leastexpensive and yet appropriate for yourparticular situation. Your attorney can point youin the right direction. Generally, the estaterepresentative must only appear in court whenthe Will is being admitted to probate. All othermatters can be handled by the attorney.

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

Hope for the best.Prepare for the worst.

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.

by Robert Warach, Attorney at Law

16

The responsibilities ofcaring for a person withcancer may seem complexand overwhelming at first.Depending on the person'sneeds, you may provideemotional support; practicalassistance, such as helpwith medical care, financialissues, or insuranceissues; or serve as thecommunicator between thepatient and the health careteam. The following tips aredesigned to help youbecome a successfulcaregiver:Remember that caregiving is a teameffort. A caregiver is a member of animportant team that includes familymembers, friends, other volunteers,and the health care team. Eachmember of the team brings differentskills and strengths to the group and isworking towards a common goal

providing effective care. If you are theprimary or lead caregiver, help eachteam member express concerns,opinions, and emotions, and makesure that the person with cancer has acentral role in all discussions anddecisions, if possible. It is veryimportant for the person with cancer tohave a sense of control and a way tobe as proactive as possible. Forexample, CancerCare provides aspecial website for caregivers called My Cancer Circle to help caregiversorganize the family and friends whowant to help the patient or the primarycaregiver. Find other onlinecommunities for support.

Create a list of tasks. Caregiving, like any responsibility, ismade up of individual tasks of varyingimportance. Make a list of all of yourcaregiving tasks and use it to decidehow to divide the tasks betweenfriends, family, hired professionals,and community organizationvolunteers.

Be proactive. Being proactive meanstaking charge and planning as muchas possible to prevent last-minuteemergencies. This can also help

provide a sense of control and order.Create schedules that list whichrelative, friend, or other volunteer isavailable when and for what tasks.Make sure that all of the caregiversinvolved have some time to be awaywithout feeling guilty or concerned.Long-distance caregiving takes evenmore planning. Find out more abouthow to be an effective long-distancecaregiver.

Be a problem solver.To be a good problem solver, identifyproblems, find out what needs to bedone, and follow through. Mostimportantly, do not be afraid to seekadvice and help from others. Look forcreative solutions that work for yoursituation.

Try to stay positive.Sometimes its easier said than done,but having a positive attitude can helpset the tone for everything you do. Youmay not have control of what happensto you, but you can change how youreact. Turn to members of thecaregiving team, relatives, friends,religious or spiritual advisors,counselors, and health careprofessionals to help you cope.

Suggestions for being an effective caregiver

17

Know yourself.Recognize your own strengths andlimitations as a caregiver. This allowsyou to set boundaries and know whento ask for help. Setting limits can bebeneficial to both the caregiver and theperson receiving care; the person withcancer can exercise someindependence, while the caregiver getsa needed break. Compassionatecaregivers must recognize when theyneed a break so they dont becomeoverwhelmed or burned out.

Consider professional and volunteerservices. These services includeprofessional home care, home-delivered meals, and help witheveryday activities. Some communityagencies have volunteers who canhelp with transportation or advocate forhealth insurance or other benefits. Alocal hospital or community socialworker is a great source for referrals toprograms in your community.

Caring for the emotional well-beingof the person with cancerWhen caring for a person with cancer,its important to help them maintain asense of control, as a person withcancer may feel that the diagnosis haslimited their control over their life.Respecting a persons independencecan be as simple as asking them if youcan help them with a specific task ordecision instead of doing it on yourown.

Communicate. One of the caregiver's most importantjobs is to communicate openly with theperson who has cancer. Choose a timethat is convenient for both of you totalk. Provide assurance that he or shewill be a central part of all discussionsand decisions. Be open to the personsfeelings and opinions and allowenough time to fully explain yourfeelings.

Accept the limitations of a person whois seriously ill. For example, a personwho just received chemotherapy maynot be able to taste a meal you workedhard to prepare, or a person who is onpain medication may not notice all of

the small things you do. Also, beaware that caregiving tasks maychange as the persons healthchanges.

