Stories: Making a Difference People Needing Care

Frank’s story THE DIFFERENCE COMMUNITY MAKES Frank is 75 years old and lives with his wife He has 3 chronic health conditions which flare up from time to time Saddened by the death of an old friend, Frank has become less active and spends a lot of time alone THE DIFFERENCE COMMUNITY MAKES Frank’s family, friends and neighbours rally around him. While initially reluctant, he gets interested in a wood-working job his neighbour asks him to help with. His faith community visits him at home and encourages him to help organize some parish activities. His grand-daughter helps him re-connect to other old friends through Skype and by sharing memories, they gradually come to terms and accept the loss of their friend.

Jane’s Story THE DIFFERENCE COMMUNITY MAKES Jane is 85 years old, has a modest fixed income and lives alone in the same house where she was born She has reduced mobility and some memory loss. She receives personal support services one hour per week to help with bathing She becomes increasingly dependent and isolated as her mobility decreases. When she feels frightened and lonely, she often calls the police or the ambulance for help. First line responders are frustrated and can’t help her. THE DIFFERENCE COMMUNITY MAKES Jane feels comfortable asking for the help that is meaningful to her. Volunteers work with Jane, enabling her to receive day to day support, to go walking with a group in her neighborhood, to join a nearby community centre where she teaches her traditional cooking, and to receive weekly visits from her faith community. High school students help her use the internet and a coach helps her record her care journey so everyone is on the same page as Jane, helping her get what’s most important to her. Rather than becoming passively dependent on limited professional support, Jane feels empowered, valued and connected. Her neighbours and volunteers feel good about themselves and value their chance to care.

Bill and Mary’s Story THE DIFFERENCE COMMUNITY MAKES Mary has dementia and has started to wander at night. Married for 55 years, Bill wants to keep Mary with him at home. He hides her worsening condition from their children and from Mary’s case worker. Instead, he bolts the windows to lock them both inside at night, fearing he might not wake up in time if she gets up THE DIFFERENCE COMMUNITY MAKES A home monitoring system helps Bill know Mary is safe. Bill is set up with practical help and trained to better manage Mary symptoms. He joins an on-line caregiver support group so he can compare notes with other caregivers like him. Neighbours arrange to watch out for Mary. For community service hours, two nearby teenagers walk with her to the park each week so she is able to get some exercise and be safe. Bill experiences great satisfaction and purpose from taking care of Mary. Mary reconnects with music, her plants and the things that give her life meaning, and is enabled to stay in the place and with the people she most loves and is most familiar with

John’s Story THE DIFFERENCE COMMUNITY MAKES Developmentally challenged from birth, John is considered difficult to manage. He has always had significant trouble at school and at home. He has never worked and is challenging to house. John continues to cycle through recurring bouts of medication non-compliance, aggressive behaviour, and restraint, becoming more withdrawn and difficult to reach over time. THE DIFFERENCE COMMUNITY MAKES A housing volunteer learns of John’s talent for chess and spends hours playing with him, which better fills his days and gives him something to look forward to. Eventually, John is set up teaching chess to a class, and is able, for the first time in his life, to feel pride in himself.

Aza’s story Preferred Scenario At 35, Aza is diagnosed with cancer. With three small children to raise, no-one, least of all her, her parents or her doctor, is willing to admit she is dying. Pursuing treatment takes all the energy she has. Despite excellent technical cancer treatment, uncontrolled pain and difficulty breathing force her to go to emergency time and time again. Her cancer journey doesn’t account for her non-cancer health symptoms or for home help, and her family frequently feels helpless. Seriously weakened from aggressive treatment, Aza spends most of her last 2 months of life in hospital, away from her children. Preferred Scenario Without changing her course of treatment, Aza and her family are set up with comprehensive home-based care to better manage her pain, to assist with practical support, to educate her family about what to expect and how to respond, to develop a 24/7 crisis plan to keep her out of ER, to sort out her various medical interfaces and simplify their different demands on her, and to have an on-going conversation about what is most important to Aza and the trade-offs she is prepared to make. This allows Aza and her family to continue plan for the best while being more aware of and better prepared for the worst. In the end, Aza dies at home.

Care Partner Stories