Despite advance directive, Oregon dementia patient denied last wish, says spouse

Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.

Bill Harris walks with his wife, Nora, at the Fern Gardens memory care center in Medford, Oregon. Nora Harris, 64, has late-stage Alzheimer’s disease. A former librarian and world traveler, she had signed an advance directive stipulating no care to prolong her life. Controversy has arisen over her husband’s claim that state law is forcing her to be spoon-fed against her stated wishes.

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[B]ill Harris is blunt: For more than a year, he has been trying to help his wife die.

The 75-year-old retired tech worker says it’s his duty to Nora Harris, his spouse of nearly four decades, who was diagnosed with early-onset Alzheimer’s disease in 2009.

“Let me be honest: Yes. It’s what she wanted,” he said. “I want her to pass. I want her to end her suffering.”

Nora Harris, 64, a former librarian, signed an advance directive after her diagnosis to prevent her life from being prolonged when her disease got worse. Now, her husband said, she’s being kept alive with assisted eating and drinking against her stated wishes.

The onetime Virginia Woolf scholar and world traveler can no longer communicate, recognize family members or feed herself. She’s being spoon-fed at Fern Gardens, an assisted-living center in southern Oregon, after a local judge ruled against Bill Harris last summer, concluding that state law mandates that she continue to receive help.

“She did not want to be in a position where somebody had to totally take care of her,” Bill Harris said. “When nature, through the disease, basically said, ‘I can’t feed myself,’ Nora’s position was, that’s it. Let nature take its course.”

In recent weeks, Nora Harris has been gaining weight, climbing from less than 100 pounds to 102 or 103 — just enough to keep her stable. Bill Harris learned that, in addition to three state-required daily meals, staffers have been feeding Nora optional snacks, too.

Now he’s considering going back to court to try to stop the snacks in an effort to let Nora Harris lose enough weight to end her life. Twice before, in 2015 and 2016, she fell to 90 pounds and was enrolled in hospice, with six months or less to live, only to rebound, he said, when staffers coaxed her to eat.

“You’re denying Nora the right to die on her terms,” Bill Harris said. “It’s not a right-to-life issue, it’s a right-to-die issue.”

The southern Oregon case underscores the complexity surrounding the use of advance directives for people with Alzheimer’s disease and other dementias.

Bill and Nora Harris met at the San Francisco War Memorial Opera House in the early 1970s and launched a four-decade marriage that included world travel. Nora Harris was a librarian and a Virginia Woolf scholar who told family and friends she never wanted to be utterly dependent on others for care.

Advance directives are legal documents that spell out a person’s end-of-life wishes if they are unable to make their own decisions.

These directives generally allow named agents the power to withdraw artificial hydration and nutrition in the form of feeding tubes, for instance. But when that same nourishment is offered by hand, several states, including Oregon, draw a line, said Thaddeus Mason Pope, director of the Health Law Institute at Hamline University in St. Paul, Minnesota, and an expert on end-of-life law.

Across the U.S., the more than 5 million people living with dementia are typically encouraged to put their end-of-life wishes into writing early and to pick a trusted person to carry them out, said Beth Kallmyer, vice president of constituent services for the Alzheimer’s Association.

That’s no guarantee, however, that those requests can — or will — be honored. In Nora Harris’ court case, her advance directive and testimony from her husband, her daughter and two close friends all indicated that she wouldn’t want anything to prolong her life.

“That court decision basically condemned Nora to the full extent of the Alzheimer’s disease,” Bill Harris said. “They gave her no exit out of this situation.”

But Eric Foster, the court-appointed lawyer who represented Nora Harris, argued that her directive doesn’t specifically mention food and drink presented by hand. Because she now opens her mouth and swallows when food is offered, she has, in essence, changed her mind, he said in a court document.

Bill Harris said that opening her mouth is a reflex, an automatic response to six decades of habit.

Kallmyer, with the Alzheimer’s Association, said it’s hard to tell whether someone with dementia is acting out of reflex or desire. The association recommends against tube-feeding for patients with dementia, while also advising what they call “careful hand-feeding.”

“If they’re eating and they’re opening their mouth, it’s difficult to say they didn’t want it,” she said.

Foster’s stance was backed by a judge who sympathized with Bill Harris’ plight, but sided with Fred Steele, Oregon’s ombudsman on long-term care. Steele said Nora Harris’ advance directive wasn’t specific enough to advise Fern Gardens staff to withhold food and water.

