A new approach to older people’s end of life care

— Living and dying well

Remodelling palliative and end of life care requires different ways of working, different partnerships and a sharing of power

By Caroline Nicholson

Global ageing means that death is now most commonly an event of older age. For most older people, the nature of living and dying in later life will be frailty and multimorbidity (MM – the co-existence of two or more long-term conditions).

Frailty is age-related and describes the gradual loss of inbuilt physiological reserves that leads to sudden, potentially fatal health deteriorations following seemingly small events, such as a minor infection. Frailty and MM increase the risk of dying in older age; those with severe frailty are five times more likely to die within a year than non-frail elders. However, the fluctuating progression of frailty, often over years, can make it hard to proactively identify when an older person is in their last year of life which is often a marker used as a referral to palliative and end of life services. Access to palliative care for all people with life-limiting conditions is recognised as important at the highest policy level. However, the experience of older people nearing the end of their lives is often poor. Many older people risk over-treatment to prolong life, and under-treatment from palliative care; actively addressing quality of life and person-centred needs and care goals, when a cure is not possible, is too often poorly handled.

Providing end of life care for older people – moving beyond prognosis

Prognosis, estimating when someone is likely to die, can help to facilitate future care planning conversations and support patient-centred care goals and conversations with loved ones. However, the assumption that time to death should, and can, trigger end of life care is problematic. Evidence suggests accurate prognosis is difficult: overestimation is common and temporal estimates are mostly inaccurate. Prognostication is particularly difficult in older adults with frailty, where there are no standardised and evaluated models and markers to support end-of-life identification. Time-based approaches for referral to end-of-life/palliative care services are increasingly questionable. Rather, end-of-life care provision for older people should be focussed on a holistic formal assessment of need and tailored care. This is the focus of the University of Surrey’s Living and Dying Well research programme.

“Living And Dying Well” research

Our work is focused on the duality of older people living and dying well over a life long-lived. Currently, older people with frailty too often fall between services either focused on living independently or imminently dying. Our work has evidenced the centrality of any end-of-life care responses to take account of the strengths and capabilities of older people, including their social connections, as well as any potential and actual vulnerability. All too often, care interventions can leave an older person feeling trailer, experiencing a sense of being “done to” rather than “cared about”. We focus on older people living at “home”, the place of preference for most older people. Core Activities include:

Evidencing specific needs and tailored care for older people at end of life

The HEE/NIHR funded PALLUP study evidences the specific end-of-life needs of older people with frailty and current service responses. This evidence will be translated with key stakeholders to develop a service framework and resources to support tailored care. A scoping review of published literature evidencing the perspectives of older people with MM supported a consensus exercise to gain agreement on the core needs of older people with frailty at end of life.

Data from facilitated virtual interviews with older people and their families and a two-round online survey with health, social and voluntary services and family carers was analysed. Needs were grouped under physical, social, practical, spiritual, and physical domains. Most consensus across all stakeholders were predominantly in the social and practical domains. The Top 5 identified needs were, 1) Trust in care providers – to be recognised as a person 2) Not to feel lonely 3) Opportunities to discuss current and future care needs 4) Support with medication – administration and optimisation 5) Services and interventions to support mobility. Key to meeting needs were the role of family carers who were often unsupported and under great strain.

Image: © University of Surrey
Image: © University of Surrey

The PALLUP film trailer can be accessed here and the full film by completing the film registration form here.

Reconfiguring and resourcing care services including “family”

The NIHR Palliative and End of Life Care Research Partnership is working in 3
areas in England to grow a research partnership of care providers across sectors that will improve the coordination of end-of-life care for community-dwelling older people living with advancing frailty. Social, voluntary and health care, and representatives of older people and family carers are involved. Resourcing services includes developing tailored tools to support older people and their family to articulate their needs and for these to drive care provision. The Pro-frail study will develop a PROM/PREM specifically addressing the needs of older people with frailty in the community.

Our work is also developing resources to support the increasingly essential role that family or, perhaps more accurately, unpaid carers, play in the care of older living in the last phase of life. The dual expert study is supporting family decision-making at points of uncertainty.

In conclusion: end of life opportunities and challenges

It is a source for great celebration that most people will live and die in older age. In England, new legislation denotes that end of life care is no longer a sub-speciality, but a universally required service. There is a moral and clinical imperative for palliative care services to contribute to the support of people with frailty and MM as they near the end of their lives. Remodelling of palliative and end of life care services requires different ways of working, different partnerships and a sharing of power to enable a focus more on need rather than diagnosis and prognosis.

Complete Article HERE!

Thinking of Becoming a Guardian?

