11/28/16

At 83, this patient advocate is still passionate about end-of-life care in Maine

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area -- first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

Eddington resident Pat Eye was instrumental in starting hospice services in the Bangor area — first at St. Joseph Hospital, then at Eastern Maine Medical Center, and finally her own New Hope Hospice in Eddington.

By Meg Haskell

EDDINGTON, Maine — Back in the 1980s — not all that long ago, really — hospice was essentially unknown in this country. Death, fearsome and mysterious, was a taboo topic in the health care setting. Doctors, trying to live up to their omnipotent reputations and avoid lawsuits, employed all possible measures to save lives, even when there was little or no hope for a cure, even at the natural end of a long life.

Patients with a terminal diagnosis often were not even told they were dying. They were hospitalized and endured painful, exhausting and expensive interventions instead of being provided with dignity, comfort and support in their final days. Because the focus was on cure, not comfort, their pain and anxiety often were poorly managed. Family members were also kept in the dark and found little support in preparing for loss or responding to grief.

Much has changed over the course of the past few decades. All over the country, hospice care is now a welcome, accepted and affordable model for providing comprehensive comfort and support to the dying and their loved ones while also cutting unproductive spending in the health care system.

While many factors have played into the rise of hospice nationally, no one has been more instrumental in bringing about this critical change in the northern half of Maine than area resident, registered nurse and passionate hospice advocate Patricia Eye.

Eye, a native of Machias who trained at Eastern Maine General Hospital School of Nursing, spent years traveling the globe in connection with her then-husband’s diplomatic career. She found ways to practice nursing wherever they were posted. She had encountered a hospice-like philosophy of care in other countries and while working at a children’s hospital in northern Virginia. It was in Virginia, too, where she first encountered the teachings of end-of-life advocate Elizabeth Kubler-Ross, whose revolutionary 1969 classic, “On Death and Dying,” sought to normalize death and outlined a five-stage process of healthy grieving.

“She was speaking my language about end-of-life issues,” Eye said during a recent conversation at her home. “That’s when I knew what I was going to do with the rest of my life.”

A patient advocate at heart

When Eye returned to the Bangor area in 1981, she encountered a health care community that had barely begun to grapple with end-of-life issues. A group calling itself COPES — no one seems to remember now what the acronym stood for — was meeting at Eastern Maine Medical Center, trying to organize a nonmedical, all-volunteer system of home-based support for dying patients. Beyond that, there was silence on the issue of hospice.

But by the time Eye semi-retired last year, there were at least five agencies delivering Medicare reimbursable hospice services in the Bangor area, helping thousands of residents of all ages live out their days and die peacefully in their homes. Eye has been a persuasive presence throughout this growth period, providing direct patient care, helping organize several of the agencies, working toward all-important Medicare certification and, in 1994, establishing her own agency, New Hope Hospice in Eddington.

“Some people’s personalities just resonate at a level that is deep and reflective,” Kandyce Powell, the longtime director of the Hospice Council of Maine, said. She’s known Eye professionally “for so long I can’t even remember,” she said. “Pat’s heart and soul have always been sensitive to the deepest needs of the people she cares for.”

Despite Eye’s soft-spoken ways and gentle demeanor, Powell said, she has been a determined advocate for the business-side growth of hospice, from the all-volunteer COPES model to a more structured and regulated system that is now paid for and supported by Medicare, Medicaid, veterans benefits and most private insurances. That transition has been critical to the expansion and consistency of hospice care across Maine, Powell said, and its availability to all Mainers regardless of ability to pay.

At the bedside, in the conference room and in policy debates, Powell said, “Pat has always been an advocate, ethically and morally, for the right to die. She has always done what was best for her patients.”

What is hospice?

Hospice, a longtime option in Great Britain and some European countries, is an end-of-life model that promotes the comfort and dignity of terminally ill patients over the possibility of cure. Originally considered an alternative for the very elderly and individuals with incurable cancer, hospice care is now available in this country for patients of all ages with any kind of untreatable, terminal illness.