“Our concern was just focused on the administrative rule,” he said. “If the rule exists to prevent a facility from committing elder abuse, our focus was on what the rule required. The rule requires the resident be cued with food and they have the choice of eating or not eating.”

Lynn Rawlins, the center’s administrator, said her hands are tied.

“We have to feed them until they stop opening their mouths,” she said before a tour of the center last month. “Unless feeding them causes more harm from aspirational pneumonia or a choking factor. We still have to feed them, even if they choke.”

Nora Harris is a small woman with graying brown hair and dark, confused eyes. On a recent 88-degree summer afternoon, she wore a maroon fleece sweater, gray sweatpants and mismatched socks.

She spoke in urgent whispers, syllables spilling out, unlinked from words.

Bill Harris put an arm around her shoulders reassuringly.

“Absolutely,” he said. “Of course.”

But he added later: “It’s difficult visiting her, especially when you know what Nora was like before.”

That’s the thorny issue at the heart of advance directives for people who lose the capacity to make their own decisions, said Pope.

If Nora Harris were aware enough to refuse food, instead of passively accepting it, there would be no question.

“Do we listen to the previous Nora or to the current Nora?” Pope said. “That is, unfortunately, not legally or ethically answered well.”

A bill introduced in the Oregon Legislature last year would have allowed an appointed committee to amend the state’s advance-directive form. Critics, including Oregon Right to Life, an advocacy group, opposed the effort, arguing that it paved the way for mistreatment of vulnerable people, including dementia patients like Nora Harris.

“OR legislators move to allow starving, dehydrating the mentally ill,” one headline read. The bill passed the state Senate, but failed to advance.

Nora Harris’ situation also raises issues surrounding a controversial method of hastening death for seriously ill people known as “voluntarily stopping eating and drinking,” or VSED. It causes death through dehydration, usually in seven to 14 days.

VSED is being used by a small but growing number of determined patients with the help of their families, Pope said.

In Washington state, board members at End of Life Washington, a nonprofit that supports medical aid-in-dying, created an advance directive focused on people with dementia. Soon the group plans to release a new form for people who want to leave instructions for stopping eating and drinking at the end of life.

Medical experts say VSED can be a relatively painless, peaceful death. In the absence of nutrition and hydration, the body produces opiate-like substances that blunt hunger and thirst. With additional painkillers, comfort can be ensured, they add.

An analysis of VSED research concluded that “terminally ill patients dying of dehydration or starvation do not suffer if adequate palliative care is provided.” A 2003 survey of nurses in Oregon who helped more than 100 patients with VSED deaths said they were “good” deaths, with a median score of eight on a nine-point scale.

Unlike aid-in-dying laws or rulings now in place in six states, VSED doesn’t require a government mandate or doctor’s authorization.

But the question of whether people with dementia can authorize a VSED death in advance, to be enacted later, when they’ve lost the capacity to choose, remains legally uncertain, Pope said.

“We don’t have statutes, we don’t have regulations, we don’t have a court case,” Pope said. “We have this thing where you’re allowed to refuse medical care. But this is basic care. Are you allowed to refuse basic care?”

For now, the answer in the case of Nora Harris is no.

That’s frustrating for Bill Harris, who says the emotional — and financial — toll of her illness has been enormous.

“The person you know, the person you married, who you love, is basically going away, fading away before your eyes,” he said.

He had planned to retire from his job at Wells Fargo Bank at age 67 but worked an extra eight years to pay for the costs of Nora’s care, which total more than $80,000 out-of-pocket each year. Because she fell ill at age 56, she didn’t qualify for Medicare or other government help.

Worse, though, is seeing his once “extremely bright” wife wandering the halls of the assisted-living center, “like a zombie,” he said.

“Nora was quite enamored of Virginia Woolf,” Bill Harris said, referencing the British author who drowned herself after years of mental illness.

“If she had known this would happen, she would have put rocks in her pockets and jumped in the river. This is absolutely where she never wanted to be.”

Complete Article HERE!

Is it Possible to Die of a Broken Heart?

After 55 years of being by his side every day, being apart was more than she could handle when he became ill.

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[S]omehow she knew it would be the last time she saw him. They had lived together in their house for 37 years until it became necessary to move to an Assisted Living Facility. Not their choice at all, but they could no longer maintain their home, their finances, their nutritional needs and more.

