'4% & Child Welfare Community of Practice '4% CHILDWELFARE · Grief’and’loss’...

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Caring for Your Self: The Need for Caregiver Self Care Curriculum Development Team: Dorothy Badry, PhD, RSW Jamie Hickey, BA, MSW (c) Faculty of Social Work University of Calgary Project Funder: Public Health Agency of Canada (20112014) CHILDWELFARE.CA & Child Welfare Community of Practice The Caregiver Curriculum on FASD ©

Transcript of '4% & Child Welfare Community of Practice '4% CHILDWELFARE · Grief’and’loss’...

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Caring  for  Your  Self:  The  Need  for  Caregiver  Self  Care  Curriculum  Development  Team:  

Dorothy  Badry,  PhD,  RSW  Jamie  Hickey,  BA,  MSW  (c)  Faculty  of  Social  Work  University  of  Calgary  

 Project  Funder:  Public  Health  Agency  of  Canada  (2011-­‐2014)  

CHILDWELFARE.CA

& Child WelfareCommunity of Practice

The  Caregiver  Curriculum  on  FASD©  

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Caring  for  Yourself:  Caregiver  Self-­‐Care  Module  3.1  

Caring  for  the  Caregiver  

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How  to  use  this  module  

•  Open  in  powerpoint  or  powerpoint  viewer  •  Click  the  “Slideshow”  tab  then  click  the  “From  Beginning”  menu  buTon  that  appears  below  

•  Use  your  mouse  to  click  on  the  arrows  and  items  on  the  slides  to  navigate  

•  Terms  that  appear  in  blue  with  an  underline  will  give  you  a  definiVon  if  you  hold  your  mouse  over  them  without  clicking  

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How  to  use  this  module,  conVnued  

The  main  navigaVon  buTons  work  like  this…  

Go  back  to  the  very  start   Go  to  the  end  

of  this  module  

Go  forward  Go  back  

Home  topic  list  

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How  to  use  this  module,  conVnued  

There  are  also  2  special  navigaVon  buTons…  

This  buTon  will  return  you  to  a  list  if  you  are  asked  to  click  to  learn  more  about  different  topics  

This  buTon  will  return  you  to  the  main  chapter  if  you  click  on  a  coloured  box  to  see  an  example  

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Table  of  contents  •  Caring  for  the  Caregiver  •  Grief  and  Loss  •  AdjusVng  ExpectaVons  •  Curious  to  Learn  More?  •  References  

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Caring  for  the  caregiver  The  following  module  will  focus  on  the  importance  of  developing  good  self-­‐care  skills.  Providing  care  to  an  individual  with  FASD  takes  a  tremendous  amount  of  Vme  and  energy.  Caring  for  yourself  to  maintain  and  replenish  your  energy  reserves  is  an  essenVal  part  of  providing  the  best  possible  care.  

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Caring  for  the  caregiver  

As  you  read  through  this  module,  we  ask  you  to  remember  a  few  key  concepts…  •  Self-­‐care  acVviVes  are  not  a  luxury,  but  a  necessity  to  provide  

the  best  possible  caregiving  •  Your  mental,  physical,  emoVonal  and  spiritual  health  have  a  

direct  impact  on  your  caregiving  •  Support  for  caregivers  is  available  •  The  face  of  caregiving  for  an  individual  with  FASD  will  change  

across  the  individual’s  lifespan  •  As  a  caregiver  you  have  the  right  to  ask  for  the  support  you  

need  to  achieve  balance  within  your  life  

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Grief  and  loss  

If  you  have  already  worked  through  previous  modules,  some  of  this  material  may  be  a  review  for  you.      Previously  this  informaVon  was  presented  in  the  context  of  the  individual  with  FASD  but  for  this  module  you  are  encouraged  to  consider  it  within  your  own  context,  as  a  caregiver.  

