Aiding Her Dying Husband

— 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.

By Judith Graham

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.”

Complete Article HERE!

We asked two experts to watch The Father and Supernova.

These new films show the fear and loss that come with dementia

BY Fran McInerney

Two new films explore the fear of forgetting, loss of control, and other complexities that accompany a dementia diagnosis. The Father and Supernova , both released this month, grapple with the challenges confronting people living with dementia and those who love them.

Dementia is the seventh leading cause of death worldwide , and the second leading cause of death in Australia . The media has an important role in shaping public understanding of poorly understood conditions such as dementia , and it is pleasing to see it considered thoughtfully in both films.

We watched these films through our lenses as a clinician and a neuroscientist. The different causes and conditions that make up the umbrella term of dementia mean the experiences of people living with it — and their loved ones — can differ widely. These films illustrate this well.

Marching through the brain

Because different parts of the brain control different functions, the type of dementia is defined by its pathology, origin in the brain and progression .

In Supernova, directed by British filmmaker Harry Macqueen and starring Colin Firth and Stanley Tucci, we see a fairly accurate representation of frontotemporal dementia. Specifically, this is the type where certain language skills are impaired, known as semantic dementia.

The Father, meanwhile, directed by French playwright Florian Zeller and based on his play of the same name, centres on a protagonist, Anthony (played by Anthony Hopkins), with Alzheimer’s disease, the most common cause of dementia.

Owing to the neurodegenerative nature of dementia, people with this diagnosis experience a progressive deterioration of memory, thinking and behaviour, and gradually lose the ability to perform daily tasks and other physical functions, ultimately leading to death.

‘I don’t need her or anyone else. I can manage very well on my own.’

Both films accurately reflect many of the key early features of these forms of dementia and provide insight into the varied presentations and issues associated with the conditions.

Whereas The Father focuses more heavily on the experience of the individual living with dementia, Supernova gives more attention to shared grief and loss.

Caring and sharing

In Supernova, Tusker (Tucci) and Sam (Firth) take a roadtrip through stunning northern England. We soon learn the journey is as much an adventure to visit Sam’s family, as it is an exploration of their own mortality.

‘You’re still the same person, Tusker,’ says Sam. ‘No I’m not, I just look like him,’ his partner responds.

Unlike many other illnesses, those living with dementia frequently show no outward physical signs of their condition until late in its course, and Tusker appears in good physical health.

We witness Sam’s panic when Tusker and their dog Ruby go missing. Impulsivity and spatial disorientation are common phenomena experienced in dementia. Later, Sam masks his distress (as carers often do), attributing his tears to cutting an onion while preparing dinner.

‘Can you tell? That it’s gotten worse?’

Dementia is a condition that affects the person progressively and globally; we initially only see subtle symptoms of Tusker’s language loss, for example, when he can’t find the word ‘triangle’. Later we note his loss of instrumental function: needing two hands to guide a glass to his mouth, negotiating which arm goes into which sleeve while dressing. Sam tenderly maintains Tusker’s dignity while helping him dress.

When Sam finds Tusker’s notebook, the writing in it has deteriorated across the pages to an indecipherable scrawl. The last pages are blank.

Tusker declares he is dying — dementia is a terminal illness — but how long he has left is unknown. The median time from dementia diagnosis to death is five years. For a previously high-achieving person like Tusker, the loss of his cognitive ability feels more profound to the viewer.

Frightening experience

While The Father may appear to be an imagined horror story, it masterfully presents the disorientating and frightening reality for a person living with dementia.

Anthony is a powerful and compelling character who draws us into his internal chaos – unaware that he is losing his sense of self in place and time. We learn he has been an engineer and father of two daughters, and lives in a comfortable dwelling in a leafy London suburb. He is by turns irascible and charming. Like Tusker, he appears physically fit, well-groomed and fed.

The early narrative tension revolves around Anthony refusing home help. He denies verbally abusing a recent carer and accuses her of stealing his watch; when this is shown to be false he shows no insight or remorse. Those living with dementia may strive to make sense of things they cannot remember by imaginatively filling in the gaps .

