time taken as a caring family

T I M E T A K E N A S A C A R I N G F A M I L Y

Susan Steiger-Tebb, Pb.D., and F. Robert Steiger, Ed.D.

Viewing caregiving from both a personal and professional angle has given the family in the following narrative amore holistic and realistic view of the role of family caregiver "Dad, " who lived caregiving on a daily basis, offerswisdom from experience for those facing the prospect of giving full-time (or part-time) care to loved ones. Theirpersonal caregiving experience has helped the author as a social worker see that all kinds of interventions andchoices need to be available to those who are caring for a loved one.

Take Time

Take time to Hold Their Hand,for their hands are what madethe things that give us comfort.

Take Time to Look in Their Eyesfor their eyes have seen ourworld through the changing times.

Take Time to Help Them Walkfor their feet have traveleda thousand miles.

Take Time to Listen to Them Speakfor we can learn fromtheir endless wisdom.

Take Time To Carefor someday we will all needsomeone to take time with us.

By Vicki Walleck (One of the students wrote this

poem after working in the Caregiver Unit at the Topeka

VA Hospital.)

I realized I needed to write this with myfather when 1 saw the Reflections call for thespecial issue entitled "No Map for the Joumey:Professionals Reflect on their Experience withEnd-of-Life Caregiving." Several months afterseeing the call I received a letter from my dadtalking about the future not in years but "asthe seasons come and go" and I realized thatif I were ever to write with my father about

our experience as family caregivers, it wasnow.

Twenty years ago, we became a "familywith Parkinson's Disease," as my father putsit. My mother, diagnosed at the early age of58 with Parkinson's, was now ten years intoher diagnosis and no longer able to functionon her own. At the same time, I made a careerchange and after 15 years of practicing socialwork, mostly with children and families butalso with people with renal failure, I movedfrom Califomia with my two grade-school-aged children to Kansas where I entered thePh.D. program at the University of Kansas.At the time of my acceptance interview, theyasked if I would like to start up a CaregiverSupport Unit in the Topeka VA Hospital. Notknowing what the term "caregiver" meant, butbeing the true social worker that I am, I said"sure" and thus helped to develop the firstcaregiver unit in any of the VA hospitals acrossthe country. In so doing, I Ieamed what theterm "caregiver" involved and have sincedevoted my academic scholarship to helpingbetter the plight of caregiving for familymembers. My parents remained in Califomiaand the following letters were sent to me bymy dad as I embarked on writing a nationalmanual of caregiving for the VA. Our family,especially my father, became more enmeshedin the daily caregiving of a loved one, mymother.

Now almost twenty years later and tenyears after my mom's death in 1997, Dadagreed to write this article with me, or alongsideme as it appears to be falling into place. The

REFLECTIONS - SUMMER 2008 37

Time Taken as a Caring Family

following are excerpts from letters written tome by my dad in November 1988 and April2007. To differentiate between our two voiceswithin the dated entries, my thoughts arewritten in italics.

November 10, 1988

Dear Sue,Surprise! Your Dad will write a letter, once-

in-a-while, when given a chance.

/ always loved getting letters from mydad because it was not a frequentoccurrence; Mom was the one who usuallywrote, and as is usual with the diagnosis ofParkinson s, writing became progressivelyharder for Mom. Dad occasionally wouldwrite to catch me up on the dailyhappenings in their lives. I savored theseinfrequent letters from Dad.

I'm at the public library, enjoying a day ofrespite. We have a lady staying with your Momfrom 8 A.M to 5 P.M today, and I'm on myown. 1 played 14 boles of golf this moming(decided that was enough for a first time out.)Then T went to Nancy's and finished a wiringjob I've been working at off and on for severalweeks. I've put in a shop light over theworkbench and put in outlets for my benchsaw and other power tools. I had lunch at afancy Mexican restaurant and am now at thelibrary.

As a family we talked about ways thatDad could have some time by himself andhe had hired someone to come each weekto allow him a "day off. "

I just finished re-reading your paper whichI received a couple of weeks ago: ExchangingCaregiver Weil-Being: A New Role forSocial Work. I've also studied through an Aidto Empowering: A Caregiver Well-BeingScale. I find both very interesting, althoughsome of the latter escapes me, largely due tothe research methodology vocabulary and thestatistical terminology.

