10/15/17

Alzheimers Q&A: What is an AIM Program?

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The Advance Illness Management (AIM) program/model was developed to provide home-based palliative care and management of transitional care for individuals with advance chronic disease. The AIM program benefits those who are not yet ready for hospice or have refused to elect a hospice program.

For the most part, AIM is essentially a specialized home care program. It is not hospice. Whereas traditional home care services promote recovery and rehabilitation and the individual is admitted and discharged quickly, the AIM program promotes transition between end-of-life care for individuals with late-stage illness. Moreover, AIM focuses on symptom management and comfort.

Traditional home health services are offered to individuals with a brief illness or debilitating circumstances that are not considered terminal. Palliative home health services are provided to those facing terminal illness who wish to continue life-extending or curative treatment or need more time to explore options. The AIM program manages the needs of individuals facing terminal illness. A person can transition into hospice care if and when that decision is made, with no change in the consistent caregiver.

In order to participate in an AIM program, individuals must satisfy at least two of the following criteria:

• Advance cardiac disease, end-stage pulmonary disease, end-stage liver disease, end-stage Alzheimer’s or dementia, other end-stage diagnoses or advanced debility and decline.

• Non-palliative treatment of primary disease process is failing or losing effectiveness, such as when cancer chemotherapy is ineffective.

• Individual has poorly controlled pain or other end-of-life symptoms.

• A decline in functional and or nutritional status in the past 30 days.

• The person is eligible for hospice but refuses enrollment.

The AIM palliative home health visits are less frequent than hospice visits, yet the person and his or her family are provided similar services as those received through hospice from the same qualified and compassionate staff, while they continue to see curative treatments. And, with the AIM program, if at some point the individual and family decide to utilize the services of hospice care, they have the comfort of knowing that their team of health care providers will remain the same.

For more information about the services provided by AIM, check with your physician or health care provider.

Complete Article HERE!

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10/14/17

New study looks at end-of-life decision making for people with intellectual disabilities

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by Bert Gambini

 
A new study by researchers at the University at Buffalo provides a groundbreaking look at how advance care planning medical orders inform emergency medical service (EMS) providers’ experiences involving people with intellectual disabilities.

Most states in the U.S. have programs that allow to document their end-of-life decisions. In New York, the Medical Orders for Life-Sustaining Treatment form (MOLST) allows individuals to document what measures , including EMS providers, should take near the end of a patient’s life.

Studies suggest that this approach to person-centered advance care planning can alleviate a dying patient’s pain and suffering, according Deborah Waldrop, a professor in the UB School of Social Work and an expert on end-of-life care. Yet little research on end-of-life decision-making has been done on the growing population of older Americans with intellectual disabilities, which the American Association on Intellectual and Developmental Disabilities defines as a disability characterized by significant limitations in learning, reasoning, problem solving, and a collection of conceptual, social and practical skills.

Waldrop and Brian Clemency an associate professor of emergency medicine in the Jacobs School of Medicine and Biomedical Sciences, authored one of the first scholarly examinations of how pre-hospital providers assess and manage emergency calls for patients who do not wish to be resuscitated or intubated. Jacqueline McGinley, a doctoral candidate in UB’s School of Social Work, joined their research team and served as first author for their most recent work.

Through a series of interviews with five different agencies in upstate New York, the researchers asked EMS providers specifically how forms like the MOLST shape what they do in the case of someone with an intellectual disability.

“The best available research before our study suggested that as of the late 1990s, fewer than 1 percent of people with intellectual disabilities had ever documented or discussed their end-of-life wishes,” says McGinley. “But with this study, we found that about 62 percent of the EMS providers we surveyed had treated someone with an intellectual or developmental disability who had these forms.”

That disparity points to the need to illuminate this understudied area of how people with intellectual disabilities are engaging in end-of-life discussions, according to McGinley.

She says the EMS providers’ charge is to follow protocol by honoring the documents, their directions and organizational procedures. The MOLST, as its name implies, is a medical order that providers are professionally bound to respect. Their procedures are identical for all emergency calls involving someone who is imminently dying regardless of a pre-existing disability, the study’s results suggested.

But questions remained.

“We heard from providers who wrestled with the unique issues that impact this population, including organizational barriers when working across systems of care and decision-making for individuals who may lack capacity” says McGinley.