Hospice provides highly individualized medical, emotional, spiritual and practical support for patients with six months or less to live and for their families and loved ones. Services, both paid and volunteer, are coordinated by the providing agency and delivered in the home, in a residential facility such as a nursing home or in a specialized hospice residence. Additionally, some hospitals set aside space for the delivery of hospice services to inpatients who cannot be adequately cared for at home.

In Maine, approximately 25 agencies deliver home hospice services, including medical and nursing care, clergy visits, social services, nutritional advice, visiting companions and more. Agencies also deliver equipment such as hospital beds, walkers and bedside commodes. Most agencies in Maine are nonprofit. Many are affiliated with larger health care systems; a few, such as New Hope Hospice, are independent.

In addition, there are four residential hospice “homes,” in Auburn, Scarborough, Rockland and at the Togus VA Medical Center near Augusta. A fifth hospice home will soon be built in Presque Isle. Greater Bangor doesn’t have one.

The artist's rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

The artist’s rendering of a building where Eddington resident Pat Eye is hoping to continue offering hospice services in Eddington.

An ‘evangelist for hospice’

It was not always like this, according to Sr. Mary Norberta, the former president and CEO of St. Joseph Healthcare in Bangor. Now retired and living in Connecticut, Norberta recalled that the Catholic organization in the early 1980s investigated the possibility of establishing an inpatient hospice unit at St. Joseph Hospital. Without a reliable funding source, it couldn’t work.

“We decided a home-based volunteer program would be more financially feasible and reach more people,” she said. Eye, who had been working on the cancer unit at EMMC and meeting with the COPES group there, moved over to St. Joseph to help set up the home hospice program.

“Pat and [social worker] Sr. Mary Romuald were the pioneers,” Norberta said. “They would trade off night shifts to sit with patients in their final moments.” In addition, the two recruited and trained a dedicated cadre of volunteers to help support patients and their families.

In those early days, Eye was persistent in telling patients the hard news of their terminal status, sometimes against doctors’ wishes. Patients must understand their condition in order to enter hospice care.

“She had tremendous compassion and she was never pushy about it,” Norberta said, “But she was always able to tell people the tough things they needed to hear.”

Dr. Toby Atkins, a primary care provider in Bangor for about 40 years, was also part of the hospice startup at St. Joseph Hospital. He recalled that there was early confusion about the role of hospice workers, who, unlike home health nurses, aimed to keep patients home instead of sending them back to the hospital when their conditions worsened.

“The whole idea of the ‘do not resuscitate’ order was just getting developed,” he said, and some health workers, including visiting nurses and ambulance crews, refused to honor it. Atkins, who now serves as the medical director at Community Health and Counseling Services in Bangor, said Eye was key in educating doctors, nurses and other providers about the intent and the importance of the DNR order, which allows terminal patients to die naturally without the trauma of medical interventions aimed at “saving” them.

“Pat was a real evangelist for hospice,” Atkins said. “She got right into her patients’ lives and provided lots of support, lots of services.”

Still looking ahead at 83

In 1984, Congress directed the federal Medicare program to pay for hospice care. With guaranteed funding — and no small amount of regulation and oversight — provider agencies have since blossomed across the country. Hospice, not long ago a controversial, hard-scrabble, grass-roots effort, is now a well-established and respected player in the national healthcare system.

These days, Eye lives with her son John, 52, and a menagerie of geriatric dogs and cats in a comfortable old farmhouse in Eddington. At 83, she remains active in her chosen field, providing community outreach and clinical support for New Hope Hospice.

She has weathered some deep sorrows. She lost her 58-year-old daughter, Connie, to cancer last year. Another child, her son Lance, suffered with mental illness and took his own life, years ago, at age 28. Her marriage ended in divorce in 1985.

But she has blessings, too. She had a leaky heart valve repaired recently but is otherwise in good health. She is close with her other daughter, Kitty, a nurse who works locally in long-term care.

She enjoys her life, her family, her home and all the pets — “They’re all rescues and strays,” she said — who share it with her.