What you should consider before you agree to be responsible for an incapacitated loved one

By Patty Blevins

What you should consider before you agree to be responsible for an incapacitated loved one

If you haven’t had any experience with guardianship for adults with dementia, it’s likely you don’t understand just how complex it is. You are not alone. Many family members of the estimated 6.5 million dementia patients in the U.S. struggle to understand if it is an option for their loved one.

Many more people will face that decision because the number of people with dementia will grow to 14 million by 2060, according to Centers for Disease Control estimates.

An adult son making food for his mother with dementia. Next Avenue
In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs.

The simplest definition of guardianship is the position of being responsible for someone else. State courts appoint a guardian to make decisions for another person if the court finds the person to be incapacitated or unable to make safe, reasonable decisions for themselves, according to National Academy of Elder Law Attorneys (NAELA).

The simplest definition of guardianship is the position of being responsible for someone else.

Guardianship is serious business. People placed under guardianship, who are called wards, may lose their independence in making decisions about their finances, legal issues and health care. According to the U.S. Department of Justice, full guardianship can control whether wards can vote, who they may marry, where they live and if they can make end-of-life decisions for themselves.

An article in the American Journal of Alzheimer’s Disease and Other Dementias explains that the two tasks that are regularly evaluated in determining capacity are an individual’s ability to manage personal finances and take medications as prescribed.

Choosing and Monitoring Guardians

In determining whether to place someone under a guardianship and curb their legal rights, the court may call on a geriatrician or psychiatrist to assess the person’s functional behavior, cognitive function, disabling conditions and ability to meet their essential needs. A geriatrician is a specialty doctor who treats people over 65 with a focus on diseases like dementia that primarily affect this age group.

The National Academy of Elder Law Attorneys says guardianships offer safeguards. Guardians, for example, must periodically update the court on the ward’s finances and health status. Even then, courts have the authority to initiate unscheduled reviews of guardians’ decisions about their wards’ finances, property and health care.

Guardianship, “when properly used,” is a beneficial method to protect an incapacitated person for whom no other means are available to assist with informed decision making, the organization says.

That describes the original intent of guardianship, but it assumes the guardian is honest and accountable. Unfortunately, this is not always the case. Ample examples of abuse are documented by researchers and prosecutors.

An article in the Journal of the American Geriatrics Society first published in April 2022, sought to make a quantitative evaluation of guardianship in the United States but the authors found little consistent standards and data collection regarding the impact on patient care and the quality of life of people subject to guardianship.

Impediments to Oversight

The inconsistencies included fundamental matters, including the following:

  • The scope of the guardian’s duties.
  • Minimum standards for guardians. As of 2020, there were two states that had yet to require a background check.
  • Determination of incapacity. In the past, this decision often defaulted to a physician based solely on a psychiatric or medical diagnosis.
  • Regular independent reviews of the ongoing necessity of guardianship.
  • Educational requirements for guardians. Guardians are often required to serve in many roles that they may have minimal or no training. The National Guardianship Association (NGF) partnered with the Center for Guardianship Certification (CGC) to standardized educational content and offer certification.
  • Other drawbacks of guardianship included:
    • Once guardianship is assigned, there is greater tendency for the person to become lost to follow up. People who have been labeled as incompetent or incapacitated have limited ability to advocate for themselves, contact an attorney or access funds for court proceedings.
    • There is a greater tendency to assign full guardianship instead of less restrictive alternatives.

    Recent Guardianship Law

    In 2017, the Uniform Law Commission, a non-profit association that provides states with model legislation to clarify and standardize laws across jurisdictions , released The Uniform Guardianship Conservatorship and Other Protective Arrangements Act to encourage the “trend toward greater independence for persons under guardianship.”

    “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones.”

    The act addresses many of the previous inconsistences and proposes solutions going forward. So far, seven states have enacted the model guardianship statute in full and many more have adopted parts of it, according to the National Center on Elder Abuse.

    Alternatives to Guardianship

    There are multiple alternatives to guardianship but Americans need to start talking to each other. “Over 40% of the American population has never discussed their wishes for end-of-life care with loved ones,” according to the article in the Journal of the American Geriatrics Society. These measures should begin at the first sign of memory loss or preferably when getting ready for retirement to delay or prevent guardianship.