Include the person with cancer inactivities that provide meaning orpleasure. Even if the person withcancer is no longer able to activelyparticipate in activities he or sheenjoys, look for other ways toencourage involvement. It is importantto help the person stay connected tothe world beyond the cancer and tomaintain a sense of normalcy.

Participating in medical andphysical careGather information about the patientsdiagnosis, treatment, and prognosis(the chance of recovery). As acaregiver, learn more about cancer,including the patients type of cancer.Many patient advocacy groups alsocan provide information related tospecific cancers. Ask the doctor aboutother reliable resources. In addition,you may want to keep a medicaljournal, which can include the patientsmedical appointments, test results,medications and dosages, symptomsand side effects, new questionsbetween appointments, and namesand numbers for resources.

Be an advocate. Take an active role in the patient'smedical care. If possible, go with himor her to all medical appointments. It ishelpful to write down questions for thedoctor beforehand and to write downanswers. In addition, give the doctorany new information that helps him orher make informed decisions.

Learn how to provide properphysical care.If a person requires physical caresuch as bathing, dressing, feeding,using the toilet, and groomingconsider talking with a health careprofessional, or watching health carevideos, or reading manuals or booksthat explain how to do these tasks. Youmay also want to hire professional helpfor these tasks.

Addressing legal and financialissuesAsk about being assigned aninsurance case manager. Manyinsurance companies will assign arepresentative to help manageinsurance concerns for a person with aserious illness. This representative canbe a resource for determining whichbenefits are covered, deciding whetherarrangements can be made to accessout-of-plan benefits for medicallynecessary care, finding available homecare, or troubleshooting insuranceproblems.

Determine financial status. Providing care for a person who isseriously ill can be financiallychallenging. For services that cannotbe provided by family memberssuchas medical, pharmaceutical, ortherapeutic servicesdetermine whowill perform these services and howthey will be paid. Knowing the financialstatus of the patient can help guidefuture health care choices. Somecommunity organizations may providefinancial assistance for caregiving-related and treatment issues.

Have legal documents in place. Legal documents called advancedirectives are an effective, legallybinding way to communicate apatient's wishes. More importantly, ahealth care proxy (a person who canlegally make health care decisions onanother persons behalf) can bedesignated to speak for the patientwhen he or she is unable to do so.Identifying a health care proxy is animportant decision that should bemade at an early stage andcommunicated to the professionalsinvolved in care. Other documents,such as a durable power of attorneyfor health care and a living will, mayalso be needed. For more information,please see page 15 of this issue,

From: http://www.cancer.net

knowin the Mind|Body|Soul

Take Care of YourselfAdvice for Caregivers

18

Whether youre an experiencedcaregiver or encountering this role forthe first time, caring for someone withcancer can be mentally, physicallyand emotionally taxing. As you enterinto this role you should be sure totake your own wellbeing into accountand make time to care for yourself aswell.One of the first things you shouldconsider is bringing some structure toyour day-today activities. Timemanagement and careful planning willnot only help to keep your activities incheck, it will also help to reducestress.Recognize that you need to maketime for yourself to regenerate,rejuvenate and re-energize. You maynot have time to do this every day, butif you plan carefully, you may be ableto carve out some me time a fewdays a week. Take this time to runerrands, pay bills before they getaway from you, attend to chores andcare for children and other familymembers who depend on you. Thiswill help you to remain as stress-freeas possible during trying times.Another way to maintain yourenergy is to eat healthy nutritiousmeals and exercise wheneverpossible. Exercise, even light walkingand yoga can improve your stamina,mental focus and help you prepare forthe many challenges to come. Ifattending church or religious worshipis important to you, then by all meansbuild this into your schedule.Many of these activities require youto step away form your role as acaregiver. However, in order to dothis, youll first need to develop asmall network of friends and familymembers to help relieve youwhenever you need to attend topersonal matters. Be careful here,speak with your patient first and be

sure that they are confortable with thearrangements youve made. You mayalso consider doing this on a limitedbasis so as to maintain stability and asense of dependability for yourpatient.And finally, spend time with thepeople in your life who bring stabilityto your mental health. Share yourexperiences with a friend to unwindemotionally. All of these things seemsimple enough, but they are allfundamental to your health andwellbeing. Youll be better prepared toassist your patient and they will thankyou for being the best caregiver thatyou can be.

