AMA CXO Todd Unger discusses caring for LGBTQ seniors and addressing disparities during end-of-life care with Carey Candrian, PhD, an associate professor at the University of Colorado School of Medicine in Denver.
0:00 AMA Moving Medicine for June 21, 2022 1:04 What disparities affect LGBTQ older adults, specifically? 2:04 What is driving these disparities in LGBTQ older adults? 4:06 How have previous stigmas taken a toll on LGBTQ seniors mental health? 5:35 Why are LGBT older adults at particular risk for receiving inequitable end-of-life care? 8:17 How is end-of-life care different from other areas of health care where we don’t see these huge gaps? 8:43 What are the drivers of this discrimination? 9:53 What kind of data would be helpful—and how can it best be collected by care providers? 11:46 What do you mean by “breaking the script” when it comes to communication with LGBTQ older adults? 13:30 How would you like to see end-of-life care evolve and what do we need to do to get there?
My father was 92 years old. He had congestive heart failure and COPD. He was living on oxygen and a dozen medications that had kept him alive since a debilitating stroke paralyzed him forty years ago. Last year, when his doctors told him that he was dying in a matter of weeks, or months, he urgently, desperately needed to end his life on his own terms.
My phone would ring in my Brooklyn apartment.
“Dad?”
“You have to help me die today, Rachel. I need to die today, please.”
“I can’t help you die today, Dad.”
“Rachel, please, you have to help me.”
This is how it went, day after day, sometimes several times a day, until my brother realized that in California, where they live, it was legal for my father to choose to end his own life.
And that is how I found myself at my father’s bedside in Los Angeles, supporting him as he took his own life, as his daughter and as his rabbi.
Judaism holds life sacred. In Genesis, when creating humans, G-d sees that it is very good. G-d creates us in G-d’s own image and breathes life into human beings, giving human life supreme value. The Mishnah teaches that saving one life is like saving an entire world. Pikuach nefesh (saving a life) supersedes all other mitzvot, except those forbidding murder, adultery, and idolatry. This love of life is the foundation of Jewish ethics and has led our tradition to stand firmly against any action that would lead to death.
Thus we read in the “Comprehensive Guide to Medical Halakha,” published in 1990 by Abraham S. Abraham:
“One may not hasten a death, even that of a patient who is suffering greatly and for whom there is no hope of a cure, even if the patient asks that this be done. To shorten the life of a person, even a life of agony and suffering, is forbidden.”
And in “Modern Medicine and Jewish Ethics” by Fred Rosner in 1991:
“Any positive act designed to hasten the death of the patient is equated with murder in Jewish law …. only the Creator, who bestows the gift of life, may relieve man of that life, even when it has become a burden rather than a blessing.”
I am a rabbi. I know well Judaism’s ban on euthanasia. But when I understood that my father would take his own life, I knew without a doubt that I would be by his side. He had soldiered on in this life for 92 years, uncomplaining, to be there for us and for his grandchildren. Now he wanted to leave the world, and all I could do was honor his wishes.
As this became my father’s story, I began to inquire more deeply into our tradition and found voices questioning this consensus in Jewish law. For example, Rabbi Leonard Kravitz argues that the story of the torturous death of Rabbi Hananiah at the hands of the Romans, which is usually read as a proof-text for the ban on euthanasia, can equally be read to make the case that hastening death when death is inevitable is an act of mercy. Rabbi Kravitz argues that Jews who are terminally ill and suffering should be able to choose a mitah yafah, a good death, which Rashi defines as sheyamut maher, that they should die quickly, particularly given that the Talmud prescribes this kind of death for criminals who will be executed by the court. If criminals deserve a good death, a death in which they are spared long, slow agony and suffering, Rabbi Kravitz argues, shouldn’t those who’ve committed no crime be allowed to choose this as well?
I raise this now in this public forum because my sister has made a film about my father’s death called “Last Flight Home,” and her film is premiering at the Sundance Film Festival today. In the film, viewers will see me, acting as a daughter and also a rabbi, loving and supporting my father as he ends his own life. I am aware that this will be upsetting and even offensive to many in the Jewish community. I do not wish to create controversy on this issue, and I would not have chosen to make this film. I would not have chosen for my father’s death to be viewed by the public at all, and I would not have chosen to champion this issue. But I have cared for others who desperately wished for this choice at the end of their lives, and I think it might be time for the Jewish people to reconsider our views on this important matter.