They met in their mid-twenties on a blind date at the beach. They sat on a blanket smoking cigarettes; she, shy and unsure of herself, was immediately intrigued and attracted to the young man a year and a half her junior. She must have had an open heart; he had just had all his teeth pulled. She didn’t care; she saw a kind and gentle soul. Two months later, he had a new set of teeth and a bride, marrying in his parent’s backyard.Within five years they had two children, a boy, and a girl, just like she wanted. She loved being a mom and a wife. They moved as a family across the country twice, settling in Central Florida and buying a home after many years of renting.

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My parents rarely fought. They bickered and disagreed, but I don’t remember any ugly scenes. I just remember love. Whenever they did get on each other’s nerves, it didn’t last long. Especially if  I put their favorite song, The Nearness of You, on the record player. It was impossible for them not to stop fussing and begin to laugh and hug and kiss each other when they heard it.

They loved each other’s company. It was rare they were apart if they weren’t working. They just loved to be together. A lot of husbands don’t enjoy going to the grocery store with their wives. Dad always did. Probably to keep her from spending too much, but regardless, they did it together. I have many memories of them walking through grocery stores and malls holding hands. My parents didn’t have any issues with public displays of affection.

I have fond memories of them bowling and square dancing together too. They got up together every morning, and went to bed together at the same time every night, after the evening news. When they both retired, they drove around the country, stopping to visit friends and family. Just the two of them. Inseparable.

As with many people, aging was not kind to my mom and dad. He went through a bout of Leukemia and shingles. She – a heart attack, congestive heart failure, kidney issues and breathing trouble. Her heart surgery went fine, but she contracted MRSA in the hospital and required more intensive surgery that she nearly didn’t survive.

But she pulled through. She was a fighter and she needed my father. And he needed her too. He sat by her side every day in ICU, then at the long-term hospitals and rehab facilities where she was moved for recovery.

Finally, she came home and they enjoyed a few quieter years together with me checking on them daily.

But there soon came a time when they needed more. Much more.

Dad was showing signs of Dementia. Medicine and meals were missed. Food was rotting in their fridge. Bills weren’t getting paid. Little by little, their well-being was eroding and I was struggling to help them maintain.

It took a crisis of their phones being shut off and nearly their electricity too, to really understand their situation, and while it was one of the toughest decisions I ever made, I moved them to an ALF and sold their home.

For a while, Dad did well. Even though he had early dementia, he still was able to drive and he became involved in activities. Mom was less happy, but she was safe, her medications were managed for her and I was finally able to sleep.

And for a couple years, life was status quo. Until it wasn’t.

Little by little, Dad’s mind began to slip and then continued to slip away. It started with him sleeping more than usual which I attributed to depression; sleeping is a great escape when you feel you are “having your life taken away from you.”

And the slide continued. His confusion increased as his cognitive mind decreased. One of the hardest days was having to take his car away. His self-care began to erode. There were days he didn’t get dressed or shave. He wasn’t eating very much. He slept much more of each day than he was awake.

Mom was frightened. She felt isolated and alone. I could tell she was grieving as she watched the man she loved so deeply slowly disappear. I felt the grief as well. The meds the neurologist prescribed we had hoped would slow down what was happening to his mind. didn’t seem to be slowing down anything at all.

Then the phone calls from the ALF staff began.

“We are having a problem with your father. He is wandering into other resident’s rooms.”

We all knew it wasn’t intentional. He just had no idea where his apartment was, after five years of living there. And with each passing day, it became obvious he needed more help with activities of daily living as he could no longer care for himself and Mom was unable to care for him.

This was where the heartbreak began. Dad had always provided for the family and Mom and always been, well, Mom, the nurturing rock as many mothers are. When she became sick, he took over, administering her medications including insulin four times a day. Now neither of them could help each other and he was becoming a shell of the man he used to be.

A painful decision was made to move him to the Alzheimer’s unit. My parents had never been separated before. Mom moved to a smaller apartment a short time after. She became increasingly depressed as his mind continued to drift.

I spent hours trying to reach him. Singing to him. I have read many studies that music is the last thread some Alzheimer’s patients hang onto and there were times he would nod and hum along.

Mom hated going to see him in the Alzheimer’s unit. It bothered her immensely. My stress increased as well trying to help both of them. She called me often, leaving voice mails if I wasn’t available, always asking about my dad. How was he? She was so worried about him. Her grief was palpable.

About six weeks after his move to the unit, Mom asked to go see him. Her color was not good. We entered the unit and found Dad sitting outside his room in his chair – the one I brought down so he would have something familiar. He seemed lost in his own world.