-By Manny Rodriguez

Keep Fit!Caregivers have little spare time forthemselves. So when you do get abreak, you're probably craving rest,rather than thinking of exercise. Yet, ofthe two, exercise could be a far betterchoice. It may prevent you fromgetting sick, help you sleep better andis almost certain to give you moreenergy three things of primeimportance to a caregiver.Your well-being can affect thequality of care you provide to yourloved one, says Wendy Lustbader,M.S.W., a national lecturer and thecoauthor of Taking Care of AgingFamily Members: A Practical Guide. "Itis better to get a break, if you can, asyou're taking care of two lives," shesays. Also, research has found thatcaregivers are more vulnerable toillness and can get sicker if they don'ttake care of themselves.

How Caregivers Can Find Time toExercise.Going to the health club may beattractive, but it may not be realistic.Here are some other options and a

few steps you can take to get yourselfmoving:

Keep it simpleGoing to the gym may be attractive,but it may not be realistic if yousquander precious time on packingappropriate clothes, traveling to andfrom the gym, and arrangingalternative care for your loved onewhile you're there.Instead, you can keep exercise assimple as a brisk walk around theblock. "I recommend not thinking big.Just take a walk," Lustbader says."[Caregivers] are often overwhelmedfrom a busy workday, so just walkingas exercise may be the most they cando. It's a great release and way to bealone, recharge, meditate and collectoneself." Don't think of this as"inferior" exercise. Many studies havedemonstrated that regular walking isone of the best things you can do toimprove physical and mental health.Another option is to use exercisevideos at home. Your loved one maybe able to sit on the couch and watchyou work out, or you can try toschedule your video during nap timeor when he or she is otherwiseoccupied. You can always stop avideo quickly if your loved one needsyour immediate attention.Exercise recommendations aremuch the same for anyone. Your goalshould be 30 to 40 minutes ofmoderately intense exercise at leastthree times a week.Ideally, you'll want to exercisecontinuously for 30 minutes or more.(Some research says this gives youthe maximum benefit). However,taking that much time off may not bean option unless you have backuphelp.It's OK to get your exercise "hereand there" throughout the day.

Research shows that even little burstsof activity are beneficial. Park the carfarther away from the grocery store toget some extra steps in, or take thestairs instead of the elevator. Build upto more time as you begin to see andfeel the benefits of exercise.

Challenge yourself for a goodworkoutYour exercise goals may include

losing weight or toning certain bodyparts. Or you may be seeking torelease stress and regain energy,stamina and strength. Try to get themost from the time you exercise.When you take a walk you shouldmove briskly, to get your heart rateelevated. You should feel that you'veexerted yourself a bit. Working up asweat is one way to tell that you aregetting a good workout. Another clueis to listen to your breathing. itshould become shorter, but youshould be able to hold a conversation.If you can't have a conversation (evenwith yourself), slow down. And,remember, check with a healthprofessional before beginning anyexercise program.Pick a destination, and time yourself

to get there. Change the destinationand path frequently to preventboredom and to challenge your body.Write down your goals and stick to

them. Using an electronic or a manualpace counter can help you track yourprogress and stay motivated.Competing against yourself (oragainst a friend) can make exercise afun and interesting challenge.

Don't forget strength trainingOn days when you can't walk

outside or visit the fitness center,make time for strength training.Caregivers responsible for lifting lovedones in and out of bed or chairsrequire a strong core. Your core is thearea around your trunk and pelvis andis where your center of gravity islocated.

-This story was previously published byJohnson & Johnson

If done right, exercise canhelp reduce stress, increaseenergy, and make you abetter caregiver.

The Importance Of Exercise For You

No one is too out-of-shape, too tired,or too busy to benefit from a regularexercise program. We often hear aboutthe benefits: Lose weight! Feel good!Sleep better! Prevent osteoporosis!Prevent heart disease! Reduce stress!and theyre all true.