And she continues to love her work. “To do this work, you cannot help but be close to God,” she said.

Thanks to all the traveling she did in the first half of her life, she feels at ease with many world religions. “It doesn’t matter. We all have the same god,” she said. “Religion really just gets in the way.”

If she has a burning wish, it is this: to see New Hope Hospice build the residential care facility she envisioned when it first opened for business.

“My theory is that every community should have a small, inpatient hospice home,” she said firmly, “even if it’s just two beds.”

She produced an architect’s drawing of an eight-bed, bungalow-style home. “We already own a lovely piece of land for it,” she said, brushing off the dust. “ And there’s such a need in this area. It’s just a matter of finding the money.”

And with that, it’s clear that nurse Pat Eye is still advocating for her patients, still intent on identifying and serving the end-of-life needs of Eastern Maine.

Complete Article HERE!

10/4/16

Dying woman picks road trip over chemotherapy

By Annie Flury

Norma and her son Tim

Norma and her son Tim

When 90-year-old Norma Bauerschmidt was diagnosed with terminal cancer, her immediate instinct was to refuse treatment and instead find a more positive way to spend her final days.

So she embarked on the road trip of lifetime and unwittingly became an internet hit along the way, when the Facebook page about her travels started attracting more than 440,000 followers.

Ramie Liddle and her mother-in-law Norma Bauerschmidt

Ramie Liddle and her mother-in-law Norma Bauerschmidt

Mrs Bauerschmidt, from Michigan, spent just over a year on the road with her son Tim and his wife, Ramie Liddle, in their motor home, before her death last week.

They had traveled more than 13,000 miles (20,900km) and visited 34 states.

 The family travelled more than 13,000 miles in their motorhome

The family travelled more than 13,000 miles in their motorhome

The adventure began in July 2015, when, after a routine scan, Mrs Bauerschmidt’s doctors told her she had terminal cancer.

It was just two days after the death of her husband, Leo.

Her daughter-in-law said: “Tim and I had lived on the road for a couple of years, and when her husband passed we did what all families do and invited her to live with us.”

“She thought about it for about a minute-and-a-half and said, ‘Yes’. She was ready for an adventure.”

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“One of the first things we did was buy a wheelchair for her, and that was her ticket to freedom,” said Ms Liddle.

“From that point, on we could go out and about on outings or do whatever she wanted.”

It was Ms Liddle’s idea to start the Facebook page Driving Miss Norma.

“It was just so my family would know where we were, but Norma was absolutely shocked when it took off,” she said.

Norma Bauerschmidt and her son Tim with a CBS camera crew

Norma Bauerschmidt and her son Tim with a CBS camera crew

Ms Liddle said they had travelled from place to place, staying anything from a day to a month depending on how they felt.

And as Mrs Bauerschmidt’s Facebook following had grown, they had started to get invitations to lots of events and gatherings – including an Atlanta Hawks basketball game and countless people’s homes for dinner in the evenings.

The family travelled across the country harvesting hazelnuts in Friday Harbour in Washington, taking part in the St Patrick’s Day Parade in Hilton Head Island, South Carolina, visiting Yellowstone National Park and touring the Massachusetts coast.

They took a trip underground to visit the Consolidated Gold Mine in Georgia and Mrs Bauerschmidt even managed to fulfil one of her lifetime ambitions when she took a ride in a hot air balloon in Florida.

“In the last year, we have seen the best of the best of the people in this country,” she said.

Life on the open road

Life on the open road

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Ms Liddle said her mother-in-law had been a very humble woman with no grand needs, but she had had a very clear idea about what had been important to her.

“She had a very happy last year, and was a very simple woman who had never had any attention in her life,” she said.

“And that’s the beauty of this story – she was just herself.”

Complete Article HERE!

09/5/16

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!