    • Tell your family your wishes and write them down in an advanced directive (living will and health care power of attorney).
    • Create a value history. A value history is based on values and beliefs and it provides a person’s future care choices.
    • Evaluate limited (partial) guardianship as an alternative to full guardianship. In this case, guardianship is granted only over the areas for which the person lacks the capacity for rational decision making (finances).
    • Designate a durable power of attorney and list two or three backup candidates for this important position if the first choice is not available. This agent could be responsible for financial, legal and personal matters.
    • Investigate care management services. Care managers are usually nurses or social workers that are trained to identify and provide for a client’s medical, psychosocial and financial needs.
    • Find a payee. Many organizations offer money management services which serve as a payee for vulnerable clients.
    • Enlist the help of your primary care doctor. You may have to teach them about guardianship and the role you would like them to play, but they could become your greatest asset.

    Guardianship as the Only Answer

    Appointing a family member or friend as your guardian often is the ideal solution. But sometimes a court-appointed guardian is the only answer. My own experience is an example.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety.

    My father was diagnosed with multi-infarct dementia in 2016. The disease transfigured him from an intelligent, robust, fun-loving father into, let’s say, something different. My mother already had passed away, and my three siblings and I agreed that his guardian should be the same sibling who was listed as his Health Care Power of Attorney.

    That legal document lets you state your medical wishes and appoint another person to make sure those wishes are followed if you are incompetent or no longer able to make your own health care decisions.

    Release, Then Relief

    We all arrived at the courthouse and my father surprised all of us by saying he didn’t want my sister, who had his Health Care Power of Attorney, to be his guardian. Another court hearing was scheduled, at which he agreed to have the court appoint a lawyer to be his guardian.

    I felt a sense of relief at the appointment of a guardian outside the family. It relieved us of the possibility of having to tell him that he had to stay in a nursing home for his own safety. We would not be the ones sifting through his financial records to explain his debt and explain that his mortgage was being foreclosed on. We could preserve a few remnants of a familial relationship and focus on being supportive.

    The guardianship duties performed by the appointed attorney were far from flawless. But, overall, they served as the best answer for the situation at the time.

Complete Article HERE!

Anticipatory grief: How to cope if you’re struggling to watch a loved one age

— Here, experts break down anticipatory grief, an under-talked-about and all-too-common experience of watching loved ones get older.

By

It can creep up on you slowly or happen in a single moment, but anticipatory grief finds its way into the lives of most adult children or caregivers at some point. And the confusing part: Most people don’t know it when it hits them. Unlike grief after loss, which gets its fair share of air time, anticipatory grief is relatively unheard of, making it difficult for folks to recognize—  and process — when they’re experiencing it.

“Anticipatory grief is a process that occurs prior to an expected loss,” explains Alicea Ardito, a licensed clinical social worker in private practice with Loudoun Adult Counseling and Northern Virginia Older Adult Counseling. “Often, anticipatory grief is associated with the loss of a loved one to death, but the definition has expanded to include many other types of losses as well.” (Think: Cognitive decline.)

Whether you’re experiencing it now or want to be prepared, here’s what experts want you to know about anticipatory grief. 

What is anticipatory grief?

A viral tweet about anticipatory grief sparked a recent conversation, but the concept isn’t new — or rare. “Anticipatory grief is a very common experience for caregivers and/or adult children,” says Iris Waichler, a licensed clinical social worker in Chicago and author of “Role Reversal: How to Take Care of Yourself and Your Aging Parents.” “It references watching the physical, cognitive, behavioral and emotional changes you witness in a loved one. In a sense, you lose them twice. Once you have seen these changes over time, and the second time is at the moment of death.”

What triggers it?

While a concrete moment, such as a diagnosis or obvious cognitive or behavioral change, can set off feelings of anticipatory grief, there isn’t always one particular event that prompts it.

“Anticipatory grief can be triggered by many things,” explains Ardito. “It may be the realization that a loved one is nearing the end of their life, witnessing the process of a physical or cognitive decline or observing the progression of a life-limiting illness.”

This moment or phase then can then take you to a place where you begin to imagine life without them, Waichler notes. “It sometimes becomes an unconscious way to prepare for their death.”

What does it look like?

“Anticipatory grief involves complicated and complex feelings similar to those feelings associated with grief after a loss,” says Ardito. While each person will experience it differently, many will have some, or all, of the following feelings, according to Ardito and Waichler:

  • Depression.
  • Anxiety.
  • Anger.
  • Sadness.
  • Disbelief.
  • Denial.
  • Dread.
  • Fear.
  • Shock.
  • Guilt.
  • Helplessness.
  • Hopelessness.
  • Numbness.
  • Dissociation.
  • Confusion. 

“There also may be other emotions involved, such as gratitude or acceptance,” notes Ardito.

