coping with caregiving: how to manage stress when caring ... with caregiving.pdf · how to manage...

PNW 315Reprinted June 2003

A Pacific Northwest Extension PublicationOregon State University • Washington State University • University of Idaho

HOW TO MANAGE STRESSWHEN CARING FOR OLDER RELATIVES

Coping Caregiving

with

Authors

Vicki L. Schmall, Extensiongerontology specialist emeritus,Oregon State University; Ruth E.Stiehl, professor of education,Oregon State University.

Vicki L. Schmall and Ruth E. Stiehl

PNW 315 • Reprinted June 2003

A Pacific Northwest Extension PublicationOregon State University • Washington State University • University of Idaho

HOW TO MANAGE STRESSWHEN CARING FOR OLDER RELATIVES

Coping Caregiving

with

Contents

Who are you, the caregiver? __________________________________________ 2

What is caregiving? _________________________________________________ 3

Caregiving stress: symptoms and causes _____________________________ 4–5

Strategies for managing stress _______________________________________ 4

Set realistic goals and expectations _________________________________ 6

Establish your limits ______________________________________________ 8

Ask for and accept help ____________________________________________ 8

Take care of yourself ______________________________________________ 9

Involve other people _____________________________________________ 13

Caregiving from a distance __________________________________________ 19

Placement in a care facility __________________________________________ 22

Conclusion _______________________________________________________ 22

For more information _________________________________ inside back cover

COPING WITH CAREGIVING 1

Family members who play amajor role in caring forelderly relatives frequently

ignore their own needs. Somefind themselves virtuallyhomebound and consumed bycaregiving tasks. Whencaregiving is prolonged overmonths and years, theself-sacrifice is particularlyharmful.

We have prepared this publica-tion to help you maintain yourpersonal well-being while pro-viding quality care for an elderlyrelative. We will discuss thesources of stress and how youcan master stress for your ownbenefit and that of the person forwhom you are providing care.

2 COPING WITH CAREGIVING

Remember, it’s just as importantto take care of your own needsas to provide the best care foryour family member. As a care-giver, ignoring your own needs isnot only potentially detrimentalto you, but also can be harmfulto the person who depends onyou. Many nursing home place-ments are precipitated by thecaregiver’s exhaustion, illness, ordeath. This publication can helpprevent such a situation for youand your family.

Who are you,the caregiver?

You may be a spouse, son,daughter, neighbor, close friend,or distant relative. You may beyoung or older yourself. Nomatter your relationship or age,as a caregiver you are makingconcessions and a personalsacrifice to provide care for

another person. This can createareas of conflict and high levelsof stress in your life.

If you’re young, you probablyhave competing responsibilitiesfor children, spouse, and job. Ifyou’re older, you may be adjust-ing to age-related changesincluding retirement, reducedincome, widowhood, declininghealth, or different livingarrangements. At any age, youprobably have important goalsand plans that are interrupted orpostponed because of caregivingresponsibilities.

As a caregiver, you may beproviding care out of love or outof a sense of obligation. Moreoften than not, you feel both loveand obligation. You may beproviding the support alone orcoordinating the work of others.You may find caregiving taskssatisfying and rewarding orcompletely frustrating. Thispublication will help you under-stand your responses and willshow you ways to reduce theconflict and stress caused by thedemands of caregiving.

Many nursinghomeplacementsareprecipitatedby thecaregiver’sexhaustion,illness, ordeath. Thispublicationcan helpprevent sucha situationfor you andyour family.


What is caregiving?

Caregiving can evolve slowly,over a long time, or suddenly, inthe case of illness or accident.Caregiving can mean having theolder person live with you, nearyou, or hundreds of miles away.Your older relative may be physi-cally disabled, mentally inca-pacitated or both. Depending onthe specific need, caregiving canbe a lot of different activities,including:

• Round-the-clock supervision

• Supervising others whoprovide direct care

• Shopping

• Telephoning

• Traveling to and from yourrelative’s home

• Maintaining two homes—yours and your relative’s

• Lifting, bathing, dressing, andfeeding

• Managing incontinence

• Managing financial and legalaffairs

• Providing social activity

• Supervising medication

• Arranging for health care

• Listening, talking, andproviding emotional support

Whether you are providinground-the-clock direct care orcoordinating others who providedirect care, you are still thecaregiver: You are responsible tosome degree for another person’s

well-being. You may feel a senseof accomplishment in helpingyour dependent relative and mayexperience a new closeness inyour relationship. Often a parentand child reach a higher level ofacceptance and understandingwhen the child provides care forthe mother or father. However,no matter how loving the rela-tionship, caregiving almostalways involves some personalsacrifice and stress, which can beseen in the following symptoms:

• Emotional or physicalexhaustion

• Depression

• Marital problems

• Family problems

• Alcohol or drug misuse

• Conflict among life roles—spouse, employee, parent, andcaregiver

• Neglect or abuse of the olderperson

You may feel that there are toomany expectations and notenough time and energy to meetthem all. Unresolved, excessive,or prolonged stress results inwhat often is called burnout.When challenges and demandsare too great, they drain ourphysical energy, time, health,and money. Becoming aware ofhow stress takes hold is the firststep toward coping with it.

Caregiving canmean havingthe olderperson livewith you, nearyou, orhundreds ofmiles away.


Strategiesfor managing stress

Once you know the sources ofstress, you must determine whichones you can do somethingabout and which ones arebeyond your control. Successfulcoping involves accepting whatyou can and cannot change.