March 3rd will be my father’s first yahrzeit. May his memory forever be a blessing.
The reports from covid-19 patients are disconcerting. Only a few hours before, they were enjoying a cup of pungent coffee or the fragrance of flowers in a garden. Then, as if a switch had been flipped, those smells disappeared.
Young and old alike are affected — more than 80% to 90% of those diagnosed with the virus, according to some estimates. While most people recover in a few months, 16% take half a year or longer to do so, research has found. According to new estimates, up to 1.6 million Americans have chronic smell problems due to covid.
Seniors are especially vulnerable, experts suggest. “We know that many older adults have a compromised sense of smell to begin with. Add to that the insult of covid, and it made these problems worse,” said Dr. Jayant Pinto, a professor of surgery and specialist in sinus and nasal diseases at the University of Chicago Medical Center.
Recent data highlights the interaction between covid, advanced age and loss of smell. When Italian researchers evaluated 101 patients who’d been hospitalized for mild to moderate covid, 50 showed objective signs of smell impairment six months later. Those 65 or older were nearly twice as likely to be impaired; those 75 or older were more than 2½ times as likely.
Most people aren’t aware of the extent to which smell can be diminished in later life. More than half of 65- to 80-year-olds have some degree of smell loss, or olfactory dysfunction, as it’s known in the scientific literature. That rises to as high as 80% for those even older. People affected often report concerns about safety, less enjoyment eating and an impaired quality of life.
But because the ability to detect, identify and discriminate among odors declines gradually, most older adults — up to 75% of those with some degree of smell loss — don’t realize they’re affected.
A host of factors are believed to contribute to age-related smell loss, including a reduction in the number of olfactory sensory neurons in the nose, which are essential for detecting odors; changes in stem cells that replenish these neurons every few months; atrophy of the processing center for smell in the brain, called the olfactory bulb; and the shrinkage of brain centers closely connected with the olfactory bulb, such as the hippocampus, a region central to learning and memory.
Also, environmental toxic substances such as air pollution play a part, research shows. “Olfactory neurons in your nose are basically little pieces of your brain hanging out in the outside world,” and exposure to them over time damages those neurons and the tissues that support them, explained Pamela Dalton, a principal investigator at the Monell Chemical Senses Center, a smell and taste research institute in Philadelphia.
Still, the complex workings of the olfactory system have not been mapped in detail yet, and much remains unknown, said Dr. Sandeep Robert Datta, a professor of neurobiology at Harvard Medical School.
“We tend to think of our sense of smell as primarily aesthetic,” he said. “What’s very clear is that it’s far more important. The olfactory system plays a key role in maintaining our emotional well-being and connecting us with the world.”
Datta experienced this after having a bone marrow transplant followed by chemotherapy years ago. Unable to smell or taste food, he said, he felt “very disoriented” in his environment.
Common consequences of smell loss include a loss of appetite (without smell, taste is deeply compromised), difficulty monitoring personal hygiene, depression and an inability to detect noxious fumes. In older adults, this can lead to weight loss, malnutrition, frailty, inadequate personal care, and accidents caused by gas leaks or fires.
Jerome Pisano, 75, of Bloomington, Illinois, has been living with smell loss for five years. Repeated tests and consultations with physicians haven’t pinpointed a reason for this ailment, and sometimes he feels “hopeless,” Pisano admitted.
Before he became smell-impaired, Pisano was certified as a wine specialist. He has an 800-bottle wine cellar. “I can’t appreciate that as much as I’d like. I miss the smell of cut grass. Flowers. My wife’s cooking,” he said. “It certainly does decrease my quality of life.”
Smell loss is also associated in various research studies with a higher risk of death for older adults. One study, authored by Pinto and colleagues, found that older adults with olfactory dysfunction were nearly three times as likely to die over a period of five years as seniors whose sense of smell remained intact.
“Our sense of smell signals how our nervous system is doing and how well our brain is doing overall,” Pinto said. According to a review published earlier this year, 90% of people with early-stage Parkinson’s disease and more than 80% of people with Alzheimer’s disease have olfactory dysfunction — a symptom that can precede other symptoms by many years.
There is no treatment for smell loss associated with neurological illness or head trauma, but if someone has persistent sinus problems or allergies that cause congestion, an over-the-counter antihistamine or nasal steroid spray can help. Usually, smell returns in a few weeks.