There are approximately 650,000 adults age 60 and older in the U.S. with intellectual disabilities, according to Census Bureau figures from 2000. Demographers expect that figure to double by 2030, and triple within the foreseeable future.

Person-centered advance care planning specifically involves the individual in discussions about their health history, possible changes to their current health status and what future options might be available in order to best inform that person’s end-of-life decision-making.

The results, published in the Journal of Applied Research in Intellectual Disabilities, suggest that medical orders largely favor efforts to prolong life. This may be due to a reluctance to discuss advanced care planning in this population. Still, this sociocultural context must be strongly considered as future research explores how people with intellectual engage in end-of-life discussions.

Since January 2016, Medicare pays for patients to have conversations with medical providers. In fact, at least once a year, as part of a service plan through the state, people with have face-to-face discussions with their service providers, according to McGinley, who notes the importance of this built-in opportunity to have conversations about serious illness and the end of life.

“What’s most important in all of the work we do is knowing that people can die badly,” says Waldrop. “We know we can make changes that illuminate some of the uncertainties and improve care for people who are dying. Knowing how forms, like the MOLST, are applied in the field is an incredible step in the right direction.”

Complete Article HERE!

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10/3/17

The Painful Choices End-of-Life Brings for the Caregiver

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by Kay Bransford

Caught off guard

The final days for both my mom and dad were unexpected. When we got their initial diagnoses in 2012 — Alzheimer’s for dad and vascular dementia for mom — we were told they could live for a decade or more.

Early on, I fought to be their caregiver. Due to the nature of their conditions, they just didn’t recognize how many issues they had managing their day-to-day lives. Eventually, they accepted my help. I adapted to being the primary adult family caregiver and absorbed the additional responsibility to advocate for their needs.

I wasn’t prepared for how hard it would be to make decisions about life and death for my parents. Thankfully, I was very clear on their wishes. I spent most of my adult life living near my parents and visited them two or three times a week. On many occasions, as my parents were watching or caring for their own parents, they would comment on how they would like to be treated.

Over the years, my mom must’ve told me at least a hundred times that “If I end up like my mom, put a pillow over my head.” Obviously, I couldn’t do that, but it reinforced the fact that she wanted quality of life, not just life. My dad wasn’t as conversational about his wishes, but when he would share what was happening to colleagues and friends, we would discuss how our family might face the same situations. In those moments, I also learned what was important to him.

In 2013, after my parents moved into an assisted living community, life and caregiving became much easier, at least for a while. The biggest issue was handling the multitude of calls to come visit. Sadly, my parents never remembered when I visited. They would often call me while I was on the car ride home to ask when I was stopping by.

What’s wrong with dad?

In the spring of 2013, I noticed that my dad was starting to drool, and on some visits, his speech was a little garbled. The staff doctor at the assisted living community didn’t find anything unusual and felt that this was likely related to the Alzheimer’s. I wanted to be sure, so I set up an appointment with a specialist.

The specialist didn’t find anything out of the norm. My parents had dentist appointments coming up, so we decided to wait and see whether the dentist noticed anything unusual.

Unfortunately, the appointments my parents had with the visiting dentist came and went. When it came time to see the dentist, they’d both declined to be seen. They were put back on the dentist’s wait list, but I didn’t want to go that long without conclusive information about dad’s symptoms.

Instead of waiting for the dentist’s appraisal, I requested a swallow consult with the community’s speech pathologist for dad. I was surprised to learn that my dad’s tongue seemed to be paralyzed. My dad was immediately referred to the doctor at the assisted living community. The community doctor found a growth on the back of dad’s tongue and suggested that we see a specialist for mouth cancers right away.

Within a few days, the specialist confirmed that dad had a tumor. The tumor tethered his tongue, which prevented him from being able to move it to swallow or speak clearly. We learned that dad had options for treatment, but they would be extensive: chemotherapy, radiation, and a feeding tube. Thankfully, one of my brothers was able to come to town and help me figure out how to best help our dad.

Deciding what comes next

Two months before the doctor diagnosed dad’s tumor, our parents celebrated their 60th wedding anniversary. As their children, we were proud that we could keep them together as they were both living with similar stages of different types of dementia. There aren’t many options for couples who both need memory care.

Although they were together throughout dad’s new diagnosis, we knew that our mom didn’t understand what dad was facing. What we did know was that they were better as a pair, and we wanted to see if we could get them more time together. We were raised to put up a fight for the things we wanted, and we were prepared to go into battle for dad.