If you have excuses, Ive neverexercised before, My knees and feethurt too much, or I dont have time,do yourself a favor. In as little as 10minutes a day, and as few as threedays a week, the right exercise will helpyou feel better, sleep better, reducestress, and enjoy life more.

Some General Guidelines When You Exercise

Set aside a specific time every day forexercise.

Be consistent. To get benefits from anyexercise program, do it regularly.

Warm up and cool down; stretch bothbefore and after you exercise.

Start with as little as 10 minutes ofexercise a day and increase graduallyto 30 minutes for maximum benefits.

Use the talk/sing test. To find out ifyoure exercising hard enough or notenough, use this simple check. If youcant talk and exercise at the sametime, youre working too hard. If youcan sing and exercise, youre notworking hard enough.

Always ease into an activity for thefirst five minutes, and slow down thepace for the last five minutes insteadof stopping suddenly.

Exercise Ideas Take a daily walk. Find a friend to walkwith. You will encourage each otherwhen youre tempted to take a day off.

Try an exercise video. Look for videosfor beginners. Avoid starting withprograms that include jumping andtwisting. Instead, try videos forstretching, muscle toning, orrelaxation. A note of caution: Alwayscheck with your doctor before startingany exercise program.

Check out exercise classes offeredthrough community centers, gyms andsenior centers. Look into yoga, tai chior other non-traditional exerciseprograms. They are a great way toimprove flexibility, muscle tone andrelaxation. Call your communityswimming pools about adult swimtimes or water exercise classes. Manypools offer classes just for seniors orothers who want a slower pace.

Dance your way to better health.Square dancing, ballroom or folkdancing are excellent ways to increaseyour endurance and improve yourbalance.

If you think you need help to find theright exercise program, ask your doctorfor advice.

Originally written and published by the Aging andAdult Services Administration Department of Social

and Health Services, State of Washington.Reprinted with permission.

knowin the Healthy Habits | eat, live and be well20

Nutrition:Planning aheadeases mealtimechallengesBy Sallie Damron

Taking advice on nutrition can seemthe very least of one's concerns afterreceiving a cancer diagnosis but it isactually the best way to feel betterbefore, during, and after treatment.Supplying the body with the nutrients itneeds before treatment helps reservethe strength needed to fight the illness.According to the American CancerSociety, eating well during treatmentalso helps patients toleratechemotherapy, radiation therapy,surgery or biotherapy and their sideeffects. A healthy diet can alsodecreases the risk of infection and helpmaintain a healthy immune system, bothof which aid in the healing processduring and after treatment.

The advice is simple. Make nutritiouschoices and plan ahead wheneverpossible. Preparation is the best way toensure healthy eating in any stage. Ifyou aren't already experienced at mealplanning consider the basics: selectingyour meals; grocery shopping; andpreparing your meals. This can be a lot

to manage so talk to your friends orfamily members about ways they canhelp you with these tasks. Avoid theeasy route of picking up frozen mealswhich are typically chalk full ofpreservatives and sodium and do notprovide enough fruits and vegetables tomeet your daily nutritional needs. Thinkfresh produce, lean proteins, wholegrains and good-for-you fats.

To plan your meals start with a weeklycalendar that will include three to fourmeals for each day. Keep breakfastsimple by choosing items like cerealwith milk, eggs with whole grain toast,or yogurt and fresh fruit. For lunch anddinner choose a few quick and easyrecipes that can be made in advanceand frozen in individual meal-sizedportions (i.e. pasta, casserole, soup,etc.). This will limit the amount of timeyou or your caregiver spend in thekitchen on a daily basis. It is also agood idea to choose foods that youknow you can eat when you are sick,just make healthy choices and avoidsugary or salty foods. Add a varietysnacks, particularly for doctor's visits ortreatment. Snacks that travel well andare good for you include fruit andveggies (such as berries, bananas, andapples, carrots, celery, snap peas, andcherry tomatoes) and prepackageditems like string cheese, whole graincrackers, popcorn, and pretzels.