My dad is a retired academic and so asI began to learn more about caregiving 1shared my writing with him both for editingcomments, which I valued, but also so hemight glean some of the information that Iwas ¡earning from other family caregiversand researchers. The first of his commentsfocuses on the fact that most caregivers thatI dealt with were female, as is the casetoday. Dad's comments made me realizehow he personalized what I was writing,wanting me to be sure to look at the maleside of providing care. My hopes wereraised in reading his letter because Irealized he might be obtaining somesuggestions to better care for himself in thematerials that 1 was sending him.

The following are some comments thatoccur to me:

1. If a choice must be made as to use of"she" or "he" in referring to the caregiver thenyours is an appropriate choice as it focusesattention on the major segment of thecaregiving population. (I'm not sure such achoice must be made however. Also, selectingterms to use generically on the basis ofmajority application can add a negative burdento the minority—whatever that minority maybe.)

2. Such focusing of the social workers'and researchers' attention on one segment ofthe caregiving population can tum that attentionaway from some possibly different questionsrelated to the male minority of caregivers.

Words of wisdom from a malecaregiver 's point of view who wanted tomake sure he was heard. At the time fewmale caregivers were being heard from andthe same is true twenty years later; it isrecommended that caregivers be studied bygender (Pinquart & Sorensen, 2003).Researchers have noted, as Dad tried topoint out to me, that over-sampling of oneparticular type of earegiver may inßuencethe development of interventions and thuswe are not able to best serve many of thoseproviding care (Berg-Weger & Tebb, 2003-2004).

38 REFLECTIONS - SUMMER 2008


3. Your paper refers to "loss of control"by the caregiver, as regards his/herenvironment, as a major source of frustration.I can attest that this is of tremendoussignificance. How to increase the measure ofcontrol, or to expand it to new, meaningfulareas, is something greatly sought by all of us.

4. When approached from the patient side,this loss of control has long been recognized.Now what ofthe areas of confiict that ariseover need for control by both patient andcaregiver in their interrelationship? How maythese by resolved, or risen above? Ideally, thecaregiver gains greater control of the sortneeded in the very act or process of enhancingthe patient's control. Some of this should bepossible; but the stuff of conflict on controlquestions is daily there.

Numbers 3 and 4 are areas we oftenwould talk about when together or on thephone, especially when there were conflictsbetween his loss and Mom's, such as in thearea of Dad's need to have friends, continueactive traveling, and be involved in hiscommunity. Mom was unable to comprehendhow she affected his ability to do the thingshe enjoyed. / believe these discussionshelped me to better understand thecaregiver's and the care receiver 's pointsof view as I worked with and supervisedstudents who provided support tocaregiving families. It greatly influenced myability to offer respite opportunities and tohelp others develop interventions withrespite provided. My research influencedby these comments looked at and continuesto look at how caregivers manage both theloss of and gain of control as their caringcontinues over time. For me it is the senseof or lack of well-being that is key to howwell a caregiving family manages (Berg-Weger, Rubio, & Tebb, 2000; Tebb, S.1995).

Well that's enough ofthat, possibly morethan I'm in position to knowledgeably give.But I want you to know that I think yourapproach is excellent. I haven't seen anyoneundertaking it from this approach, and it isgreatly needed. (It's also one more way to get

social work moving toward constructivemodels.)

In his career as an academicadministrator he had helped start an MSWprogram at a college and was very much infavor of social work programs buildingtheir theoretical base in what he calls the"constructive model" which is what I termthe strengths model. His use of"constructive " meant helping people seethat they had the ability to make positivechanges within themselves. (This is one ofthe first times I have realized that mystrengths-based social work model wasgrounded in my upbringing.)

My effort in all this is simply a way oftrying to share with you my deep respect forwhat you are doing. If anything I've writtensounds critical, believe me, it is not! Suggestionsand questions are my way of expressingsupport.

That last sentence has other applications.I've never been able to get your mom tounderstand that about me. Now, when I voicea question it is often interpreted as criticizingher or arguing with her. I guess that undemeathit has always been that way. Presentcircumstances seem to exacerbate it, however.Thus, I must choose my words with greatercare, lest I upset her. And emotional upsetsnow have severe physical consequences—consequences that then affect my ability towork with her and to "run smoothly." It ispotentially a neat control tool also, which sheis adept at using, all the while being totallyunaware ofthat fact. That's probably one ofthe toughest things I have to deal with.