For smell loss following a viral infection, the picture is less clear. It’s not known, yet, which viruses are associated with olfactory dysfunction, why they damage smell and what trajectory recovery takes. Covid may help shine a light on this since it has inspired a wave of research on olfaction loss around the world.
“What characteristics make people more vulnerable to a persistent loss of smell after a virus? We don’t know that, but I think we will because that research is underway and we’ve never had a cohort [of people with smell loss] this large to study,” said Dalton, of the Monell center.
Some experts recommend smell training, noting evidence of efficacy and no indication of harm. This involves sniffing four distinct scents (often eucalyptus, lemon, rose and cloves) twice a day for 30 seconds each, usually for four weeks. Sometimes the practice is combined with pictures of the items being smelled, a form of visual reinforcement.
The theory is that “practice, practice, practice” will stimulate the olfactory system, said Charles Greer, a professor of neurosurgery and neuroscience at Yale School of Medicine. Although scientific support isn’t well established, he said, he often recommends that people who think their smell is declining “get a shelf full of spices and smell them on a regular basis.”
Richard Doty, director of the University of Pennsylvania’s Smell and Taste Center, remains skeptical. He’s writing a review of smell training and notes that 20% to 30% of people with viral infections and smell loss recover in a relatively short time, whether or not they pursue this therapy.
“The main thing we recommend is avoid polluted environments and get your full complement of vitamins,” since several vitamins play an important role in maintaining the olfactory system, he said.
— A Geriatrician Learns the Emotional and Physical Toll of Caregiving
Dr. Rebecca Elon’s life took an unexpected turn in 2013 when she noticed personality changes and judgment lapses in her husband, Dr. William Henry Adler III. He was eventually diagnosed with frontotemporal dementia with motor neuron disease and died in February.
The loss of a husband. The death of a sister. Taking in an elderly mother with dementia.
This has been a year like none other for Dr. Rebecca Elon, who has dedicated her professional life to helping older adults.
It’s taught her what families go through when caring for someone with serious illness as nothing has before. “Reading about caregiving of this kind was one thing. Experiencing it was entirely different,” she told me.
Were it not for the challenges she’s faced during the coronavirus pandemic, Elon might not have learned firsthand how exhausting end-of-life care can be, physically and emotionally — something she understood only abstractly previously as a geriatrician.
And she might not have been struck by what she called the deepest lesson of this pandemic: that caregiving is a manifestation of love and that love means being present with someone even when suffering seems overwhelming.
All these experiences have been “a gift, in a way: They’ve truly changed me,” said Elon, 66, a part-time associate professor at Johns Hopkins University School of Medicine and an adjunct associate professor at the University of Maryland School of Medicine.
Elon’s uniquely rich perspective on the pandemic is informed by her multiple roles: family caregiver, geriatrician and policy expert specializing in long-term care. “I don’t think we, as a nation, are going to make needed improvements [in long-term care] until we take responsibility for our aging mothers and fathers — and do so with love and respect,” she told me.
Elon has been acutely aware of prejudice against older adults — and determined to overcome it — since she first expressed interest in geriatrics in the late 1970s. “Why in the world would you want to do that?” she recalled being asked by a department chair at Baylor College of Medicine, where she was a medical student. “What can you possibly do for those [old] people?”
Elon ignored the scorn and became the first geriatrics fellow at Baylor, in Houston, in 1984. She cherished the elderly aunts and uncles she had visited every year during her childhood and was eager to focus on this new specialty, which was just being established in the U.S. “She’s an extraordinary advocate for elders and families,” said Dr. Kris Kuhn, a retired geriatrician and longtime friend.
In 2007, Elon was named geriatrician of the year by the American Geriatrics Society.
Her life took an unexpected turn in 2013 when she started noticing personality changes and judgment lapses in her husband, Dr. William Henry Adler III, former chief of clinical immunology research at the National Institute on Aging, part of the federal National Institutes of Health. Proud and stubborn, he refused to seek medical attention for several years.
Eventually, however, Adler’s decline accelerated and in 2017 a neurologist diagnosed frontotemporal dementia with motor neuron disease, an immobilizing condition. Two years later, Adler could barely swallow or speak and had lost the ability to climb down the stairs in their Severna Park, Maryland, house. “He became a prisoner in our upstairs bedroom,” Elon said.
By then, Elon had cut back on work significantly and hired a home health aide to come in several days a week.