“While there may be empathy for the parent as they decline in health, there may be residual feelings, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings.”
— ALICEA ARDITO, A LICENSED CLINICAL SOCIAL WORKER

For Carly Nguyen, a mom of two who runs the blog Little Voice, Big Matter, anticipatory grief presented in the form of wanting to make sure she provided closure for her father before he passed. “When I accepted that there was nothing else that could be done for my father, who was dying of cancer, I felt this great sense of urgency to let him know that we would all be OK,” she explains. “I wanted to be sure I eased any burdens he might be feeling and reassure him that he had done a fine job as a parent and a husband. I felt like I needed him to leave this world with that peace of mind.”

For adult children who have a contentious relationship with their parents, anticipatory grief can be even trickier. “It is not uncommon to feel conflicted about the relationship,” notes Ardito. “While there may be empathy and compassion for the parent as they decline in health, there may be residual feelings about the relationship, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings. A person does not have to choose just one way to feel.”

Contending and actively dealing with anticipatory grief is a personal process, but here are a few ways to approach these unique and often confusing feelings, according to Ardito and Waichler:

Talk it out.

According to Waichler, regardless of whom you speak to, talking about your feelings regarding the impending loss is key. “If appropriate, and the person who is dying shares a willingness to discuss their feelings about their impending death, it can create an intimacy and environment to help both parties begin to cope,” she says, adding: “Many people feel regret for not saying all they wanted to a loved one that is dying.”

If a conversation with the aging or ill person isn’t on the table, Waichler recommends finding “another outlet to discuss tumultuous feelings.” She offers the suggestions of talking to a “therapist, trusted friend or family member, an online or in-person support group or a spiritual or faith-based leader.”

The main take-away: Don’t self-isolate and be alone. Says Waichler: “People tend to do this when depressed and it only makes healing more challenging.”

Get inquisitive.

Ardito notes that when a realization occurs that there may not be much time left, it’s a good time to inquire about their life (even if you already know). “It can be helpful to ask questions about family history or express interest in hearing a parent retell favorite stories,” she says.

This also was a recommendation when the topic of anticipatory grief recently came up on Twitter:

Get intentional with your time.

It sounds cliché, but it’s true: Quality is more important than quantity. “It can be very helpful to focus on the quality of time spent rather than the limited quantity of time left,” says Ardito. “Try to become fully present, even in difficult moments.”

In order to make the most of your time with a loved one, no matter how much is left, consider formulating a loose plan or general ideas. “Spend time thinking about how you want to spend your remaining time together,” Waichler suggests. “What can you do to help make this time more meaningful and bring quality and purpose to both of your lives?”

“Think along the lines of creating beautiful moments and memories together,” Waichler continues. “It may be a walk in a beautiful park, spending time in a garden, looking at photos of beloved family and friends and reminiscing or sharing favorite movies or music together.” 

Set boundaries, if need be.

“Anticipatory grief can jump-start long-delayed discussions about past unresolved conflicts due to the nature of the circumstances created by impending death,” notes Waichler — but this isn’t the case for everyone, and there’s no guarantee that conversations or interactions will end on a high note.

“If your relationship with the person dying is conflictual or strained and you see no room for healing, identify another person who can step in to be the primary caregiver, if you’re serving in that role,” Waichler says. “You may need to set limits on the frequency and nature of your contacts if you see them ending in conflict. Identify tasks that can be helpful to the person, but that won’t raise conflict. Examples may be helping with meals, helping with laundry or chores or helping to coordinate a caregiving team.”

“Some people experience anger or irritability towards the person who is dying. It is important to recognize and identify the source of these feelings.”
— IRIS WAICHLER, A LICENSED CLINICAL SOCIAL WORKER

Accept your feelings — no matter what.

One of the most important things you can do during such a fraught time is to “acknowledge and accept your feelings, whatever they are, without self-criticism or judgment,” according to Waichler, who notes that “journaling can be a good outlet to process your feelings.”

“Some people experience anger or irritability towards the person who is dying,” notes Waichler. “This may be because you are angry they are leaving you or because of the physical and emotional demands placed on you if you’re caregiving. It is important to recognize and identify the source of these feelings.”

Take care of yourself.

While your aging parent or loved one may be your number one priority, it’s important to “engage in self-care activities during this time,” says Waichler.

“Make time for yourself to get enough sleep, eat healthy meals and exercise,” she says. “Additionally, try mindfulness activities, such as yoga, meditating or praying to gain inner strength and calm. The stronger you are physically and emotionally, the more you can engage with a loved one in meaningful ways.”

Complete Article HERE!

Black Christian patients are less likely to receive their preferred end-of-life care.