I paused as I heard the music on the sound system. The Nearness of  You was playing. What were the odds that their song was filling the room. Divine intervention perhaps?

“Dad,” I whispered in his ear. “Listen. Do you hear the music? It’s your song. And look, it’s your bride.”

He nodded slightly and looked at Mom. I began to sing in his ear the words and he continued to nod. I glanced at Mom; tears were running down her cheeks. Somehow I helped him stand up, and she did too and they gave each other a hug. I asked him if there was anything he wanted to say to her and he croaked out “I love you,” in a raspy voice, then sat down and closed his eyes.

Mom was shaking by now and asked me to take her back to the main area, out of the Alzheimer’s unit. It was just too painful for her.

The next day, the call from the ALF was not about him, but her. She was being rushed to the hospital: her broken heart had stopped beating.

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Complete Article HERE!

How dementia makes it harder to offer end-of-life comfort

Pauline Finster, who barely speaks anymore, is receiving hospice care at an assisted-living facility. Meanwhile, gangrene is spreading across her right foot.
Pauline Finster, who barely speaks anymore, is receiving hospice care at an assisted-living facility. Meanwhile, gangrene is spreading across her right foot.

By Rachel Bluth

Dementia took over Pauline Finster’s 91-year-old mind long ago, and she may die without having another real conversation with her daughter.

After Finster broke her hip in July 2015, Jackie Mantua noticed her mother’s speech ebbing until she said only “hi” or that she felt fine. Mantua last heard Finster speak six months ago.

Finster’s hip surgery led to a series of medical interventions that left her with poor circulation in her legs. Then gangrene set in. Mantua won’t look at her mother’s right foot, where the dead tissue is creeping from the toes to the heel.

She has instructed the staff at the AlfredHouse assisted-living facility in Rockville, Md., where her mother has been in hospice care since earlier this summer, to keep Finster on Tylenol to curb the gangrene’s discomfort.

Is that enough? It’s really all she can do at this point, Mantua said.

Finster began hospice care at the beginning of the summer. Pictures of her and her husband as a young woman are the last reminders in her room of her life before dementia.
Finster began hospice care at the beginning of the summer. Pictures of her and her husband as a young woman are the last reminders in her room of her life before dementia.

Hospice’s purpose is to ease a dying patient’s pain at the end of life and improve the quality of that life. But what’s to be done when a dementia patient in her waning days can’t communicate about her pain or help identify the cause? Or when that patient resists taking medications?

All those concerns can be troubling for relatives caring for loved ones with dementia and in hospice care, according to a recent study in the American Journal of Alzheimer’s Disease & Other Dementias.

Families often describe a cancer patient’s last months as stressful but meaningful. That isn’t the case with dementia patients because the disease changes the patient’s personality and causes behavior issues, according to George Demiris, one of the study’s authors and a professor of biobehavioral nursing and health systems at the University of Washington’s School of Nursing in Seattle.

Caregivers who took part in the study said they worried that their loved ones were in pain but were unable to properly express it — and that possibility disturbed them, according to interviews with families taking care of dementia patients in their last stage of life.

Multiple participants described feeling frustrated and defeated by patients’ cognitive difficulties and changing emotions, the study reported. Some described the patients as “prisoners” inside their bodies.

Helping a dementia patient in pain can be challenging for hospice workers, too.

Previous research found that patients with dementia were prescribed lower doses of opioids than patients with cancer with similar pain scores.

Other research has found that hospice nurses frequently asked relatives to interpret patients’ “pain signals.” For example, one caregiver knew her mother was in pain when she moved a certain way in her chair. Another recognized that his wife was in pain by observing how she squeezed the hand of a home health-care aide while being given a bath.

Sometimes, patients gasp for air or repeatedly touch the same part of their bodies.

Mantua said she watches her mother’s face and stays vigilant for winces or grimaces. Her face is still expressive, Mantua said. Still, there are no words, only moans to indicate something is wrong.

Recently, Mantua said her mother has been acting “strange.” Instead of her usual vacant but happy smile, Finster looked at her daughter with a “horrified” expression. Mantua told the hospice chaplain that it looked as though her mother had seen the devil.

The cause?

“You have no idea, because she can’t say anything,” Mantua said. “I was saying, ‘What’s wrong? What’s wrong?’ and she’s just looking at me like crazy.”

