A pet’s death: How to cope with your grief, loneliness

By Michael Joe Murphy

[O]wn a pet? Eighty-five million American households do — at least 43 million of them with dogs, an estimated 36 million with cats — beloved friends, companions, often considered family members. Photos of pets being rescued from Hurricane Harvey are a reminder of how much we treasure them. As we cherish them no less than our closest human companions, the loss of a pet often brings intense pain. For advice on coping with that grief, and the difficult decisions facing owners upon the loss of a pet, the Orlando Sentinel Editorial Board sought out Dr. Ron Del Moro, a licensed mental-health counselor with the University of Florida’s Veterinary Hospitals.

Q: What can a pet owner expect to feel over the loss of a pet?

A: I am not sure what one may expect, as there are an infinite range of emotions that losing a loved one can produce. The key for people experiencing loss is to allow oneself to feel whatever comes up without judging it. Many people I work with feel a deep loss when their pet dies. Extreme sadness, loneliness, and guilt are some of the most common emotions I see.

Q: What can a person do about those feelings?

A: One of the best things to do is not to judge our feelings (or the feelings of someone else going through it). We all deal with loss and grief differently; there really is no right or wrong. With that said, I feel that guilt and anger, though common, are misplaced and can be unhealthy. Often these emotions are masking deeper feelings of sadness.

The key is get support wherever we can. It is healthy to feel our emotions and be able to talk it through with people we trust (including a mental-health professional).

An individual’s way of grieving will differ from the way other people grieve. One’s grieving process also will differ in intensity and duration in the losses one experiences throughout your lifetime. Following are a few of the many ways that grief can be expressed and healing enhanced:

• Open expression of emotions such as crying, conversations about loss, etc.

• Drawing, writing poetry, or other artistic expressions

• Internal processing, thinking about the loss, trying to make sense of it, often done during activities such as meditation, exercising, bike riding.

• Dedicating time to animal organizations.

• Committing to make positive changes in your own life.

• Making scrap books or photograph albums of your pet.

• Keeping a written documentation of your feelings/journaling.

Again, there are infinite healthy ways to cope with loss and grief; it is very much a unique individual process.

Q: When is the right time to euthanize a pet?

A: Again, I cannot make that call. Only a veterinarian and the owner can answer this question, hopefully together. I don’t know when the “right” time is, and I would like to think that euthanasia is an appropriate and humane step to take to end pain and suffering when there is a low likelihood that our loved one is going to feel better. I often think quality of life is a key factor in this very personal decision. It hurts to see animals suffer without hope of healing.

Q: Should an owner stay during euthanasia?

A: Again, this is an extremely personal decision; there is no right or wrong. I always tell people, try to avoid “shoulding” on yourself and others. I recommend that people to take time and think about this decision and discuss it with family and/or your veterinarian.

Q: What should owners do next? What should they tell their children?

A: Everyone handles grief differently, there is no one right way. Individuals need to ask themselves “what do I need.” This can be a difficult question to answer, and we may not be able to get what they need even if they figure it out, but we have a much better chance of getting what we need when we know what is needed. Talking to supportive people, engaging in activities that allow us to be present in the moment and staying out of our thoughts is a good place to start.

In regard to talking children, it is up to the family and their spiritual beliefs. It is an opportunity to have a conversation with them about what death is. Telling kids that their loved one is “getting put to sleep” can give children a negative association with sleep, and I recommend against it.

Q: Will pets that lose an animal as a companion grieve?

A: I am not an animal expert and really don’t know. It seems that the other pets do miss their companion and experience a loss, but I cannot say this with much validity.

Reactions of Other Pets in the Home

If you have other pets in your home, you might find that they appear to be grieving the loss of the one who died. This is not at all unusual as the loss of a human or animal family member will change the structure and dynamics of the family. Also, pets that have lived together can become just as bonded to each other as we become to them.

Therefore, many animals will experience a transitional and readjustment period as a reaction to the missing pet. If your pets are experiencing physical symptoms or behaviors that have you concerned, or if these symptoms last more than a couple of days to a week, a visit to your veterinarian is warranted to rule out illness or disease.