For example, you will not beable to change a parent who hasalways been demanding andinflexible, but you can controlhow you respond to your parent’sdemands. If your father has aprogressively debilitating illness,you can’t change that. However,

you can develop skills for copingwith the changes brought on byhis illness.

Usually some action can betaken to decrease stress. Changesdo not need to be major to makean important difference. Some-times letting go of unrealisticexpectations or adjusting yourstandards of how frequently orhow well you perform a task(such as housekeeping) willmake a big difference.

In general, professionals whohave extensive experience work-ing with caregivers agree on fivebasic strategies to help control

Caregiving Stress: Symptoms

When you experience an unusual level of stress, certain warning signals occur. Answering thefollowing questions will increase your awareness of these signals.

Yes No

❏ ❏ 1. Do you feel a loss of energy or zest for life?

❏ ❏ 2. Do you feel out of control, exhibiting uncharacteristic emotions or actions?

❏ ❏ 3. Do you lack interest in people or things that formerly were pleasurable?

❏ ❏ 4. Are you becoming increasingly isolated?

❏ ❏ 5. Are you using more sleeping pills, medications, alcohol, caffeine, or cigarettes?

❏ ❏ 6. Are you having increased health problems; for example, high blood pressure, ulcers, or difficulties with digestion?

❏ ❏ 7. Is it hard to fall asleep at night? Do you awaken early or sleep excessively?

❏ ❏ 8. Are you experiencing appetite changes?

❏ ❏ 9. Do you have problems with concentration or memory?

❏ ❏ 10. Are you increasingly irritable or impatient with others?

❏ ❏ 11. Do you have thoughts of suicide?

A “yes” answer to even some of these questions can indicate stress that has become debilitat-ing. Recognizing the source of this stress is the next step in dealing with its destructive effects.


Caregiving Stress: Causes

Causes of stress vary with the responsibilities and the caregiver. What creates stress for youmay not create stress for someone else. There are, however, some common sources ofcaregiving stress, which we raise in this series of questions.

Yes No

❏ ❏ 1. Do you have multiple demands on your time, energy, or money? What are they?

❏ ❏ 2. Do you feel that your responsibilities conflict? Which ones?

❏ ❏ 3. Is there a difference in expectations between your family, your boss, your dependent relative, yourself? What are they?

❏ ❏ 4. Do you feel you don’t understand the older person’s mental or physical condition?

❏ ❏ 5. Do you have difficulty meeting your relative’s physical or emotional needs?

❏ ❏ 6. Are you pressured by financial decisions and lack of resources?

❏ ❏ 7. Do you feel a loss of freedom . . . a sense of being “trapped”?

❏ ❏ 8. Is there disagreement among family members?

❏ ❏ 9. Do you feel that other family members aren’t doing their share?

❏ ❏ 10. Does the older person place unrealistic demands and expectations on you?

❏ ❏ 11. Is there a lack of open communication?

❏ ❏ 12. Do other family members have negative attitudes that you have trouble contending with?

❏ ❏ 13. Is there deterioration in your family member that is painful to watch?

❏ ❏ 14. Are there other problems with children, marriage, employment, or health? What are they?

Look carefully at questions to which you answered “yes.” Focus your attention on thesespecific sources of stress as we talk about ways to reduce stress.

the destructive effects of stress.They are:

1. Set realistic goals andexpectations.

a. Plan achievable goals.

b. Develop realisticexpectations.

2. Establish your limits.

3. Ask for and accept help.

4. Take care of yourself.

a. Express your feelings.

b. Maintain your health.

c. Take time for yourself.

5. Involve other people.

a. Hold a family conference.

b. Get professional guidance.

c. Use communityresources.


Set realistic goalsand expectations

Plan achievable goals

What do you want to accom-plish? The basic goals ofcaregiving are to assure the carereceiver’s quality of life, physicalcomfort, and safety. These goalscan be accomplished in manyways. For example, you may bethe direct care provider or youmay be a “care manager” whoarranges, coordinates, and moni-tors the services your familymember requires.

In setting goals, it’s important toconsider how caregiving is likelyto affect other areas of your life.How is your health? What is yourrelationship with your spouseand children? What otherdemands and obligations do youhave? Are you employed? Pre-venting caregiver burnout meansaccepting the limitations of whatyou can accomplish.

In addition to understandingyourself, you also need to knowhow the illness or disabilityaffects your family member.Objectivity about your situationis important—but not alwayseasy. Find out what is likely tooccur medically and behavior-ally now and in the future. Forexample, sometimes a mentallyimpaired person’s behavior ormoods can be baffling. It canappear that he or she is inten-tionally being difficult, actinghelpless, or refusing to communi-cate. If this behavior occurs,consult with a professional whois knowledgeable about yourfamily member’s condition. Aprofessional often can assesswhether behavior is intentionalor disease-related and thereforeunintentional. By determiningthe reason for behavior, you canadjust your expectations andresponses.

You’ll see results more often ifyou select goals that are specificand achievable. Specific goalsare short-term and focused on aclear problem. If you have onlybroad, long-range goals, you aremore likely to experience frustra-tion. You may have a long-rangegoal of getting your father backto his own home, if possible.Specific, achievable, short-termgoals might include:

• Keeping your father’s spirits upby arranging for friends andfamily to visit


• Developing your father’sphysical strength by arrangingfor people to take him on dailywalks

The degree to which short-termgoals are accomplished will helpyou assess the practicality oflong-term goals. Professionalsinvolved in your family member’scare can help you set realisticshort-term goals.