Finster has had dementia for 10 years. She has spent most of that time in facilities, moving from independent living to assisted living to memory care.

Mantua has felt some of the frustration that other caregivers of patients with dementia experience. Three or four years ago, when Finster still had a phone in her room, she sometimes called her son Les, Mantua’s older brother, 10 times to leave him the same message — that people were coming into her room and stealing her food. She simply forgot that she had called before.

Finster’s years of cognitive decline have taken a toll on Mantua and her family.

“You get to the point you want them to die because it’s hard,” Mantua said. “It’s hard to deal with. It’s a very helpless feeling.”

Now 53, Mantua is the mother of three adult children and the grandmother of twin 5-year-old boys. She said she doesn’t have the patience or natural caretaking abilities to tend to her mother full time.

It comforts her to know that her mother is looked after by a trained staff 24 hours a day, but for families who find themselves as the primary caregivers for dying dementia patients, the job can lead to anxiety, depression and grief, according to the recent study that Demiris helped write.

“Caregivers stated that patients were combative because they could not understand that interventions were meant to help them, or that they forgot about past pain and so rejected attempts at assessment and treatment,” the study said.

For families, a loved one with dementia can become like a stranger who grows angrier and more aggressive than the person they remembered, Demiris said, which “complicates the caregiving experience.”

Finster isn’t aggressive anymore. Mantua remembers when the dementia made her mother paranoid and angry. She was once so combative, the staff at her former assisted-living facility wouldn’t try to feed her unless Mantua or her brother were present.

The decision to begin hospice care wasn’t easy for Mantua or her family. She said it feels as if her mother is already gone.

There isn’t much for Mantua to do when she visits her mother. She chatters as Finster dozes, cradling a baby doll that is always with her. A staff member regularly changes the doll’s clothes, which amuses Mantua.

For now, she keeps driving an hour once every other week from her home on Maryland’s Eastern Shore to Finster’s room in Rockville, where they wait for the end together.

Complete Article HERE!

How do you honor a dementia patient’s end-of-life-wishes?

By Bob Tedeschi

EndNotes_alzeihmerQuest

A terminal illness can be devastating for an entire family, with relatives often forced to make decisions about a loved one’s care if the patient is no longer able to do so.

If the patient has dementia, the situation can be even harder. By the time a neurological disorder is diagnosed, many patients can’t think clearly or articulate their wishes for end-of-life care.

So what to do?

Amid the many imperfect options comes a new and promising one.

The Conversation Project, an organization that publishes a guide called “the Conversation Starter Kit,” to help families through end-of-life conversations, recently released a sequel for families of Alzheimer’s and dementia patients. Co-produced by the Institute for Healthcare Improvement, it was co-written by Ellen Goodman, a Pulitzer-winning journalist who founded the Conversation Project and who lost her sister to Alzheimer’s disease roughly four years ago.

“The day she was told by a doctor that she had Alzheimer’s, we got back in the car. She talked about it for a moment and I had this great sense of relief that it was finally on the table,” Goodman said. “Then of course the next day she forgot.”

“We were really too late,” she said.

Goodman knew she wasn’t alone. When promoting the importance of end-of-life conversations, she said, “We were repeatedly asked the question: ‘Yeah, but what if your loved one is cognitively impaired?’”

The new guide, which is available in full here, breaks down the conversation into several steps, with recommendations based on a person’s cognitive abilities.

If the person with dementia is still able to process information effectively, the guide suggests leading them through a brief questionnaire known as the “Where I Stand Scales.” On a scale of 1-to-5, for instance, they are asked how much they’d like to know about their condition and treatment, or how much of a say they would like to have in their medical treatment.

If they are in the midstages of the disease, loved ones are encouraged to gather information in small bites, and look for the right opportunities to talk. Dementia patients often have moments when they remember certain events clearly, like the extended illness of a friend, and such topics can offer the chance to ask questions that might uncover a person’s medical preferences.

If a relative can’t participate in the conversation, the guide suggests a family meeting in which participants fill out the questionnaire as the patient would.

“So often, the doctors will have the family in the room, and they’ll all be absolutely positive that their loved one wanted something, and they’ll all have a different idea of what that is,” Goodman said. “It’s critical to say ‘Let’s bring this person in the room: How did they make decisions? When did they say something about someone else with Alzheimer’s?’ Figure out what that person wanted, not what you want.”

