From Tragedy to Challenge The Impact of Disabilities on Families

FROM TRAGEDY TO CHALLENGE

The Impact of Disabilities on Families

Mei Shackleton

Copyright Mei Shackleton 2012

Published on Smashwords

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The Author

MEI SHACKLETON is a family therapist who works in Adelaide, South Australia, with individuals diagnosed with acquired brain injury and their family members. Ms. Shackleton qualified as a social worker forty years ago. Her other academic qualifications are: Master’s Degree in Social Work (Flinders University of South Australia), graduate diplomas in Group Work and Health Administration (University of South Australia).

"Mei writes about individual lives and the impact of disabilities on caring families.

We read about love, faith, commitment and dedication. As we read of their experiences, we are invited to connect with our own experiences and attitudes.

We are challenged to reflect on how we would act in similar circumstances.

We are challenged to have new visions about life and what it means for us, especially in our relationships with others.

For readers in similar circumstances we can be reassured that whatever our difficulties or struggle in life may be, we are not alone.

There is always hope."

Rev. Margaret Polkinghorne, 1999

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Dedication

To my parents, who have dreams for me and to

my daughters Gillian and Fiona, for whom I have hopes

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CONTENTS

ACKNOWLEDGMENTS

INTRODUCTION

PROLOGUE

CARER’S PERSONAL STORIES:

For better & for worse in sickness & in health

Till death do us part

Gender

Culture

Partnership

Di

Irene

Vicki

Victor

Bill

Marilyn

Rod

Dianne

Margaret

Helen

Blood is thicker than water

Mothering versus fathering

Autonomy versus dependence

Max

Eugene

Lyn

Lloyd

Lois

Maureen

Marie

Keith

Pam

Russell

Neville (and family)

Denise

Clare

Ann and Rex

Caring for a parent, Caring for Brothers and extended family members

Age Gender Sibling

Jean

Linda

Jenni

Mary

Marie

INTERVIEW FINDINGS FROM OPEN-ENDED QUESTIONS102

CONCLUSION

ADVICE TO PROFESSIONALS:

Helping the bereaved

How to empower service users

Useful hints

DEFINITION OF TERMS USED

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ACKNOWLEDGMENTS

I wish to thank the Julia Farr Foundation, as well as two social work students from the Flinders University of South Australia - Beth Gaskin and Krystie Edwards, to Ms Glenys Steedman for her assistance with the first draft and Ms Fiona Shackleton in the final draft of this book.

A special thanks to all participants, staff of the Head Injury Unit, and the following relatives who gave their precious time in telling and editing their stories:

Di, Rod, Irene, Dianne, Vicki, Lee, Victor, Margaret, Bill, Helen, Marilyn, Jenni, Jean, Marie, Eugene, Pam, Lyn, Jeanette, Russell, Lloyd, Neville (and family), Max, Denise, Lois, Clare, Maureen, Ann and Rex, Marie, Keith, Linda, Marianne, Jenni, Jean, Isabelle, Joe and Marie.

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INTRODUCTION

In many ways this book has opened up more issues than it has answered. It is an honour to have been involved with so many families who were enthusiastic to support the study. Many families agreed to be interviewed, there were many who were so busy that even though that they had wanted to support the study, they did not have the time or energy to do so.

Forty-nine relatives were interviewed with open-ended questions based on narrative themes resulting in the re-telling of their remarkable stories. Many families agreed to be interviewed and there were many that supported the study but did not have the time or energy to participate.

My first task when the interviews were all completed was to have transcripts made from the audiotapes. I had forty-nine tapes from relative-carers, some of whom spoke for half an hour and some for as long as four hours. I conducted a thematic analysis from the transcripts, which involved frequency counts of thirty-three feeling/themes that emerged.

One of my objectives was to find out how relative carers deal with day to day stresses. Relative carers often feel undervalued because most agencies offering help focus more on patients than families. I aim to remind health agencies and patients that families are an important resource that needs support and respite.

The carer’s stories showed that they overcome traumas, conflicts and stresses to make the best out of difficult situations, sometimes at the expense of their health. In retrospect, the positive emotions of their journeys enable them to live from day to day.

It took me four years to write this book and the journey was an immensely humbling process. I had been funded to conduct a study of carers' stress. Part of the study was an interview and a written questionnaire, which I tested on a carer mother (Mrs. B.) After answering the list of questions in the self-scoring stress checklist she turned to me and said It (answering those questions) did nothing for me, I would rather tell you in my own words what happened.

After Mrs. B left my office her words remained in my thoughts for a long time. Her remarks sowed the seeds of an ethical dilemma for me. Mrs. B. ‘s comments reminded of my narrative training that telling one’s story is a representation of experience where new meanings can emerge through creating space for new interpretations. A single questionnaire did not allow for creating space.

Modern psychology challenges that there is no such a thing as objective social research. I was torn between wanting to be an objective researcher and a participant facilitator. In choosing simultaneously two different methods of enquiry I compromised by being both an objective and a participant facilitator in my data collection.

I realised that having my clients retell their stories could be healing, as there was a huge need for them to unburden themselves. Some had kept their feelings bottled up for years. Some may have retold their stories many times but each time their interpretation was different .For some it could be cathartic and the emphasis on their achievements renewed their spiritual belief, or belief in themselves as survivors rather than victims. Thus convinced, I extended my enquiry to include a face to face interview so that the experiences and the meaning of carers could be told. If I had remained true to my original more formal academic plan, this book would never have been written.

