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Editors’ Column
In this issue...Editors’ Column ............. 1Put a Face on Stroke ....... 1A Caregiver’s Story .......... 2SCALE program .............. 3Talbot Co. Support Group .. 4Stroke Awareness Fair ...... 4“MAP” Website .............. 5How-to ........................ 610 Tips for Caregivers ...... 6Book Review ................. 8
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Spring 2011
This issue of the MSA News is dedicated to caregivers, those individuals who have found themselves in the position of taking care of a loved one. While I was research-ing this topic, I ran across the following article which seems to summarize the fears that caregivers have when faced with a role that no one has prepared them for. JC
What are we afraid of?Caregiver fears…rational or otherwise. Whenyoubecomeacaregiver,yourlifechangesforever.Youcannotrecapturethepast,andinfacinganunknownfuture,youmaybeovercomebyfear.MyownexperienceprovedIwassobusytryingtobethebestcaregiverpossiblethatIdidn’ttakethetimetodealproperlywithallthefearsthatwereaccumulatingatthebackofmymind.Iwasn’tadmittingtothemortalkingaboutthem. Asaresult,thesefearsbecomemagnified;wecanspendtoomuchtimefacingthemalone,feelingthatthereisnooneelseouttherewhocouldreallyunderstandwhatit’slike.Itdoesn’thavetobelikethis.
What are some of the fears we know too well?• FeAroffinancialproblemsrelatedtocaringforalovedone—thatthemoneywillrunoutwhileathomeorthatthere
isn’tenoughmoneytoevenconsiderinstitutionalization,nomatterhowdesperatelyneeded.• FeArthatyou’llfailasacaregiver—thatyouwon’tbeabletokeepupthepacephysically.Howmanytimeshaveyouaskedyourself:“HowlongcanIgoondoingthis?Howmanymoredays,years,beforeIfallapart?”Forhowlonghaveyoutriedagainstalloddstosmileandsay,“We’remanaging,thankyou”?• FeAroftheinabilitytohandletheemotionalstress.Youfinallystarttounderstandwhatthestressisdoingtoyou;you’reafraidyou’llneverregainyouroriginalself:thatpersonfilledwithenergy,curiosityandoptimism.• FeArofhavingtowatchalovedone’spainandsuffering.Feelinghelplesstostoporevencontrolit.
Advocacy
YouareinvitedtobecomeamemberoftheAmericanHeartAssociation/AmericanStrokeAssociation’s(AHA/ASA’s)You’re the Cure(YTC)network,adiverseteamofalmost200,000individualsfromacrossthecountrywhofeelpassionatelyabouttheneedtoputintoplacepolicychangesthatwouldimprovethehealthofallAmericans. YTCmembersincludesurvivors,caretakers,researchers,healthcareprofessionals,familiesandindividuals,allofwhomunderstandthepowertheyhavetoinfluencelawmakersatboththefederalandstatelevelstomakechangehappen.
Putting a face on stroke
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A Caregiver’s Story
Living with a strokeAnne Sterlock Donwas62yearsoldandretiredwhenhehadastrokeonApril8,2009.Donhadbeeninreasonablygoodhealthpriortothestroke—hewalkedthedogthreetimesaday,hadnotsmokedformorethan30years,andhadlostsomeweight. Whenthestrokeoccurred,IwasathomewithDonandcalled911immediately.WegottotheERinlessthan45minutesfromtheoccurrence.Whenitwasdeterminedthataclothadcausedthestroke,hewasgivenTPA.Initially,hehadnomovementonhisrightsideandcouldnotrespond.AfterseveraldaysofjustrestintheICU,hewasstartedonbriefPT,OT,andSLP,andlateratanursinghomeforsub-acuterehab.Heworkedveryhardathistherapieswhilethere.Hehadseveralhealthissuesfromthestroke—urinarytractinfections,excessivebleedingfollowingaprostateprocedure,andseizuresthatsenthimbacktothehospitalduringthefirstmonthsafterthestroke.Eachtimehereceivedtherapywhenhefirstreturnedhome.Laterhewasabletoattendoutpatienttherapy3-4daysperweekforoneyear.Thecenterwasforclientswhohadhadastrokeorbraininjury.Idrovehimeachdayandwatchedashecontinuedtoimprovefromhardworkanddeterminationbothattherapysessionsandathome. Oneofthespecialpartsofthistherapyunitwasweeklygroupsessionswithaneuropsychologist.MeetingwiththedoctorallowedDonandmetoseethathewasnotaloneinwhathewasgoingthrough.AsDon’sprimarycaregiver,Ialsohadthesupportandcomfortofhisparents,foursistersandtheirfamilies,andseveralsetsofverygoodfriends.Ourthreedaughtersarescatteredacrossthecountryandcouldnotbepresentonaregularbasis.Wekeptintouchviaphoneandemailandvisitswheneverpossible.
