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!

‘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!

On life, death and dying

Theresa Hamilton plays tic tac toe on a window with a senior in Mt. Cartier Court as the pandemic limited in-person visitors into senior care homes.

By

Theresa Hamilton wants to help people die better.

“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.

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!

Should diabetes treatment lessen for older adults approaching the end of life?

by American Geriatrics Society

One in four people aged 65 or older has diabetes. The disease is the seventh leading cause of death in the United States and a major contributor to heart disease. Experts have recommended that the best way to slow the progression of diabetes—and help prevent its many complications—is to maintain strict control of blood sugar levels. For healthy younger people, this means keeping the target blood sugar level (known as A1c or HbA1c) lower than 6.5 percent to 7.0 percent.

For older adults who have a limited life expectancy or who have advanced dementia, however, maintaining that target blood sugar level may cause more harm than good. For example, these older adults may not live long enough to experience potential benefits. What’s more, maintaining these strict blood sugar levels can raise the risk of potentially harmful events such as (also known as hypoglycemia). This can cause falls or loss of consciousness.

For these reasons, many guidelines now suggest targeting higher HbA1c targets—such as between 8.0 percent and 9.0 percent—for older adults who have multiple chronic conditions or limited life expectancy, or who live in nursing homes.

There is not much existing research to guide health care practitioners as to what the appropriate levels of diabetes medications are for this group of older adults. There is also little information about the effects for these individuals of taking fewer or lower dose of diabetes medications.

Experts suspect that lessening diabetes treatment in these older adults has the potential to prevent unnecessary hospitalizations due to lowering the risk for harmful drug events and increasing the patients’ comfort.

In order to investigate the issue, a team of researchers conducted a study—one of the first national studies to examine potential overtreatment and deintensification of diabetes management in nursing with limited life expectancy or dementia. The researchers chose nursing home residents to study because admission to a nursing home could give healthcare practitioners a chance to learn more about patient goals and preferences and to review and adjust medications accordingly. The researchers published their results in the Journal of the American Geriatrics Society.

The researchers examined information from Veterans Affairs nursing homes from 2009 to 2015. Their goal was to learn more about older adults with diabetes, particularly those nearing the end of their life or who have dementia. The researchers investigated whether these older adults were overtreated for diabetes, whether they had their diabetes medication regimens lessened, and what effects might result from lowered doses, types and/or different kinds of medication.

The researchers wanted to learn specifically how often diabetes treatments were lessened. Among the nursing home residents identified as potentially overtreated, the researchers examined how much their diabetes treatment regimens were lessened during the 90 days of follow-up.

The researchers did not consider insulin dose changes, because insulin doses may be influenced by factors such as eating habits.

The researchers said they observed potential overtreatment of diabetes in almost 44 percent of nursing home admissions for veterans with diabetes and veterans who had limited life expectancy or dementia. Potentially overtreated residents were about 78 years old and were nearly all male and non-Hispanic white. Two-thirds of the residents had been admitted to nursing homes from hospitals. A total of 29 percent had advanced dementia, almost 14 percent were classified with end-of-life status, and 79 percent had a moderately high risk of dying within six months. Many were physically dependent and had and/or potential diabetes-related complications. In addition, about 9 percent of overtreated residents had a serious low blood sugar episode in the year prior, emphasizing the need for deintensification.

Nearly half of residents received two or more diabetes medications, and those with higher HbA1c values of between 6.5 percent to 7.5 percent received more diabetes medications than those with lower HbA1c.

The researchers concluded that many veteran nursing home residents with limited life expectancy or dementia may be overtreated for their diabetes at the time of admission. The researchers suggested that future studies examine the impact of deintensification on health outcomes and adverse events to better understand the risks and benefits of management strategies in this group of .

“I’m letting her down by seeing her suffer:”

managing a cancer home death during the pandemic

What is it like to care for someone you love who is dying from advanced cancer at home during lockdown?  Kate Binnie discusses it can heighten isolation and moral distress for the family caregiver

One evening in early May during lockdown, Alan calls me almost raving with exhaustion. He’s caring for his mum, my friend Mary, who is in the final stages of stomach cancer and who has chosen to die at home. It seems to him that this last part—where she has stopped eating or drinking and is in bed hooked up to a syringe driver for pain relief and sedative medication—is going on forever. Tonight she seems irritated and upset although she is not coherent, and Alan cannot soothe her. There is a live-in carer who is helping with the heavy lifting, changing of sheets and so forth, but otherwise Alan is completely alone apart from short daily visits from the community nurses. We talk for a while and I suggest he a) tells the palliative care team what is going on and b) writes down how he feels. An hour or so later an email arrives:

In lockdown with having more than too much time on my hands, I question how in 2020 this cruelty is continuing without any other choice than to endure it or look away.

