Caregivers in Context: The Great Lillian Hall

Caregivers in Context

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 New Addition: The Great Lillian Hall

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 Great 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?

Lewy Body Dementia

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. Great 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.

The Importance of an Extended Care Team

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.

Depicting the Complexity of Caregiving

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 frequently overlook people outside the immediate family as potential caregivers or part of the care team. This film did a great job of showcasing how Edith’s relationship with Lillian functioned as part of the care team.Edith recognized how important it was for Lillian to perform in this role. She was committed to supporting Great Lillian in what was likely her last acting opportunity.

The Relationship with Margaret

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. The character exemplifies what is known as a “sandwich generation caregiver.” This refers to someone who is caring for their own children while also beginning to provide care for their older loved ones, such as parents or grandparents. I appreciated that while they clearly cared deeply for each other, their relationship was complex.

The Strained Mother-Daughter Relationship

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. The character recalls her mom once giving her a doll for her birthday. It turns out this doll was actually a prop taken from the play Great Lillian was in at the time, since she “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. The character notices additional differences in her mom’s behavior, such as difficulty cutting strawberries and needing frequent naps. She does raise these new concerns with the play’s director.

Discovery of Lillian’s Condition

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 be blunt, we may not always love our loved ones unconditionally. However, we provide care and support out of a sense of obligation, or because there is simply no one 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.The character may be feeling guilty for not speaking up to her mom or Edith about her concerns. She likely noticed some of the early symptoms of her mom’s condition but did not say anything. Imagine sorting through those emotions in an emergency when you are scared.

Lillian’s Neighbor Ty

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 portrayed as the “lighter” one in the film. However, even Ty takes on a supportive role when he helps Lillian with her 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.

A Cheerful Ending

If I have a criticism of the film, it might be the cheerful ending. In the film, Lillian performs the role of Lyubov in The Cherry Orchard to a riveted audience that includes her doctor Margaret and others. Edith helps Lillian by giving her lines through an earpiece when she struggles with the performance. 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 access to significant resources and care, privileges that many do not share. This can make the film’s messages less impactful for some viewers who lack such access.

Final Thoughts

The depiction of older individuals with Alzheimer’s, Lewy Body, or other forms of dementia in films or television is not entirely new. However, the sensitive and nuanced portrayal in this particular film stands out. Still, the specificity and sensitivity in which we approach these stories is, to an extent.This film featured standout performances that told a story brimming with related themes. It underscored the importance of empathy – not just for Lillian, but for 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.

By: Nichole Goble, Director of Community Initiatives