People with dementia are altered by the disease, but it’s important to remember that who they are as a person still endures. IMDB

Seeing the world through Anthony’s eyes is a masterful plot device as we the viewers are not quite sure of what is ‘real’. At some early points we wonder if Anthony is being abused or gaslighted as we are drawn into his perceptions; later we learn that the lens through which we see Anthony’s world is distorted, but a terrifying reality to him.

Like all of us, Anthony is capable of harshness and tenderness, of charm and cruelty. Those experiencing dementia often have diminished control over their emotions and behaviours and this can be exacerbated by stress.

A small weakness of the film is that we gain no real sense of Anthony’s earlier life. Anthony’s temper may indeed be an enduring part of his personality, though it’s more likely a consequence of his serious disease. This is an important point for carers to understand. When his son-in-law challenges him to stop ‘getting on everyone’s tits’ we have some sympathy for Anthony, who we begin to realise is behaving fearfully rather than deliberately.

Eventually Anthony is reduced to sobs: ‘Lost all my leaves. Branches. Wind. Rain’. As he moves from the moderate to advanced stage of dementia , the need for tender and humane care is clear.

Still inside

A key theme with many films exploring dementia, is the end — not just the end of the story, but the end of life.

In The Father we are drawn into Anthony’s agonising reality, the quiet chaos of tomorrow. In Supernova, we understand that Tusker chooses to write the end of his own story. Individuals living with dementia may be altered by the disease process, but it’s important to remember that who they are as a person endures.

The nihilistic vision of these films, while powerful and thought-provoking, is not the only possible construction of dementia. Though we must come to terms with the fact that dementia is a terminal disease, the end point does not negate the imperative to respond to the needs of the person; indeed, it highlights the need for empathy.

Complete Article HERE!

‘Jump, Darling’

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.

Complete Article HERE!

“He Thought The Idea Was Hilarious”

— Director Kirsten Johnson On “Killing” Her Father Repeatedly In ‘Dick Johnson Is Dead’

Kirsten Johnson directs a scene with her dad for the new documentary, “Dick Johnson Is Dead.”

By Matthew Carey

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.’”

Complete Article HERE!

Living With Ghosts

By Mary O’Connor

“What’s your name?”
“Mary.”
“Mary what?
“O’Connor.”
“From where?”
“From here.”
“No, you’re not.”
“I’m your daughter.”
“No, you’re not. What’s your name? . . .”
“We should get him a tape recorder.”
“He’s human. He needs a human voice.”
“But his is almost gone.”
“That doesn’t matter.”

Staring into the face of an undead ghost in a green tweed jacket and flat-cap over toast and cornflakes is unnerving at the best of times; and traumatic at the worst. Especially when that ghost is your father. And the cornflakes have gone soggy.

But unlike gothic novels or films where ghosts happily offer themselves up as symbols of repressed memories, traces of crimes against innocents, and (usually) murderous pasts, this ghost has never crossed over into the realm of the metaphorical. Inconveniently, it decides to remain very, very human. Actually, that depends on your definition of human.

Even more inconvenient is the fact that this ghost refuses to follow the script and disintegrate with the morning light. Instead, it prefers to haunt the modern comforts of an electric armchair; swapping dreary castles for daytime television and crumbling dungeons for motorised beds.

And that’s just the start of my day living with a living ghost. Or Alzheimer’s as it’s otherwise known. Or, more correctly, my father’s Alzheimer’s.

Living with Alzheimer’s, both as a carer and sufferer, is a growing phenomenon in the UK. Often confused with dementia, Alzheimer’s refers to a physical disease which affects the brain while dementia is simply a term for a number of symptoms associated with the progressive decline of brain function. These symptoms can include memory loss, difficulty with thinking and problem solving, and challenges with language and perception. There are over 400 types of dementia—with Alzheimer’s and vascular dementia as the most common forms. According to the Alzheimer’s Society of the UK, dementia is now the leading cause of death in the UK with someone developing it every three minutes. Alzheimer’s is classified as a “life-limiting” illness according to the NHS, but sufferers can live for many years after the initial diagnosis, depending on the progression of the disease. Divided into three stages, early, middle, and late, the symptoms of Alzheimer’s gradually become more severe as the disease progresses and more parts of the brain are affected.

