Abstract

In May 2005 I was discharged from hospital and admitted to a long term care facility in Calgary, Alberta, Canada. I was 57 years old and physically healthy but suffered from depression and akathisia. Akathisia caused me to pace endlessly and I felt trapped in a body that refused to rest. When hospital physicians decided they could do no more and no group homes were available, a long term care facility seemed the only option. The facility I was sent to was owned by a for profit company which had a contract with the government to provide long term care.

My objective is to share my story with you and through telling you my story I hope to deepen your understanding of how vulnerable people in our care systems may feel. It is a unique story but also a universal story as all of us have similar needs for dignity, meaning and purpose, independence and support, choice, respect, quality of life and caring relationships. I hope it will encourage you to continue to listen to residents and their families, improve policies and practices that guide our care systems and advocate for better quality of care and life for those who need long term care.

The data for this presentation are my recall of my years in the care facility, very painful years. Because the care did not meet my needs, each incident where I was treated as less than human is etched in my memory. My method is that of using a narrative – to tell a story that is detailed, honest, and unique.

I will argue that what I endured, including poor care, lack of dignity, choice, privacy, respect, should never have occurred. I dreaded waking up to face each long, meaningless, purposeless and lonely day. Staff did not encourage me to do the things I could do nor did they ask me to help plan my own care. Activities at the facility were more appropriate for children. As I improved, my requests for help to find a more suitable group home were ignored. Through these years, the kindness of some caring staff made life tolerable but staff were often too busy with basic care tasks to spend time with residents.

Fortunately I improved, left the facility in 2008, and have achieved many personal and professional goals. Although my story is unique, reports from family and advocates still say that others suffer from inconsistent or inadequate care. As a result of my experience I have become an advocate for policy change.

Specific policy implications which we can discuss include:

• The impact of government ideology on policy and care (privatization, funding, etc)
• The importance of using research and best practices models to guide policy
• The need for oversight, transparency, advocacy and ongoing quality improvement
• The need to ensure that residents’ needs are at the centre of care and that we focus on quality of life as well as quality of care