When selecting your meals consider

the potential side effects of treatment.Foods may not taste or smell the sameto you as they did before treatment; usethis as an opportunity to try new foods,particularly those you have not liked inthe past. Eating in general may bemore challenging once you're intreatment. Smoothies, shakes, juicesand soups should help with mouth soresand tenderness and difficultyswallowing. Stay away from high-fatfoods --anything fried or greasy will bemore difficult to digest.

Stuck for lunch or dinner ideas? Leafthrough cookbooks or search for quickand healthy recipes online. If you wantimmediate ideas look no further thanour recipes. The Savory Turkey andVeggie casserole is great fresh orfrozen and reheated. It is made withbrown rice which means it is full ofwhole grain goodness. The SuperImmunity-Boosting Broth is exactly asits name indicates--full of vitamins andminerals that will boost your immunity. Itcan be added as a side to any maindish and it is also perfect as a mealwhen eating is difficult. The BerryCoconut Smoothie is a quick andnutritious breakfast or snack. It takesonly five minutes and allows forsubstitutes such as a mix of berries orother frozen fruit like mango or banana.The rolled oats can also be replacedwith two tablespoons of flax seed orprotein powder.

Create your grocery list based onyour meal plan and, once your shoppingis complete, consider preparing themajority of your main dishes on one dayso your meals only need to be reheatedthroughout the week. If you are notnormally responsible for the shoppingand cooking you can still share yourintention to eat more nutritiously withthose who cook for you. Don't be toohard on yourself if side effects make itimpossible to follow your meal plan.Consider eating small, frequent mealsor snacks. The important thing is you'llhave healthy foods on hand and will eatnutritiously when you can.

If you are still uncertain about how toeffectively plan your meals ask yourhealth care team. They may be able toprovide an eating plan that takes intoaccount your diagnosis, treatment plan,and any side effects. They are the mostfamiliar with your immune status andoverall nutritional needs so do nothesitate to ask for their advice.

21

Ingredients1 1/2 cups cooked brown ricenonstick spray4 tsp. olive oil, divided1 lb. brown mushrooms, washed and cut into thick slices

1 medium onion, chopped into 1/2 inch pieces

1 green pepper, seeds removed andchopped into 1/2 inch pieces

1 tsp. Greek seasoning1 tsp. Greek oregano1 1/2 lb. ground turkey salt and fresh-ground black pepper to taste2/3 cup low-fat sour cream1/3 cup chicken stock3/4 cup crumbled Feta8 oz. grated reduced fat Mozzarella, divided3/4 cup and 1 1/4 cup

InstructionsCook rice according to package

directions. Preheat oven to 375F. Spray acasserole dish with nonstick spray. Saut mushrooms for 5 minutes over

medium-high heat in a large nonstick fryingpan with 2 teaspoons of olive oil. Placemushrooms in a large bowl to cool.Heat one teaspoon of olive oil in the

same frying pan, add the chopped onionand green pepper, and cook over medium-high heat until slightly brown. Add theGreek seasoning and Greek oregano andcook about 1 minute more. Add thevegetables 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 10minutes (until brown and all water hasevaporated). Season the turkey with apinch of salt and fresh-ground black pepperand break apart as it cooks. Add turkey tobowl of vegetables and stir in the brownrice.

In a separate bowl mix together the sourcream, chicken stock, crumbled Feta, and3/4 cup of the reduced-fat Mozzarella.Gently mix this into the turkey, rice, andveggie mixture. Put the combinedingredients into the prepared casserole dishand spread slightly until flat. Top with 1 1/4cups Mozzarella and cover with foil or lid ofcasserole dish.Bake covered for 20 minutes, then

remove foil or lid and bake another 20minutes until the top is nicely browned andthe whole casserole is bubbling. Serve hotor let cool and freeze in individual servingsizes. This also keeps for several days inthe refrigerator. Reheat in the oven ormicrowave.