The following are some behaviors of surviving pets that have been reported by people:

• Searching behavior

• Increase or decrease in vocalization

• Changes in the amount of attention the pet wants

• Taking on behaviors of the pet that died even if this never occurred before, such as:

• Sleeping where the other pet slept

• Playing with toys that belonged to the pet that died

• Rubbing or rolling where the other pet rubbed or rolled

• Other unique activities the deceased pet engaged in

• Changes in appetite

• Changes in mood

• Personality changes such as quiet or shy pets becoming more outgoing and assertive, or outgoing pets becoming more quiet.

What You Can Do to Help Your Pets Through Their Grieving Process.

• Observe them closely for changes

• Do not change their basic routine or the structure of their day any more than is absolutely necessary. For example, feeding, grooming, and sleeping time should remain as close as possible to the way it was in the past. Remember, changes in your pet’s routine will only add to confusion.

• Respect your pet’s desire for “hands on” attention such as holding, cuddling and petting. Many people report wanting to get closer to remaining pets in the home but find that the pets do not always welcome more attention, especially if it is something they are not used to. Try not to push unwanted attention onto them. However, if remaining pets are seeking more close attention, then try to find the time to give it.

• Provide more opportunities for exercise and play — this will be good for both of you.

• Reward calm, relaxed or other desirable behavior.

• Try leaving a TV or radio on while you are gone.

• Understand that animals are very good at picking up on their human’s mood and some of your pet’s reactions could be a result of your stress or anxiety. Many people find it helpful to not cry or show extreme sadness in front of their pets.

Should You Get Another Animal as a Companion for Your Pet?

This is one of those questions for which you are the best person to answer. You know your pets better than anyone else and are most likely the one who knows best if another pet will make your current pet or pets feel better.

Some things you might want to consider when making this decision are:

• Is your pet very social?

• Is your pet used to having other animals around?

• Would another pet help your current pet to get more activity and exercise?

• If your current pet is now an only pet, how much time will it be spending alone if there is not another animal in the house?

• Are you and other family members ready to commit to and reinvest in another pet?

Things to Remember

• Some animals will show no signs of grief after the death of another pet in the house.

• Even for pets, grief is an individual process that will affect each one in a different way.

• Your pet’s reaction to the loss should improve as the days/weeks go by. If this does not happen or if anorexia (loss of appetite) occurs, then you should contact your veterinarian.

Q: Should a grieving pet owner get a replacement right away?

A: Again, this is a very personal decision without a right or wrong answer.

Q: Is there anything else in your experience that people frequently ask or encounter? How do you recommend they deal with it?

A: Be kind to yourself and allow the cycles of grief to run its course. It can take weeks, months, and even longer. Get support and take care of yourself best you can.

Below is an excerpt from our pet loss support page that I helped create:

Self-Care During the Grieving Process

Grief can affect every aspect of your being. Therefore, your emotional, physical, cognitive, social, and spiritual needs must be nurtured in order to work through grief and to heal.

The following are some suggestions on how you might begin the process of self-care. You may find that improving in one aspect makes you feel better in others, or that certain behaviors help in more than one area. This is because they cannot really be separated; each is somewhat dependent on the others and all are crucial in healing and maintaining your general good health.

Emotional

Emotional care involves expressing and acknowledging your pain.

• Talk with someone who understands the relationship you had with your pet and how much you are hurting

• Write down your feelings in a journal or in a letter to your loved-one

• Create a scrapbook or photograph album of your pet

• Use your artistic abilities such as drawing, painting, or sculpting to express your feelings.

Physical

Physical care is done to keep your body healthy.

Grief can deplete your energy and make you extremely susceptible to illness and disease.

• Eat healthy foods

• Exercise

• Avoid using alcohol or drugs as a means of “feeling better”

• Try to get enough sleep.

Cognitive

Cognitive functioning can be extremely impaired by grief.

Try stimulating yourself intellectually to improve your memory, concentration, and other cognitive abilities.

• Read books and other information that will help you to understand what you are going through

• Talk with others who have been through a similar experience and learn what was helpful for them

• Social contacts and establishing a support network are extremely important to help us not feel so alone.

• Find a healthy balance between the time you need alone and being with others

• Join a pet-loss support group

• Although not everyone will understand your grief, having a couple of close friends or family members who are supportive will help tremendously.

