My name is Ruth den Brinker my husband Peter and I have five children. The four older ones are married with their own young families.

Similar documents
Commonwealth Respite & Carelink Centre

Health and Social Care Alliance Scotland Carer Responses Analysis: Summary of Findings

Your guide to gifts in Wills. Every family that needs one should have an Admiral Nurse

This report has been written by United Voice.

Supporting people who need Palliative and End of Life Care in the Community. Giving people a choice

Unpacking Carers Burden. Amaya Alvarez Future Social Service Institute RMIT University

CARERS Ageing In Ireland Fact File No. 9

What s your experience?

Equinox Care. Equinox Care. Overall rating for this service. Inspection report. Ratings. Inadequate

What do your penalty rates mean to you? Survey of nurses and midwives final report

Swindon Link Homecare

Care and support through terminal illness

Sheffield. Juventa 4 Care Ltd. Overall rating for this service. Inspection report. Ratings. Good

Broken Promises: A Family in Crisis

2008 Annual Report. Submitted By: The March of Dimes, New York State Chapter

Respite (short breaks)

Negotiating Military and Family Life. Zoe Morrison Sarah Cunningham-Burley Scott Tindal Vince Connelly

Personal Caregiver Survey Adapted from Washington State s Personal Family Caregiver Survey (

St Quentin Senior Living, Residential & Nursing Homes

Home Care: potential and paradox a case study of England

Scottish Autism Support Service Care at Home 29b Balunie Avenue Douglas Dundee DD4 8QW Telephone:

SURVEY Being Patient. Accessibility, Primary Health and Emergency Rooms

Respite care. Life is a journey

Holding Mom's Hand. Brought to you by

Wellness along the Cancer Journey: Caregiving Revised October 2015

Sense Scotland Dundee Respite Care Home Service

Report by the Local Government Ombudsman

Respite Care Policy for Children, Young People and Adults in Haringey

Buckden & Little Paxton Surgeries Newsletter

MSU Livestock Judging Camps May 12-14, 2018 (Starts-1:00 p.m. May 12) May 28-30, 2018 (Starts-1:00 p.m. May 28) June 2, 2018 Day Camp for ALL AGES

RESPITE REBATE PROGRAM

CENTACARE. Aged Care

Employee Telecommuting Study

CLIENT INFORMATION BOOK

Work Health & Safety Policy

Labor of Love: Struggles of Being a Caregiver by Donald Leonard, Kimberly Shine and Sarah Sipek Mar 14, 2013

Carewatch - West Central Scotland Housing Support Service Caledonia House Quarrywood Court Livingston EH54 6AX Telephone:

Telework That Works. Teleradiology and the Emergence of Nighthawk Radiology Firms

Family Caregivers in dementia. Dr Roland Ikuta MD, FRCP Geriatric Medicine

Your guide to gifts in Wills. Every family that needs one should have an Admiral Nurse

Roger A. Olsen, Psy.D., L.P Slater Road, Suite 210 Eagan, MN Phone: FAX:

EDUCATION AND SUPPORT OF THE FAMILY THE ROLE OF THE PUBLIC HEALTH NURSE ANNE MCDONALD PHN PHIT PROJECT LEADER

PROVIDENCE MOUNT ST. VINCENT Hand In Hand Assisted Living Apartments Residency Application/Pre-Admission Assessment I.

Position Description: Bunjilwarra Program Coordinator

HEALTHY AGEING PROJECT 2013

Allied Healthcare Group Ltd - Dumfries Housing Support Service 1st Floor 22 Castle Street Dumfries DG1 1DR Telephone:

Orem's Theoretical Framework for Care

Leog House Care Home Service Children and Young People

A BREAK FROM THE PAST

Using results-based accountability (RBA) to drive improvements in the management of long-term conditions

Appendix: Assessments from Coping with Cancer

The London Borough of Greenwich

Heidi Alexander MP, Shadow Secretary of State for Health, Speech to Unite the Union s Health Sector Conference (23/11/2015)