How do you not lose the ability to care for yourself, becoming so involved in caring for another? Atfirstwhenmyhusbandwashome,Ihadtodoquiteabitforhimortohelphim.AsOTandPTprogressed,hewasabletodomore.Iwasthenabletotakesometimeformyself.IwouldwatchadifferentTVshowbymyselfinthebedroom.I
wouldwalkthedog.Ikeptmydoctor’sappointments.Igotmyhaircut. AsDonimproved,Iwasabletoleavehimbyhimselfinthehouse.IalwaysASKEDifitwouldbeokaywithhimifIwentouttowhereverIwasplanningtogo.IwouldgivehimanapproximatetimeIwouldreturnandwouldcallifIwasgoingtobelaterthatexpected.Myerrandtime
lengthenedasheimproved.IleftthingsnearbythathemightneedwhileIwasaway.Iwasnotawayatmedicinetime.Ifmystayawayfromthehousewasextensive,Iaskedsomeonetostayandvisitwithhim.Iwouldcallbacktoseeifeverythingwasstillokay.WhenIwasvisitingmyhusbandinthehospitalornursinghome,Ihadnumerouspuzzlebooks(crossword,Sudoku,etc.)inmycase.ThisgavemesomethingtodoNOTrelatedtohiscarethatIcouldstart/stopeasilyduringtheday.Icontinuetocarrythesepaperbackpuzzlebookswithmeforhistherapyanddoctor’sappointments.Also,whenhewasinthehospitalandrehab,Iwould“walkthehalls”periodically,ratherthanjustsittingforhours.Neverfarawayfromhisroombutjustenoughtogetoutsomeofthecobwebsandkinksinthejoints.
Anne and Don SterlockCalaway Gardens, GA
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Caregivers’ fears(continued from page 1)
• FeArofmakingthewrongcaredecision,leadingtoanunexpectedoutcomeandthepossiblewrathofotherfamilymembers.• FeArofdealingwithalovedone’sincontinence.CanIchangeanadult’sdiapers?HowdoeshefeelwhenIhavetodothis?• FeArofdementia:thatyourlovedonewillnolongerbeabletorecognizeyou.• FeArofaggressioncausedbyillness:howwillyoudealwithalovedone’sviolencetowardsyou?• FeArthatyourlovedone’sneedswillbesacrificedtothoseofthesystem.• FeArofseeingyourownfutureinalovedonewhoisdeteriorating.
• FeAroflosingyour“self”—ofbecomingsoinvolvedincaringforanotherthatyouridentityislost,yourneedsremainneglectedandunfulfilled.• FeAroffacingthefuturealone,oflosingthecomfortofanembrace,theassuranceofunconditionallove.•Finally,thetremendousFeArofadmittingtoemotionsyouare“notsupposedtofeel”—frustration,anger,amomentarydesiretostrikeoutortoflee. Allcaregiverfearsarereal,fornootherreasonthantheyexist.Aretheyrational?Eachofushastodecidethisforourself;wemayneedhelptodothis.Ifyouhavetroubletalkingwiththepersonyoucarefor,talktosomeonewhohasbeenthereortalktoaprofessional.