09/3/16

Senior citizens unfairly denied right to intimacy

We must promote a conversation that is sensitive to the sexual needs of our aging population

Elderly-couple

By

Sex therapist Shirley Zussman insists that “in the long run, sexual pleasure is just one part of what men and women want from each other.” Zussman, still practicing, is now over 100 years old. She has worked with William Masters and Virginia Johnson, renowned pioneers in sexuality research, and is the creator of the blog “What’s Age Got To Do With It?” She is one of countless others who emphasize the importance of sex at every age.

The benefits sex normally yields become more imperative as we age. Senior sex promotes cardiovascular health, pain relief and can ward off feelings of depression and isolation that become more prevalent with senescence. However, when a senior citizen enters a nursing home or long-term care facility, they are often discouraged from having a sexual relationship with other residents.

In nursing homes across the country, elders are being denied their natural right to intimacy. Only four states protect the right for unmarried and married couples to have private visits. 18 states address the right to a private visit by married couples, and the remaining 28 states adhere to federal regulation that does not entitle residents to a private room. Most nursing homes lack a clear policy on sex and relationships. To treat consenting adults as asexual, or to ignore their sexuality altogether is cruel and paternalistic.

Affection between elders is sometimes infantilized as cute, or rebuked by juveniles as gross. This promotes ageism and the stereotype that sex is only for young people. Some seniors reflect that sex and intimacy improve with age. Our culture has a significant lack of understanding about how the dynamics of sex and relationships change as people age. We may not like to think of the sex lives of our parents and grandparents, but we must comprehend and protect their needs when they are under scrutiny.

The Hebrew Home in Riverdale, New York, has pioneered a sexual expression policy, in which residents are encouraged to pursue sexual relationships if they so desire them. Residents even relish in the home’s senior prom, which they say makes them feel young again. The progressive approach was introduced not only to promote comfort, but to set a standard for how staff should approach intimacy among residents and to protect other residents from unwanted advances. The home’s staff supports their residents’ autonomy, with one aide constructing a do not disturb sign.

Of course, geriatric sexual expression is not devoid of complications. The issue of consent in patients with Alzheimer’s and dementia has spawned numerous legal battles. In 2014, Henry Rayhons was acquitted of sexually abusing his wife who suffered from Alzheimer’s. The Hebrew Home assesses consent on a case-by-case basis, allowing even residents with cognitive impairment the right to have sex in certain situations.

Because pregnancy is no longer a concern, many seniors don’t feel the need to use condoms, which is partially responsible for the burgeoning growth of STDs in nursing homes. Care facilities have an obligation to address the sexual health of their residents with proper education and an open dialogue. In Australia, former nurse Elaine White discusses the importance of K-Y Jelly, Viagara, sex aids, vibrators and even pillows to support limbs with residents.

As the generation that sparked the sexual revolution begins to enter long-term care facilities, we must promote a conversation that is sensitive to the needs of our aging population and maintains the autonomy and dignity that comes with sexual well-being.

Complete Article HERE!

09/3/16

How To Fight For Yourself At The Hospital — And Avoid Readmission

By Judith Graham

Hands of an older woman in the hospital

Everything initially went well with Barbara Charnes’ surgery to fix a troublesome ankle. But after leaving the hospital, the 83-year-old soon found herself in a bad way.

Dazed by a bad response to anesthesia, the Denver resident stopped eating and drinking. Within days, she was dangerously weak, almost entirely immobile and alarmingly apathetic.

“I didn’t see a way forward; I thought I was going to die, and I was OK with that,” Charnes remembered, thinking back to that awful time in the spring of 2015.

Her distraught husband didn’t know what to do until a longtime friend — a neurologist — insisted that Charnes return to the hospital.

That’s the kind of situation medical centers are trying hard to prevent. When hospitals readmit aging patients more often than average, they can face stiff government penalties.

But too often institutions don’t take the reality of seniors’ lives adequately into account, making it imperative that patients figure out how to advocate for themselves.

“People tell us over and over ‘I wasn’t at all prepared for what happened’ and ‘My needs weren’t anticipated,’” said Mary Naylor, director of the New Courtland Center for Transitions and Health at the University of Pennsylvania.