For families who may be prone to conflict or messy tangents, the guide serves as a script and a means of building empathy through brief testimonials. One such testimonial reads: “The shame involved is very parallel to mental illness. The more profound or accomplished the people are, the more shame is involved. The behavior can be so off the charts that you want to both protect and hide.”

There’s an all-important recommendation that too many families overlook — namely, to create a written statement of wishes for caregivers, other family members, and EMTs to follow, and circulating the document or placing it somewhere that’s hard to miss. (On the refrigerator door, for instance.)

Joanna Baker, of Brookline, Mass., moved her parents closer to her home several years ago so she could more effectively manage her mother’s Alzheimer’s disease and spend time with them while they were still relatively healthy. The new Conversation Starter Kit came too late to help her form an end-of-life plan with her mother’s direct input, but she said it helped her in other ways.

“With someone in cognitive decline, you really have to go do the detective work — intuition, translating signals,” she said. “It’s already hard enough. We’re all plodding through this with a tremendous underlying stream of grief.”

Looking for signals in a loved one’s suddenly foreign behavior, she said, requires separating oneself from that grief long enough to view such behaviors not as a reminder of something lost but as a token of something valuable.

Baker has seen her mother exhibit new tendencies the more time she has spent in the dementia unit: deep affection for, and whispered conversations with, a realistic-looking stuffed cat named Douglas, and an affinity for brightly colored caps from washing detergent bottles, for instance.

There was also the time she lashed out at a doctor who gave her a flu shot.

“The doctor said ‘She’s telling you she really doesn’t want an intervention,’” Baker said. “That was like gold to me, because she was helping me interpret my mother’s behavior.”

Her mother is happy, and Baker is confident she is helping her mother live her life according to her mother’s wishes, down to the songs that play in her room.

“We’ve had to cull the music selection, because things she might’ve liked at one time would be less understandable,” she said. “‘Somewhere Over the Rainbow’” always works.”

“How do I know this?” she added. “I pay attention. Her toes tap when she hears that music.”

 Complete Article HERE!

Assisted-living facilities limit older adults’ rights to sexual freedom, study finds

Georgia State University

senior intimacy

ATLANTA — Older adults in assisted-living facilities experience limits to their rights to sexual freedom because of a lack of policies regarding the issue and the actions of staff and administrators at these facilities, according to research conducted by the Gerontology Institute at Georgia State University.

Though assisted-living facilities emphasize independence and autonomy, this study found staff and administrators behave in ways that create an environment of surveillance. The findings, published in the Journals of Gerontology: Social Sciences, indicate conflict between autonomy and the protection of residents in regard to sexual freedom in assisted-living facilities.

Nearly one million Americans live in assisted-living facilities, a number expected to increase as adults continue to live longer. Regulations at these facilities may vary, but they share a mission of providing a homelike environment that emphasizes consumer choice, autonomy, privacy and control. Despite this philosophy, the autonomy of residents may be significantly restricted, including their sexuality and intimacy choices.

Sexual activity does not necessarily decrease as people age. The frequency of sexual activity in older adults is lower than in younger adults, but the majority maintain interest in sexual and intimate behavior. Engaging in sexual relationships, which is associated with psychological and physical wellbeing, requires autonomous decision-making.

While assisted-living facilities have many rules, they typically lack systematic policies about how to manage sexual behavior among residents, which falls under residents’ rights, said Elisabeth Burgess, an author of the study and director of the Gerontology Institute.

“Residents of assisted-living facilities have the right to certain things when they’re in institutional care, but there’s not an explicit right to sexuality,” Burgess said. “There’s oversight and responsibility for the health and wellbeing of people who live there, but that does not mean denying people the right to make choices. If you have a policy, you can say to the family when someone moves in, here are our policies and this is how issues are dealt with. In the absence of a policy, it becomes a case-by-case situation, and you don’t have consistency in terms of what you do.”

The researchers collected data at six assisted-living facilities in the metropolitan Atlanta area that varied in size, location, price, ownership type and resident demographics. The data collection involved participant observation and semi-structured interviews with administrative and care staff, residents and family members, as well as focus groups with staff.

The study found that staff and administrators affirmed that residents had rights to sexual and intimate behavior, but they provided justifications for exceptions and engaged in strategies that created an environment of surveillance, which discouraged and prevented sexual and intimate behavior.

The administrators and staff gave several overlapping reasons for steering residents away from each other and denying rights to sexual and intimate behavior. Administrators emphasized their responsibility for the residents’ health and safety, which often took precedence over other concerns.