In the early stages, having Alzheimer’s as a companion wasn’t too unpleasant; the emptiness hadn’t fully taken over and I had more human than spectre to talk to. I could still pretend to have a normal(ish) life with only the minor inconvenience of a (mostly) present parent, despite the occasional wandering through doors unexpectedly and lunatic outbursts. The human part kept his smiling eyes, watching the world orbit around the sweat-stained tea-pot and apple tart. But the Alzheimer’s relentless erasure of my father left a morbid spectre sitting in his chair at the kitchen table.

In the middle stages, my father’s personality and identity dropped away like discarded clothes. His manner of speech was the first to surrender to the disease. Forgetting words rapidly metamorphosised into hours of repetitive questioning, as if seeking to ground himself in concrete knowledge of the now while his fingers grabbed vainly at a slipping sense of reality. The final stages of the disease witnessed his childish cries for help without knowing what or who he wanted.

“Gone childish” is an archaic term that was once used to describe dementia and Alzheimer’s sufferers before these diseases were better understood. Capturing the vulnerability these diseases inflict on their sufferers, the phrase sums up the centrality of memory to the human experience. If our identities are formed by our experiences, and these experiences are stored in our memories, shaping who we are and how we make decisions, what can we do when we have no memory? Without a roadmap of precedence, how can you plan for the future or know yourself without knowing how you got to where you are now? Like children, Alzheimer’s sufferers lose a sense of the past and futurity. They become transfixed in the present like ghosts trapped in limbo.

The last stages of my father’s disease cemented his role in the family home as the new phantasm. Like a well-behaved, conventional ghost he punctuated our nights with night-walking, ghoulish shrieks, hallucinations, and knocking on doors at all hours while the day-time witnessed empty eyes peering out from behind the safety of a purple blanket. Innocent of blame, our ghost blocked our escape from the house. For fear of hurting himself, we couldn’t leave him alone but grew resentful for being held hostage by a madman with no memory or awareness of his own actions.

After being stripped of memory and identity, my father’s Alzheimer’s left a shell of body; a ghastly reminder of the person that had once inhabited it. Bereft of the markers of humanity, this animated mannequin asked, “What makes up a human? Is it the mind? Or the body? And what happens when you take one from the other?”

Researchers have identified the cause of Alzheimer’s as the build-up of abnormal structures in the brain called ‘plaques’ or ‘tangles’. These structures cause damage to brain cells and can block neuro-transmitters, preventing cells from communicating with each other. Over time, parts of the brain begin to shrink with the memory areas most commonly affected first. Why these build-ups occur or what triggers them is not yet understood, but researchers now know that it begins many years before symptoms appear.

Ancient Roman and Greek philosophers associated the symptoms dementia with the ageing process. However, it was not until 1901 when the German psychiatrist, Alois Alzheimer, identified the first case of the disease. Medical researchers during the twentieth century began to realise that the symptoms of dementia and Alzheimer’s were not a normal part of ageing and quickly adopted the name of Alzheimer’s disease to describe the pattern of symptoms relating to this type of neurological degeneration.

No physical markers like the puckered lines of surgery scars or the uneven hobble of a game leg signposted my father’s declining health. But the slow creep of this living death brought on grief long before his body was expected to fail. Without the essence of the person, all of their quirks and curiosities, which once animated a familiar body, how do you grieve for someone’s loss before they have died? And how do you cope with the guilt?

This type of grief is usually referred to as anticipatory grief. It is a type of grief that is experienced prior to death or a significant loss. Typically, it occurs when a loved one is diagnosed with a terminal or life-threatening illness, but it can also happen in the face of a personal diagnosis. However, it can often trigger feelings of guilt because people feel ashamed for grieving their loved one’s death before they are dead.

With my father’s memory gone, my connection with him was broken. During the later stages of the disease he forgot my name and my existence. Fading from my life, his body remained as a perverse mockery of the person that had once inhabited it. Now all that haunts me are the memories of peering over barley stalks before the autumn harvests at a grizzled old farmer in a flat cap and tweed jacket, a hand reaching out to help guide the walk home.