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Grief  and  loss  

One  important,  yet  oben  ignored,  concern  that  affects  both  the  caregiver  and  the  child  is  grief  and  loss.      FASD  is  a  complex  diagnosis  for  both  the  individual  affected  and  his  or  her  caregiver.  The  individual  affected  by  FASD  may  struggle  with  physical,  psychological,  emoVonal  and  behavioral  challenges  while  caregivers  must  manage  the  stress  of  obtaining  appropriate  medical  appointments,  advocaVng  within  the  school  system  and  providing  behavioural  supports  at  home.      

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Grief  and  loss  You  may  be  surprised  to  see  grief  and  loss  addressed  in  this  curriculum  when  so  much  of  the  focus  is  centered  around  the  child’s  potenVal.  Indeed,  children  affected  by  FASD  can  thrive  when  provided  with  the  right  supports  and  guidance,  however  it  is  also  important  to  acknowledge  that  the  diagnosis  of  an  FASD  can  also  bring  feelings  of  grief  or  a  sense  of  loss.      Not  all  people  will  experience  grief  and  loss  when  receiving  a  diagnosis.  For  some,  the  diagnosis  may  bring  feelings  of  relief  while  others  may  experience  conflicVng  feelings  of  both  relief  and  grief.  Every  caregiver  and  every  child  will  experience  the  process  of  receiving  a  diagnosis  differently.    

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Grief  and  loss  

There  is  no  ‘right’  or  ‘wrong’  way  to  feel  in  the  face  of  a  diagnosis.  The  following  secVon  is  intended  to  provide  some  brief  informaVon  regarding  the  feelings  of  grief  and  loss  that  may  surround  a  diagnosis.      If,  on  reading  this  secVon,  you  idenVfy  that  you  or  your  child  are  having  difficulVes  in  adjusVng  aber  a  diagnosis  please  contact  your  caseworker  or  invesVgate  counseling  services  and/or  support  groups  in  your  area.      

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Grief  and  loss  

Grief  is  a  natural  and  normal  response  to  loss.  A  diagnosis  does  not  need  to  be  terminal  or  even  life  threatening  to  bring  about  feelings  of  grief.  A  serious  or  life-­‐long  diagnosis  can  also  bring  about  emoVons  of  sadness  and  loss.      Individuals  diagnosed  with  an  FASD  are  beginning  a  journey  on  a  very  different  path  then  that  travelled  by  their  peers.  This  new  journey  requires  both  the  child  and  the  caregiver  to  shib  and  reframe  expectaVons.    

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Grief  and  loss  

As  a  caregiver,  you  may  have  envisioned  a  path  for  your  child,  imagined  how  their  life  would  unfold  and  planned  for  the  journey.  Your  child  may  have  also  imagined  the  future  and  set  goals.      This  new  journey  may  require  the  construcVon  of  new  goals  and  aspiraVons.  This  change  in  journey  represents  a  loss  of  expectaVons  –  the  expectaVons  that  you  and  your  child  had  built  prior  to  diagnosis.    

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Grief  and  loss  You  may  have  already  heard  of  the  “5  stages  of  grief”  model  listed  below:    

–  Denial  –  Anger  –  Bargaining  –  Sadness/Depression  –  Acceptance  

 These  stages  were  iniVally  defined  by  Elizabeth  Kubler-­‐Ross  and  many  people  do  experience  one  or  more  of  these  stages  when  they  experience  a  loss.  It  is  very  important  to  note,  however,  that  there  is  no  right  or  wrong  way  to  experience  grief  and  loss.  Many  people  ‘skip’  some  of  the  stages  or  experience  the  stages  out  of  order.  For  the  purpose  of  this  module  the  stages  are  included  as  a  way  to  represent  the  wide  variety  of  emoVons  within  the  overall  experience  of  grief.    