Communicatehowyouarefeeling;learnhowsomeonehasdealtwiththeirfears.It’snotwrongtobeafraid;itgoeswiththeterritory.Itiswrongtosufferaloneandinsilence. Noonecanperformtheactofcaringwithouthelp.Rememberthatweare,afterall,onlyhuman;caregiversaren’tperfectalthoughwecankillourselvestryingtobeso. Pleaseacceptsupport.Rememberthejoyyoubringtothoseyouloveandthankyourselfeverydaythatyoucare.This article was reprinted with permission from Karen Henderson,Founder/CeO, Long Term Care Planning Networkwww.ltcplanningnetwork.com
SCALE’s Family & Caregiver Education & Support Program Adynamicandinteractive8-weekseriesproviding:
•educationaboutstroke&aphasiacommunityresources•informationaboutthelatesttechnologiesforaphasia•educationalresources(DVDs,websites)counselingtopromoteindependence&familyadjustment•strategiestodevelopcoping&caregivingskillstrainingabouthowtosupportcommunicationwithyourfamilymemberwithaphasia•trainingabouthowtosupport&advocateforyourfamilymemberwithaphasiaineverystageofrecovery
Thisprogramisopentoallfamilies,caregivers&friendsofpeoplewithaphasia,regardlessofwhenthestrokeoccurred.MembershipinotherSCALEprogramsisnotrequired.OurgoalistomeettheneedsofthosewhocareforindividualswithaphasiathroughouttheENTIRErehabilitationcontinuum.Professionalcounselorsserveasguestspeakersthroughouttheprogramandspeech/languagepathologistsprovidetrainingintechniquestofacilitatecommunicationathomeandinthecommunity.Peersupportandinformationaboutaphasiaandcommunityresourcesarealsoavailable.TheprogramwillbeofferedonThursdaysfrom1:00-3:00beginningApril28th,2011throughJune16th,2011.Formoreinformation,pleasecontactDeniseMcCall,ProgramDirector,[email protected]
SCALE (the Snyder Center for Aphasia Life Enhancement) is a 501(c)3 organization dedicated to improving thequality of life for people living with aphasia and their families.
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Suppoort Group of the QuarterThere are many excellent support groups throughout the state and we focus on one group in each of our newsletters.
If you would like to see your group highlighted, contact Judy Crane at [email protected]; we’d love to hear from you!
Talbot County Stroke Support Group TheTalbotCountyStrokeSupportGroupbeganseveralyearsagowhenChristinaBallgotherpictureinthepaper.ShewascelebratingthedesignationofTheMemorialHospitalatEastonasaregionalstrokecenter. MelissaMalcolmsawChristina’spicturethatdayandsomethingclicked.Eversincesufferingherownstrokein2004,shewantedasupportgroupofothersurvivors.ShecontactedChristinaandtheyagreedtogettogetherforapreliminarymeeting.However,Christinaknewofsomeoneelsewhowasinterestedinagroup.RuthArnoutsalsowantedateamtodiscussideasandsituations.ThethreewomenmetandourSupportGroupwasformed. OurfirstmeetingwasinApril2008.Werememberonemeeting,inthebeginning,whenonlythreeorfourpeopleattended.Alotoftimewas
MSA NewsEditors: Judy Crane Sean Mackey Jose Maldonado Designer/ProductionArtist: Nancy Seiss Maryland Stroke Alliance415 N. Charles StreetBaltimore, MD 21201
Stroke Awareness Fair in May TheStrokeAwarenessTeamatGoodSamaritanHospitalisholdingaStrokeFaironFriday,May20,11am-1pmforstrokesurvivorsandcaregivers/friends.ThefreeeventcelebratesStrokeAwarenessMonth,andpromoteseducation,prevention,andcommunityresources. InformationboothsandactivitiessuchasWiiandTai-
Chiwillbeavailableaswellasnetworkingopportunitiesforstrokesurvivors,andrefreshments. ThefairwilltakeplaceintheParkerConferenceRoom,locatedonthefirstfloorofthehospital.Parkingisfree. Formoreinformation,[email protected].