Also consider goals in terms ofthe ill person’s personality andcapabilities. Some caregivers aredriven by goals such as “makemother happy.” Given mother’spersonality or the accumulationof recent losses, this goal couldbe completely unachievable.Such a goal creates a heavyburden, and you’ll probablynever feel that you’ve attained it.A specific and achievablegoal, however, might be toprovide a pleasurable activity atleast once a week for yourmother. Perhaps that’s spending2 hours each week visitingfriends or working on a puzzle. Ifyou set specific goals, you aremore likely to feel satisfied withyour progress.

Develop realistic expectations

How realistic are your expecta-tions? Do you often feel that ifonly you could do more, thingswould be better for your familymember—your mother wouldbe happier, your father lessconfused, your spouse less

depressed? Do you sometimesthink, “Mother took care of mewhen I was a child. I should beable to care for her as well asshe took care of me”?

Caregivers frequently struggle tobalance their self-expectationswith what they actually canachieve. Sometimes we expecttoo much of ourselves and weget into a state of constant worryor anxiety because we think weare not doing what we should.Women caregivers are particu-larly vulnerable to “shoulds.”Because of the way females areraised in our society, womencaregivers often believe theyshould be able to do everythingthemselves. When unable to doso, they feel guilty or depressed.

Sometimes old promises drive usto do more than what is realistic.Promises can get in the way ofobjectively assessing the currentsituation. They reduce our objec-tivity and ability to make the bestdecisions for everyone con-cerned. It’s important not to letold promises, “shoulds,” or guiltguide caregiving decisions. If anold promise, such as “Mom, I’llnever put you in a nursinghome,” is creating difficulties foryou, compare the current situa-tion to the one when the promisewas made. You’ll probably findthe situation has changed con-siderably. If it hadn’t, it mightindeed have been possible tofulfill the promise.

Preventingcaregiverburnoutmeansacceptingthelimitationsof whatyou canaccomplish.


Establish your limits

You have a right to set limits onwhat you will do. It’s all right tosay “no.” That can be difficult,however, especially if you mustmake painful choices. At times,of course, it’s necessary to gobeyond limits. In general, how-ever, providing care at theexpense of your mental andphysical health or relationshipswith other family members doesnot benefit anyone!

When you set limits, it’s impor-tant to communicate them toyour family and to your ill rela-tive. This may be particularlypainful to do with a parent orspouse. But remember, not to doso will only increase your stress.

Discussing limits in caregiving isusually easier if you considerother ways in which yourrelative’s needs can be met.Share information about thoseoptions at the same time you talkabout your limits.

Ask for and accept help

How do you respond to offers ofhelp? Is it difficult to ask forassistance? When you do, areyou specific enough so peopleknow exactly what you want? Doyou expect close family membersto know when you need help?Do you refuse offers of help, butfeel exhausted or resent notreceiving assistance? Do you feel“I should be able to do it alone”?

Resistance to accepting help is acommon cause of stress anddepression among caregivers. Inour culture, with its emphasis on“independence” and “going italone,” it’s not easy to requesthelp. Some caregivers view it asa sign of helplessness, inade-quacy, or failure. Actually, askingfor needed help is just the oppo-site. Knowing your limits andreaching out for assistance beforeyou are beyond your limits is animportant characteristic of astrong individual. It also helpsensure quality care for yourfamily member.

Being a martyr benefits no one.Refusing help will not make youa better caregiver—it will makeyou exhausted and probablyirritable.

Family members, neighbors, andfriends often are willing to help.But sometimes people hesitate toask if they can help because theyare frightened by illness, feeluncomfortable around the illperson, don’t want to interfere, ordon’t know what they can do.You may have refused earlieroffers, or you may appear to haveeverything under control.

People can help best if you tellthem exactly what you need andhow they can help. Be specificand positive. When family orfriends ask how they can help,make a specific suggestion. Forexample, say, “Could you visit

Resistance toacceptinghelp is acommoncause ofstress anddepressionamongcaregivers.


with mother for an hour so I cango to the store?” or “When yougo to the store, could you pickup a few things I need?” Tasksunrelated to caregiving may beeasier for some people. If youcan be flexible, ask when wouldbe the best time for them. It’salso important to show apprecia-tion for any help received. Letpeople know how much theirsupport means to you.

People are always less likely torespond to requests that aredemanding, manipulative, orguilt-provoking. One of the leastproductive attitudes a caregivercan have is to expect others to“know” when help is needed.People are not mind readers.Keep in mind, too, that othersmay have obligations or prob-lems of which you are not awarebut that limit theassistance they canprovide.

Take care ofyourself

Expressyour feelings

It’s very importantthat you findsomeone withwhom you can talkopenly about yoursituation and youremotions.

Understand your emotions. Beinga caregiver and seeing a lovedone decline are not easy. Almostevery caregiver experiences awide range of emotions, some ofwhich are conflicting, confusing,and ambivalent. You may feellove, sadness, frustration, dislike,repugnance, guilt, grief, fear,resentment, hopelessness, ordespair. You may feel angryabout your family member’sincreased dependency and themultiple demands on your time,energy, and money. As yourfamily member changes, youmay grieve the loss of the personhe or she used to be. Feelingunappreciated is sometimes aproblem for the caregiver, par-ticularly if the ill personexpresses only dissatisfaction orcan’t show appreciation.