It’s a mistake to rely on hospital staff to ensure that things go smoothly; medical centers’ interests (efficiency, opening up needed beds, maximizing payments, avoiding penalties) are not necessarily your interests (recovering as well as possible, remaining independent and easing the burden on caregivers).

Instead, you and a family member, friend or caregiver need to be prepared to ask plenty of questions and push for answers.

Here’s what doctors, health policy experts, geriatric care managers, older adults and caregivers recommend:

Start Planning Now

Planning for a transition home should begin as soon as you’re admitted to the hospital, advised Connie McKenzie, who runs Firstat RN Care Management Services in Fort Lauderdale, Fla. You may be too ill to do this, so have someone you trust ask your physician how long you’re likely to be hospitalized and whether you’ll be sent home or to rehabilitation afterward.

Ask if a physical therapist can evaluate you or your loved one at the hospital. Can you get out of bed by yourself? Walk across the room? Then discuss what difficulties might arise back home. Will you be able to handle your own bathroom needs? Get dressed? Climb stairs? What kind of assistance will you require?

Request a consultation with a nutritionist. What kinds of foods will and won’t you be able to eat? Does your diet need to change over the short term, or longer term?

Consider where you’ll go next. If you or your loved one is going to need rehabilitation, now is the time to start researching facilities. Ask a hospital social worker for advice or, if you can afford it, hire a geriatric care manager (now called aging life care professionals) to walk you through your options.

Before Being Discharged

Don’t wait to learn about the kind of care that will be required at home. Will a wound need to be dressed? A catheter need tending to? What’s the best way to do this? Have a nurse show you, step by step, and then let you practice in front of her — several times, if that’s what it takes.

Ann Williams watched a nurse give her 77-year-old mother a shot of Warfarin two years ago after being hospitalized for a dangerous blood clot. But when it was Williams’ turn to give the injection on her own, she panicked.

“I’m not a medical professional: I’ve only given allergy shots to my cats,” she said. Fortunately, Williams found a good instructional video on the Internet and watched it over and over.

Make sure you ask your doctor to sit down and walk you through what will happen next. How soon might you or your loved one recover? What should you expect if things are going well? What should you do if things are going poorly? How will you know if a trip back to the hospital is necessary?

If the doctor or a nurse rushes you, don’t be afraid to say, “Please slow down and repeat that” or “Can you be more specific?” or “Can you explain that using simple language?” said Dr. Suzanne Mitchell, an assistant professor of family medicine at Boston University’s School of Medicine.

Getting Ready To Leave

Being discharged from a hospital can be overwhelming. Make sure you have someone with you to ask questions, take good notes and stand up for your interests — especially if you feel unprepared to leave the hospital in your current state, said Jullie Gray, a care manager with Aging Wisdom in Seattle.

This is the time to go over all the medications you’ll be taking at home, if you haven’t done so already. Bring in a complete list of all the prescriptions and over-the-counter medications you’ve been taking. You’ll want to have your physician or a pharmacist go over the entire list to make sure there aren’t duplicates or possibly dangerous interactions. Some hospitals are filling new prescriptions before patients go home; take advantage of this service if you can. Or get a list of nearby pharmacies that can fill medication orders.

Find out if equipment that’s been promised has been delivered. Will there be a hospital bed, a commode or a shower chair at home when you get there? How will you obtain other supplies that might be needed such as disposable gloves or adult diapers? A useful checklist can be found at Next Step in Care, a program of the United Hospital Fund.

Will home health care nurses be coming to offer a helping hand? If so, has that been scheduled — and when? How often will the nurses come, and for what period of time? What, exactly, will home health caregivers do and what other kinds of assistance will you need to arrange on your own? What will your insurance pay for?

Be sure to get contact information (phone numbers, cell phone numbers, email addresses) for the doctor who took care of you at the hospital, the person who arranged your discharge, a hospital social worker, the medical supply company and the home health agency. If something goes wrong, you’ll want to know who to contact.

Don’t leave without securing a copy of your medical records and asking the hospital to send those records to your primary care doctor.