Live-in care of the highest standard

Maintaining your independence is at the heart of our services. Your health, our care, you're in Safehands... Your loved ones in Safehands

Report by the Local Government and Social Care Ombudsman

CHOICE: MAKING KEY DECISIONS

Carers Forums in Cornwall

OCF Grants Portal Frequently Asked Questions

NSW Multipurpose Service Collaborative

Ambulatory Emergency Care A Flexible Approach to Ambulatory Care at Pennine Acute Hospitals. The Pennine Acute Hospitals NHS Trust

Peek-a-Boo Nursery Day Care of Children 1 Buchan Road Fraserburgh AB43 9UW Telephone:

Volunteers of America of Oklahoma Job Description. Developmental Disabilities Program Coordinator or assigned House Manager

Caring for Carers. Includes Caregiver Health Checklists

Pathway Resource Centre Care Home Service Children and Young People Meadow Mill Tranent EH33 1DT Telephone:

rest assured? a study of unpaid carers experiences of short breaks July 2012

Auchengavin Care Home Service Children and Young People Auchengavin Farmhouse Luss, by Alexandria G83 8NX

Hansel Day Services Support Service Without Care at Home Hansel Alliance, Hansel Village Broad Meadows Symington Kilmarnock KA1 5PU Telephone: 01563

Supporting Vulnerable Patients

DISCLOSURE AND POLICY STATEMENT

Best-practice examples of chronic disease management in Australia

Fordingbridge. Hearts At Home Care Limited. Overall rating for this service. Inspection report. Ratings. Requires Improvement

Montgomery Place Care Home Service Children and Young People 4 Montgomery Place Kilmarnock KA3 1JB Telephone:

End of life care in the acute hospital environment: Family members perspectives. Jade Odgers Manager Grampians Regional Palliative Care Team

The Jindajabber. Christmas Special 2017 CHRISTMAS PARTYS INFORMATION ON PAGE 13 & 14

Angel Care Tamworth Limited

Hospice Care for anyone considering hospice

Glengarry Rest Home and Hospital Resident Satisfaction Survey Results 2013

Respite (short breaks)

Information brochure for incoming Erasmus+ students

BIRMINGHAM COMMUNITY HEALTHCARE NHS TRUST: HEALTHY VILLAGES AND THE COMPLETE CARE MODEL

Richmond Clinical Commissioning Group

Introducing the Single Point of Access (SPA)

APPENDICES. Qualification M.Sc (specify)... Work related 7. Total Years of Less than one yr above 20

Your 2018 Heroes Fund Supporter Card is enclosed...

For more information on the FMLA, visit the Department of Labor s website at

The Courtyard Care Home Service Adults Hansel Alliance, Hansel Village Broad Meadows Symington Kilmarnock KA1 5PU

Allied Healthcare (Scottish Borders) Housing Support Service Unit 3 Annfield Business Centre Teviot Crescent Hawick TD9 9RE

Survey results about the health, safety and wellbeing of midwives working in education

QUESTIONNAIRE FOR INFORMAL CARER. KAIĀWHINA (LOVE & Support) STUDY

Stop the DLA Takeaway: fairness for families when their child is in hospital

Care Together Limited - 1st Floor The Corner House

Chemotherapy services at the Cancer Centre at Guy s

Health and care services in Herefordshire & Worcestershire are changing

Making a contingency plan

Next Steps on the NHS Five Year Forward View

Brighter Futures Grants Guidelines Round 6

Paediatric Directorate /1791

Specialist Short Breaks at St Oswald s Children and Young Adults Service Information for prospective families

Executive Summary. Making home care for older people more flexible and person-centred. Factors which promote this. Charles Patmore and Alison McNulty

Transcription:

Good afternoon. My name is Ruth den Brinker my husband Peter and I have five children. The four older ones are married with their own young families. Our youngest son, Jon who is now 32 is severely disabled and requires considerable care. The daughter of two teachers I have always been interested in education. On completion of my Nursing training in 1967 it was my goal to continue my education and lecture in nursing. After Jon was born I returned to work and study part time. When Jon was nearly 3 he developed a mild cold. For our family, that mild illness turned out to be the end of the road called normal. He developed extreme and varied epileptic seizure which left him brain damaged and partially paralysed. I dropped out of University. Jon s care needs were intense. At 6 he underwent a Temporal Lobectomy in the hope that the epilepsy could be resolved. He left hospital unable to walk or weight-bear meaning he required lifting and required a wheelchair Page 1 of 6

for mobility. Early onset puberty meant that by seven Jon was nearly my height and weight. His seizures could be as frequent as 1 2 minutes apart and go on for days or even weeks at a time. Our other children became junior carers. Our family of five could not survive on a single income. I began to work casually in nursing homes, at weekends, Easter, Christmas, New Year and other public holidays. My husband and older children cared for Jon when I worked. We rarely spent time together as a family. By now any thought I had of a career had gone out the window. When Jon was 11, he underwent a Hemispherectomy, or removal of the affected half of his brain to control his epilepsy. As his situation slowly improved, I returned to part time study. In 1993 I enrolled at RMIT. I spent 1 day each week, not as mum or a carer but just me, developing a group of friends and thoroughly enjoying myself. I had a sense of freedom and as a fellow student, not a carer of a disabled son, enjoyed a different identity and equality. This was a most Page 2 of 6

enjoyable time for me. There was certain envy however, when other students were involved in planning out their futures. My future was a dayto-day proposition. In 1998 I finally completed my Masters Degree my interest was in Gerontology. In the interim, Jon s condition had improved to the extent he was able to attend his day program more predictably and he had also qualified for some funding which is now known as HomeFirst. This paid for a care worker morning and afternoon so I could go to work full-time. I had sustained considerable physical damage caring for Jon. Nursing was no longer possible. My employment options were limited. At the youthful age of 49 (any career goals in complete tatters) I ventured into the workforce as a Case Manager. My learning curve was vertical, as I mastered computers, pagers and mobile phones. My lucky break came in the form of a supportive manager. And work which could occasionally accommodate my need to be flexible. With a great deal Page 3 of 6

of juggling and support from our other children I was able to stay in that job for nearly 7 years. On paper, my Jon had quite substantial packages of support over the past few years. But it has been marred by a lack of coordination, lack of reliability, and at times we feared for Jon s safety. The stress this has caused means that in spite of going part-time, I have had to resign from two jobs that I loved. My first priority was Jon s wellbeing. Phone calls while I was at work telling me that there was no worker with Jon, or arriving home to find Jon had been left at an empty house, created constant stress. Services were regularly terminated at a day s notice, created insecurity. So I worked in a series of jobs, leaving when care workers and services let us down. Working in Jobs rather than as a professional I was often supervised by people who were far less qualified which I found quite demoralizing. My self-esteem suffered because I couldn t maintain regular employment. Our society values people according to what they do. I had no hope of promotion, no career structure and no pay increases. Financial stress was Page 4 of 6

a constant issue. Our children have always accepted that sometimes gifts at Christmas were tokens of our love. I have many emotions around the issue of work; Guilt at being selfish enough to even want to have a life apart from caring. Work provided a group of friends, social interaction, and a life outside caring, which I value enormously. There is also a feeling of loss because I couldn t achieve my goals, even though the reasons why were beyond my control. The disadvantage experienced by carers is not limited to women. My husband was offered jobs in other areas and interstate, which he was unable to consider due Jon s need to be close to the Specialists and Hospital. He too experienced the situation of not being able to climb the ladder. Although as a migrant, he worked very hard to complete four Masters Degrees and had to sacrifice time with the family to ensure our security. When carers retire willingly or unwillingly, there is no superannuation nest egg. We would like to travel, a reward a lifetime of hard work but this is difficult. Page 5 of 6

At nearly 65, I have to be realistic and accept that my chances are gone. But I can share our story to work for change for the younger families. Page 6 of 6