As I reflect on this now, this is animportant insight into my parents ' marriageand also into how I relate to my husband.Active discord has always been the way dadhas interacted with all his children andgrandchildren. It is not a conversationalmode easy for many who have not grownup in it, as my mother and my husband.

REFLECTiONS - SUMMER 2008 39


We are doing reasonably "OK." Mom hasfairly extreme "on-off ' periods related to hermedication. During the "on" she can do mostthings for herself, and even forgets to expectthe "ofP' times. During the "off' she is greatlyhandicapped, forgets what her next medicationcan do for her, and is convinced this is theworst she has ever felt and she will never feelbetter than this again.

/ often wonder what it must have beenlike for my mom to go through these on-offtimes each and every day and not toremember that she would soon have a bettertime as soon as the medication kicked in.Looking at care receivers and ¡earning fromthem is one of the influences my mother hashad on my scholarship path. Often peopleworking with the sick person have no ideawhat she was like when healthy, and I haveencouraged, both in my teaching and inmy writing, those Involved with caregivingfamilies to get to know the care receiversas they are today and also as they werebefore they needed care. These perspectiveshelp in selecting interventions that mighthelp (Berg-Weger & Tebb, 1998).

\ don't want to burden you with any ofthis. It's just that Tve never written some of itbefore, and it keeps coming out, once I havestarted to write.

She is on a three-day no protein diet justnow. The effort is to see to what degree, ifany, protein interferes with her absorption ofher Parkinson's medication. She completesthat program tomorrow morning. "No protein"is leaving her with increased weakness andshakiness. I'll be glad when we're through it.If it shows us anything, then the trick will beto withhold protein through the day and giveher the minimum required at the end of theday. (Another problem for the chief cook, me).

Daddy hated to cook and Mom was agreat cook. He could put together abreakfast if he had to and open a can ofsoup when needed, but beyond that hedepended on Mom. Now he is the one whohas to plan her meals and fix most of their

meals. He did work with a dietician and mysister and I gave him meals ideas, but thishas never been an interest of his. But hedid it and now is not a bad cook, but stilldoes not enjoy cooking for himself.

We appreciated the copy of the bookleton Parkinson's that you made and sent us. I'mwriting for more of them to share with otherParkinsonians here at Rosewood.

Rosewood is a retirement community myparents bought into in 1987 with thethought that my mother would need nursinghome care and she could receive it thereand Dad could live in an apartment on thegrounds. Mom ended up living in thenursing care unit for eight-and-a-halfyears. (My dad remarried after Mom diedand moved to another community inCalifornia that had a sister facility. He wasable to transfer to the sister facility and hisnew wife bought in at a lower rate since hewas already a member. He continues to livein an apartment at this facility.) Thishousing plan worked well for Mom andDad.

Thanks for your regular letters. They area really bright spot in the week for both of us.I know how hard it is to write and howoverburdened you are—thus the letters areappreciated many times over.

My first year in college, the President swife told me 1 should pick a day each weekand write my family because I owed that tothem for all that they had given me. To thisday Sunday is the day I make contact withfamily, less now in writing but if I do writeit is on Sunday. At the time my father wroteme I was still writing each week on Sundayto my parents: it had been twenty-five yearssince I was a freshman in college.

Well, I must wrap this up and head forhome. My break day is about to come to anend. I 'm delighted it gave me a chance to writeat length. Love to all, and I love you.

Dad



November 17, 1988

Dear Sue,Came across this item in an American

Baptist newsletter for pastors. Coursematerials look expensive, but I think might beuseful for leaming what other caregivers aredoing. I feel sure this would not be a bible-thumper's conservative approach, but aconstructive one.

Dad had found material on caregivingand was sending it to me but also wantedto make sure that it would be helpful or if Ithought it was helpful and grounded inwhat I was seeing in other caregivers. Irealized upon reading this that dad waslooking for help in whatever medium hecould find it to help him deal with the dailylife of giving care.

Mom has been doing about the same. Surewish we could get some sort of "normal"schedule established—then we'd know howto plan our day and I'd be able to get at leastsomething done.

Oh, well—so it goes.

"Normal" soon began to mean notknowing and not able to have a regularschedule. He had to learn that his day couldnot be planned and often he felt as if hehad accomplished nothing during the day.This was very hard for my father becausehe usually had control of what happenedeach day before Mom became ill. It remindsme of mothers of young children who try tosay what they did during the day but canthink of nothing but that they cared for thechild, which is a huge accomplishment butone that is not recognized or appreciated;nor is caring for an older adult. 1 thinknow as Dad reflects back on the time hecared for Mom he finds that he eventuallybecame more comfortable with not living aregular schedule and now is probablybetter able to deal with the irregularities ofhis daily schedule today due to being over90 years of age.

