9 Items That Make Home Caregiving Easier

These resources can reduce challenges in caring for loved ones

By Robin L. Flanigan

Caregiving is hard, but don’t let your home make it harder.

Bathrooms, dim lighting and even furniture pose risks when taking care of a loved one. But new tools and techniques can improve the safety of a home, making caregiving a bit easier. And it doesn’t need to be complicated in order to be helpful.

“Household items and a home environment, once innocuous, need to be reconsidered through a new lens,” says Monica Moreno, senior director of care and support at the Chicago-based Alzheimer’s Association, which offers a home safety checklist to help caregivers keep those living with dementia safe and independent as long as possible. AARP’s free Homefit Guide features smart ways to make a home comfortable and a great fit for people of all ages.

Here are nine tools designed to help caregivers ease the burden of daily challenges. 

1. Sit-to-stand toilet

Research shows that a quarter of falls take place in the bathroom, so assistive toilet seats with adjustable handlebars and seat heights — for safe and stable toilet transfers — are helpful when dealing with weakness and instability issues.

“It’s common for individuals to easily sit down to go to the bathroom, but then they can’t get off the toilet,” says registered nurse Eboni I. Green, cofounder and CEO of Caregiver Support Services, based in Omaha, Nebraska. “Or if they have the ability to get off, they might grab on to an unsecure towel rack and can easily fall.”

2. Adjustable beds

“These may be costly, but they’re a real investment in helping to adjust comfort levels with the push of a button,” says Green. These beds can help create an upright position for eating and are a good tool for preventing bedsores. They also allow for quicker repositioning, and safer and faster transfers in and out of bed. “These beds are revolutionary,” Green says.

3. Walk-in shower with handrails

Making it easy to shower will make it easier for caregivers to get someone with dementia or other challenges to bathe.

Walk-in showers don’t require high, risky steps and offer more room for a seat or bench and grab bars. Be sure to add anti-slip flooring, and faucets that regulate water flow and temperature to prevent scalding.

Costs vary dramatically depending on size and materials. Those being cared for can contribute to the modification process by choosing the tiling, door style and other features.

4. Motion-sensor lights

As aging adults cope with reduced eyesight and slower reactions, caregivers can help their loved ones find their way around — and reduce tripping hazards — by installing wireless motion-sensor lights that illuminate dim areas such as stairs and long hallways.

These lights come battery-operated, have built-in magnets and double-sided adhesives, and shut off after a short amount of inactive time, usually from 15 to 30 seconds.

5. In-home cameras

From fixed models to those that can swivel, tilt and zoom, indoor surveillance cameras help monitor areas that pose greater hazards for accidents, slips and falls. Cameras can also prevent a loved one from leaving a home or wandering off without a caregiver’s knowledge. Keep in mind that consent before installation may be required for this type of surveillance.

“A lot of us caregivers hear the mantra ‘take care of yourself’ but we may not know where to start,” says Eboni I. Green, cofounder and CEO of Caregiver Support Services, which offers an “Ask Emma” caregiver wellness tool.

Named after Green’s mother-in-law and created in part from Green’s dissertation on caregiver wellness, Ask Emma guides caregivers through statements designed to offer a status of sorts for psychological wellness, financial wellness, social well-being and spiritual well-being, among other categories.

The “strength-based” tool then points out where the caregiver is doing well before linking to resources to help with an area that could use improvement.

6. GPS trackers

No matter the distance, GPS trackers encourage loved ones to live an independent life while letting caregivers know exactly where they are. This technology allows for real-time tracking, the setup of safe zones and custom alerts to let caregivers know someone has wandered off. Other features often included are two-way communication and the ability to give others, like additional family members, access to the same information.

GPS devices can be worn as a necklace, watch or bracelet — there are even trackers that come in the form of a shoe insert. Keep in mind that GPS devices may have monthly fees associated with them.

7. Monitoring apps

There are a whole host of digital apps that can be used as monitors, reminders and providers of useful information. The Hero app, when used with a medication dispensing system, tracks refills, adherence and up-to-date information about each prescription. PainScale tracks pain, treatments, medication, activity, mood and sleep. Caring Village stores important documents, personalized to-do lists, daily or weekly schedules of care, and a wellness journal to keep others updated, among other features.

8. Customizable digital clocks

Look for clocks with big, easy-to-read displays or voice capabilities. Some clocks display the time, date and day of the week and allow caregivers to set reminders such as “It is now Saturday afternoon.” Caregivers can program alarms, events, birthdays and holidays. These clocks can mount to the wall or sit on a tabletop.

Models with personalized voice reminders — for medication, appointments and tasks — let the person being cared for hear the comforting voice of the caregiver.

9. Erasable whiteboards and calendars

Place these in commonly frequented areas of the house such as the kitchen and family room, suggests Moreno.

“Larger whiteboards and calendars tend to be easier to use and more legible for people with dementia,” she says.

Complete Article HERE!

Study highlights challenges providing end-of-life dementia care

by Sandy Cheu

Providing end-of-life dementia care is rewarding but full of challenges including having to help family members accept that their loved one is dying, a study of aged care managers has found.

The study, published in BMC Geriatrics, explored the experiences and perspectives of 20 residential or  care managers at 11 aged care homes in New South Wales and Victoria of dementia specialists HammondCare.

It found that continuous skill development of frontline staff, iterative family discussions, and partnership building between aged care staff and general practitioners are required for optimal end-of-life dementia care in aged care homes.

Senior researcher on the study Professor Josephine Clayton said the study found that aged care managers found delivering end-of-life dementia care relentless but rewarding.

“Staff are really passionate and committed about providing good end-of-life care for the residents but they did however experience a number of challenges in delivering that,” Professor Clayton told Australian Ageing Agenda.

Other themes identified in the research include the need to lay the groundwork to establish what families understand about dementia, play peacemaker in the face of unrealistic family demands and expectations such as for medical intervention and chip away at denial and cultivate a path towards acceptance of death.

“Families and even some staff didn’t necessarily think of about dementia as a life limiting or terminal condition, so there was a need for a constant education around that, which can be confronting for families,” said Professor Clayton director of HammondCare’s Centre for Learning and Research in Palliative Care.

“And because the residents at our facilities usually have lost the capacity to make decisions for themselves, it’s very much around the staff communicating regularly with the family members about what the person would have wanted,” Professor Clayton said.

The need to support and strengthen staff and befriend GPs comfortable with providing palliative care were the other themes identified in the study.

“Sometimes it might be junior staff who might not have experienced this death in their own life and it can be confronting for them to have to deal with death and dying. And so there was a need for constant education and support for the frontline staff,” she said.

“Some GPs were very uncomfortable with prescribing medications that might be needed to ensure a person can be in comfort at the end of life, or they might have an attitude of ‘oh something changed, go to hospital’, which was not what the family or the person would have wanted,” Professor Clayton said.

While addressing the barriers is “not just a simple fix,” it is positive that the aged care royal commission has highlighted some of these challenges, Professor Clayton said.

“There needs to be an investment in funds and education to support our frontline staff and to enable them to have those regular communications to support families,” she said.

Aged care staff and GPs also need to be rewarded and paid appropriately to attract the right people into the sector, Professor Clayton said.

“There’s a number of wonderful, dedicated GPs out there who do visit nursing homes, but for some of them is just not practical for their business to be able to come to nursing homes because it’s a lot of travel back and forth for that visit and they may not be appropriately remunerated, she said.

Access “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia.

Complete Article HERE!

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.

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