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.
A Live Forum for Courageous Conversations.
Safe Space is a show about subjects that are hard to talk about--a respectful forum for courageous conversations about difficult subjects in order to reduce stigma, provide education, offer hope and access to resources. It is a space for the in depth discussion of matters that touch hearts and yet feel risky to share; subjects that deserve, but rarely get, thoughtful consideration.
The topics on Safe Space often deal with the guests’ courage to accept difference in themselves, especially when they feel afraid or ashamed about that difference. Shame is a painful psychological and emotional experience, but it is also a cultural and political force. All acts of courage inspire others to take risks, to express themselves, to be themselves. Such acts have political force to stand up to silencing, to create change.
Each show attempts to name and acknowledge difficult feelings, and to honor those who have found their own way of putting them into perspective. Listening to Safe Space will introduce you to many who are daring to speak about what is true for them as they find a way to turn their deepest wounds or hidden struggles into a gift for others. Giving voice to the unspeakable is ultimately an act of generosity and courage that makes our world more hospitable and welcoming to the parts of each of us that feel vulnerable.
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.
A conversation with Melynda, whose husband’s early-onset dementia has hit their family especially hard. He has frontotemporal dementia (FTD), which unlike Alzheimer’s is not first characterized by problems with memory, but by poor judgment and inappropriate behavior. Melynda’s husband, a doctor, began to make errors in judgment by over-prescribing pain medications to his patients, and was incarcerated for these mistakes. After his incarceration, the family learned that his illness is genetic and that all of the six children were at risk. Melynda talks about her initial struggles to understand what was happening to her husband and how his diagnosis transformed her frustration into compassion and forgiveness. She also discusses their children’s decisions about whether or not to find out if they carry the gene which causes FTD.
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.
A conversation with therapist Nancy Sowell about the family secrets that came out as she was caring for her grandmother with dementia. Nancy recounts the curious distance and even hostility she had always felt from this side of the family, and how it all began to make sense as her grandmother opened up for the first time. She describes the powerful way that dementia can lift a person’s inhibitions, occasionally allowing for shared grief and even healing of old wounds that she had only sensed were there. She also discusses the power of secrets and shame in families, and how difficult it is, even now, to know how to talk about a painful secret with the rest of the family.
A conversation with Liz Havu about the experience of caring for her mother, who has both Alzheimer’s disease and vascular dementia. She discusses the progression of her mother’s illness, and the corresponding adjustments and sacrifices she’s had to make in her own life in order to be her mother’s primary caregiver. She talks about her promise never to put her mother in a nursing home, and how this decision has brought her family together in more ways than one.
A conversation with Frances Randolph, whose husband had early-onset Alzheimer’s. Frances talks about the outgoing man she married and how dementia changed him so much that he became someone she barely recognized, someone who ultimately became violent with her. She describes the events that led up to him being transferred to a nursing home, and how she gave herself permission to care for herself even if that meant only going for short visits. Frances describes the series of losses inherent in his Alzheimer’s, including the loss of her sense of herself as a wife. She reports that it was only after his death that she could reclaim her memories of him, as a man with dancing eyes…
A conversation with Julia Jarvis about how her relationship with her difficult father has evolved both before and after he got dementia. She describes how during her childhood, Julia’s father was moody, punitive, and sexually inappropriate. For this reason she limited her contact with him, but with the birth of her own children she allowed him a second chance to be a part of her life. Now that he has dementia, some of his previous tendencies have returned, but in a different form. Julia talks about her struggles to make peace with him, and about the challenges now faced by the caregivers in her father’s life.