These feelings are normal. Theyare neither “good” nor “bad,” nordo they reflect the degree of yourcaring. Feeling angry does notmean you love your relative less.What is important is how youhandle your feelings. Learning toexpress feelings and to deal withtensions in constructive ways isvital to your emotional andphysical health.

Stress has fewer negative effectsfor people who admit theirfeelings and accept them. Whenyou understand your emotions,you can control them. Repressingor denying feelings drains energyand can cause irritability, depres-sion, or physical problems. Yourfeelings also can greatly influ-ence your judgment.

Some feelings are very hard toshare directly. If this is true foryou, find an indirect way to do

so—write them down, getinvolved in vigorous physicalactivity, chop wood, punch apillow.

Use assertive communicationtechniques. Feelings should notbe expressed in a manipulativeor hostile way, to get even withsomeone or to create a sense ofguilt. Such responses are notconstructive and may indicateyou are stuck in an “anger trap.”To avoid the trap, use assertivecommunication. When conflictsarise, talk about them with thoseinvolved. Express yourself interms of your own feelings. Use“I” statements and describespecifically what is botheringyou. For example, “I’m upset thatmother’s doctor appointmentwasn’t made.”

Avoid “you” or blaming state-ments that imply others areresponsible for your feelings.Blaming statements, such as “Youdon’t care about Mom,” “Youmake me so angry,” “You neverfollow through on anything,” or“You always let me down” soundaccusatory and tend to createdefensive arguments. Saying “Ifeel, I need, I expect, I choose, Ibelieve” is more effective andless threatening. Avoid termssuch as “always” and “never”—the person usually will denythese statements because “never”and ‘‘always” are rarely true.Assertive communicationencourages problem solving.

Stress hasfewernegativeeffects forpeople whoadmit theirfeelings andacceptthem.


Recognition and appreciation areimportant needs. If you don’t feelappreciated, let others know. Askfor positive feedback. If the carereceiver can communicate, tellhim or her your feelings.

Join a support group. Mostpeople benefit from sharing theirfeelings with someone who issupportive and who listensnonjudgmentally. Sharing oftenrelieves tension, helps give anew perspective, increasesmutual understanding, andbuilds support.

Some areas have support groupsfor this kind of sharing. Somegroups are oriented to specificdiseases such as cancer,Parkinson’s disease, lung diseases,or Alzheimer’s disease. Othersare for family caregivers ingeneral. Many caregivers findthat support groups help themfeel less alone. Support groupsgive an opportunity to shareopenly with others who under-stand and to learn techniques forcoping. Get information aboutlocal support groups from a localhospital or home health agency,the Area Agency on Aging, ordisease-related associations suchas the American Cancer Societyor the Alzheimer’s Association.

Maintain your health

To provide effective care, it’s vitalthat you maintain your ownhealth. Neglecting your health

has long-range consequences,not only for you but for theperson who needs your care.Proper diet, sleep, exercise, andattention to your health problemsare essential.

Without adequate nutrition andrest, you will feel exhausted,discouraged, and depressed. Ifinterrupted sleep is a majorproblem, find someone who willprovide occasional or evenregular night duty.

Exercise has many benefits. Itpromotes better sleep, reducestension and depression, liftsspirits, and increases energy. Ifyou see exercise as just one moredemand, think of ways to build itinto your daily routine. If yourfamily member is physicallyable, perhaps you could walktogether. Do stretching exerciseswhile talking on the telephone orwatching television. Relaxationtechniques are another way toreduce stress. Find activity youenjoy, so exercise is a pleasurefor you. Do it 20 to 30 minutesthree times a week.

Humor is a powerful antidote tostress. Laughing quickens thepulse rate, stimulates the bloodcirculation, activates muscles,increases oxygen intake, andfosters physical relaxation. If youhave forgotten how to laugh, tryto be around people who stillknow how—it’s contagious.

To provideeffective care,it’s vital thatyou maintainyour ownhealth.



Take time for yourself

What do you do for personalrenewal? Do you save some timefor yourself out of each day andtake occasional extended breaks?Or are you so involved withcaregiving tasks that you havelittle or no time for yourself?

All too often, caregivers placetheir own needs last. Helping anolder relative should not meangiving up all activities and rela-tionships with other people.Sacrificing oneself in the care ofanother and removing pleasur-able events from one’s life canlead to emotional exhaustion,depression, and physical illness.Taking breaks from caregiving isessential for both full- andpart-time caregivers. You have aright—even a responsibility—totake time away from caregiving.

Refusing to take breaks forself-renewal can be detrimental

to the care receiver as well as toyou. It can increase the depen-dency of the care receiver. The illperson who sees few peopleregularly may benefit from beingwith others while you take abreak. Sometimes, too, the carereceiver is more responsive withanother person. For example, heor she may participate moreactively in rehabilitation exer-cises in your absence.

Objective evaluation usuallyshows that others can provideadequate care, at least for a shorttime. If you hesitate to leavebecause you are concernedabout what might happen whileyou’re away, ask yourself, “Whatis the worst that could happen?”Then make contingency plans forhandling “the worst.”

Consider getting breaks early incaregiving. If you wait until youare burned out, these breaks willnot be enough. It’s important tomake a plan for regular breaks,decide on the time, date, andactivity—then follow through!