In January 2020, Elon enrolled Adler in hospice and began arranging to move him to a nearby assisted living center. Then, the pandemic hit. Hospice staffers stopped coming. The home health aide quit. The assisted living center went on lockdown. Not visiting Adler wasn’t imaginable, so Elon kept him at home, remaining responsible for his care.
“I lost 20 pounds in four months,” she told me. “It was incredibly demanding work, caring for him.”
Meanwhile, another crisis was brewing. In Kankakee, Illinois, Elon’s sister, Melissa Davis, was dying of esophageal cancer and no longer able to care for their mother, Betty Davis, 96. The two had lived together for more than a decade and Davis, who has dementia, required significant assistance.
Dr. Rebecca Elon’s sister Melissa Davis (right) was the primary caretaker for their mother, Betty Davis, for the past 10 years. But new living arrangements had to be made for their mother when Melissa Davis died of esophageal cancer in May 2020.
Elon sprang into action. She and two other sisters moved their mother to an assisted living facility in Kankakee while Elon decided to relocate a few hours away, at a continuing care retirement community in Milwaukee, where she’d spent her childhood. “It was time to leave the East Coast behind and be closer to family,” she said.
By the end of May, Elon and her husband were settled in a two-bedroom apartment in Milwaukee with a balcony looking out over Lake Michigan. The facility has a restaurant downstairs that delivered meals, a concierge service, a helpful hospice agency in the area and other amenities that relieved Elon’s isolation.
“I finally had help,” she told me. “It was like night and day.”
Previously bedbound, Adler would transfer to a chair with the help of a lift (one couldn’t be installed in their Maryland home) and look contentedly out the window at paragliders and boats sailing by.
“In medicine, we often look at people who are profoundly impaired and ask, ‘What kind of quality of life is that?’” Elon said. “But even though Bill was so profoundly impaired, he still had a strong will to live and retained the capacity for joy and interaction.” If she hadn’t been by his side day and night, Elon said, she might not have appreciated this.
Meanwhile, her mother moved to an assisted living center outside Milwaukee to be nearer to Elon and other family members. But things didn’t go well. The facility was on lockdown most of the time and staff members weren’t especially attentive. Concerned about her mother’s well-being, Elon took her out of the facility and brought her to her apartment in late December.
For two months, she tended to her husband’s and mother’s needs. In mid-February, Adler, then 81, took a sharp turn for the worse. Unable to speak, his face set in a grimace, he pounded the bed with his hands, breathing heavily. With hospice workers’ help, Elon began administering morphine to ease his pain and agitation.
“I thought, ‘Oh, my God, is this what we ask families to deal with?’” she said. Though she had been a hospice medical director, “that didn’t prepare me for the emotional exhaustion and the ambivalence of giving morphine to my husband.”
Elon’s mother was distraught when Adler died 10 days later, asking repeatedly what had happened to him and weeping when she was told. At some point, Elon realized her mother was also grieving all the losses she had endured over the past year: the loss of her home and friends in Kankakee; the loss of Melissa, who’d died in May; and the loss of her independence.
That, too, was a revelation made possible by being with her every day. “The dogma with people with dementia is you just stop talking about death because they can’t process it,” Elon said. “But I think that if you repeat what’s happened over and over and you put it in context and you give them time, they can grieve and start to recover.”
“Mom is doing so much better with Rebecca,” said Deborah Bliss, 69, Elon’s older sister, who lives in Plano, Texas, and who believes there are benefits for her sister as well. “I think having [Mom] there after Bill died, having someone else to care for, has been a good distraction.”
And so, for Elon, as for so many families across the country, a new chapter has begun, born out of harsh necessities. The days pass relatively calmly, as Elon works and she and her mother spend time together.
“Mom will look out at the lake and say, ‘Oh, my goodness, these colors are so beautiful,’” Elon said. “When I cook, she’ll tell me, ‘It’s so nice to have a meal with you.’ When she goes to bed at night, she’ll say, ‘Oh, this bed feels so wonderful.’ She’s happy on a moment-to-moment basis. And I’m very thankful she’s with me.”
The late Cloris Leachman delivers a touching swansong in this small-scale Canadian drama
Jump, Darling, with Cloris Leachman and Thomas Duplesses
By Allan Hunter
The late Cloris Leachman remains an inveterate scene stealer in Jump, Darling, a small-scale drama that provides her with a touching swansong. Phil Connell’s compact tale of a young drag queen’s emotional travails finds its heart in the chemistry between Leachman and co-star Thomas Duplessie. LGBTQ festivals should provide some traction for a modest tale that will feel at home on domestic screens.