Family members’ wishes played a role. Family members usually choose the home and manage the residents’ financial affairs. In some instances, they transport family members to doctor’s appointments, volunteer at the facility and help pay for the facility, which is not covered by Medicaid. They are often very protective of their parents and grandparents and are uncomfortable with new romantic or intimate partnerships, according to staff. Administrators often deferred to family wishes in order to reduce potential conflict.

Staff and administrators expressed concern about consent and cognitive impairment. More than two-thirds of residents in assisted-living facilities have some level of cognitive impairment, which can range from mild cognitive impairment to Alzheimer’s Disease or other forms of dementia. They felt responsible for protecting residents and guarding against sexual abuse, even if a person wasn’t officially diagnosed.

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Co-authors of the study, Georgia State alumni, include Christina Barmon of Central Connecticut State University, Alexis Bender of Ripple Effect Communications in Rockville, Md., and James Moorhead Jr. of the Georgia Department of Human Services’ Division of Aging Services.

The study was supported by a grant from the National Institute on Aging at the National Institutes of Health.

Read the study HERE!

Complete Article HERE!

What Watching My Granddad Spiral into Dementia Has Taught Me About Life and Love

By Lauren O’Neill

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The first time my granddad didn’t recognize me wasn’t as bad as I expected it to be. He greeted me with warmth like always, except he didn’t call me “Lauren” or “love” but “son.” “Hello, son,” he said to me in the stubborn Dublin accent that years of living in England could not uproot. “How are you?” He was looking right at me, but he didn’t know who I was, and that was that.

When my granddad was initially diagnosed with dementia, my first predictably selfish response was to get really scared about him forgetting who I was. But when it eventually happened, it kind of just happened, the way that dementia itself just happens—quietly, with very little fanfare. It slips its thin, invisible fingers around sufferers’ throats, wringing out the personhood so slowly that in the beginning, you don’t even notice it. I didn’t cry like I thought I would when my granddad didn’t recognize me, because over time I had just got used to the idea that one day, he wouldn’t. When someone close to you gets dementia, you are forced to resign yourself to the plain fact of degeneration; it is a terrible thing to “just get used to,” but currently no cure exists, so getting used to it is all you can do if you’d rather not get sucked into an existential thought vortex concerning the cruelty, fragility, and ultimate futility of human life.

I don’t mean to be cynical. I know that if my granddad could read this, he would disagree with that last bit: For him, while he was well, life had a lot of meaning. He was a pretty committed Catholic, and a guy who, in general, enjoyed being a human person living in the world. For most of his life he ran pubs in Birmingham, and when he gave that up, he and my nan, whom he adored (and who now makes the two-train trip across the city to see him in his nursing home almost daily, with a dedication that only a woman who has been in love for more than 50 years could muster), went on loads of those cruises for people who have retired where there are rock-climbing walls on the ship. He was funny, and really good at mental arithmetic, and he liked singing IRA songs and drinking pints of Guinness. He had, especially in later life, a properly good time.Dementia

So when he started becoming forgetful, and when his wit got a bit duller than it had been before, nobody really thought anything of it, because he just wasn’t the type of person who would ever get a condition like dementia. He was too robust, too aggressively healthy in his old age, too different from the type of frail, elderly person we tend to commonly associate with dementia—he was just getting old. And even after a severe dissociative episode during a holiday in Spain, when he became convinced that he was sharing a bus with terrorists, and told hotel receptionists that my nan was trying to kill him, his GP diagnosed a nervous breakdown long before considering the possibility that the problem could be rooted in a degenerative disease. He simply was not that kind of man. Even the doctor thought so.

But of course, he was that kind of man, because any man can be that kind of man. Dementia can happen to literally anyone, regardless of physical health, though some people are more genetically predisposed to it than others. It is caused by some very complicated and very fucking scary and bad-sounding shit happening to your brain, and has some pretty horrific symptoms. In general, you gradually get worse at doing anything at all for yourself, turning previously simple daily tasks like going to the toilet and getting dressed into missions requiring approximately the same amount of organization and personnel as a moon landing. You lose your memory, to the extent that you start to forget some words. Eventually, you even forget how to move, and become bedbound. After that, your immune system packs in, and once that happens it’s kind of game over. Dementia, one; you, very much nil.