Back At Home

Seeing your primary care doctor within two weeks should be a priority. “Even if a patient seems to be doing really well, having their doctor lay eyes on them is really important,” said Dr. Kerry Hildreth, an assistant professor of geriatrics at the University of Colorado School of Medicine.

When you call for an appointment, make sure you explain that you’ve just been in the hospital.

Adjust your expectations. Up to one-third of people over 70 and half of those over 80 leave the hospital with more disabilities than when they arrived. Sometimes, seniors suffer from anxiety and depression after a traumatic illness; sometimes, they’ll experience problems with memory and attention. Returning to normal may take time or a new normal may need to be established. A physical or occupational therapist can help, but you may have to ask the hospital or a home health agency to help arrange these visits. Often, they won’t offer.

It took a year for Barbara Charnes to stand up and begin walking after her ankle operation, which was followed by two unexpected hospitalizations and stints in rehabilitation. For all the physical difficulties, the anguish of feeling like she’d never recover her sense of herself as an independent person was most difficult.

“I felt that my life, as I had known it, had ended,” she said, “but gradually I found my way forward.”

Complete Article HERE!

08/29/16

LGBT Seniors Are Being Pushed Back Into the Closet

By David R. Wheeler

To curb harassment in care facilities, one woman is teaching staff members to respect their elders’ sexual orientations.

** FILE** In this March 3, 2008 file photo, Phyllis Lyon, left, and Del Martin are photographed at home in San Francisco. On Monday, June 16, 2008, San Francisco Mayor Gavin Newsom will marry Martin and Lyon making them the first same sex couple to wed in San Francisco. (AP Photo/Marcio Jose Sanchez)

Phyllis Lyon, left, and Del Martin are photographed at home in San Francisco. They were the first same sex couple to wed in San Francisco.

A few years ago, Rabbi Sara Paasche-Orlow was spending time with, and comforting, a friend who was dying of cancer. Along with all of the usual difficulties and complexities of end-of-life care, there was an additional concern for the friend. Despite being married to her lesbian partner, she didn’t feel like she could be open about it with the hospice worker.

“When hospice came in, I couldn’t stay next to her in the bed,” the friend told Paasche-Orlow, “I had to separate myself. I had to pretend I was something I wasn’t.”

Although Paasche-Orlow never learned the exact reason for the discomfort, her friend’s reluctance to reveal her sexual identity is widespread among non-heterosexual senior citizens in long-term care. A recent national survey of this population by the National Resource Center on LGBT Aging—which provides support and services to lesbian, gay, bisexual, and transgender elders—found that the respondents were frequently mistreated by care-center staff, including cases of verbal and physical harassment, as well as refusal of basic services. Some respondents reported being prayed for and warned they might “go to hell” for their sexual orientation or gender identity.

In Paasche-Orlow’s case, her friend’s statement haunted her so much that she launched a series of programs to help long-term-care residents and staff members deal with the barriers to care for LGBT seniors—and the health disparities that may result. Her aim is to guard these seniors from being forced back into the closet as they age.

“I couldn’t go back and change it for my friend, but we could start thinking much more proactively about this,” Paasche-Orlow said.

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With gay marriage legal nationwide and organizations such as The LGBT Aging Project, a nonprofit that advocates for equal access to life-prolonging services, in operation for more than a decade, Americans should theoretically be living in a golden age for LGBT seniors. Yet the LGBT Aging Center’s survey found that only 22 percent of respondents felt they could be open about their sexual identities with health-care staff. Almost 90 percent predicted that staff members would discriminate based on their sexual orientations or gender identities. And 43 percent reported instances of mistreatment. Meanwhile, few elder-care providers have services directly targeted at helping them.

To deal with this problem, Paasche-Orlow decided to integrate LGBT-focused programs into her work as the director of Religious and Chaplaincy Services at Hebrew SeniorLife, a Harvard-affiliated organization that provides health care to more than 3,000 Boston-area elders. Paasche-Orlow’s programs range from sensitivity training to bringing in LGBT youth from local high schools to spend time with residents.