Finding appropriate substitutecare takes time and preparation.In some areas, communityrespite care can provide in-homeor out-of-home support. Respiteservices may be available for afew hours, a day, overnight,weekends, a week or longer, andon a planned or emergencybasis. Respite providers may betrained volunteers or paid staff.


In-home respite care can includecompanion-type or supervisionservices or the temporary use ofhomemaker and/or home healthservices. It has the advantage ofkeeping the person in familiarsurroundings. Out-of-home careincludes adult day care programsor short stays in adult foster carehomes, assisted living facilities,nursing homes, or hospitals.

Regardless of the respite care youselect, prepare for the service byanswering these questions.

• What type of help do I reallyneed (regular or occasional)?

• What times are best for me?

• How much notice do I need togive the substitute careprovider?

• What information should therespite provider have about theelder’s special needs androutine?

• How should the respite pro-vider deal with an emergency(who and where is backup)?

• How can I prepare the olderperson for my leaving?

If you’ve always been available,you may need to prepare yourfamily member for your leaving.You might try a trial period. Havethe substitute care provider visita few times while you arepresent or take only a brief breakin the beginning to see how thearrangement will work. If yourrelative protests your leaving,acknowledge his or her feelings

but state your need for a break.For example, you might say,“Dad, I know it’s hard to haveme leave, but I am exhaustedand I need to get away for awhile.” For the memory-impaired person, it may help toleave a note indicating the timeyou will return.

Involve other people

Hold a family conference

Although care for an older per-son may be provided primarilyby one person, all familymembers should be involved inthe planning and continualsupport. One way to decide howto share caregiving responsibili-ties is to hold a family conference.

Hold a family conference asearly as possible after the needfor caregiving arises. The confer-ence gives everyone a chance todiscuss caregiving concerns,identify potential problems andsolutions, and negotiate thesharing of caregiving tasks. Theconference also can clarify eachperson’s expectations and mini-mize misunderstandings.

Include everyone. Everyone whois concerned and might beaffected by care decisions —siblings, spouse, other relatives,housemates, neighbors, closefriends, and the person for whomplans are being made—shouldbe involved in the family confer-ence. If illness prevents the care

Considergetting breaksearly incaregiving.If you waituntil you areburned out,these breakswill not beenough.

receiver from being involveddirectly, get his or her input andkeep him or her informed.Remember, having as muchcontrol as possible over our livesis important to all of us, regard-less of age or illness.

Don’t exclude a family memberfrom a family conferencebecause of distance, personality,family history with the olderperson, or limited resources. It’sjust as important to include adifficult, argumentative familymember, or one who never visits,as it is to involve those who aresupportive.

Telephoning distant relatives toget their input and to keep theminformed helps them feel a partof the decision making. Involvingall family members in developinga caregiving plan ensures greatersuccess and support for the planand helps prevent later under-mining of decisions.

Consider a two-step conference.Sometimes it’s helpful to hold atwo-step conference. The firstmeeting, held without the olderperson, is to air ideas, feelings,and concerns, look at gaps ininformation, and discuss respon-sibilities for each family member.The purpose should not be tomake the decision or to “gangup” on the older person. Asecond meeting is held with theolder person, who is involved asmuch as possible in looking atoptions and making decisions.

Plan for success. A family con-ference is most successful whenyou take these steps.

• Before the conference, askfamily members to list theirconcerns and tasks they arewilling to do.

• Hold the conference in aneutral place. Holding it in theolder person’s home helps givehim or her a greater sense ofcontrol.

• Create a feeling of support andconfidentiality.

• Keep the conference focusedon the current concern ratherthan on other issues or pastconflicts.

• Be certain everyone has theopportunity to express feelings,preferences, and suggestionswithout being “put down.”

• Focus on the positive. Identifywhat each person can do, butencourage everyone to behonest about her or hislimitations. Sharinginformation about otherresponsibilities can help othersunderstand why the supportmust be limited.

• Prepare a written plan listingwhat each person will do andwhen he or she will do it. Keepit flexible. A written plan canprevent later disagreementsabout who agreed to what andcan better assure that neededtasks will be completed.

Don’texclude afamilymemberfrom afamilyconferencebecause ofdistance,personality,familyhistory withthe olderperson, orlimitedresources.


Realize there may be conflict. Afamily conference is not alwayseasy; in some families, it isimpossible. It’s most diffi-cult for families who havenever discussed feelingsand family concerns.Where conflicts existamong family members,decision making is diffi-cult. When family mem-bers come together afteryears of separation, oldconflicts about relation-ships, family roles,expectations, and eveninheritance can reemerge.

Family members often havedifferent perceptions aboutthe care needs of an olderperson, the best care option, thedivision of care tasks, and howmoney should be spent. Forexample, one brother might notwant a parent’s resources—hispotential inheritance—spent forin-home services. He may preferthat the family provide theneeded care, while anotherbrother feels “Mom’s money isthere to spend on her” andprefers to purchase care services.

Beliefs about what is “best” oftendiffer, creating conflict. Oneperson may believe the impairedperson should be kept at home,regardless of what needs to bedone; another may feel that adifferent living arrangement isneeded for the person’s health

and safety. Intense conflicts oftenresult when one person insists

that the older person be main-tained at home and another isfighting for nursing home place-ment. If family conflicts or hid-den resentments prevent rationaldiscussion, seek professionalguidance. A counselor, health orsocial service professional, ormember of the clergy trained infamily counseling can help youdeal with family conflicts. He orshe also may be able to guide thefamily conference.