Love, Dad

November 30, 1988

Dear Sue,Here is the copy ofthe manual you sent

me. It is an excellent piece of work,professional and humanly sensitive. Icongratulate you on it!

As supervisor of the Caregiver SupportUnit at the Topeka VA Hospital, one of mytasks was to write a manual for familycaregivers to be distributed to all VAhospitals. As I researched to prepare myselfto write the manual I began to have a bettersense of what my parents were experiencingand would send material to my dad to read.When I had a draft of the manual I sent itto him and this letter is what I receivedfollowing his read of the manual.

I've taken the liberty to proofread it andto make editing suggestions. Since you saidthis is a ñrst draft I hope some of this might behelpful. If I haven't caught what you want (insome ofthe changes I suggest) or if some ofwhat 1 have done is too trivial, then just"consider the source" and ignore it.

My relationship with my father hasalways been one of "interested discussion. "He and Mother provided us as we grew upwith opportunities to question, discuss, anddebate within the family. As I read this nowI realize that Dad s approach to me hasalways been one of good positive criticismand he has asked the same of me. As anacademic I have sought always to be opento constructive input from those with whomI work and live and I now better understandwhere that constructive criticism isgrounded.

For a part of this, you had some difficultywith gender references. I tried to phrasearound some of those. Others need to standas "her/his" or "his/her" as you have them(where primary reference is to the generalcaregiving situation. Where attention tumsmore specifically to the caregivers with whomyou work, you have gone entirely to thefeminine gender, which is fully appropriate.

REFLECTIONS • SUMMER 2008 41


This is in view of the fact that the highlypreponderant numbers of veterans (thus ofcare-receivers) are male and thus caregiversare female. Perhaps a note to that effect atan appropriate place (such as bottom of page32) would be helpful.

Dad s attention to gender hasencouraged me to look at the male view incaregiving. Much of the research is withfemales, but Dad's experience and hisurging made me more aware of the plightsof both male and female caregivers.

We're about as usual. Your mom is havinga bit more difficulty week by week. I fmd italmost impossible to know when to respond toher requests for help and when to insist thatshe try to do it for herself I think I encouragemore dependency by giving help, and I don'twant to do that. Her insistence often wins overhowever. We had a confrontation on that theother night, and she informed me I just didn'tknow what it is like to have Parkinson's. I toldher she has never experienced what it waslike to care for a Parkinsonian either so Iguessed she would just have to deal with theway I do it — I think it was a "thought stopper"for her for a little while at least.

/ remember reading this nineteen yearsago and thinking—yea for both of them tohave a "normal" argument, how healthy.My parents, before Mom was sick, hadgood healthy disagreements and could talkit out and compromise, but I had not seenthat in their relationship for some time; andhere it was, a brief glimpse of what theyhad had.

Getting her to bed now is almost likegetting a four year old to bed. The lights haveto be just so, her hips and shoulders must bealigned in the right position (varying from timeto time), she needs a drink, a Kleenex, herbed socks, etc. Then every 30 minutes shemust have help getting to the bathroom. It isgetting a bit thick. I'm coping OK for now.Prayer helps a lot; having a sitter once a weekmakes a difference (I very soon shoot fortwice a week); etc. There is friendly support

here (though few direct and immediate help)and we're making it For how long I don't know,but I feel it can be dealt with as each newlevel of need occurs. Out of paper; hope youcan read my scrawl.

Love ya!Dad

This last paragraph helped me with thecaregivers we were working with at the VAhospital. It provides coping ideas and thatis what most of our work with the caregiverswas, helping them find good copingmechanisms for themselves.

I asked Dad to reflect on these lettershe wrote almost twenty years ago and tothink about what he learned that might helpcaregiving families today. The following isthe letter I recently received.

May, 2007

Dear Sue,Ever since you sent copies of those three

letters of mine you had hung onto fromNovember, 1988, and asked me to write myperspective looking back on the caregivingsituation I was in at the time, I have been at aloss to know what to say. I have a severe caseof writer's block (and not only associated withthis "assignment"). The days are passingswiftly and the month of May (when I plannedto do the writing) is already more than halfover. So here 1 am at the keyboard looking fora way to make a start. I have decided simplyto begin writing (in the form of this "letter" toyou) with the hope that the effort will begin touncover some of what I have filed away inmy consciousness as being "in the past," andhave given little or no attention for severalyears.