spentinthoseearlydays,tryingtofigurewaystoincreasetheattendance. AmonthlynewsletterwasborninApril2009.Attendancebegantoriseasthewordspread.Theaveragemonthlymeetingnownumbersaround30people.Butweweren’tcontentwithrestingonourlaurels.InterestinaPeerMentorshipProgramdevelopedasourgrouprememberedtheirfeelingswhentheywerefirstdiagnosedwithastroke. Aftermonthsofresearchanddevelopment,wearenowtrainedtovisitpatientswhoarestillinthehospitalunitaftertheirstroke.Ourgoalis
tomentoranyinterestedstrokepatientwhomaywanttoseeus.WehaveaweeklyrotationschedulethatstartedinMay2010andcontinueseverySundayafternoon. Ourgrouphasvolunteerdriverswhoofferridestoandfrommeetings.Wehavepetparentswhowillvisitanyonewhosespiritsneedalift.AGuestSpeakerCommitteeinvitesspeakerstodiscussvarioushealthissueseachmonth. Wedistributeflyerstomedicalofficesandtherapycenterstospreadthewordaboutourgroup.And,we’renowaffiliatedwiththeMarylandStrokeAlliance. Inshort,we’reavibrantcommunityofindividualswhohavesufferedastroke.Wedon’tallowstroketoidentifyus;wearelearningtoacceptournewlivesandembracetherenewedopportunitythathasbeengiventous.
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Maryland launches a new MAP website OnDecember1,2010,GovernorMartinO’MalleyannouncedtheunveilingoftheMarylandAccessPoint(MAP)website,www.marylandaccesspoint.info,aone-stopresourcethatgivesMarylandersinformationonlongtermsupportsavailableinMaryland. “WeareproudtoofferourMarylandcitizens,especiallyourolderadultsandpersonswithdisabilities,thispowerfulMAPwebsitethatwillgivethemusefulinformationonlongtermservicesandasinglepointofentryforaccesstopubliclyfundedprogramsandbenefits,”saidGovernorO’Malley.“TheMAPwebsiterespondstotheurgentneedtosimplifythewayinwhicholderadults,personswithdisabilities,andcaregiversaccessinformationaboutservices.”TheMAPwebsitehelpsindividualsassesstheirneeds;explainscareoptionssuchasin-homecare,caregiverresourcesandcommunityhealthandsocialservices;provideslinkstoservices;andgivesinformationonfinancialsupportavailable. Duringtheunveiling,SecretaryofDisabilitiesCatherineA.RaggioandSecretaryofAgingGloriaLawlahparticipatedinaninteractivepresentationofthewebsite.Theywerejoinedattheeventbymorethan125representativesofthevariouspartnerswhoparticipatedinthedevelopmentoftheMAPwebsite,includingtheDepartmentofHealthandMentalHygiene,theMarylandDepartmentofVeteranAffairsandtheMarylandDepartmentofHumanResources“Accesstoinformationaboutsupportsandservicesisvitalforpeoplewithdisabilitiesofallages,”saidSecretaryRaggio.“ThisnewwebsitewillhelppeopleidentifyresourcesineveryareaoftheStateandempowerthemtomakechoicestoliveandflourishinourcommunities.” “ThepassageoftheAmericanswithDisabilitiesAct(ADA)haschangedtheexpectationsofpeoplewithneedsforlongtermservicesinourcountryandState,”saidSecretaryLawlah.“WebelievetheMAPwebsitewillenablethemtomoreeasilyfindthesupportstheyneedtoremainintheirownhomesandcommunity.” TheMarylandAccessPointwebsiteispartoftheNationalAgingandDisabilityResourceCenter(ADRC)initiativefromtheU.S.AdministrationonAgingandCentersforMedicareandMedicaidServicesoperatingin54statesandterritorieswiththepurposeofprovidingstreamlinedaccesstoinformationonlongtermsupportsandservices.Formoreinformation,visittheMAPwebsiteatwww.marylandaccesspoint.info.