Getting his teeth cleaned by a specialist was the first step in getting treatment for his tumor. In order to get his teeth cleaned, he had to get cleared by a cardiologist for the procedure. This is because they would have to sedate him during the teeth cleaning.

It wasn’t until this meeting with the cardiologist that we realized just how weak he was. During the appointment, dad fell asleep on the examination table, something he would do during the many appointments to come.

We realized that if we moved forward with treatment for the tumor, it would create even more discomfort for our dad. Due to the nature of his dementia, he was already experiencing discomfort in his daily life. It seemed senseless to add yet another layer of suffering when recovery from the tumor wasn’t guaranteed.

We understood that it was time to meet with the hospice doctor to discuss palliative care and make dad as comfortable as we could for the rest of his life. Still, it was hard for us to absorb the reality that our father, a multiwar veteran, was going to die from a cancerous tumor on his tongue.

Dad’s tumor was diagnosed on August 27, 2013, and on September 27, 2013, he passed away in a hospice center. I’m thankful it was swift, but it happened so fast that I was thoroughly in shock, as were we all. Once we realized how much pain he was in, we were happy that he didn’t linger.

For whatever reason, my mom, siblings, and I decided we wanted one last family picture of us surrounding dad’s body. I’ve never seen 5 people look so forlorn in any photograph before or since.

Living with the loss

The coming days, weeks, and months were incredibly difficult to manage. Not only was I grieving for my dad, I was second-guessing my ability to be the family caregiver. I was also trying to figure out how to help my mom who, due to her dementia, couldn’t remember that her husband died.

I am now thankful that we took a picture with dad in his hospice bed — it turned out to be something I could share with my mom. Although many people will tell you to never remind someone with dementia about the loss of a loved one, I felt that it would be more harmful not to tell her.

My mom would spend her time roaming around the community looking for dad and grew increasingly anxious when she couldn’t find him. I wanted her to be able to grieve his loss. When I visited, I would bring pictures of dad, share a happy story about him with mom, and mention how much I missed him.

During the first month after dad’s death, mom became very combative with the other residents; before long, she was getting into physical fights with other people in the community. This was a new behavior for her, and it was unlike my mom to be physical.

I was called in to meet with the community’s director who told me we needed to find a way to help my mom manage better in the community or she would have to move out. They suggested we hire a personal care assistant (PCA) to help her manage her day. We realized that it was time to start looking into a community specifically for people who need memory care.

Helping mom adjust

We immediately hired a PCA after meeting with the community’s director. Due to her dementia, mom already had some issues with paranoia. Unfortunately, bringing a PCA in only made mom more paranoid. She felt like someone she didn’t know was constantly following her.

Mom was generally suspicious of suggestions from someone she didn’t know well. This meant that she had a hard time connecting with most of the residents and staff in her community. Without dad, she was truly alone much of the day.

I also hired an aging life care manager to help me find the best memory care community for mom. She helped me understand and recognize the key attributes of a good memory care community.

We needed a community with:

  • scheduled activities that my mom would enjoy
  • active reminders about upcoming activities or events so my mom wouldn’t miss out
  • a standardized menu so that mom didn’t have to figure out how to piece together a menu of her own
  • community cues to help mom recognize how to get to her apartment

Assisted living communities are designed to help people navigate physical limitations in order to complete daily functions and activities. They don’t offer activities designed for people with memory issues, and they aren’t staffed to deal with the types of behavior, like paranoia, that might present in someone with dementia.

Before we could finalize the details of mom’s move, she had a major setback. She had been complaining about back pain, so her doctor prescribed her Tramadol. Mom ended up on bedrest and behaved as if she were on hallucinogenic drugs.

We later found out that the medication caused this reaction because of the type of dementia that she had. Her doctor said that this wasn’t uncommon, but it wasn’t something we were prepared for. The possibility of such a reaction was never mentioned to me when she was receiving her prescription.

It took nearly 3 weeks for the drug to work its way out of her system. She spent so much time in bed recovering that she became weak and unsteady. Several months passed before she was able to walk on her own again.

Once mom was stable, we moved her into a memory care community. We moved her on January 17, 2015. We knew the transition would be difficult. Often, for people with dementia, switching residences can result in a recognizable decline. Although she adapted quite well, she had a fall that landed her in the emergency room after only a few months in the new community.

