We continue our series on hidden feelings this week with two stories about guilt, the kind we feel when we believe we didn’t do enough at the end of a parent’s life. We’ll hear from people who were troubled by the way they failed to show up for their parents, and discuss the process of finding relief from that guilt.
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 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.
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.