Every time she appears, Leachman adds an extra zing to the proceedings
Writer/director Connell wastes little time in scene-setting, instead propelling us into the world of aspiring actor Russell (Duplessie) who has found a second wind and a potential new career as Toronto drag queen Fishy Falters.
His commitment to drag provokes a parting of the ways with wealthy, status conscious boyfriend Justin (Andrew Bushell). After a disastrous appearance at Peckers night club, Russell decides to leave town and take temporary sanctuary with his elderly grandmother Margaret (Leachman) in Prince Edward County.
Margaret is all too aware of her frailties and forgetfulness but remains determined to avoid becoming a resident at the local Millbrook Care Home. Russell’s arrival could be the solution to her problem.
Jump, Darling travels along predictable roads as family secrets are revealed, ghosts of the past confronted and separate generations discover the strength to be true to themselves. What makes the journey worthwhile are the performances. Leachman completed two further films before her death earlier this year aged 94. This is her last starring role. She is physically frail but delivers a sardonic one-liner with impeccable comic timing and brings out the poignancy in a spirited, frightened woman whose final wish is to have a good death in her own home. Every time she appears, Leachman adds an extra zing to the proceedings and it feels as if the film belongs to Margaret.
Russell may be trying to figure out his future but there feels less at stake for his character as he dallies with elusive bartender Zacahry (Kwaku Adu-Poku) and brings his drag persona to brighten up local bar Hannah’s Hovel.
Duplessie makes a convincing drag artiste. There is some of the relish of Tim Curry’s Frank n Furter in his Fishy Falters and Connell captures his committed lip-synching performances with dynamic camerawork and sharp editing. The film also features appearances from real life Toronto drag acts Tynomi Banks, Fay Slift and Miss Fiercalicious.
Cinematographer Viktor Cahoj conveys the charms of this wine country corner of rural Canada that are compiled into attractive montages. It is a promising first feature but the characters surrounding Russell are thinly drawn, especially Justin and Zachary. Russell’s exasperated mother Ene (Linda Kash) seems to exist merely to chide and then reconcile.
Connell’s need to keep the narrative forever moving forward comes at a cost. Jump, Darling has a trim running time but a little more complexity or contemplation would have been welcome. The lack of depth in the supporting characters is more apparent when the focus returns to the emotional plight of Margaret in her final days which feels very real and very moving.
“I find that I am a magnet to it and I really care and I want to talk to people about sad, happy, absolutely everything,” she said. “When you keep death natural you get to see the beauty in it.”
Hamilton works as the executive director for the Revelstoke Hospice Society and as a death care practitioner, also known as a death doula. She hosts monthly death cafes where people can ask questions and talk freely about dying.
“I want to teach as many people as I possibly can what they have within themselves, and I have seen how, when you do a lot of the work around creating quality of life for people before the end of life, or creating rituals or ceremonies or being able to create a legacy project with somebody before they have died, that always ends up helping the grieving process,” she said.
Hamilton and her partner bought a home in Revelstoke in 2016, but had spent the previous five winters in the city, going back and fourth between here and Grand Bend, Ont.
For five years she worked at the La Baguette at RMR.
“I was immersed in everyone riding and loving the ski hill. I think just being a happy face in people’s daily lives just really kind of launched me (in the community),” she said.
But eventually she felt she had to put her education to use.
Hamilton originally went to university intending to be a social worker. There she discovered thanatology, the scientific study of death and losses.
She also completed Indigenous Studies, which changed her views on dying and made her realize how much she had to unlearn.
“It is a more holistic method than we are used to,” she said.
Hamilton has been volunteering for hospice societies in every town she’s lived in.
“I really admired how small and mighty they were,” she said.
Revelstoke was no different, and with the previous director stepping out, Hamilton was tapped to take over. Though she is now paid by the society, she said she probably volunteers more now than she did before.
Hamilton also helps with Community Connection’s Food Recovery program, the Revelstoke Snowboard club and the Revelstoke Performing Arts Centre, when they are operating in-person.
“I just think that volunteering is your daily vote for democracy,” she said. “I am creating the world that I want to live in.”
Hamilton is also an activist and she supports everyone’s projects.
“Social justice anything is always on my radar because I think we have safety in numbers,” she said.
With all these causes under her belt, she often gets labelled a “Mother Theresa” type, which is something she brushes off.
