Silenced Grief: the bereavement experiences of carers

1
Silenced Grief the bereavement experiences of
carers

• STUART TODD
• LEARNING DISABILITY AND AUTISM NETWORK
• (LDAN)

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Bereavement and caregiving

• The caregiving relationship typically ceases with
  death
• Death is, therefore, a pertinent feature of the
  caregiving relationship and worthy of study.
• However, it is seldom discussed in policy,
  service or research agendas. Why?
• Are the bereavement experiences of carers
  different from the bereavement experiences of
  others?

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CAREGIVING RESEARCH

• Focus on the problems of caring -Stress, malaise,
  burden
• Implicit aim of keeping the person at home for
  as long as possible
• Once this arrangement breaks down the research
  focus moves away from carers
• What impact does death have?

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Complex relationships

• Task defined - intensity
• Kinship - which may influence duration and
  intimacy
• Co-residence which may define scope
• Nature of impairment/disability
• An expression of identity
• The illness that leads to death
• Bereavement is equally variable
• Long term perspective (before and after death)

5
Sudden deaths

• We got up one morning and she didnt seem well.
  We called the doctor and he thought she was ill.
  So she was taken to hospital. As soon as she got
  there her breathing changed, she was struggling.
  A few minutes later we were told she was dead.
  They brought her into a room with me to hold.
  When do you say, Take her now!?
• We had a call from the ATC to say he had died. He
  hadnt been ill or anything!

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Sudden end

• It took us three years to get the right
  wheelchair for John, it took them two days after
  his death to take it away
• There was no offer of support from them (social
  services). I was told on the day of her funeral
  that I wouldnt be seeing anyone again
• Everything stopped. I known them for years
  (services) - they knew me - but it all stopped as
  soon as she died!

7
Identity loss

• Freedoms not all its cracked up to be! I miss
  her. The touch of her. She was full of life and
  she was my life! Id do the housework around
  her, I did everything around her. It was my
  whole life. All that pain from the day she was
  born til the day she died? I wouldnt want to
  be without it. I still want her back A part of
  me went with her! I dont know what to do with
  myself

8
Not so much grief as freedom

• My family deep down thought it was a blessing
• When you talk about it - you can talk about it-
  but you feel youre not allowed to show how you
  feel. That youre just supposed to get on with
  it. Its like youre sitting on an emotional
  volcano! I dont think anybody understands at
  all!

9
Disenfranchised loss

• The relationship to the deceased was not real
• I didnt feel that they understood. No-one to
  guide me through it. If Rachel had been her
  sister the loss would have been as devastating
  but people wouldve understood. It was like I
  was saying but Rachel is my daughter too!
• Multiple loss or the context of previous loss
• I still struggle to make sense of things. For
  some people, well they can go back even if they
  hurt. I couldnt! There was nothing there for
  me. Just a void. Everything was completely
  gone. I had empty hours and a huge hole in my
  heart
• The loss is not only insignificant, it is a
  positive gain!
• I dont think people understood. Even my
  family thought it was a relief. Its not the way
  it was. It was never that to me! To me it was
  just loss. Grief!

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For carers there is a risk of compounded,
complicated and disenfranchised grief. That is,
there may be enduring difficulties after death.
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Crisis of meaning and Continuing Bonds

• Ameliorative measures
• Counselling that recognises the complexity and
  depth of loss
• Preventative measures
• A fuller account of carers lives that include
  needs for work, socialising, personal interests.
  Parallel careers
• Measures of simple respect
• Avoid hasty or untimely requests
• Days of remembrance

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• Multiple loss
• Disenfranchised Grief
• Death followed by illness
• Bereavement experiences of the cared for agent
• Death anxiety in caregiving relationships
• Continuing bonds