Get professional guidance

Receiving professional adviceand assistance can help reducesome of the causes of stress.Consider seeking professionalguidance under the followingcircumstances.


• You use alcohol or drugs toforget your problems, relievestress, fall asleep at night, orget going in the morning.Substance abuse can impairyour judgment and contributeto feelings of inadequacy andguilt. It also can result inneglectful or abusive behavior.

• You become depressed.Untreated depression canharm your health and yourresponses to the ill person.

• You don’t understand yourfamily member’s behavior ordon’t know how to deal withspecific care tasks.

• You feel resentment or loseemotional control, or youneglect, humiliate, or becomephysically rough with a familymember. These behaviors oftenare caused by exhaustion,stress, or lack of resources.

• You are being physically oremotionally abused by yourimpaired family member.

• Your family cannot resolveproblems or reach agreementon care decisions.

• You feel conflict between care-giving and other responsibilities.

A professional often can helpyou gain a clearer perspective.Don’t be afraid to seek help anddon’t wait until a crisis over-whelms you. Getting help is asign of personal strength, notweakness, and will enable you tobe a more effective caregiver.

Get names of individuals skilledin working with older adults andtheir families through seniorcenters, hospitals, and health,family, and social service agen-cies. When you call a profes-sional, state your specific needand ask the person about his orher training and experience withyour problem. If the person isunable to assist you, ask fornames of others who can help.

Use community resources

In recent years, a range of com-munity services has developed tohelp older persons and theirfamilies. Specific programsdesigned for caregivers includerespite care and support groups(see pages 11–13). Also, pro-grams designed to serve olderadults can help the caregiver,too. Paying for outside assistanceearly in the caregiving process isgenerally less expensive than ifyou wait until you becomeoverwhelmed and exhausted. Atthat point, your options are likelyto be fewer and more expensive,and you may be paying healthbills for yourself as well as foryour relative.

Available services vary by com-munity. Following are some ofthe most common.

Companions or friendly visitorsprovide companionship, friend-ship, support, or supervision toolder adults for a few hours at atime. In some areas, paid

Receivingprofessionaladvice andassistancecan helpreduce someof the causesof stress.


companions are available to staythrough the evening and night.For older people living alone,friendly visitors can provide asafety check as well as compan-ionship. In general, they do notprovide housekeeping or per-sonal care.

A telephone reassurance pro-gram makes regular telephonecalls to ill or disabled personswho are homebound.

In-home medical alert program(“Lifeline”) participants wear anelectronic device that sends asignal to a central dispatcher,often at a hospital, if theimpaired person falls or needshelp. Emergency assistance issummoned if the person does notanswer the telephone.

Chore services help with yard-work, minor home repair, andwinterization. In some areas,chore services also include helpwith household chores, groceryshopping, laundry, meal prepara-tion, and cleaning.

Homemaker services assist withlight housecleaning, shopping,laundry, and food preparation.

Home health aides help withpersonal care activities such asbathing, feeding, and toileting.Aides from a certified homehealth agency are trained andsupervised by a registered nurse.

Home-delivered meals are nutri-tious meals delivered to home-bound elders, usually at midday.

Days for home delivery of mealsvary from one area to another.

Congregate meals are inexpen-sive, nutritious meals in a groupsetting in senior centers or othercommunity places. Often, trans-portation is available for thoseunable to drive, and mealtimeincludes recreation and socialactivities.

Transportation services providevans or buses for travel to andfrom doctors’ appointments,rehabilitation sessions, congre-gate meal programs, and some-times grocery shopping and otheractivities. Transportation servicesmust be scheduled in advance.

Adult day centers are for peoplewho are physically or mentallyincapable of independent livingand need a supervised environ-ment during the day. Programsvary but often offer health andmedical monitoring, meals, andrecreational group activities. Theprogram enables some caregiversto continue their employmentand care for their relative at thesame time.

Day treatment helps individualswho are mentally ill or have amood or thought disorder thatsignificantly impairs judgment orbehavior. Psychosocial rehabili-tation is provided to assist thesepeople in their daily lives.

Home health nurses offer healthassessment and home health careto persons who need nursing


Possiblecommunityresources

• Companion orfriendly visitor

• Telephonereassurance

• In-home medicalalert

• Chore service

• Homemakerservice

• Home health aide

• Home-deliveredmeals

• Congregate meals

• Transportationservice

• Adult day center

• Day treatment

• Home health nurse

care at home. If needed, otherservices such as physicaltherapy, speech therapy, andhome health aide services areprovided.

Some of these programs charge afee, which may be determinedby ability to pay. Other servicesmay be free or have a voluntarydonation because they areprovided by volunteers, govern-ment, or charitable organiza-tions. Some programs also haveage, income, or other eligibilityrequirements. When calling anagency, state your needs asclearly as possible and remem-ber to ask about eligibilityrequirements and costs. Use thetelephone prompter on page 19to help you get the best informa-tion from agencies.

Contacting agencies requiresconsiderable time and energy. If

you feel you don’t have time tomake the necessary calls, enlistthe help of other family membersand friends. They can help makethe contacts or provide care foryour family member while youcall.

Your local Area Agency on Agingis a good place to find out aboutprograms and services in yourcommunity. It also may be calledSenior Service Division, AgingServices, or the Office on Aging.

