Caregiving in Context: The Great Lillian Hall

Caregivers in Context: The Great Lillian Hall

By: Nichole Goble, Director of Community Initiatives

The history of television or movies depicting any form of dementia hasn’t always been great. The “crazy old person” or the feeble older adult who is seen only as a burden are harmful tropes that we’ve, thankfully, started to push back on. A recent addition to the list of movies showcasing individuals living with dementia and its impact on them and those around them is HBO’s The Great Lillian Hall, starring Jessica Lange in the title role as a legendary stage actress in the later stages of her career. Preparing for a Broadway production of Chekhov’s The Cherry Orchard—this film also has quite a bit to say about how women of a certain age in the performing arts are treated as their roles become next to nothing and is highlighted with a subplot where a producer is pushing the director of the show to replace Lillian with her understudy—she starts exhibiting symptoms associated with dementia, like forgetting her lines or bits of staging. As her symptoms progress, will she be able to continue with production?

Lillian is diagnosed with Lewy Body Dementia (LBD). The Lewy Body Dementia Association defines LBD as a brain disease characterized by a spectrum of symptoms involving disturbances of movement, cognition, behavior, sleep, and autonomic function. Two related clinical disorders make up the LBD spectrum: dementia with Lewy bodies (DLB) and Parkinson’s disease dementia (PDD). According to The Lewy Body Society, LBD accounts for roughly 15-20% of all dementia diagnoses. There is no known cause, but certain genetic markers can indicate an increased risk of developing LBD. Lillian begins taking medication but hides her diagnosis from everyone, blaming it on allergies. That lasts until her friend and long-time assistant, Edith, played by Kathy Bates, finds the medication in her purse. It just so happens that Edith had been a caregiver for her father, who was diagnosed with LBD. Edith reveals to Lillian that she found her medication and shares her past caregiving role.

Something I appreciated about this film was the picture it painted of an “extended” care team. Lillian is a widow, and her only daughter is grown and out of the house, making Edith her “constant” source of support. Edith’s role as a caregiver evolves from this point forward, and she seems to take up the role of primary caregiver. Lillian’s symptoms progress to include more pronounced issues with balance and hallucinations of her deceased husband. Being the only person with knowledge of Lillian’s condition, Edith finds herself in the role of primary caregiver. Part of me felt it was perhaps a bit too convenient for Edith to have the experience of caring for her father with LBD because she has a working knowledge through experience that many caregivers don’t have when their loved one is first diagnosed. We don’t see her researching the condition or seeking answers to questions caregivers often have at the start. However, the film does a nice job of showing some of the various ways Edith provides care for Lillian —leaving her an apple by the door so she remembers to eat, buying an in-ear mic set so she can “feed” lines to Lillian during rehearsals (and, later, the performances for an audience), and knowing her routine well enough after years of service to track her down when she wanders or get lost on her way to the theatre. We often neglect to think of people outside the immediate family as caregivers or even part of the care team, so I loved seeing how their relationship functioned. Edith knew how important it was for Lillian to perform and was committed to supporting her in what is likely her last role.

We also have Lillian’s daughter, Margaret, played by Lily Rabe. From the first interaction we see in the film between the two, Margaret knows something is “off” with her mom. Lillian had forgotten that Margaret was coming over for breakfast and was sleeping in when she arrived. Margaret reminds her mom about her work assignment that has put her in the area to visit. This happens even before Lillian gets her official diagnosis, and you can tell she is conflicted. She is the very definition of what is referred to as a “sandwich generation caregiver,” or someone who is caring for children while also starting to provide care for older loved ones (parents, grandparents, etc.). I appreciated that while they clearly cared deeply for each other, their relationship was complex. Lillian has always been dedicated to her work, which strained their relationship from an early age. Margaret comments about a housekeeper named Loretta, who served as a surrogate mother in Lillian’s frequent absence. She also talks about her mom giving her a doll once for her birthday, that turns out to be a prop taken from the play she was in at the time because Lillian “didn’t have time to shop for birthday presents.” Lillian surprises Margaret at her house during a day off, with her play’s director as her travel companion. Her mom’s arrival surprises her, but she is gracious and hosts them for lunch. She again notices differences with her mom (difficulty cutting strawberries, exhaustion/needing a nap) and does raise her concerns with the director.

When Lillian falls during rehearsal and is hospitalized, Margaret rushes to be there and learns of the LBD—from Lillian’s doctor. She is visibly angry and hurt that her mom didn’t tell her but entrusted Edith instead. This complicated relationship dynamic will no doubt resonate with many caregivers. To put it bluntly, we may not love our loved ones, but we provide care and support out of a sense of obligation or because there simply isn’t anyone else who can or will. I could appreciate Margaret’s hurt at not being told about her mom’s diagnosis. You get a sense that she feels like this is another rejection. Throughout her life, her mom’s primary focus has been on her career and the theatre. Once again, her mom is choosing something or someone else over her. This time, she “picks” or prioritizes Edith over her. Margaret even wonders if Lillian’s surprise visit was so that she could “audition” for the role of Lillian’s caregiver. I don’t doubt there is also a lot of fear and uncertainty she is dealing with. Maybe she is feeling guilty for not saying something to her mom or Edith about her concerns, knowing she noticed some of the early symptoms of her mom’s condition. Imagine sorting through those emotions in an emergency when you are scared. 

Lillian has a charming neighbor, Ty, played by Pierce Brosnan, with whom she has an evolving relationship. She initially acts as though she doesn’t like him, but then that turns to flirting, teasing him about all the women he has over. Their relationship seems like an attempt by her to cling to her “old” life. Ty and Lillian's relationship is the "lighter" of the relationships in the film, but even he takes on a role of support when he is helping her with lines before the play opens. His help isn't from a place of pity or a place of obligation. It is profound in light of Lillian's repeated line or reference to forgetting or losing who she is.

If I have a criticism of the film, it might be the cheerful ending. Lillian performs the role of Lyubov in The Cherry Orchard to a riveted audience that includes Margaret, her doctor, and others, with Edith giving her lines through an earpiece when she struggles. Her experiences make the performance personal and electric, especially when she goes off slightly “off book” before Edith can assist. It is great that we see Lillian’s wish for this role come to fruition with the support of family, friends, and colleagues. Still, it does seem to border on toxic positivity by negating or dismissing certain realities of the situation. Lillian has many privileges regarding resources and access to care that many do not, and it can make this film’s messages less impactful.

The depiction of older individuals with Alzheimer’s, Lewy Body, or other forms of dementia in films or television isn’t necessarily new. Still, the specificity and sensitivity in which we approach these stories is, to an extent. This film, thanks to standout performances, told a story brimming with related themes and underscoring empathy—not just for Lillian but those who are part of her care team as well.

 

Are you caring for a loved one with Alzheimer’s, LBD, or another form of dementia? Our Lighting Your Way describes the behavioral symptoms that your loved one may have—like aggression, agitation, and even delusions while Around the Clock Caregiving has tips for dealing with day-to-day activities.