Spiritual

Spiritual care involves doing things that you enjoy, that connect you with nature, and being kind to yourself. Some people refer to this as working in your “heart zone.”

Spiritual care can, but does not have to, include your religious beliefs or your philosophy on life.

• Take a long walk

• Take a long bath or shower

• Light a candle in memory of your pet

• Get a massage, facial, pedicure, or anything that makes you feel good about yourself

• Think about your philosophy of an afterlife for animals and talk with others who believe similarly to you

• Call a friend you haven’t spoken with for a long time

• Do something kind for someone else

• Meditate

• Do something kind for other animals or for an animal cause.

Complete Article HERE!

4 Things I Learned About Grief, Loss, and Healing After My Dad’s Death

By Susie Moore

Give time, time.” —Martha Beck

 
[M]y dad died when I was 19, when he was almost 60. He was a writer like me. He was also an addict. It was expected (he had a bad heart and no plans to surrender his vices), but it was still a shock when it actually happened. Sometimes it feels like 14 years ago. Sometimes it feels like it all happened so recently—especially when he visits me in dreams.

When I reflect upon my what I’ve learned about loss, grief, and life in the years since, these are four truths I know for sure:

1. Love is stronger than death.

I still have a father. He lives within me and my sister and in our memories. When I make an English roast dinner, drive a car (he taught me how), play Scrabble or cards, read the classics, watch English television, and even sit down to write, I feel his presence. The first time I held the book I’d authored in my hands, I felt him say, “I told you so! You did it.”

When someone leaves your life, all that’s gone is his or her physical form. That notion has been tremendously comforting to me.

2. Spending real time with loved ones is important.

I visit my mum in the U.K. twice per year. Life is busy, yes. But making time for the people you love matters. Spend time with your parents (and everyone who’s important to you). And try not to spend all the time you’re with them on your phone.

Ask them questions. What did they think about the world when they were your age? What were they doing? What year were they the happiest? What are their favorite memories of you? Write it down too! You’ll revisit those stories many times in your life.

3. Just because someone looks OK doesn’t mean they are OK.

After losing her husband suddenly last year, Sheryl Sandberg said, “Don’t ask someone who’s grieving, ‘How are you?’ Ask, ‘How are you today?’”

Emotions for someone who’s grieving are a roller coaster—they can go from laughter to tears in seconds. There is no right or wrong way to grieve, and we should never judge anyone who is experiencing grief. The process is deeply personal. I don’t talk about my father unless it’s with my family or I’m speaking to someone going through a similar experience. I don’t want sympathy or questions. This is my way of handling things, and that’s OK.

4. Death can inspire you to live life to its fullest.

If I live to my dad’s age (and I hope to live much longer than that), my life is already more than halfway through. This sounds scary, but to me, it’s motivating. Death gives life meaning. When I contemplate my own imminent death one day, I feel courageous, fearless, and powerful. You’re allowed to feel this way too. The hardest lessons bring the greatest freedoms.

I think of my dad every day—especially when something funny happens. And I talk to him every time I achieve a significant milestone. I admit: I’m jealous when I see other people with their dads. And that’s OK too. I practice compassion for my own emotions, which I consider the highest form of self-care.

My grief has changed shape over the years, but it’s true what they say about time. My physical pangs of suffering are fewer now. And in moments of questioning, the most healing thing I can think to do is live a life he would be proud of. Because we’ll always be in it together.

Meaningful Planning for Final Arrangements

By Melanie Ball

[S]ome people wait to reach a certain age or receive a serious diagnosis before they start planning their final wishes.

Luckily, when we lost Dad to mesothelioma, we didn’t have much planning to do. Ever the family overseer, my father preplanned his memorial services.

He prepared for everything, including financial planning.

I am only now realizing the gracefulness of Dad’s consideration of our family during our time of grief. We were all a mess when he passed, and his prior decisions relieved some of the stress at a time when his guidance was most needed.

Exploring final arrangements ahead of time can relieve families of unnecessary anxiety during a time of emotional need. Preplanning also presents an opportunity for a person to make their own choices regarding their final wishes.

Dad found peace of mind by guiding our family through the difficult process of saying goodbye.

Developing a Plan Early Reduces Stress Later

Most folks don’t know much about the funeral process until they face the loss of a loved one.