If an agency representative can’tanswer your questions, ask tospeak to the supervisor. Avoidbecoming irritated or angry. Saysomething like “I appreciate yourassistance, but I’d like to ask yoursupervisor some additionalquestions.” If the supervisor is notavailable, ask for the best time tocall back. Before you hang up,ask if there is a direct telephonenumber for the supervisor.

Whether or not you need assis-tance now, explore communityservices for future needs. Find outabout services offered by publicand private sectors, and recordthe information for future use.You never know when you mightneed a service, and in a hurry.


Whencalling anagency,state yourneeds asclearly aspossibleandrememberto ask abouteligibilityrequirementsand costs.

Caregiving from a distance

Distance can make caregivingmore complicated. You may getcalls from neighbors and friendswho are concerned about yourrelative’s health or living situa-tion, but it’s difficult to knowhow well your older relative isfunctioning without being near.

Establish a network

You may be driving or flyingback and forth to repeated crisesor spending long weekends andvacations “getting things inorder” for your family member.If so, you will need to establisha network of neighbors, friends,and professionals in yourrelative’s community who canhelp assess your relative’s needsand arrange for services. In somecommunities, health care profes-sionals in public agencies andprivate businessesoffer the service ofcoordinating the careof older personswhose primary rela-tives live at adistance.

Think beforeyou moveyour family member

If you are an onlychild or have primaryresponsibility for yourfamily member, or ifthere are no relativesliving nearby, you


Whether ornot youneedassistancenow,explorecommunityservices forfutureneeds.

Telephone Prompter

Place this prompter by your telephone when you call about communityservices. It will remind you of the questions to ask.

My name is ___________

I’m caring for _________

I need _______________

Can you help me?

(If no):

Can you give me another nameto call?

(If yes):

What services do you provide?

What are the costs? How arethey paid?

What are the eligibilityrequirements?

How long must we wait?

Can you send a brochure orapplication?

To whom am I speaking?

Do I need to speak to anybodyelse?

may face the tough decision ofwhether to move your relativecloser to you. If you are consider-ing moving a parent to yourcommunity or into your home,carefully weigh the advantagesand disadvantages for yourrelative, yourself, and yourfamily. Since needs change overtime, weigh the decision for thefuture as well as for the present.

A move can separate your familymember from long-establishedroots that are not easily replaced.This can present a major prob-lem. The person may becomeentirely dependent on you forsocial and emotional support.This is more difficult if yourfamily member does not makefriends easily or is limited inmobility or verbal skills.


A move also should be consid-ered in light of your past relation-ship with your family member.Can you tolerate increased andintensified contact with yourrelative? Relationships that havebeen difficult in the past orsucceeded because of geo-graphic distance often requireextensive adjustment when thedistance is removed. Remember,arranging for needed services fora family member is sometimesthe most appropriate means ofcaregiving.

Support the local caregiver

If you live at a distance, it’scritical to support, in whateverway you can, the caregiver whohas day-to-day responsibility.Maintain regular contact. Callfrequently rather than expectingthe caregiver to call you. Ask“What can I do to help?” Make alist of tasks you are willing andable to do and share this list withthe caregiver. Perhaps you cangive the caregiver a break byspending a week with your olderfamily member, paying for ahousekeeper or respite careprovider once a week, or invitingyour older family member to visityou. Calling your older relativeweekly, making frozen meals, ormanaging the person’s financesmay provide needed relief for theprimary caregiver.

Caregivers who provide dailysupport to an older family mem-ber frequently feel they are not

appreciated. The person receiv-ing care sometimes takes out hisor her feelings of loss on thoseproviding the day-to-day supportand talks in glowing terms aboutsons and daughters who live at adistance. If this happens, do notallow the older person to putdown the primary caregiver inyour presence. It will help if youalso let the primary caregiverknow you understand the situa-tion and appreciate what he orshe does on a day-to-day basis.

Conflict can arise between familymembers who live near the olderperson and those who live at adistance, because of their differ-ent perspectives. If you spendonly a few days with your rela-tive, the care needs may notseem as great as they would ifyou had daily responsibility.Sometimes, too, the older personwill “perk up” in response to avisit by a rarely seen familymember and will fail to displaythe symptoms and difficultbehavior that occurred before thevisit. At times, someone will“dump” on one person and showa cheerful side to another. Thisbehavior can be related to dis-tance or to past relationships.

Don’t let apparent differences inbehavior between what you seeand what the caregiver has toldyou discredit the caregiver. Toaccurately assess your relative’sfunctioning, you may need anextended visit and a talk with

If you live at adistance, it’scritical tosupport, inwhatever wayyou can, thecaregiver whohas day-to-dayresponsibility.


professionals involved in yourrelative’s care.

Remember, too, that localcaregivers often have to compro-mise with the older person andaccept imperfect solutions toproblems. For example, if youfind your father’s home is not aswell kept as you feel it shouldbe, it may not be that familymembers are neglectful. Yourfather may be refusing help withthe household chores.

Be preparedfor dramatic changes

If you live at a distance and areunable to visit regularly, you maybe shocked at the deteriorationin your relative when you dovisit. You may become upsetbecause you have not been told“just how bad Mom or Dad is.”When changes are gradual,family members who have dailycontact often are not aware ofthe degree of change becausethey have adjusted to it gradu-ally. When you live at a distance,you have only two points ofreference—the last time andnow. The changes can appeardramatic.

