Your Untold Stories of Dementia

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.

me and nana

Living with the Early Stages of Alzheimer’s

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.

Sibling Conflicts Around Caregiving

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.

Frontotemporal Dementia: Complications and Genetics

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. 

Caring for a Spouse with Long-Term Dementia

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.