Lack of planning often leads distraught family members toward emotion-based final arrangement decisions. The shock of loss can cloud one’s judgment.

Exploring aspects of final services in advance is a helpful step toward developing a solid plan.

For many, the most alarming part of final arrangement planning is the cost. Financial concerns may guide much of the decision-making process.

The National Funeral Directors Association is a reputable organization of more than 10,000 funeral homes in 49 states. In 2014, the NFDA estimated the median cost of a traditional funeral with burial at more than $8000.

Such a price tag may surprise bereaved families.

An expensive funeral doesn’t necessarily equate to a meaningful service.

A thoughtful service is a reflection of the memorialized person. Preplanning ahead of time allows families to create a memorial that truly embodies the essence of a loved one’s life.

Remembering them with honor and dignity is the goal of most funeral planning.

Be Aware of Different Types of Services

Most families consider spiritual beliefs, family and cultural traditions, and of course, the costs when making their final decisions.

Knowing what types of memorial services are offered is a good starting point for most people. It is also important to understand legal and ethical elements that may influence final decision making.

Each state governs funeral practices differently, but the Federal Trade Commission (FTC) provides national regulations that guide funeral providers.

There are many options available, so it helps to have a clear, universal definition of services. The FTC has an important role in clarifying the options available for customers across the nation.

According to the FTC, there are several basic types of services provided in most states, including:

  • Traditional Full-Service: Traditional funeral services are the most expensive type of memorial. This type of funeral includes a viewing or “wake,” a formal funeral service, hearse transportation and a graveside memorial. Often services take place on two separate days.)
  • Direct Burial: Direct burials exclude a formal viewing, hearse transportation and certain services provided the funeral home. There are fewer necessary goods which brings the cost down significantly. This type of service usually shortens the time between passing and burial.)
  • Direct Cremation: Services that involve direct cremation generally omit the formal viewing. After processing, the remains are placed in a container called an urn which is usually present at a memorial service where families join together. Cremation is much more affordable than traditional services.

Planning final arrangements can be a bit overwhelming. Understanding the basic services available can ease the decision-making process.

Protections Provided by the Funeral Rule

Federal guidelines are designed to protect customers shopping for funeral products and services. The FTC’s Funeral Rule offers peace of mind to many shoppers.

While each state passes their own laws regarding legal funeral practices, the state laws coincide with these federal guidelines.

Among the many protections in the Funeral Rule:

  • Customers can shop with funeral homes and only pay for the goods and services they want to buy, rather than choosing from lavish packages that lump products together. Families can save money by only buying the goods they need.
  • When seeking a price quote, shoppers don’t have to show up at the establishment in person. Service providers must give customers a price quote over the phone, if they inquire. This is especially helpful for families planning under time constraints.
  • People who meet with funeral home professionals to discuss plans are provided with a General Price List. This document clearly states the prices of all goods and services available from the provider. Seeing the listed price can help people make cost-conscious choices.
  • Sometimes the cemetery or crematory has separate requirements which families should know before signing a funeral arrangement contract. The provider must inform the customer with a list of those requirements in advance of purchase.
  • With some services such as cremation, caskets are not necessary. The customer may choose to use an alternate or less elaborate container. Other shoppers may choose to order a casket from a different provider. Funeral homes must allow people to order them from other companies, rather than exclusively selling their own products.

Making final arrangements is a difficult process under the best of circumstances.

During times of emotional despair, discernment escapes most of us. I’m not sure my mother was capable of planning Dad’s services in the days immediately following his death.

It was a tough time for our family, and I learned from my father’s thoughtfulness. Taking care of my family in the future is just as important as taking care of them now.

Making arrangements for our final goodbyes is a way I can comfort them when they confront life without me.

Complete Article HERE!

Confronting Death and Dharma at Brooklyn’s Green-Wood Cemetery

Can we shift our perspective on the reality of loss?

By Lauren Krauze

[W]hen I arrived at the main gate of Brooklyn’s Green-Wood Cemetery, I was greeted by two talkative green birds hopping and flapping about in the grass. I was surprised; the birds seemed bright and exotic compared with the pigeons, jays, and sparrows I normally see. I later learned that these playful birds are monk parakeets—a very fitting name given that I was attending an event called Death and Dharma, a lecture and meditation series co-presented by the Brooklyn Zen Center and Green-Wood Cemetery.