The nurses keep saying that the drugs are “keeping Mum comfortable” but I can’t see there is any way to describe what I witness to display any kind of comforta slow death is not comfortable for anyone no matter how you sugar-coat it.

Alan is right. There is no evidence to prove that sedation improves quality of life for the patient with terminal delirium/agitation and of course we have no first-hand accounts from dying patients to draw on. [1] What he describes is the shock and moral dilemma of a totally untrained and unprepared member of the public, caring for a loved one in the last phase of life and finding it hard to communicate effectively with the professionals charged with his mother’s care. All this is made worse due to physical isolation during the covid-19 pandemic.

I feel like I’m failing my Mum, but actually it’s the law that is failing us both. I have had to administer oral morphine as the carer is not allowed because it is a controlled substance. My mind has turned to helping her end it, but I know she would not want me to ruin my life by doing something that would put me in prison. The desperation to see my mum in peace is a hugely strong emotion.  It made me wonder how stressed I, or someone in a similar position, has to get before the wish to end the suffering becomes stronger than self- preservation.

I have also considered taking some of the anti-anxiety medication that has been provided for her just so I can sleep. If I found it all too much, I could drink the three bottles of morphine and I assume that would do the trick.  Being someone that has struggled with life in the past and has turned to drink and drugs as a coping mechanism I’m amazed that I am the person that has to administer and has access to all these drugs.

Alan’s complex feelings about being in charge of controlled medications do not appear to be singular.  A recent review of family caregiver experiences of managing medications for patients dying at home revealed a lack of training and support for family caregiver who worry about over or under-medicating their loved one. [2] Patient and family attitudes to anticipatory medications and issues around misuse in home deaths are under-explored in the literature. As Alan discovered—and the Wilson review corroborates—health professionals lack confidence in discussing the ethical implications of family care givers becoming medication gatekeepers at a time of extreme stress and anticipatory grief. [3] A stress that is magnified during lockdown where normal structures of support are unavailable leaving Alan feel traumatised, angry and abandoned.

How on earth is it kind to put a family pet out of its misery but somehow say it’s ok to drag dying out like this in a human? Do you ever stop being a child when it comes to watching your parent deteriorate and have no real belief that they are not suffering? Surely this is traumatic for anyone?

With the lockdown as it is, I cannot share this with people properly and have to make do with video and phone. I’m glad I’ve managed to hold on to rational thought and have not acted illegally due to immense pressure added to the temptation of having the means left right under my nose.

How many people will maintain that rationality in this lockdown, and whose fault would it be if they buckled under the strain? At the very least collective responsibility but most likely the individual would carry the blame, and all the people that can’t face up to the truth about this problem with the law will continue to live in the world they describe to themselves as ‘kind and comfortable’ without acknowledging that other people feel their loved ones are being effectively tortured and the onlookers traumatised. It would never have been mum’s choice to die this way.

In spite of current urgency in the media and within health and social care cultures during the pandemic to talk about death, dying and grief, there’s another level of this conversation about dying that we are still not having. Yes, advance directives are important so that treatment plans, place of care, and death can be discussed, and informed choices made in good time. But what about the end bit? Is the messy reality of and fallout from a home death really considered?

Specialist palliative care professionals are trained to meet the physical, emotional, and ethical needs of patients and families, but they are not resourced to be available for all home deaths, all of the time. Getting adequate home support (especially during lockdown when resources are directed elsewhere and infection risk reduces human contact) requires hugely responsive joined-up thinking, enough manpower and resources, competent relatives and excellent communication.  It only takes a few mis-timed, mis-judged, and overly stressed conversations for this fragile system to break down. And still—the body takes its sweet time. There is nothing more lonely than waiting for someone you love to die. Even experienced doctors in this position are pushed to re-appraise what amount of suffering is acceptable at the end of life. [4]

A survey from 2019 by Dignity in Dying revealed that 73% of people with a life-limiting illness with six months or less to live would choose to change the law so that they could choose an assisted death. And yet in practice conversations about this are often taboo. My mother—who died nine months ago at home from heart failure—kept asking about the possibility of assisted dying in spite of her strong spirituality and huge optimism. This was not depression or despair, but a fine mind and a loving heart wanting to maintain her dignity and protect her child (me) although I reassured her constantly that we would cope and that it would be OK. I was there when she asked the specialist about it and there was a sense of real discomfort in the room, as if she’d made a bad smell at a polite dinner party. It took the two of us, supported by a fantastic GP and heart failure nurse, working calmly and consistently with everyone involved with Mum’s care to have open conversations about dying, until we had clarity about no more hospital admissions, no more oral drugs, or other treatment.