The 1988 letters do trigger a line ofthought, so r i l try to develop that for a bit. Iremember well the circumstances ofdiscovering that your mom had Parkinson's.In the late spring of 1976,1 noticed a changein her walking. She was developing a shuffleand also a tendency to take small, mincing



steps while on her tippy-toes. When she gavethought to her walking she strode along in hernormal way, but when her attention waselsewhere she lapsed more and more into thisnew and strange way of movement. We wentshortly thereafter to Canada for the summerand stopped by Miniwanca on the way. Dr.Robert Shank of Washington UniversityMedical School was serving as CampMiniwanca physician at the time, so I took thisopportunity to discuss with him my puzzlementand concern regarding your mother's walking.He suggested we would do well to have herseen by a neurologist after our retum fromCanada in the fall. He did us the favor ofarranging an appointment with a leadingneurologist in the Chicago area.

A battery of tests and two thoroughconsultations with the neurologist produced atentative diagnosis of Parkinson's disease. We,as a family, were set upon a joumey we hadnot contemplated and of which we had littleknowledge. Through succeeding years wecame to realize that your mom's disease wasnot hers alone—it was ours as a family aswell. Year by year there were adjustmentsnecessary to enable her to keep functioningand to keep strong family bonds supportingher.

The need for physical support was obviousfor the most part, and family rallied aroundand increasingly provided that support.Changes were made in the home; changes ofmajor proportions were also made at thesummer home in Canada; and ongoingchanges were made in transportation,shopping, meal planning and preparation, andcountless other areas of family life.

Need for support in the realms of mindand spirit provided the greatest challenge, forthese are subtle in their origins, difficult tosense and to define, but tragically devastatingif not well and adequately served. As withmost long joumeys, we began in full strength,and found the going relatively easy. In its earlyyears, little seemed altered, little special effortwas required. As the years proceeded, bit bybit your mom experienced losses in body and

spirit resulting in behavioral changes, andincreasingly defining differing roles—that ofthe one requiring care and of those giving care.The letters you have unearthed reflect a time(roughly mid-way in the twenty yearParkinson's joumey) when those roles wereclearly in play, but had not yet been fullyaccepted by your mom. This was the time ofmultiple falls, broken shoulder, broken femurand continuing denial. For the caregiver(s) thetime brought frustration and fatigue.

Also we as a family were gaining abetter understanding of what relationshipchanges were occurring with Mom andthose of us giving the care, especially Dad,and how Mom had become so dependenton others for care and this was not in hernature.

A few years earlier your sisters had invitedme to their apartment (in Downer's Grove)for dinner, discussed their observations of whatwas taking place with their mom, and thenfocused their concem on me. The issue wasthe condition of my health of body, mind andspirit as I continued as primary caregiver inthis ever-changing scene. Their concem was,"We don't want you to die of her disease."That brought me to what, on reflection, I seeas a significant tuming point in the way I wouldftalfili my role. No longer could I permit myactivities and interests to be controlled anddetermined solely by the progress of yourmom's disease.

Nor could we as a family. That summer,for the first time since my parents boughtthe land in Canada, Mom did not go toCanada. Dad used the eare facility to carefor her that summer and hired people tolook in on her when he was in Canada.The summer before, her final summer inCanada, was not a rest for anyone. Dadwas exhausted so he did nothing while therebut read and relax, and my sister and I whowere there with our three active gradeschool and middle school children didnothing but cook, clean, and do laundry,which was no small chore because motherwas soiling herself most days and the


Time Taken as a Caring Famiiy

laundromat was half an hour drive away.The children could not understand whytheir mothers were so tired and not willingto play. My sister and I told Dad somethinghad to change because the summer was notgood for any of us. That next year thingsdid change; Mom fell and broke her hip.She only saw her beloved Canadian cabinin photos after that.

Three main concems became intertwinedin my caregiving efforts. Ideally, none ofthethree should be in competition with the othertwo—each should be pursued with ftjll regardto the others, in ways supportive each to all.And those three concems?

1. Attend directly and fully to those thingswhich must be done and which only you cando. If time and energy permit do whateverelse can be comfortably done, otherwise seekadditional help.