Complete Article HERE!

How do relationships change through the Alzheimer’s disease journey?

Changes do occur in many aspects of relationships between the affected person and his or her caregiver during the course of the disease. These changes, however, do not diminish a person’s need for love and affection.

The loss of companionship is perhaps the initial beginning of relationship changes. The caregiver, now assuming a caregiver role, misses the opportunities for intellectual conversation and misses that person who was a “sounding board” for any problems that arose or decisions that had to be made.

The person affected may have always taken care of the family’s finances, but as the disease progresses, the caregiver must learn to make all the decisions of financial and legal matters, which can be challenging and difficult for someone already overwhelmed. Some caregivers get help from a financial adviser to assist in these meticulous tasks and decisions.

Alzheimer’s disease affects the sexual relationship between partners, too. The affected person may exhibit hypersexuality, putting demands on the caregiver and, at times, be overly affectionate at the wrong time or place. On the other hand, interest in sex may wane or decrease, and the caregiver soon misses that loss of intimacy. Yet, there can be intimacy without sexual relations. Cuddling, dancing, enjoying moments together holding hands, gentle massages are all ways of experiencing intimacy and ways to satisfy the needs of both the affected person and the caregiver.

The caregiver should try to be honest with his or her feelings regarding these relationship changes and to find ways to express them, whether it be through talking with close friends or by joining a support group.

Relationships with family and friends sometimes change drastically. Often family and friends are intimidated or are uneasy around someone with Alzheimer’s. They don’t know how to communicate with them and may feel threatened by his or her behaviors.

The caregiver can become just as isolated as his or her loved one. The caregiver should contact family and friends and share the loved one’s condition, with tips on communicating and ways they can visit in a nonthreatening manner.

The caregiver should encourage visits with family and friends for the sake of their loved one and themselves.

Complete Article HERE!

Her father developed dementia.

She made a documentary — a surreal, hilarious one — about the end of his life

Kirsten Johnson directs a scene with her dad for the new documentary, “Dick Johnson Is Dead.”

By Andrew Joseph

When the documentary filmmaker Kirsten Johnson learned her dad had dementia, she decided to kill him herself. Over and over again.

The result is the new film “Dick Johnson Is Dead,” which is available on Netflix starting Friday. In it, Johnson combines staged enactments of her father dying in accidental ways (tumbling down the stairs or getting hit by a falling air conditioner) with scenes from their life navigating his memory loss, cognitive decline, and impending death.

The film is both incredibly moving and funny, an exploration of the coming grief and an act of preserving what it is that Johnson is so sad to be losing. The “deaths” are played for laughs — moments from which Dick Johnson is resurrected in defiance of the finality of death, but against the backdrop of a very real, irreversible progression toward that ultimate fate.

The film debuted earlier this year (before the pandemic fully arrived in the United States) at the Sundance Film Festival, where it received a special award for innovation in nonfiction storytelling.

Johnson this week spoke to STAT from New York about making the film. Below are excerpts from the conversation, lightly edited for clarity.

Before your dad developed dementia, your mom died from Alzheimer’s. Did your experience with your mom inform you making this film, or even make it possible for you to make it?

Completely, and in many ways. I was really just devastated by her Alzheimer’s. I kept not seeing it coming, the way in which Alzheimer’s gets worse and worse. I would think this is as bad as it can get, and it’d be like, oh no, it became worse. So I really went through that as a period of grieving, and then more grieving, and then more grieving.

My previous film, “Cameraperson,” is an inquiry into memory and going back into all this footage that I shot over 25 years of being a cameraperson. I became very interested in memory and how memory functions because of her Alzheimer’s, and then I became very interested in time and how time functions. And then I was relating that to cinema.

When you’re looking at a movie, you’re not looking at a memory. You’re experiencing something, and you’re often looking at a dead person, like you’re watching Buster Keaton. But Buster Keaton was dead before I ever watched one of his movies and yet his movies are totally alive. So what is that? And that’s how I set upon the idea of making this movie with my dad, as a way of being defiant toward dementia, being defiant toward death. Like I’m going to laugh this time, I’m not going to just do the veil of tears that I did last time.