She was unable to fully recover from the fall and could no longer walk unassisted. To make matters worse, mom would never remember she wasn’t steady on her feet. She would try to get up and go whenever the notion struck her. To keep her safe, we brought a new PCA back on staff.

Mom lived in the memory care community for nearly a year. We were lucky to have found a PCA that doted on mom and that mom trusted. She would do mom’s hair and nails and made sure she was active and engaged in activities. It was nice to have someone I could contact to know how mom was doing on a daily basis.

Saying goodbye to mom

In December 2015, mom tipped over while washing her hands. She never hit the ground, but she complained of hip pain, so she was taken to the ER. When I arrived, I immediately recognized the significance of her injury.

Sometimes, when bones grow frail, a simple twist is all it takes to break a hip. While they took mom to X-ray, I found a private restroom and sobbed. I knew that elderly women who break a hip are at an increased risk of dying within a year of the incident.

When I met with the orthopedic surgeon, she confirmed that mom’s hip was broken. She told me that she couldn’t operate until I lifted mom’s Do Not Resuscitate (DNR) order. I was taken aback by the surgeon’s request.

When I asked her why, she said that they’d have to put in a breathing tube. I told her that if my mom died on the table she wouldn’t want to be brought back to a life with dementia. The surgeon repeated that to make mom comfortable, we should operate, and to do that, I needed to lift the DNR order.

I called the aging life care manager back in and a geriatric doctor to help me navigate my choices for mom. The geriatric doctor told me that mom most likely wouldn’t be strong enough to qualify for surgery. A few tests had to be run before we even needed to worry about the surgeon’s request.

The first test identified a heart and lung issue, eliminating the option for surgery. Mom’s body just wasn’t strong enough, and it was easy to see how much pain she was in.

She was alert even after four courses of morphine. She didn’t really understand what was going on. And at some point during her stay at the ER, she had a small stroke. My mom no longer recognized me, and she was unable to remember that she had children.

It had become clear that our only choice was to move mom into hospice care. Her health was fading fast, and we wanted to make her last days as comfortable as possible. We moved mom back to her community where she had 24-hour support and hospice care. I called all of my siblings and they scheduled one last trip to see mom.

Over the next week, mom mostly slept. Every day, I’d arrive with lotion and rub her feet. By the end of each visit, I would end up crying at the foot of her bed. I told her how much I would miss her, but reminded her that dad was patiently waiting for her to join him.

When I visited her on Christmas Day, her breathing was jagged. I knew she didn’t have much longer. The memory community nurse called at 5:35 p.m. to report that mom had passed away. Even though I felt it coming, I was still stunned. Thankfully, my husband and children were with me when I received the news. They were able to take me to see mom one last time and say my goodbye.

Learning to live with my decisions

If I knew how things were going to progress, I feel like I would have made many different decisions throughout my caregiving journey. It’s hard not to second-guess the decisions that I made during my time as caregiver.

A wonderful social worker told me that I should forgive myself, because I made the best decisions that I could with the information I had at the time. I’m still reminding myself of that. I often share this advice with other caregivers who feel the same remorse about their caregiving journey.

A year has passed, and I’m still learning how to adjust to life after caregiving. I was told quite often to be kind to myself during my journey. Now that my family caregiving journey is over, I believe that this is the best advice I was ever given. I hope that after reading about my experiences, you can take this to heart and find peace on your journey.

Life after caregiving

While I was caring for my parents, I started to build a part-time business focused on helping other caregivers. I wanted to help other caregivers navigate challenges like the ones I was facing — managing doctor’s appointments, getting finances in order, and maintaining a second home.

This part-time business would become MemoryBanc. For several years, I balanced work by limiting the number of clients I helped so that my parents would always be the priority. When I was grieving my mom’s passing, I realized how much I enjoyed being able to help her lead the life she wanted.

After a few months, I started to take on more clients. It felt good to be able to put my caregiving journey behind me, but also to use what I learned to make me a valuable resource for so many other families. While I still have moments of sadness, I’ve been able to focus on the great lives my parents lived instead of dwelling on the last few years we had together. I’m still adjusting to my new normal.

Complete Article HERE!

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09/5/17

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

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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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Bill 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!

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06/4/17

Is it Possible to Die of a Broken Heart?

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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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Somehow 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.

◊♦◊

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.

◊♦◊

Complete Article HERE!

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09/5/16

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

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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!

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08/28/16

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

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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!

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