2. Share together with her, at whateverlevel she can ftinction, the ongoing relationshipof two people on a life path together. Memories,family stories, family activities, celebratorymoments, special events, sometimes evenfrank discussion ofthe disease process andwhat together we are able to do about it—these and other ways of sharing create thecontext within which meaning for everydayliving can be preserved and extended.

3. For yourself, look through, beside andbeyond the confines of her illness. Define andseek activities and relationships that arenurturing to your own sense of self. The"Servant Self must also be the "GrowingSelf," else burnout will cancel all hopes, alljoys and all meaning for both parties to thejoumey.

In retrospect, your mom's time of multiplefalls and fractures and the caregivers' time offrustration and fatigue mentioned aboveprovided the threat and the challenge whichconfirmed the necessity for me to actuallyweave those three strands into the fabric ofmy living. However vaguely they wererecognized in my mind before, now theybecame a lifeline for me.

Two months or so after you received thoseletters from me your mom sustained anotherfall, resulting in a broken hip. During herhospital stay she began having strangehallucinations. That, of course, is not unusualfor many folk confined in a strange bedfollowing an accident, and here it seemed topass very soon. It proved, however, to be thebeginning of observable dementia, for itrecurred, at first occasionally, then withincreasing frequency in the months thatfollowed.

Reflecting now on the course of mymother's illness I realize that as a familythe discussion of death is one that we donot shy away from. We did not withMother's; we discussed what she wantedin regard to end-of-life care and we havenot with Dad s. Each of us has talked aboutwhat we want at our own funeral and whatif any life-support measures we might want.This has been especially poignant becausemy daughter was diagnosed with ovariancancer at 25 years of age and we againhad this conversation, painful for me, butnecessary, thanks to what my mother helpedus realize is an important part of living.

Her fall and hip fracture marked asignificant tum in the joumey both for yourmom and for the rest of us as her caregivers.She was released from the hospital to thehealth center at the retirement facility wherewe lived. For a number of months there was aquestion as to how soon she would recuperatesufficiently to retum to our apartment. Herphysician, the Director of Nursing and familymembers monitored this issue careftiUy, andfinally came to consensus that the answer tothe time question was "Never." That, ofcourse, changed the caregiver role to one of"attending to," and no longer "caring for." Thatis another chapter in the story, another passagein the joumey, which would merit its ownaccount.

But as many of us know, the " attendingto " is also very stressful and manycaregivers of people in nursing homes fallill themselves. Maybe it is because they are



finally able to "let down, " and in doing thistheir immune system is affected and theyfall victim to many illnesses. Dad wasdiagnosed with colon cancer about a yearand a half after Mom began her residencyin the nursing care unit. Studiesdemonstrate that caregivers have a lowerimmune response and thus they are at riskfor cancer ( Kiecolt-Glaser, Dura, &Speicher. 199Î. Vitaliano, Zhang, &Scanian, 2003).

I conclude these musings with statementsof some learnings that came to me in or fromefforts to perform the caring role. I think allare important, even though some came to metoo late to really help to any great extent. Buthere they are as they occur to me now:

1. Although it is the patient who bears thechronic problem, the entire family suffers theproblem and is inescapably its victim also.

2. The caregiver could truly "die of thepatient's disease," if he/she permits burnoutto occur.

3. Don't take negatives personally whenexpressed by the patient.

4. Your loved one is a fractured person.You may not be hearing from the person withwhom you once shared life and love.

5. Live your life anyway, even when youmust serve her in crucial ways. Take regularand special breaks.

6. Find and/or create events/settingswhere she is included in group experience.Help her continue to belong.

7. Do not lay expectations on her that shecannot fulfill, even if she has carried that itemall her life before she became very ill.

8. Teach yourself the art of silent grief-dispose of grief, day by day as losses occur.

9. Project your own life not only "with,"but also "aside from" and "beyond" the stressesof everyday caring.

10. Seek all the help you can get ascaregiver. Call on every resource you canunearth. Even then it will never seem enough.Few primary caregivers are as fortunate as Iin having in the family both a social workerand a nurse as helpers, consultants, andsupporters. (Still, there were times when even

more insight and assistance could have beenhelpful.)

Of course every list should contain tenitems. OK, there are probably several morelearnings that hit me at the time or on the spot,but these are what come to me now. Thanksfor pressing me to do this, even against myapparent reluctance. It has been a goodexercise for me. It has helped me rememberand understand why I am touched by the painsand problems of many of my peers, especiallyhere at San Joaquin Gardens.