I had never considered having to deal with any of these symptoms, because the grandparents whose home I grew up in seemed so youthful for so long. Degenerative diseases were, to my mind, obviously terrible but ultimately distant, like wars on the news or something. Until my granddad got sick, the closest I came to dementia and its related conditions was via a great-uncle I didn’t really know, who died unusually young of Alzheimer’s. But then, after the incident in Spain, dementia’s spindly hands began to take hold of my granddad really quickly. I was 18, and had come home from my first term at university to a house where people had to take it in turns to sleep because my granddad had started pacing around every single night until dawn, the confusion in his head now torturous.

Dementia 75It is difficult to get used to the idea of someone who raised you needing to be looked after so thoroughly. It is even more difficult to become one of the people doing the looking after. My granddad was integral to my upbringing—I have lived in his house at numerous intervals during my life (I’m back here now, writing this), and he always nurtured me. It is weird, small things that I remember best, like how he made me watch Countdown with him so that I’d get better at spelling, and how carried me on his shoulders when he fetched me from school. Dabbing the side of someone’s mouth with a piece of kitchen roll after they drink a cup of tea is hard when you know that they used to clean up your baby sick, because you used to rely on them, and now they rely on you. It’s life, and it happens, but isn’t it fucking sad?

Dementia now affects an estimated 850,000 people in the UK, with the number expected to reach a million by 2025, which means that a lot of people reading this probably have firsthand experience of how fucking sad it is. But still, we don’t really talk about it, and I think that’s because it’s a disease that forces us to confront our most basic, human fears—like losing your dignity, or becoming a burden to the people you love, or even not knowing who or what you are. Because fundamentally, ego is what makes us human, and dementia takes that very human self-interest away, drip by drip. The grim vastness of that is terrifying; it’s no surprise that we don’t really want to discuss a disease that has the potential to chew us as if we’re tough pieces of meat, for a very, very, very long time, before eventually swallowing us forever.

Before necessarily succumbing to it, those who are unlucky enough to end their days with dementia usually go to live in nursing homes, because they need the kind of specialist, around-the-clock care that most families just can’t provide. Nursing homes are not an-body’s favorite places, and my granddad’s, despite its cheery purple decor, is no exception. Sadness looms on its corridors like humidity—never suffocating, but always palpable. It clings to the curtains, the walls, the sticky laminate flooring, the people. The friendly staff, mostly women of varying ages, do their best on a low wage, kindly chatting to the patients whose pasts, behaviors, likes and dislikes they have gotten to know well as they flit about the ward wearing disposable plastic aprons, from which fluids of various kinds can be wiped away. The armchairs in the lounge are tall and straight-backed to discourage slouching; the bedrooms are large and practical and beige.dementia

The walls of my granddad’s bedroom are covered in photos of family members whom he mostly doesn’t recognize. He knows my nan mainly by the sound of her voice, and even then his acknowledgement of her can wane from visit to visit. But there are still good days, when little rays of joyful humanity emit from him. When he gets a lot of stimulation from the staff or from visitors, there is still so much of my granddad that the illness has not been able to sap away yet. He comes to life when he hears music and is still a boisterous and enthusiastic singer; he dances and plays football, and receives visits from the local priest, who says prayers with him. All of this is, obviously, extremely cool to see. Equally, though, there are bad days. He can be angry, and anxious, and sometimes both. His life as a publican haunts him on those days, and his cloudy mind becomes fixated on money and work. If he doesn’t get the answers he wants, he can become moody and aggressive for entire days. His mood can change in the blink of an eye, and when I go to visit him, I never know which side of him I’m going to meet that day.

But I guess I’m not the only one. These days, there are an awful lot of people affected by dementia, both directly and indirectly, all over the world. I’m sure most of the people who feel its influence on their lives never expected to, just like me. Because you never expect dementia—before you experience it for yourself it is just a kind of faraway thing that is sad and big and scary if you think about it for too long, and something that occasionally happens on TV soaps when old people need to be written out. Nobody expects dementia, because we think we know our loved ones too well; we think their traits are too indelible, their personalities too strong, to ever be wiped out by mere disease. When it does arrive, it is unannounced; it creeps in silently and straps itself in for the long haul.

Ironically, though, however unexpected it may be when dementia comes knocking, you immediately know exactly what to expect. The distance at which you held the disease in your mind narrows very quickly, and what begins as terror and grave uncertainty becomes resignation and pragmatism. You learn to deal with the illness because you love the person it’s stealing away, and you eventually accept the fact that it’s never going to get better. Somehow, you cope. You just get used to it.
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