Green-Wood’s high, rolling hills and shady lawns offered a cool and quiet respite from the heat and hum of downtown Brooklyn. A group of about 40 people gathered on the grass near the cemetery’s Modern Chapel, a serene space for meditating and contemplating death and dying.

“Death is a fundamental question. It’s sometimes called ‘the big question,’” said Rev. Francisco (Paco) Genkoji Lugoviña, the founder and guiding teacher at the Hudson River Peacemaker Center. “There are lots of questions, actually, and no real answers. However, at age 78, I try to live each day with as much involvement and obedience to what emerges and go with it.”

Joining Lugoviña was Rev. Daiken Nelson, the founder and guiding teacher at the Pamsula Zen Center in Harlem. Nelson and Lugoviña are both teachers and priests in the White Plum Lineage of Taizan Maezumi Roshi and the Zen Peacemaker Order. As a pair that often teaches together, they were invited to share their insights with the Brooklyn Zen Center community.

“In the West, and particularly in the U.S., people don’t deal with death until they have to,” Nelson said. “They don’t think about it until someone they know passes away. I think it’s important to at least think about it before that happens and try to realize that it’s everyone’s fate.”

While the discussion was rich with teachings, stories, and koans from the Zen tradition, Nelson and Lugoviña also created space for people to briefly talk about their own relationships with death and dying. At the start of the discussion, they asked individuals to share one or two words that reflected their thoughts on the topic. While many people expressed a cautious wonder and curiosity about the topic, others shared words like “fear,” “uncertainty,” and “dark.”

Lugoviña didn’t seem very surprised. As a Zen teacher, he said that he often ventures into this very territory, especially in his conversations with people struggling with anxiety, depression, and suicidal thoughts. He also relayed a poignant story about his grandson, who passed away at age 23 after a methadone overdose. That experience taught him to reevaluate his intellectual understanding about death and shift toward a deep experience of gratitude.

“A friend of mine once told me she that she used to count her life by the number of summers she had left,” he said. “I think that’s a very poetic way to look at what we value in our lives and cherish what’s important to us.”

In a short work titled “Vulnerability,” acclaimed poet David Whyte writes, “The only choice we have as we mature is how we inhabit our vulnerability, how we become larger and more courageous and more compassionate through our intimacy with disappearance.” Nelson echoed this by imparting a teaching about impermanence and what can come of embracing the transient nature of experience.

“What I’ve been working with in my own practice is accepting whatever is arising,” he said. “We can learn to accept our inevitable passing, the passing of others, and the passing of this moment. Realizing something is just how it is—that it’s ‘just this,’ without it having to be any different—can give rise to freedom.”

At Green-Wood, humble gravestones and elaborate mausoleums dot the landscape, crowding some of the hills and valleys. The root of the word monument is the Latin word monere, which means “to remind.” These markers remind the living of the deceased’s name, life, and family, but for Nelson, the monuments reflect a more complicated reality that attempts to honor both the teachings of impermanence and the reality of human connection and loss.

“Once we are born, we exist, and then we spend our lives going to great lengths to express that in the world,” he said. “We spend a great deal of time and energy thinking about this self, or the ideas we have about awareness, consciousness, our connections with others, acceptance, and impermanence. Then people die, and afterwards, we want to live in the memory of them, whether it’s through their accomplishments, their stories, or things we build to honor them.”

He then introduced a teaching from Bankei, a 9th century Chinese Zen master. While recovering from a serious illness as a young man, Bankei realized his existence was nothing more than a moment-by-moment experience. He framed his realization about life as “the unborn.”

“He taught us that nothing is ever born and nothing ever dies,” Nelson said. “Life is a moment-by-moment arising and falling away. So, he said, don’t get born. Don’t fall into identification as me or you, as young or old, as a woman or a man. Even our habits are not part of our original being. Everything is unborn. Why not abide in that?”

He then looked around and chuckled.

“What better place to talk about the unborn than a cemetery?”