I have over 10 years’ professional experience of being with dying so knew what to expect when Mum’s time came. For example, I understood that there was a complex and delicate relationship between the patient (Mum) the family care giver (me) and the healthcare professionals, and that the maintenance of this relational triangle was key. [5] In terms of actual dying, I recognised that the introduction of sedatives would reduce mum’s ability to communicate, and towards the end I knew what the frightening changes in Mum’s breathing meant and also that this might go on for some time until her last breath. But for most family members, watching someone die at home with all of the responsibility that this entails, is an un-familiar and un-held experience, broken only by the precious 30 minutes a day when the community nurse visits to introduce some calm, practical sense into what feels like a Kafka-esque alternate reality. [6] And remember, this was pre-lockdown. I was not alone and had my family and friends around to help me rationalise, to provide physical comfort and time to eat and sleep.

I suggest that alongside the current policy-level drive for supporting home death underpinned by evidence that this is what many people would choose, there needs to be a rapid re-appraisal of what this means for family members who are not trained or supported to do the job of extreme caring (which includes the administering of controlled drugs), and for which they are totally unprepared. [7] Funding and provision must be made within primary care, informed by the principles and practices of palliative care, to properly educate and support families through the dying process and into bereavement so that what Alan describes in the desperate last 12 hours of his mother’s life does not end in long-term mental health consequences or worse, a suicide or prison sentence. On a more subtle, emotional level we need to understand that calling NHS111 at 2am when your mother is terminally agitated is a cry for help from someone experiencing the searing pain of a breaking attachment.

The next morning, I check my phone. Mum died at 3.45am.

I call Alan who is relieved and exhausted He is facing the organisation of his mum’s cremation, the sorting out of her stuff and his life onwards in a seemingly endless lockdown. There isn’t going to be a funeral.  I suggest he try to get some sleep, talk to his GP, think about bereavement counselling, but he is in no mood for any sort of healing conversations with the professionals. I want people to know about this Kate he insists. I can’t be the only one this is happening to, can it? No, it can’t be. Around 450 people die every day in the UK from cancer, and about 25% of all deaths occur at home. What is it like for those families at the moment with huge pressure on services and hands-on community support from friends and relatives an infection risk and therefore forbidden?

The covid-19 pandemic has shone a fresh light on the importance of talking about dying, loss and grief in strange times where relationships are cruelly truncated by sudden hospitalisations, induced comas and separation from loved ones and community rites of passage. But deaths like Mary’s from cancer are happening every day, all the time.

Alan’s story shows us that what is a difficult and lonely experience at the best of times is made so much more traumatic during lockdown. Alan hopes that sharing his experience will lead to a greater awareness of just how traumatic it can be to facilitate a home death (which sounds cosy yet can be anything but). He wants to tell us about what he feels is a cruel lie that dying is kind and comfortable, and he challenges us to examine the dissonance between the reality of his lived experience and the beautiful idea of the “good death”.

Complete Article HERE!

As her grandparents’ love was tested by dementia, a photographer focused on their bond

“When the nurses told Else that Poul could die soon, she stayed with him all the time at the nursing home, sleeping on a mattress next to his bed,” said Sofie Mathiassen, the recipient of this year’s Bob and Diane Fund grant.

By Olivier Laurent

Sofie Mathiassen’s grandparents — Poul and Else — always kept a journal, jotting down in a sentence or two — sometimes more — the small joys of each of their days together. Eight years ago, Poul was diagnosed with dementia and Parkinson’s disease, and, for the past four years, their granddaughter has been photographing their daily lives in Denmark, creating a record of Poul’s last moments on earth.

The work has won the Bob and Diane Fund grant, a cash prize dedicated to raising awareness through photography of the medical crisis around Alzheimer’s and dementia.

“I have always been very close with my grandparents and spent a lot of time with them throughout my childhood,” Mathiassen said. “So, when my grandfather began to get sicker I started photographing him. I wanted to keep him as I knew him, and I could see him fading away from me and from my grandmother and the rest of the family.”

Poul, 82, at the dinner table with his wife, Else.
Else, 83, at the dinner table with her husband, Poul.

Mathiassen’s photos show the bond between Poul and Else as one’s dementia becomes overwhelming and the other works to hold onto what’s slowly disappearing.

“Their story is just one example of what many families are going through,” Mathiassen said. “I hope that people see the love before they see the disease.”

“Photographing your family takes a certain risk and vulnerability,” said Getty Images photographer Chip Somodevilla, one of this year’s judges. “And Sofie has shared her world with us in an intimate and beautiful way. Denmark may have a sophisticated welfare system — but dementia still has the same impact.”

Mathiassen will receive $5,000 to publish her images in a photo book in 2020, said Gina Martin, the fund’s founder and executive director, said.

Poul and Else Mathiassen in their house in Skanderborg, Denmark.
Dinnertime at Poul’s nursing home.
A mural at Poul’s nursing home.
One week after Poul died, Else celebrated her 84th birthday. She lives alone in their house and plans to stay there.

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