YTCmembersusethepower of constituency;theyunderstandthatlawmakerslistentoandwanttopleasethepeoplewhovotedthemINTOofficeinitially…andhavethepowertovotethemOUTofofficeinthenextelection.YTCmembersusethepowerofconstituencytolettheirelectedofficialsknowthefactsaboutheartdiseaseandstrokeandhowtheseconditionsaffectthelivesandthefinancesofthecommunitiestheyserve.Andtheyasktheir
Putting a face on stroke(continued from page 1)
electedofficialstosupportspecificpoliciesorbillsthat,ifpassedandsignedintolaw,wouldimprovecardiovascularhealthandultimatelyreducehealthcarecosts.AsamemberoftheMarylandStrokeAlliance,youalsohavethepower of survivorship.Youcan“putafaceonstroke”bytellingyourpersonalstoryandhelpingthelegislatorconnectyourexperiencewiththeactionyouareaskinghimtotake. You’re the Curememberscaninfluencepolicyinmanyways,includingsending
e-mails,writingpersonalletters,makingphonecalls,makingpersonalvisitseithertothelegislator’shomeorCapital(stateorfederal)office,providingand/presentingtestimonyatapublichearingorwriting(orsigning)alettertotheeditor.AHA/ASAprovidesongoingsupportbykeepingyouupdatedontheissuesandpendinglegislation.Howeveryouchoosetocommunicate,Become an advocate for advancing the mission of the Maryland Stroke Alliance...TODAY!!
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How-to...
Caregiving is a job and respite is your earned
right. Reward yourself with respite breaks often. Watch out for signs of
depression; don’t delay in getting professional help when you need it. When people offer to help, accept the offer and suggest specific things that they can do.
Theseareheadyquestions,andonesthathavebeendiscussedoftenattheNationalFamilyCaregiversAssociation.Wehavelookedforanswersinourownexperiences,inbooks,fromprofessionals,andfromotherfamilycaregivers.We’vethoughtlongandhardabouttheseissuesbecausetheyareatthecoreofoursearchformeaningandourneedtohaveprinciplestolivebyasfamilycaregivers. Wecallourapproachtocaregiving,FourMessagestoLiveBy.Theyarethefundamentaltenetsofourphilosophy.Theyhavehelpedthousandsofcaregiverstodateandwehopeyouwillusethemasguidepostsinyourownpersonalsearchforasenseofdirectionandinnerpeace.
How can you find a balance
between your own needs
and those of your loved ones?
How can you gain
a feeling of confidence
in your abilities and have
a sense of pride in
your achievements? What does it m
ean
to be a happy person
when you are a family
caregiver?
1. Believe in Yourself—and Take Charge of Your Life Trustyourinstincts.Letyourinnervoiceguideyourdecisionmakingforyourlovedoneandyourself.Believingin“You”isthefirststeptowardbuildingconfidence,anessentialtoolincopingwithbeingafamilycaregiver.2. Protect Your Health Takingcareofyourselfisnotaluxury...it’sanecessity!Ifyourhealthiscompromised,it’shardforyoutobeaneffectivecaregiver.Yourlifeishardenough.Foryourownsake,andyourlovedone’s,takegoodcare.3. Reach Out for HelpFamilycaregivingisnotaone-personjob.Askingforhelpisasignofstrength,NOTasignofweakness.Helpcomesinvariousforms,fromothers
pitchingintohavingmoreinformationaboutyourlovedone’sconditiontosympatheticunderstandingfromyourboss.4. Speak Up for Your Rights Inyourdailylife,speakupforrespectandmoresupportforyourselfandyourlovedone.Speakupfortherightsofallfamilycaregiversbytalkingabouttheneedforeducation,financialsupportandbetterchronicillnesscare.
About NFCAThe NFCA educates, supports, empowers and speaks up for the more than 65 million Americans who care for loved ones with a chronic illness, disability or the frailties of old age. NFCA reaches across the boundaries of diagnoses, relationships and life stages to help transform family caregivers’ lives by removing barriers to health and well being.
from the National Family Caregivers Association
Tips for Family Caregivers Educate yourself about your loved one’s condition and how to communicate effectively with doctors. There’s a difference be-tween caring and doing. Be open to technologies and ideas that promote our loved one’s indepen-dence. Trust your instincts. Most of the time they’ll lead you in the right direction.
