I HATE YOU I WISH YOU WERE DEAD!Livingwithlongtermchronicconditions
Supportingwhānautosupporttheirteenager
Inourkōrerotoday….• Wewillbebrutallyhonestandupfront
• Wetalkaboutspecificpeopleindifferentrolesthathavehelpedorhinderedourjourney
• Ifyourecogniseyourselfinthisstory,pleasedon’tgetoffended
• Ourwhanaustory,ourwhanauexperience,ourwhanaujourney
• Useourstorytotakeanhonestlookintoyourownapproach:• Canyoudothingsbetter?• Whatlearningscanyoutakefromthis?• Howcanyouapplythemtoyourownwork?
Asababy
••Severalboutsofbronchiolitis
Asapreschooler
••Diagnosedwithasthma
••Managedwithflixotide
••1-2hospitaladmissions
Atprimaryschool
••Diagnosedwithhayfever
••Multiplehospitaladmissions(10-20)peryear
••Diagnosedwithbrittleasthma
••Seriousboutofpneumonia
••Diagnosedwithbronchiectasis
••Multiplemedications
••2lifethreateningattacks
••CAMHSreferralforanxiety
Atintermediateschool
••Increasinghospitaladmissions(4-6permonth)
••Massiveasthmaattack(2collapsedlungs,2respiratoryarrests)
••Hypoxicbraininjury••PICU/Starship/WilsonCentre••Rehabilitation••OngoingchestinfectionsrequiringIVantibiotics
••Ongoingfatigue••PTSD••Multiplemedications••Longtermsteroiduse••Frequentabsencesfromschool••IntermittentCAMHSinput
Athighschool
••Ongoingfatigue••Chronicpain••Allergieshaveworsened••Ongoingchestinfections••Portacathinserted••Asthmaflareupscontinue••Lowerbackpain(queryslippeddisc,associatedtolongtermsteroids)
••MinimalCAMHSinput
It’saboutthewholepersonandtheirwholeworld
Family
Myhealth
Friends
Sports
School
Onagoodday
Family
Myhealth
Friends
Sports
School
Onabadday
Whenthebaddaysturnintoweeksandmonths….
• Disobedient• Refusaltotakemedications• Hidinghersymptoms• Delayingmedicalhelp• Disengaged• Defiant• Lying• Runningaway• Breakingfurniture• Physicallyabusive• Violentoutbursts• Thoughtsofself-harming
ASENSEOFHOPELESSNESS
You can only be so strong for so long
Until you reach the point
Where you break.
Physically.
Mentally.
Emotionally.
Broken.
Emotionalandmentalwellbeingofthewhānau
Atintermediateschool
••Increasinghospitaladmissions(4-6permonth)
••Massiveasthmaattack(2collapsedlungs,2respiratoryarrests)
••Hypoxicbraininjury••PICU/Starship/WilsonCentre••Rehabilitation••OngoingchestinfectionsrequiringIVantibiotics
••Ongoingfatigue••PTSD••Multiplemedications••Longtermsteroiduse••Frequentabsencesfromschool••IntermittentCAMHSinput
Athighschool
••Ongoingfatigue••Chronicpain••Allergieshaveworsened••Ongoingchestinfections••Portacathinserted••Asthmaflareupscontinue••Lowerbackpain(queryslippeddisc,associatedtolongtermsteroids)
••MinimalCAMHSinput
Emotionalwellbeingofusasparents
Emotionalwellbeingofourchildren
Iftheparentsarestrongthewhanau
isstrong
Ifthewhanauisstrong,thechildrenare
strong
AskingforHelp
• PaediatricSocialWorker• ReferraltoChildren’sTeam• ReferraltoCAMHS– Discussiononwhathadandhadn’tworkedinthepast
• ReferraltoFamilyWorks• ReferraltoStandChildren’sServices
5th timelucky!