You say in the film that at first, because of what your mom went through, that when you first started hearing about your dad’s memory and cognitive issues, you thought, “this isn’t happening again, no way,” which I think is what a lot of people feel initially. How did you go from that point of denial to accepting this to the point you could make a humorous film about it?

Sometimes compartmentalization serves people. It helps us function. Sometimes, though, denial and avoidance and silence just let festering things fester more.

I’m really interested in how humans cope with exposure at scale to very difficult things. My father was a psychiatrist. He spent 50 years treating people with a variety of mental illnesses, and he’s someone always looking for a joke. And I think that was one of the ways in which he coped with how much trauma he encountered. So I was trying to learn from his methodology, learn from my career, of how does this craft — whatever craft it is that we have, whether it’s our medical skills or our filmmaking skills — how do we work with our craft to transform pain and difficulty into curiosity, hope, laughter? Because I needed that.

At one point in the film, as part one of preparing for one these fantasy death sequences, your dad is in a casket, and you say seeing him breathing in there makes it less hard. The enactments of his death are generally slapstick and funny, but still, was taking on your dad’s death as your job difficult, even if it was in defiance? 

It definitely had plenty of difficult moments, and yet because my dad has dementia, I was not going to avoid the difficult moments. They’re already in the house, so like, OK, how do we engage with them? Seeing people who work in these stressed positions, who are caregivers of many forms, the people who are doing it with lightness, who are doing it with humor and acceptance of the absurdity or the obscenity of it, that often helps.

The other thing I’m really interested in is images, and how images imprint on our brains — the idea of the indelible image. As I worked over the years, I realized that what is often the unforgettable image is the impossible image. So if you think about the things that have like, “Whoa, I saw this and I can never unsee it,” it’s often seeing something like a body in a position it’s not supposed to be in, or a body in a position that is unfamiliar to you. And accidents and death and disease, they all do strange things to the body. It’s this idea of being haunted by an image. We really file certain things away as, “OK, this is exceptional.” So I deliberately wanted to play with that, and see what would happen if I created an image of my father, like the indelible image of my father lying at the bottom of the stairs, but then he can get back up and we can laugh about it.

In another moment in the film, you ask a woman whose husband had been a pathologist if that changed her relationship with death, just being in the vicinity of it. And so for you, how did making a film about the end of life and death change your relationship with death?

I’m increasingly interested in things I wasn’t interested in before. And I certainly think there’s a great probability that I will have dementia. And there’s a part of me that’s like, “Huh, I kind of can’t wait to see what it’s going to feel like.” I know so much about it from super close proximity, but I don’t know it from the inside. But I’m also like, “Please let me die another way.”

But the film is healing. It has given me a way to do this differently than I did with my mom.

The film was made before the pandemic, but with that, there’s just been so much death in the past nine months, and I wonder if making the film has shaped your thinking about the pandemic and how many people have died.

Like each of us in our own ways, I’m really struggling with how to wrap my brain around this. You know, a million deaths? I talk about the scale of things that people encounter during a lifetime when they’re a professional who really looks at death. Like, I did 225 Holocaust interviews, but I didn’t do 6 million Holocaust interviews, right? And there is a way in which the individual brain may not have the capacity to allow in global-scale pain, and yet that is what is being asked of us. It’s also being asked of us in terms of climate change.

I’m definitely overwhelmed. I’m also deeply interested in the fact that we are now sharing anticipatory grief. I feel like dementia introduced me to that concept. You know worse is coming so what do you do with that? And you know finality may be coming. What do you do with that? This concept of, we’re in the long middle of the pandemic right now, we don’t know when it ends — that’s a very uncomfortable place for humans.

You tell someone in the movie that we all carry parts of our parents in us. And then you ask what he carries of his parents. So I’ll just end by asking, what do you carry of your parents?

From my mother, I know that she keeps showing up. She keeps being here. She doesn’t go away, and I’m comforted by her presence. She had a great love of color and I’m sitting here looking at what I’m surrounded by, and there’s an explosion of color all around me. And I think, that’s my mom.

From my father, I have this wish to listen more and I have this desire to laugh more.

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