“I don’t see it as being amazing the way my friends tell me it is amazing, it’s just like, ‘Yeah, but, that’s life,’” she said.
However, the namesake she is happy to claim is her grandmother Theresa, who she never met, but who also did death care work through the Catholic church.
“It’s really nice to know that I am fulfilling my ancestors roll,” Hamilton said.
The Oscar documentary shortlist abounds with memorable love stories—between a woman and her incarcerated husband in Time, between a man and a mollusk in My Octopus Teacher, and in Dick Johnson Is Dead, between a daughter and her aging father.
Of those three films, Dick Johnson Is Dead qualifies as the most unusual stylistically. Director Kirsten Johnson, faced with her beloved father’s cognitive decline, conceived various outlandish scenarios in which her dad might die, and then filmed them.
“The premise of the movie is that we were going to kill my father over and over again with the help of stunt people until he really died for real. Why? Because we wanted to keep bringing him back to life,” Johnson tells Deadline. “I think we desperately needed to laugh because dementia will rip your heart out and you could just cry for decades if you didn’t find a way to laugh at it.”
In one scene, an air conditioner falls from high above on top over her father, crushing him. In another he takes an awful tumble down a flight of stairs, ending up in a twisted heap. Dick Johnson, a man with a genial disposition, takes part in this filmic experiment with endearing enthusiasm.
“I think cinema is play. And my father is ‘game,’ he’s game to participate in this,” Johnson comments. “He thought the idea was hilarious and it was like, ‘Okay, we’re doing this.’”
Before encroaching dementia prompted his retirement, Dick Johnson worked for decades as a psychiatrist. Perhaps appropriately, the subconscious mind informed the documentary from the start.
“I had this crazy dream where there was this casket and a man sat up—it wasn’t my dad—he said, ‘I’m Dick Johnson and I’m not dead yet,’” the director recalls. “I probably did unconsciously understand that the dementia had begun. I wasn’t consciously aware of it at that moment, but I think in the way that dreams and brains try to tell you things, now when I think about it, it was an unrecognizable man who was my father, which is sort of what the dementia would do. I think in some ways that dream was like, ‘Wake up! Your dad is changing.’”
Johnson had previously gone through the agonizing experience of losing her mother to Alzheimer’s.
“Honestly, I was like so mad to have had my mom already have it. I was like, ‘Are you kidding me?’ I was sort of enraged at the idea of having to face it again,” she confesses. “It just felt like, ‘Let me come up with another plan, another idea, another way,’ this Holy Grail of, ‘Could this be a funny movie? Please?’ We had some fun doing it and we had some tears doing it.”
The Netflix film, a strong contender for an Oscar nomination, premiered last January at the Sundance Film Festival, where it won a special jury award for Innovation in Nonfiction Storytelling. It’s gone on to win multiple honors, including Best Documentary at the Critics’ Choice Documentary Awards, as well as best writing for Johnson and Nels Bangerter and best editing for Bangerter at the IDA Documentary Awards. Dick Johnson Is Dead was named one of the top five documentaries of the year by the National Board of Review and has earned a Producers Guild Award nomination.
On paper, the concept of the film might strike some as morbid. But audiences have responded emotionally to the film’s whimsical and yet somehow frank way of confronting the prospect of a loved one’s demise.
“From my point of view, facing pain—when you can do it with people you love and with the capacity to attempt to build something new out of it, whether it’s a new relationship or whether it is transformed into some form of art—I think that that is the only hope we have,” Johnson observes. “That, in some ways, is how we have survived as people—we sort of offer back out to each other these forms or witness.”
Dick Johnson Is Dead resonates forcefully in a time when Covid-19 has claimed so many lives.
“The pandemic in some ways has opened every human up to the experience of anticipatory grief. We don’t know how much we’re going to lose and we’re afraid of how much we’re going to lose,” Johnson says. “If you love a person with a degenerative disease [like dementia] you have a great deal of experience with anticipatory grief. You’re grieving about what you’ve lost already, what you might lose, what you’re not sure when you’re going to lose.”
That’s particularly difficult to contemplate in Johnson’s case, having a father who’s meant everything to her.
“He has treasured me for the person that I am and allowed me to be sort of as big as I wanted to be…He saw me. I think so many of us struggle with not being seen or not being allowed,” Johnson tells Deadline. “That’s who he is and who he was. Even in the advanced dementia now he’ll call me and say, ‘I just want to make sure you know I love you.’”