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Grief  and  loss  So,  is  grief  harmful?  Well,  the  answer  to  that  quesVon  depends  on  many  things.  Grief  is  a  normal  process.  It  is  a  natural  human  reacVon.  Grief  is  not  a  “bad”  emoVon  or  something  to  be  feared.  It  is  a  normal  response  to  an  event  that  causes  a  severe  life  disrupVon  and  loss  of  the  lifestyle,  life  path  or  life  events  you  expected.      Can  grief  be  harmful?  It  certainly  can  be  if  it  is  experienced  for  a  long  Vme  or  experienced  at  extreme  intensiVes.  If  you  are  concerned  that  your  grief  may  be  causing  harm,  we  recommend  that  you  speak  with  a  mental  health  pracVVoner  immediately.  Many  services  and  support  groups  may  be  available  and  a  mental  health  pracVVoner  will  be  the  best  person  to  advise  you  as  to  your  opVons.      

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Grief  and  loss  While  they  can  be  painful,  the  situaVons  that  cause  grief  can  also  provide  a  tremendous  opportunity  for  growth.      Major  life  events,  like  a  life-­‐long  diagnosis,  demand  acVon.  Caregivers  and  children  must  come  up  with  new  goals  and  adaptaVons  in  the  face  of  the  new  informaVon  provided  by  the  diagnosis.      The  discomfort  that  comes  with  grief  assists  us  not  only  in  saying  goodbye  to  the  old  expectaVons  but  it  inspires  us  to  take  acVon  to  remedy  the  feeling.      

Think  of  a  situaVon  or  problem  that  you  have  solved.      Prior  to  the  situaVon  or  problem  being  resolved,  how  did  you  feel?      Go  back  in  your  mind  to  the  Vme  it  was  happening  and  think  about  what  you  did  when  faced  with  the  problem.    What  acVons  did  you  take?      How  did  you  feel  aber  you  took  those  acVons?    

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Grief  and  loss  What  should  I  do  if  I,  or  the  child  I  am  caring  for,  is  experiencing  grief  aNer  a  diagnosis?  As  menVoned  before,  for  severe  or  prolonged  cases  of  grief  and  loss  please  contact  your  child’s  caseworker  or  a  mental  health  pracVVoner  to  assess  what  resources  and  programs  may  be  available.      This  secVon  is  not  intended  to  address  situaVons  where  grief  is  incapacitaVng  (you  or  your  child  cannot  complete  your  daily  rouVne  due  to  grief)  or  cases  where  severe  mental  health  concerns  are  indicated  (grief  lasVng  more  than  6  months,  symptoms  of  traumaVzaVon  are  present  or  suicidal  thoughts/acVons  are  present)  as  these  situaVons  require  immediate  aTenVon  by  qualified  medical  and  mental  health  pracVVoners.    

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AdjusVng  expectaVons  

In  the  previous  module  the  importance  of  adjusVng  your  expectaVons  for  the  individual  with  FASD  were  discussed.  In  the  face  of  diagnosis  you,  as  a  caregiver,  may  also  need  to  adjust  your  expectaVons  of  yourself  and  the  journey  you  and  your  child  will  take  together.    

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AdjusVng  expectaVons  

Providing  care  to  an  individual  with  a  disability  is  rewarding  but  can  also  be  a  challenging  and,  at  Vmes,  frustraVng  experience.      As  a  caregiver  it  is  vital  that  you  acknowledge  your  feelings  and  take  care  of  yourself  as  well  as  the  individual  in  your  care.  The  diagnosis  marks  a  change  not  only  in  the  path  of  the  individual  with  the  diagnosis,  but  also  your  journey  as  a  caregiver.    

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AdjusVng  expectaVons  

Many  caregivers  enjoy  thinking  about  the  future  milestones  that  they  will  experience  with  their  child,  some  of  which  may  be  disrupted  by  a  diagnosis  of  FASD.  It  is  important  to  remember,  however,  that  a  change  in  path  does  not  mean  failure.      This  change  in  path  offers  the  opportunity  for  you  and  the  individual  you  are  caring  for  to  approach  life  in  a  new  way,  learn  new  things  and  grow  together  as  you  progress  along  a  new  life  path.  It  is  the  opportunity  to  author  a  success  story  that  is  unique  and  tailored  to  your  family.    