Although the residents are grateful for the programs, community members such as Mimi Katz acknowledge there’s still a long way to go. Katz, who came out as a lesbian in 1968, lives in a Hebrew SeniorLife facility in Brookline, Massachusetts. She says that one of the major problems today’s elders must contend with is unspoken homophobia. “In the more liberal Brookline kind of setting, nobody is going to be overtly homophobic,” she said. “It’s the same thing as racism. Nobody wants to think of themselves as a racist, but then somebody will say, of one of the black aides, ‘Oh, she’s so well-spoken.’ That kind of thing. Or somebody will say to me, about a woman whose child is gay, ‘Oh, the heartache she goes through.’”

Katz can’t help but be exasperated when these moments occur. “It’s like, ‘Hello!’” she said.

In terms of concrete activities offered by Hebrew SeniorLife, Katz was especially appreciative of her community’s screening of the 2010 documentary Gen Silent, which follows the stories of six LGBT senior citizens who must navigate the intricacies of a long-term care system that is unsupportive of LGBT individuals. But Katz believes what will ultimately benefit LGBT elders the most is staff training. “The only way to deal with it is by example,” Katz said.

According to Paasche-Orlow, most care providers and staff members would never knowingly discriminate against someone because of their sexual identity. But that doesn’t mean LGBT seniors feel like they can be themselves. There’s a difference, Paasche-Orlow acknowledged, between wanting to provide a safe environment and actually providing one. “What we know about the whole field of cultural competency is that, unless I really understand the person I’m serving, I’m going to provide them with what I personally would like, or what I think they need.”

For example, a well-meaning staff member might accidentally make an LGBT elder uncomfortable by asking certain questions—about spouses, children, or grandchildren—that assume the resident is heterosexual. “Instead, we encourage people to ask, ‘Who are the important people in your life?’” Paasche-Orlow said.

Paasche-Orlow’s work does seem to be influencing the Hebrew SeniorLife staff. “The series of LGBT trainings that we went through opened my eyes to the experiences and needs of the transgender community,” said Marie Albert Parent Daniel, a nurse at Boston’s Hebrew Rehabilitation Center who now considers herself an LGBT advocate. “The trainings also gave me language and terminology to help support and educate staff members who may be struggling with how to best care for LGBT residents. … It hurts my heart to see that there are elderly people who are afraid to share their stories and live openly.”

Although an increasing number of long-term care facilities throughout the country are doing more to reach out to LGBT seniors, significant progress is needed before this becomes a widespread practice, said Tari Hanneman, director of the Health Equality Project at the HRC Foundation. “Unfortunately, because so many LGBTQ elders are not comfortable being out, aging service providers often do not realize that they are serving this population and do not recognize that they may need to change their policies and practices to become more LGBTQ-inclusive.”

Complete Article HERE!

08/25/16

Home Remodeling and Modifications for People with Special Needs

By US Insurance Agents

senior-veteran-in-wheelchairIs it difficult to remain independent and get things done at home because of the lack of modifications in a standard house or apartment? The U.S. government, as well as a multitude of private not-for-profit organizations, is doing its best to make sure that each person with a definable need has a home that accommodates their limitations and requirements. There are resources available for determining what modifications need to be made and what needs to be done to get them completed. In addition to that, funding is available for the disabled, elderly, veterans, low-income, and even for students and others who are just getting started in life.

Federal Laws

If you own your own home, you have the right to make modifications, although it is very likely that a local inspector may have to approve them and make sure that they meet safety standards and that the construction is being done properly.

However, it’s not just home owners who have rights. According to the federal Fair Housing Act and Fair Housing Amendments Act, disabled renters are allowed to make reasonable modifications to make life easier, as long as the property is not left in a way that it cannot be reasonably used by the next tenant. As long as you have a disability that can be confirmed by a doctor, you are protected by the law. The property owner has some protection as well. To avoid people abusing the right to modify a home, a property owner may ask to see a letter from your physician confirming the disability, especially if it is an invisible disability, such as a mental disorder, that may not be easy for a nonprofessional to identify.