Initially I present the carer’s perspective and then compare that with the service provider’s point of view. I hope that by doing so it is clear that what helps carers may be different from what helps professionals. I believe that to enable relatives and professionals to work collaboratively there is a need to view the situation from both sides.

Relative carers are often expected to transform into health para-professionals overnight and are overwhelmed by the task confronting them. They are frustrated by the feeling that they have been cheated out of pursuing their own future and the fact that their loved ones may require their care, perhaps for the rest of their lives. The process of care, rather than the amount provided, is a more important factor in the degree of strain a family experiences.

It became obvious that one of the major issues is the enormous need for relative-carers to be listened to. They may have been informed many times over what head injury was all about, but during the initial trauma, in the acute phase of acquired brain injury after the accident, how many would take in what they were told in a balanced realistic manner? Many would absorb the positive news to maintain what hope they have and ignore the negative. A few would take in the pessimistic prognosis, totally eliminating what little hope they had from positive predictions. I hope this book will help relatives understand more about their new circumstances and to maintain a balance between hope and negativity.

Most relatives acknowledged that their lives had been changed by the illness/accident of their care recipients. One sister of a resident experienced Post Traumatic Stress Disorder herself as she was in the back seat of the car when the accident happened. She self-referred for treatment.

The following picture from the relative-carers point of view was uncovered.

THE IMPACT OF DISABILITY ON THE FAMILY

•The majority of respondents felt initial reactions of shock and trauma.

•There is a feeling of denial and powerlessness associated with trauma. Denial was felt by nearly half and powerlessness by many interviewees. For those who experienced denial, they experienced it for short periods only. Many people normalized this feeling by saying that it helped them to deal with the pain of reality. As their relatives recovered, other more positive feelings or urgent tasks that were needed replaced the sense of denial.

•Many families reorganised their lifestyles or routines to roster for long hours of vigil by their relative's bedside and subsequent care.

•Some relatives became detached as the person they knew changed and became unfamiliar.

•Sadness and despair were felt by about three-quarters of participants as they watched their relative's progress with disabilities.

•A quarter of the interviewees found that telling people outside the family about care recipient's disabilities were a difficult issue to deal with.

•Regret played an important part in relative's past. Over one third of relative carers would have done things differently in hindsight such as seeking second opinions on medical decisions because of their gaps in brain injury information. They longed for the opportunity to be able to decide important issues again, if it were possible, especially when it may mean improvements for their loved ones.

•Most relatives live from day to day and find it hard to envisage the future. Fifty-five percent stated that they could only plan from day to day. On the surface this appears to contradict positive feelings expressed. However it could be that relatives were afraid to lose hope. The future seems to be out of their control because so much relies on their relative’s health status, which can change from day to day.

•Many relatives described their mental state as entwined with their loved ones. When the care recipients felt up or down, the carers correspondingly felt up or down. Awareness and understanding of this may help reduce stress in both health professionals and relatives.

•Many ageing, frail carers expressed concern for future care of their relatives in the event of their demise.

•Over three-quarter of relatives experienced loss and regret.

•Over half felt grief some time during their journey of care. The picture they painted seemed to be consistent with episodic grief.

•About half felt isolated, within their own homes (for those who care for relatives at home). This is understandable as it would be difficult for relatives to socialise if they were burdened by caring tasks

•Some relatives felt that they were not heard by health professionals, even though they may be listened to, because there were no response to their requests

•Most relatives did not find it easy to negotiate the medical model treatment systems and caring agencies, particularly in the early stages.

•Relatives were reluctant to complain for fear of being labelled as a ’troublemaker’. An imbalance of power was frequently cited as the main barrier to open and honest communication between relatives and systems. An equal partnership between carer and the representatives of the systems was impossible because of the perception (frequently cited in the interviews) of this imbalance of power.

Reasons for reluctance on the part of relative carers to accept much needed help were not explored in depth, as it was not an objective of the study. Rehabilitation professionals often explain the lack of progress of the patient as plateauing (a levelling out of progress). Many relatives refused to accept this theory. This is an area that needs further research.

This reluctance to accept help has serious implications for health professionals as it infers that the support such as information/education that we are offering is either inadequate or inappropriate. There is a need for health professionals to listen to what relatives have to say so that more appropriate assistance can be offered at the right time. We need to be more family and culturally sensitive if we want to work in partnership with relatives.

Service providers need to empower relatives from the beginning if they want to enlist them as an important caring resource. We need to refer carers to self-help groups and other agencies to assist them when choosing options for care recipients.

Positive feelings and affirmations of the journey of relative carers also emerged through the narratives. It is possible that in their reflections of the past and in telling their stories they were looking through rose tinted glasses or were reluctant to reveal/dwell too much on the dark side of their experience.

Many carers told me that they could not cry in front of their relatives, no matter how sad they felt. Others could not cry because of their upbringing or their personality. More men mentioned this than women.

The impact of being interviewed and taped made relatives look at their past in a new light or with new understanding. Many broke down and cried during the interviews.

It seemed that there was a need to tell others what they