Many of us laughed, too. Later, during meditation, I tried to focus on the sounds and sensations I was experiencing: the gentle breeze rolling off the back of my neck, the cool grass under my feet, the soft breathing of my friends around me. At one point several birds cried out, asserting their place in the world before settling in for the evening.

I began to realize that it is possible to sit in a cemetery—a place so deeply associated with death and loss—and feel very much alive. I also understood this as something I can practice on a regular basis; when I find myself sinking into mental, physical, or emotional places of decay, I can work to more directly experience my own vitality as I honor the complicated thoughts of fear and doubt swirling within me.

By the end of meditation, the sun had dipped below the Upper New York Bay. In the lingering warmth of the afternoon, I found myself wondering how many more summers I have left. In that same moment, however, I was able to shift my perspective and realize: I am here, right now, breath-filled and conscious and capable of so much. As my friends and I walked out of the cemetery, I took comfort in their singsong voices echoing in the open twilight sky. I also noticed a pigeon’s glowing red feet, the cemetery security guard’s half-smile, and the first fireflies brave enough to shine their lanterns and welcome the night.

Complete Article HERE!

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

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

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

By

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Bill Harris put an arm around her shoulders reassuringly.

“Absolutely,” he said. “Of course.”

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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Dying a good death: How to prepare yourself and others for the end of your life

Like it or not, death is the inevitable conclusion of all our lives. Although it’s a normal, natural process, it isn’t an easy or straightforward thing to deal with.

[W]hile we can’t stop death, there are things we can do.

Talk about death

If you find it too difficult to talk to family and friends about death, you could always try talking to complete strangers over coffee and cake.

At a Death Café, people who’ve never met before come together to discuss the end of life.

The idea began with an art exhibition held by Swiss sociologist Bernard Crettaz in 2004, but became a global phenomenon when Jon Underwood began hosting events in London in 2011.

Dr Naomi Richards from the University of Glasgow is researching the phenomenon and has found that participants are able to sympathetically engage with each other’s thoughts and experiences on death and dying.

But Death Cafés are not the only option.

Some people hire a ‘death doula’ to assist them through this part of life. The assistance they provide varies greatly, from talking about death through to assisting them at their bedside.

Make decisions about treatment

Dr Euan Paterson, a retired GP and palliative care specialist, says improved medical technology has created an issue for doctors treating dying patients.

“It’s much harder not to do something than to try and do it. We’ve got generations of doctors, me included, who have been weaned on the idea that we can fix everything.”

“The desire to constantly offer things, constantly treat, constantly improve, constantly resurrect is very hard to let get go.”

But extension of life may come at cost of quality of life.

Linda Tierney was diagnosed with terminal cancer and told she wasn’t likely to live more than a year.

She decided not to have further treatment as she felt the side effects would be too great.

Another area where patients can make decisions ahead of time is about what to do in the event of our heart stopping.

In Scotland, a system called eKIS is used by hospitals, GPs and ambulance staff. Through this, we can record if we do not wish to be resuscitated.

In Cradle to Grave, Dr Dan Beckett explained the crucial difference between a cardiac arrest and natural dying.

While a cardiac arrest might be reversible through cardiopulmonary resuscitation, better known as CPR, in the case of natural death the heart stops because the body itself is dying.

Plan your funeral

Linda has played an active role in organising her own funeral, with the help of her son and a Marie Curie nurse.

One of the first things I asked was who’s going to do my hair? Who’s going to do my make up? And the girl at the funeral home: she thought this was amazing.

“She said ‘I am. I’ve been doing this job for 17 years and I can assure you you’re going to look the best you’ve ever looked!’

“Everything is done. Music done. Ministers been told what songs are being played. What readings I want. Everything has been sorted.”

Sort out your will

Hilary Peppiette is a solicitor who is also training to become a death doula.

She says making a will is one of the best ways to make things easier for your family after your death.

“Primarily in your will you appoint executor to deal with your estate after your death, to make sure your wishes are carried out.”

“You decide who is going to benefit from your estate after your death. It is very important to put it down in writing to make sure that the people you want to be provided for are provided for.”

“It doesn’t always happen automatically the way that people sometimes think it sometimes it will. Even if you feel you have nothing to leave, you don’t have very much in the way of assets, it’s very important to write down what you want to happen.”

Complete Article HERE!