You can help by concealing yourshock which could place an

additional burden on the care-giver. Unloading on the primarycaregiver may create just onemore stress. The caregiver maybegin resenting your visits orstruggle to make the ill personappear better than he or shereally is.

If you are a local family member,try to understand the differentperspective of out-of-townrelatives. Keep them informedand involved in decisions. Letthem know the needs andrequest specific help rather thanresent them for “not doingmore.” And, remember, showappreciation for any help youreceive.

Ask “Whatcan I do tohelp?” Makea list of tasksyou arewilling andable to doand share thislist with thecaregiver.

Placement in a care facility

A time may come when you orother family members cannotprovide direct care, or in-homeservices no longer meet yourolder relative’s needs. Placing thefrail older person in adult fostercare or a care facility is some-times the best decision for every-one. However, it might be one ofthe most difficult decisions youwill ever make.

Moving your family member to acare facility does not end yourcaring relationship. It merelychanges the relationship, andoften for the better. It signifies anextension, rather than the end, ofyour caring. You become avaluable member of the healthcare team by participating inplanning care, helping staff tounderstand your family member’sneeds, and monitoring the carehe or she receives.

Potential benefits of placementfor your relative include increasedsocial contact, recreational andsocial activities, and rehabilita-tion services. Also, when you’reno longer devoting your time tomeeting the physical and safetyneeds of your family member,you’ll be better able to meetsome of his or her emotional andsocial needs, which is veryimportant. Almost any trainedperson can assist your relativewith activities of daily living—dressing, bathing, and feeding.Family and friends, however, are

in the best position to sharespecial memories and give yourrelative a feeling of belongingand of being loved. These feel-ings add immeasurably to theperson’s quality of life.

Conclusion

Caregiving decisions should notbe based only on the needs anddesires of the older person. Alsoconsider the consequences ofcaregiving decisions for yourselfand other family members.Making these decisions is anessential part of self-care, whichin turn will help you provideeffective care for others.

Even if you follow the sugges-tions provided here, not every-thing will be as you like. At timesyou will wish you had donethings differently. You are onlyhuman. If you make a mistake,admit it, learn from it, and thengo on. There is no advantage incarrying feelings of guilt.

Too often caregivers focus onwhat they have not done well.Remind yourself of the manythings you have done well—thatwill make you feel better aboutyourself. Ask yourself “What aremy personal strengths? How haveI made a difference for my familymember? What things have Idone that I feel good about?”

You are doing many things right.Don’t fail to give yourself thecredit you’re due.


You aredoingmanythingsright.Don’t failto giveyourselfthe credityou’redue.

For more information

PNW publicationsSensory Changes in Later Life,

PNW 196Aging Parents: Helping When

Health Fails, PNW 246Hiring and Working Successfully

with In-home Care Providers,PNW 547

Depression in Later Life: Recog-nition and Treatment, PNW 347.

Driving Decisions in Later Life,PNW 510

Helping Memory-impaired Elders,PNW 314

Making Decisions about a NursingHome, PNW 563

Oregon publicationsTalking to Your Family and Doctor

about Difficult Health CareDecisions, EC 1386

If You Became Incapacitated, WhoWould Make Decisions for You?,FS 332

Oregon and PNW publications areavailable from Oregon State Univer-sity. PNW publications also areavailable from Washington StateUniversity and University of Idaho.Contact the offices below, or visittheir Web sites, for information onavailabilities, prices, quantitydiscounts, sales tax, and shippingand handling charges.

Publication OrdersExtension & Station CommunicationsOregon State University422 Kerr AdministrationCorvallis, OR 97331-2119Fax: 514-737-0817Tel.: [email protected]://eesc.oregonstate.edu/

Bulletin OfficeCooperative ExtensionWashington State UniversityP.O. Box 645912Pullman, WA 99164-5912Fax: 509-335-3006Tel.: [email protected]://pubs.wsu.edu/

Agricultural PublicationsUniversity of IdahoP.O. Box 442240Moscow, ID 83844-2240Fax: 208-885-4648Tel.: [email protected]:/info.ag.uidaho.edu/

http://eesc.oregonstate.edu/agcomwebfile/edmat/orderform.html

http://eesc.oregonstate.edu/

http://pubs.wsu.edu/

http://info.ag.uidaho.edu/

Pacific Northwest Extension publications are produced cooperatively by the three PacificNorthwest Land-Grant universities: Oregon State University, Washington State University, andUniversity of Idaho. Similar crops, climate, and topography create a natural geographic unit thatcrosses state lines. Since 1949, the PNW program has published more than 550 titles, prevent-ing duplication of effort, broadening the availability of faculty specialists, and substantiallyreducing costs for the participating states.

Published and distributed in furtherance of the Acts of Congress of May 8 and June 30, 1914, bythe Oregon State University Extension Service, Washington State University CooperativeExtension, the University of Idaho Cooperative Extension System, and the U.S. Department ofAgriculture cooperating.

The three participating Extension Services offer educational programs, activities, and materials—without regard to race, color, religion, sex, sexual orientation, national origin, age, maritalstatus, disability, and disabled veteran or Vietnam-era veteran status—as required by Title VI ofthe Civil Rights Act of 1964, Title IX of the Education Amendments of 1972, and Section 504 ofthe Rehabilitation Act of 1973. The Oregon State University Extension Service, Washington StateUniversity Cooperative Extension, and the University of Idaho Cooperative Extension System areEqual Opportunity Employers. $2.00

Published February 1988; reprinted June 2003.

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