• ThepsychologistsupportedJamesandIasparentsandasindividuals
• Shewasamindreader!• Shegaveus‘littletweaks’tohelprefineourstrategiesandtactics
• Shewasaccessibleanytime– wefeltsupported• Shecaredaboutus
• Anamazingsocialworker• Initforthelonghaul• Adaptableandflexible• Inourownway,inourowntime• Caring,supportive,lovingworkforce• Weneverfeltlikea‘tickbox’whanau
In my own wordsBy Tomairangi Pihema-Brown
Ihatebeinginhospital.WhenI’minisolation,theyjustgivemethepills
andthenforgetaboutme.
Inhospitalthere’snothingtofeelhappyabout.IjustlookforwardtoShortland St.Icountdownthehours
Iwantthedoctorstonotjustfixmeupwithpills.Theydischargemetooearly.Ihatewhentheysay“ohyoujustcalledinforavisit”or“You
missedus!”Ihatethat,it’sannoying
Idon’tspendenoughtimewithmymumanddadandifIdoit’sbecause
I’minhospital
Idon’tlikehoweveryonesays
“Youalwaysstartfights”Idon’tlikewhenmy
sistersays“It’sbetterwhenyou’re
inhospital.”ItmakesmefeelangryandIjustwanttopunch
her.
IfeelangryandshamedoutbecauseIhavetohavemumordadwithmefor
schooltripsandsports
AllIwantistoeat,sleepandgoto
school.Notmedicines,notappointments.
Ican’tevenenjoynighttime.Idon’tevengettosleep.Asthmaisalwaysthere
Idon’tknowwhatIwanttochangeathome.Idon’twantanythingto
changeathome.Ijustdon’twanttobeinhospital
Iwasawaketill4am.ThenIwenttosleep.Mysleepingisallmixedup.Isleepatdaytimeandstayawakeat
night
IhateDadbecauseitsallhisfault.ButIdon’tknowwhyit’sallhisfault.
TheonlytimeIgettomyselfiswhenIrunaway
RespectOurRights
OurrightsasparentsvsOurrightstoparent
Ourrightstobeafamily
Ourrightstodecidehowtheprofessionalscanbesthelpus
Ourrightstocareforourdaughter
Whatwouldhelp?
Everychildwithalongtermchronicconditionrequiringsignificanthospitalisations,
medicationregimesorabsencesfromschoolshouldreceiveculturallyappropriate
psychologicalandsocialsupportfrom10yearsofage
Asababy
••Severalboutsofbronchiolitis
Asapreschooler
••Diagnosedwithasthma
••Managedwithflixotide
••1-2hospitaladmissions
Atprimaryschool
••Diagnosedwithhayfever
••Multiplehospitaladmissions(10-20)peryear
••Diagnosedwithbrittleasthma
••Seriousboutofpneumonia
••Diagnosedwithbronchiectasis
••Multiplemedications
••2lifethreateningattacks
••CAMHSreferralforanxiety
• Copingstrategies• Angerandfrustration• Selfesteem andfittingin• Lookingafterthemselves
• Feelingincluded
Parents,grandparents,caregivers
CAMHSsupportearly:CopingstrategiesUnderstandwhat’sgoingonintheirchild’smindStrategiestokeepthemselveswellSupportingtheirotherchildrenWork-lifebalanceandstressmanagementKeepingthewhanausafe
Thesiblings
CAMHSsupport:• Copingstrategies– theyfeelworriedandstressedaswell.• Feelingincludedandvalued
Supportgroups:• Wheretheycanhavefun,enjoythemselvesandnotworrytoomuch!
PRE-EMPTTHECHAOSBEPROACTIVE
SUPPORTTHEWHANAUWORKHOLISTICALLY
Wherearewenow?
• Inamuchbetterspace!• Wefeellikea‘normal’family• Wearebackincharge• Wecanmakedecisions• Wefeellikeweareincontrol• Wecantalk,laugh,growl,punish• Wespeakupandspeakout• WECANCOPE