Love,Dad

Dad has continued to stay in aretirement community and, as he notes,because of what we shared as a caregivingfamily, we are able to help many approachand confront family issues around deathand dying. I know that my siblings, ourchildren, and J have grown from thiscaregiving experience. We have hadnumerous and long talks about how thisexperience has touched our family and fourof the gifts we received as a caregivingfamily are:

1. The experience has helped ourfamily understand and be touched by thepains and problems of other caregivers andhopefully will prepare us for when it is ourtime to care or receive it.

2. Because of what we learned as acaregiving family. Dad especially is ableto help many of the residents in hiscommunity to live "with." "asidefrom,"and "beyond" the everyday care they aregiving their loved ones. We, as Mom andDad's children and grandchildren, are allable to work with and be around olderpeople. All three of the grandchildren havea strong compassion and respect for olderpeople.

3. My siblings, our children, and 1have grown from the caregiving experience.We are more aware of the possible changesthat occur in families and how families needto continue to work, grow, and support each



other through the difficult times of needingcare.

4. We also are very aware that we willmore than likely be caregivers in ourlifetime and hope we can be as gracious atit as our Dad/Grandpa was. (Dad becamemore sensitive and appreciative of theeveryday little things that my mother didfor him each and every day that he did notnotice while she was well. He began to thinkabout how people in similar situations mightbe helped and what was helpful and whathindered caregiver's well-being.)

In writing this article with my father Irealized that I also have grown into thecaregiving role over the past twenty years.As I noted earlier I had not heard the term"caregiver" until I started at the VA hospitalin Topeka. While there I set up a caregiverunit in the hospital and wrote the VA's ñrstnational caregiver manual. Upon leaving theVA, I continued to direct my scholarship inthe area of caregiver well-being and withcolleagues have written over 30 articles andtwo books on the subject. My teaching isenhanced by our family's experience becauseI can speak about caregiving both from theheart and as an academic and, I hope, ambetter able to encourage new social workersto develop caregiving interventions that willhelp caregivers gain control and better well-being. I think more than anything thisexperience has helped me to see thatcaregivers and their families need options, allkinds of options for end-of-life care and thatthey need to be allowed to make the decisionsthat best suit their situation no matter whetherit is understood by others or not.

I ftnd that the following quote by OlympiaDukakis (May 2007) describes what we as afamily came to leam, believe, and support inour twenty years of caregiving:

"Whether the illness is cancer orAlzheimer's, there can be no hard-and-fastrules about life after diagnosis—except thatyou need to be honest and flexible. It's aninherently personal process, and I doubtthat care giving decisions are ever easy.

But made conscientiously ...those decisionsshould be respected. " ( p.35)

References

• Berg-Weger, M., & Tebb, S. (1998). Casemanagement with family caregivers oftheelderly: A strengths approach. Journal ofCase Management, 7(2), 67-73.

• Berg-Weger, M., & Tebb, S. (Winter 2003-2004). Conversations with researchers aboutfamily caregiving: Trends and futuredirections. Generations, 27(4), 9-13.

• Berg-Weger, M., Rubio, D., & Tebb, S.(2000). The caregiver well-being scalerevisited. Health and Social Work,, 25(4),255-263

• Dukakis, O. (May 2007). Heartfeltdecisions. AARP Bulletin, 48(5),35.

• Kiecolt-Glaser, J. K., Dura, 1. R., &Speicher. C. E. (1991). Spousal caregiversof dementia victims: Longitudinal changes inimmunity and health. PsychosomaticMedicine, 53(4), 345-362.

• Pinquart, M., & Sorensen, S. (2003).Association of Stressors and uplifts ofcaregiving with caregiver burden anddepressive mood: A meta-analysis. Journalof Gerontology: Psychological Sciences555(2), pp.112-128.

•Tebb, S. (1995). An aid to empowering: Acaregiving well-being scale. Health andSocialWork. 20(2), 87-92.

" Vitaliano, P., Zhang, J., & Scanian, 1.(2003). Is caregiving hazardous to one'sphysical health? A meta-analysis.Psychological Bulletin, 129(6), 946-972.

Susan Tebb, Professor, Ph.D, is aProfessor at the St. Louis University Schoolof Social Work in St. Louis, Missouri.Comments regarding this article can be sentto: tebbsc(^slu.edu.


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