Federal Resources

The U.S government has many programs that offer assistance with home modifications. Here are a few of our top picks:

The Process

To begin with modifications, the first thing you will need to do is consider your needs.

Assess your space and your needs. It is easiest to make a checklist that clarifies what you currently need assistance with at home, what are your current safety concerns, and what would make your life easier.

Things to consider:

  • Handrails – Are they already provided in all areas where you may need them, such as along ramps, stairs, in the bathroom, or by the bed?
  • Stairs – Do you need to climb stairs to get into the building or to access areas within the building such as laundry facilities or rooms in your apartment or house?
  • Tripping hazards – Are there rugs or other aspects of flooring that may cause a tripping hazard?
  • Lighting – Is there enough lighting and can motion sensors turn it on or is the switch easily accessible?
  • Non-slip surface – Are there areas in the kitchen, bathroom or elsewhere that may be a slipping hazard?
  • Doors and door handles – Are the handles easily reachable and is the door maneuverable?
  • Safety – Can you see who a visitor is without having to open the door first?
  • Your own unique needs!

To learn more about creating a checklist and assessing your needs, visit The Assistive Technology Advocacy Center (ATAC) of DRNJ’s Home Modification Resource Guide.

You can also visit AARP. They have an excellent page, Make Your Home a Safe Home.

disabled youngsters

The Next Steps

Now, it is time to start the process, but where should you begin? Planning!

Planning

This is a good time to bring a contractor in to help create a design for the adaptations. It is important to find someone who is qualified. Ask locally, look into their references, and do not be afraid to reach out to more than one before making a decision. You can also check with theBetter Business Bureau and your local Chamber of Commerce to see if they have any complaints filed against them.

  • If you are looking for ideas to share with your contractor, the Fall Prevention Center for Excellence has a great Video Library.
  • The Federal Trade Commission has a section on Hiring Contractors.

Designing

This is where all of the ideas come together. Work with a professional and make sure that all of the details that you need are included in your design. You want your home not just to be adapted to your needs, but also to be a pleasure to live in.

For ideas for how to go about designing a home, you can visit:

Remodeling

Remodeling can be a big step, and not every home needs major alterations. Some can do with just temporary and removable modifications. The process of major modifications may also leave the space unusable during the construction process; however, the long-term results may be more than worth the temporary inconvenience.

To learn more about remodeling, visit:

Other Things to Consider

There is a lot to consider when making changes to the home. Take your time, consider all of the pros and cons, and look into as many resources as you can.

Temporary vs Permanent Changes

Do you plan to stay in the residence, or will you be moving at some point? Investing in major changes to a building that you cannot bring with you may not be suitable if you see yourself changing locations in the future. However, permanent changes may be sturdier and long lasting, which can be beneficial in the present as well as the future.

disabled vets

Tips and Advice

Look into what adaptations are used in other residences. Do not forget to consider the materials, available space, and how you will be using that space. Most importantly, never be afraid to ask questions!

You should also take into consideration your own specific needs.  Will recommended changes make a big difference to you?  Are there other changes that could improve your daily life more than others?

Don’t take the retail prices of items at face value.  There are different ways of paying for updates which means certain updates may be less expensive than the sticker prices you see.

Additional Resources

Costs

When making estimates, make sure to include all labor, materials, permits, consultations, and extra expenses such as alternative accommodations while the area is under construction.

Funds

When added all together, the costs can seem unattainable, but remember the government programs listed at the beginning of this article, and also look into the following organizations:

Additional Information for College Students

Disabled students are protected under the law. You have the right to reasonable accommodations, and that includes either on-campus or off-campus housing that is adapted to your needs. In addition to a suitable living space, if you have a proven disability the university must also assist in making sure that you can access courses and course materials.

Additional Information for Renters

As a renter, you may feel as if you lack the rights of a homeowner. However, that is not the case when it comes to U.S. law protecting the rights of the disabled. You simply need to know your rights, and know who to reach out to when those rights are not being recognized.

To learn about your rights, you can visit:

Complete Article HERE!