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AdjusVng  expectaVons  

To  see  one  family’s  journey  to  success,  check  out  the  linked  video,  part  of  the  Alberta  FASD  learning  series.    

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Author  your  own  success  story  SomeVmes  it  can  be  difficult  to  see  the  possibiliVes  that  exist  when  faced  with  a  life  disrupVon.  For  this  exercise,  choose  a  Vme  when  you  can  reflect  and  spend  some  quiet  Vme  alone.  Write  a  new  narraVve,  or  story,  about  what  your  caregiving  journey  will  be.  What  successes  will  you  and  your  child  experience?  What  goals  will  you  achieve?  What  challenges  will  you  overcome?        Once  you  have  authored  this  new  narraVve,  think  about  what  people  and  resources  might  be  helpful.  Begin  the  process  of  reaching  out  and  building  a  network  of  support.    

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Curious  to  learn  more?  •  Check  out  these  videos  from  the  Alberta  FASD  Learning  Series!  –  The  Ongoing  Face  of  Grief  and  Loss  and  the  Theory  Behind  It  -­‐  hTp://www.youtube.com/watch?feature=player_embedded&v=xh5mhld9R3I  

–  Grief  and  Loss:  Strategic  Support  for  Clients  -­‐  hTp://www.youtube.com/watch?feature=player_embedded&v=SU5oU-­‐Up3gw  

–  Understanding  the  Needs  of  the  Caregiver:  Psychological  treatment  and  intervenTon  -­‐  hTp://www.youtube.com/watch?feature=player_embedded&v=j8edSEnIc0Y  

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References  

•  James,  J.  W.,  &  Friedman,  R.  (1998).  The  grief  recovery  handbook:  The  ac8on  program  for  moving  beyond  death,  divorce,  and  other  losses.  Harper  Perennial.  

•  Kübler-­‐Ross,  E.,  Wessler,  S.,  &  Avioli,  L.  V.  (1972).  On  death  and  dying.  Jama,  221(2),  174-­‐179.  

Page 26: '4% & Child Welfare Community of Practice '4% CHILDWELFARE · Grief’and’loss’ One’important,’yetoben’ignored,’concern’thataffects’ both’the’caregiver’and’the’child’is’grief’and’loss.’’

The  Caregiver  Curriculum  on  FASD  •  Title:  Caregiver  Curriculum  on  FASD  (Fetal  Alcohol  Spectrum  Disorder)  2014  •  Author:  Dorothy  Badry  &  Jamie  Hickey  in  collaboraVon  with  the  Tri  Province  FASD  

Research  Team    •  Format:  pdf  and  Power  point  -­‐  online  topics  and  modules  on  the  website  

fasdchildwelfare.ca  •  Publisher:  Faculty  of  Social  Work,  University  of  Calgary;  Faculty  of  Social  Work,  

University  of  Manitoba  &  Children’s  Aid  Society  of  Toronto-­‐Child  Welfare  InsVtute  

•  This  project  was  funded  by  the  Public  Health  Agency  of  Canada.  •  ISBN  978-­‐0-­‐88953-­‐375-­‐2©  •  Use  of  Material:  This  material  can  be  freely  shared  and  used  with  acknowledgment  

using  the  citaVon  below.    •  CitaTon:  Badry,  D.,  Hickey,  J.  &  the  Tri  Province  FASD  Research  Team  (2014).  Caregiver  Curriculum  on  

FASD.  Online:  fasdchildwelfare.ca;  Faculty  of  Social  Work,  University  of  Calgary;  Faculty  of  Social  Work,  University  of  Manitoba  &  Children’s  Aid  Society  of  Toronto-­‐Child  Welfare  InsVtute.  Funder:  Public  Health  Agency  of  Canada.  


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