This episode features two conversations with people involved in the hospice program within the state prison in Warren, Maine. First we speak with the program’s founder, Kandyce Powell, executive director of the Maine Hospice Council. Kandyce talks about the genesis of the prison’s hospice program, her motivation for starting it, and the difference it has made in the lives of the men who die in prison, as well in the lives of the prisoners who volunteer to provide them care. In the second half of the episode we hear from one of those inmates, Bobby Payzant, who has been part of the program for more than two years. He talks about why he is incarcerated, and how he became interested in joining the hospice program. He also reveals that the hospice volunteers have formed a band called The Sounds of Comfort, and we close the episode with one of their songs.
This week we conclude our series on the untold stories of dementia by presenting a collection of stories from you, our listeners, about the ways that dementia has affected your lives. This collection of ten stories reflects the wide range of experiences and emotions that result from having a loved one with dementia – including frustration and poignant loss, but also warmth, connection, and surprising moments of sweetness.
Update: We received two other contributions to this series from listeners: A link to an Alzheimer’s documentary by Scott Kirschenbaum. The film follows one woman as she talks about her life in an assisted living facility and can be found at: yourelookingatme.com
And this picture below from Sandra Horne, from some of her last days looking after her grandmother who had dementia.
An interview with Bill Verrill, a former banker, who now suffers from early Alzheimer’s disease. Bill describes his deep trust in his wife Shirley’s ability to take care of him, but his deepest fear is for her, and the toll his illness will take on her life. He talks about letting go of his driver’s license and the challenge of feeling dependent on others. Bill movingly describes his frustration at not being able to complete tasks as he used to, despite his determination to keep reading and working on the computer as long as he still can. He also describes his wish for a forum to talk to other people with dementia, since most support groups are for the caregiver, not for the actual patient. After the interview we found this link to Memory Works Cafes for those with dementia, held monthly throughout Maine.
An interview with elder-caregiving expert Carol Bradley Bursack about sibling conflict in the care of a parent with Dementia. Carol reports that most adult children caregivers are still women, and that typically the responsibilities of caregiving fall mostly to one child within a family. This creates the conditions for old resentments, jealousies, and conflicts to resurface, especially with regard to favoritism, money, inheritance, and hours of unacknowledged caregiving work. Carol tells stories of conflict and offers preventative suggestions for how families can navigate these challenges intact.
Dr. Anne talks to her mother, Clare Hallward, about the dementia of Anne’s father and Clare’s husband, John, which lasted for 16 years before his death. They talk about some of the exasperating and even downright terrifying challenges of caring for John as his illness progressed. They discuss key decision points in his care that allowed Clare to have her own life, and that allowed him to continue to make a contribution to their life even when ill. Clare describes how it felt to make the difficult decisions to move her husband to a nursing home, and later to withhold antibiotics and allow him to die of pneumonia.