Caregivers often do a lot of lifting, pushing and pulling. Be good to your back. Grieve for your losses, and then allow yourself to dream new dreams. Seek support from other caregivers. There is great strength in knowing you are not alone.Stand up for your rights
as a caregiver and as a citizen.
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“...things don’t HAVE to be done. Don’t put extrapressure on yourself—thesituation is stressful enough.”
As a caregiver, where have you found guidance and support, both physical and emotionally? Beforemyhusbandhadastroke,Ihadanoccasiontovisitatherapist.Severalmonthspost-stroke,Istartedgoingbacktoher.Iwasabletotalkaboutmyconcerns,andfeelingofanxietyandshortcomings.Oneofthebestthingsshetoldme,whenIrecalledmydailyactivities,wasthatthingsdidn’tHAVEtobedone.Ialsotalkedextensivelywithournewprimarycarephysician.Hewasabletogivemealow-dosedailyanti-anxietypill.Thishashelpedmeremaincalmerwiththeextrademandsonmytime.Ialsokeptintouchbyphonewithseveralreallygoodgirlfriends.TheylistenedwhileItalked.ThefactthatDon’sfoursistersandhusbandsvisitedalsogavemesupportthatwewerenotalone.
What advice would you give someone who has recently become a caregiver?• Eventhoughyourlifehasbeenturnedupsidedown,keepsomesemblanceofnormalcy.Justcominghomefromthehospitalornursinghomeandwalkingourdoghelpedmystressattheendoftheday.
• Becausevisitinghoursareusuallynotearlyintheday,sleepinifyoucanorjuststayinbedalittlebitlongertorest.Noteveryday,ofcourse,butonceinawhile.Othermorningscanbeforerrands
orat-homeneeds.• Besuretoeatseveraltimesaday.Don’tskipmeals.Gotothehospitalcafeteriajusttogetabreakfromthemedical“stuff.”Eatyourmainmealatthemiddleoftheday.Thismakescominghomeeasierifyoudon’thavetofixabigmeal.Havesometypeofpackagedbar/snackwithyouatalltimes—youneverknowwhenyouwillneedit.
• AlwayshaveOTCmedssuchasTylenolwithyouforaches,pains,orheadachesthatoccur.
•Useemailtonotifyseveralpeopleatthesametimeofupdatessoallgetthesameinformation.Specialpeoplecanbenotifiedbyphonebutuseatypeofphone-treetocutdownonYOURcalls.
• Eventhoughittakestimeinitially,takenotesofthedailyhappenings,doctor’sinformation,etc.This“journal”comesinveryhandylaterduringdoctor’sappointmentsorinsurancediscussions.
• Beanadvocateforyourspouse,especiallyifhe/sheisunabletocommunicate.MakesureyouANDyourspouseunderstandwhatishappening.
•Keepaspositiveanattitudeaspossibleaboutyourlovedone’srecovery.Realizethatthereisnotimetablefollowingastroke.Eachperson’scaseisdifferent.Seeanyamountofchangeasgrowth.Yourlovedonewillnotbethesamepersonasbeforethestrokebutwillreachwhatonedoctor
calledthe“newnormal.”•Havesomeonehelpyouwithmanyofthenewactivitiesinwhichyouwillbecomeinvolved:doctor’sappointments,gettingandgivingmeds,handlingnewprocedures.Ihadtodealwithmyhusband’scatheter,administerantibioticviaapicline,andgiveLovinoxshotsinhisbelly.Askforhelp,eithertobetherewithyouorhandlesomeofthemforyou.
•Keepallofthepapersfromdoctors,hospitals,rehab,insurancetogether.Organizebytopicanddate.
• Bepatientandhelpyourlovedonetonotexpecttoomuchtoosoon.
•Whenyourlovedoneisintherapy,encouragehim/hertodotheactivitiesasmuchaspossible.
• Last,butnottheleastofmyadvice,istolaughasmuchaspossible.Laughtogether,evenatthesilliestofthings.