Ingredients1 fennel bulb, plus tops2 unpeeled yellow onions, cut into quarters6 unpeeled carrots, cut into thirds1 leek, white and green parts, cut into thirds1 bunch celery, including the heart, cut intothirds

2 unpeeled sweet potatoes, washed andcut into chunks

1 garnet yam, washed and cut into chunks1 large bunch fresh, flat-leaf parsley6 sprigs fresh thyme12 large cloves unpeeled garlic, clovessmashed

3 inches unpeeled ginger, cut in half,lengthwise

1 8-inch strip of kombu (kelp, also knownkonbu, dashima or haidai)

12 black peppercorns4 juniper berries or allspice berries2 bay leaves8 quarts cold, filtered water1 lemonSea salt

InstructionsRinse all vegetables well (including the

kombu) and place in a 12-quart or largerstock 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 morewater if the vegetables begin to peek out. Alonger simmer will increase the broths tasteand nutrient density. Once the full richnessof the vegetables can be tasted, strain thebroth through a large, course-mesh sieveinto heat-resistant container.Serve hot with a squeeze of lemon juice

and 1/8 teaspoon sea salt per cup. Let coolto room temperature before refrigerating orfreezing. The broth will keep for 5 to 7 daysif refrigerated in an airtight container or inthe freezer for 4 months.

Ingredients2 cups frozen berries (strawberries,blueberries, or raspberries work best)1/2 cup plain low fat yogurt1/2 cup shredded, unsweetened coconut2 Tbsp rolled oatsPinch of ground cinnamon

InstructionsPlace frozen berries, yogurt, coconut,

rolled oats and cinnamon into a blender.Blend until smooth. Enjoy!

Easy recipes for Cancer Patients & their caregivers

Savory Turkey &Veggie CasseroleMakes 8 Servings

High Protien

Super Immunity-Boosting Broth

High Comfort

Berry CoconutSmoothieMakes 1 Serving

High Taste

22

SPEC IAL FREE PREVIEW EVE NT

March 18th, 6:30 pm at Basset Premiere Cinemas

Reserve your seat at:kcostv.org/cancer

SPONSORED LOCALLY BY:

SPONSORED NATIONALLY BY:

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inmiere Cre P8th, 6:30 pmh 1

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NTVE E

TIONALLSPONSORED NA ATIONALL

:Y BYLLLY BY

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kcRese

:Y BYONSORED LOCALL LY BY

ercancorg/ostv.t:t ave your seaer

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

CanCer: The emperor of all maladiesCancer 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 repairto 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

2015PREMIEREEDITION

COLORS OFCANCERCOOKBOOKThe Rio Grande Cancer Foundation invitesyou to grab a spoon and get cooking inour first edition of the Colors of Cancer

Cookbook.

Each dish tells a story and we want toshare yours. In this special collection ofrecipes we honor those who have touchedour hearts and taste buds.

Do you have a special recipe that bringsback warm memories? Submit it to the RioGrande Cancer Foundation forconsideration!

Heres how:Entries can be submitted by mail, e-mail orby visiting our website or facebook page.

Please include your name, contactinformation, the person you are honoringand their story. All recipes should include alist of ingredients and preparationinstructions as well as the number ofpeople the recipe serves.

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

www.rgcf.org

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PAIDEL PASO, TX

PERMIT N0 173

Rio Grande Cancer Foundation10460 Vista del Sol Suite 101El Paso, TX 79925

As you already know and have experienced for yourself,our magazine, In The Know: Understanding the CancerExperience is a real treasure of insight and inspiration.One of our biggest charges here at the Rio GrandeCancer Foundation is to be FISCALLY prudent so we cancontinue granting dollars to not-for-profits and to sustainour own programs. Another is to be SOCIALLYresponsible to our community and resources. To that endwe are now offering two ways for our readers to get InThe Know and stay in the know. We will offer a digitalversion of our magazine to be a little more earth friendlyand to cut down on printing costs!

So for those of you who are computer savvy, you will nowbe 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 stillthose readers that like to hunker down in the tub oroutside under a tree reading our informative andenlightening articles so for you, we will continue to delivera paper version of our magazine to your door.

All you have to do is to pick how you want to.GET INTHE KNOW!

Get In The Know delivered to your in-boxinstead of your mailbox

Help RGCF save valuable time and resources

To receive your free online subscription of In the Know and helpthe Rio Grande Cancer Foundation simply submit your e-mailaddress to: cmartinez@rgcf.org