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Silenced Grief: the bereavement experiences of carers

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I was told on the day of her funeral that I wouldn't be seeing anyone ... Days of remembrance. Multiple loss. Disenfranchised Grief. Death followed by illness ... – PowerPoint PPT presentation

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Title: Silenced Grief: the bereavement experiences of carers


1
Silenced Grief the bereavement experiences of
carers
  • STUART TODD
  • LEARNING DISABILITY AND AUTISM NETWORK
  • (LDAN)

2
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?

3
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?

4
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!

6
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!

10
For carers there is a risk of compounded,
complicated and disenfranchised grief. That is,
there may be enduring difficulties after death.
11
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

12
  • Multiple loss
  • Disenfranchised Grief
  • Death followed by illness
  • Bereavement experiences of the cared for agent
  • Death anxiety in caregiving relationships
  • Continuing bonds
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