What is your husband involved in? Does he have interest/hobbies? Donlikedphotographybeforehisstrokeandthisisoneactivitythathascarriedover.HeevenASKEDforadigitalcameraforhisbirthdaylastyear.Hisabilitytoreadhasreturnedandheisabletoreadlibrarybooks.Hisnewestinterestisjigsawpuzzles—his
fatherhasalwaysdonethem.Henowgetsthem(largerpiecepuzzles)fromhisdadandwe
workonthemtogether. Donenjoysgoingouttoeatandspendingtimewith
Caregiver’s Story(continued from page 3)
“...ask for help...be patient...laugh.”
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Reader’s SurveyBook Review
Sean Mackey Astrokecanforeveralterthelifeofnotjustonepersonbuttwoinaninstant.Forthepersonwhohashadastroke,simpletaskssuddenlybecomedifficultorimpossible.Forthatperson’spartner,lifeseemstorevolvemostlyaroundthestrokesurvivor’sneeds.Suchadrasticchangenaturallyrequiresmakingaseriesofsometimestaxingadjustments.Inthisbook,twoexpertsinstrokerecoveryhelpcouplesdealwiththeimpactofstrokeontheirlivesandrelationship. SaraPalmer,Ph.D.,isapsychologistandassistantprofessorintheDepartmentofPhysicalMedicineandRehabilitationattheJohnsHopkinsUniversity.
When your spouse has a stroke
JeffreyB.Palmer,M.D.,isaprofessorandDirectorof
PhysicalMedicineandRehabilitationatJohnsHopkinsUniversity.Drs.SaraandJeffreyPalmerexplainhowtosuccessfullyconfrontthreemajorchallengesafteryourspouseorpartnerhasastroke:providingqualitycare
foryourpartner;maintainingorrebuildingyourrelationship;caringforyourselfasanindividual. ImetSaraattheTowsonStrokeGroupin2006.Sheinterviewedmywifeandmetogetherandseparatelyinourhome,andshelefttwosurveys.Onewasforthesurvivorandtheotherforthespouse/caregiver.Bothsurveyswere
confidentialandwereverypersonal.Manycoupleswon’tdiscusssex,loneliness,burdenandmoneythemselves,butSaradiditseriouslyandsensitively. Throughtheexperiencesofthecouplesinterviewedinthebook,readerswilllearnstrategiesforimprovingessentialaspectsoftheirrelationship,includingcommunication,acceptingrolesandresponsibilities,andsexuality.Alistofpracticaltipssummarizesthemainpointsofeachchapter,providingahandyreferencefordealingwitheachday’schallenges. Thisbookfocusesonthepsychologicalandsocialconsequencesofstrokeandthedeeplypersonalsideofcaregiving.When Your Spouse Has a Strokewillrelievesomeofthecouples’burdensandhelpreinforceahealthypartnership.
hasbeenabletoexpandhisactivitiesbyattendingSCALE(SnyderCenterforAphasiaLifeEnhancement).ThisinnovativeapproachtospeechtherapyinvolvesinteractiveclassesforSCALEmembers,basedontheirinterests.DonhasespeciallyenjoyedclassesinTravel,PhotoTalk,Cards&Games,andanewinterestinYoga.Bybeingwithotherswhohaveaphasia,hisconfidencetocommunicateinwhateverwayhecanhasincreased.
How long did it take before you started facing your fears about your new life with a stroke survivor? What are those particular fears you are dealing with? Myhusband’sstrokewascompletelyunexpected.Inthebackofmymind,Ifearthathewillhaveanotherone,eventhoughheiscurrentlygettingagooddealofclosemedicalfollow-up.ItwasonlywhenIhadtoanswerthisquestionthatIactuallyexpressedmyfeartomyhusband.Myothermajorfeardealswithmycaregiving
skills.Ourthreedaughtersliveout-of-state(DE,MA,andOR).Oncetheywentbackhomeafterthefirstweekend,Ihadtobetheireyes,ears,andvoice.IneededtoaskthequestionsTHEYhadandrelaytheanswersbacktothem.IwastakingcareoftheirfatherandIhadthesoleresponsibilityofthat.ItwasverystressfultoquestionifIweredoinganadequatejobandconveyingtheinformationbacktothemcorrectly.
Caregiver’s Story(continued from page 7)