— Researchers hope change that. 

by

Researchers from the University of Alabama at Birmingham published a paper in the Journal of Racial and Ethnic Health Disparities demonstrating the importance of respecting the deeply held beliefs of African American Christians to help provide equitable, goal-concordant end-of-life care to these patients.

There are two schools of thought among clinicians at end of life: aggressive care, which focuses on treating the illness or condition, and supportive care, which focuses on pain and symptom management.

In this publication, researchers demonstrated how the term aggressive care — used loosely by clinicians to describe care that can negatively impact quality of life for patients with serious illness — is often used to inappropriately label the preferences of African American patients.

“Our motivation through this article was to bring in not only the perspectives of African American Christians, but also to share the biblical and historical backdrop that can be instrumental in shaping their serious illness and end-of-life wishes,” said Shena Gazaway, Ph.D., assistant professor in the UAB School of Nursing and lead author of the study. “In collaboration with our wonderful medical colleagues, we wanted to acknowledge the origins of aggression and discuss how the labeling of care as aggressive with patients and their families can negatively impact care conversations.”

For patients with serious illness such as advanced cancer, dementia and terminal illnesses, the term aggressive care is used to describe courses of treatment that could potentially cause increased physical distress and psychological stress and a decreased likelihood of experiencing a “good death.” The Institute of Medicine defines a good death as “one that is free from avoidable death and suffering for patients, families and caregivers in general accordance with the patients’ and families’ wishes.”

“The data is clear — a larger proportion of African American families reported that their loved one did not receive care that is in accord with what they requested in the final days of their life,” said Ronit Elk, Ph.D., associate director for the UAB Center for Palliative and Supportive Care, and professor in the UAB Division of Geriatrics, Gerontology and Palliative Care and co-author. “We hope this article provides a careful explanation of why these values are so important to the African American Christian community and will strike a chord in many clinicians about the importance of respecting these values and not dismissing the beliefs that these patients and their families about hope and the miracles of God.”

In this article, researchers discuss how many Black Christian adults share a belief in miracles that shapes their end-of-life care decisions. The article states that this belief in miracles combined with an overall distrust in the health care system — due to a history of medical experimentation and centuries of health care disparities — have led many African Americans to depend on their belief in God’s healing power to perform miracles and heal family members who are seriously ill.

The UAB Center for Palliative and Supportive Care offers the African American Communities Speak program to clinicians. This skills-based training incorporates videos created by the African American community to train clinicians on the community’s cultural values, lived experiences and recommendations for care. Self-reflection and active learning techniques provide participants the foundation needed for changed behavior and improved communication with patients and caregivers.

This trust in God, belief in miracles and distrust of clinicians may lead to a seriously ill African American Christian patient to request life-sustaining medical interventions even when recommendations call for supportive care. When facing terminal illness, this hope in miracles often influences the patient’s medical decisions and fuels a desire for life-sustaining interventions. The paper states that these decisions are also rooted in a belief that God ultimately decides the outcome of life, not the health care system. 

Researchers say the key to goal-concordant care is for clinicians to allow these patients to process clinical information through their preferred spiritual lens and to allow them time to have critical conversations with those in their network.

“We are hopeful that clinicians will read this article and take away the importance of religious and cultural belief systems in this particular patient population,” said Moneka Thompson, staff chaplain in the Department of Pastoral Care and co-author. “Specifically, we want everyone to understand how the values and beliefs of this particular population may impact their end-of-life preferences and decision-making. This article is the combined effort of five very different women from quite different backgrounds.  Our collective goal was to create a think-piece towards movement of health care for this population in a meaningful and more equitable direction. At the end of the day, we want to support health care equity as much as possible.”

Thompson says that there are a few steps clinicians can take to help ensure they are providing goal-concordant care to their patients.

“First, we encourage clinicians to be aware of their own biases towards this patient population that may fuel incongruent care,” Thompson said. “Second, we hope that clinicians will utilize communication practices that encourage cultural sensitivity, humility and curiosity. Finally, we want clinicians to be fully present to the variety of religious and cultural beliefs that this population will present without feeling the need to obtain this value system for themselves or compromise their own.”

Complete Article HERE!

A new vision for death and dying

— The Lancet Commission on the Value of Death

The story of dying in the 21st century is a story of paradox. Covid-19 has meant people have died the ultimate medicalised deaths, often alone in hospitals with little communication with their families. But in other settings, including in some lower income countries, many people remain undertreated, dying of preventable conditions and without access to basic pain relief. The unbalanced and contradictory picture of death and dying is the basis for the Lancet Commission on the Value of Death. Drawing on multidisciplinary perspectives from around the globe, the Commissioners argue that death and life are bound together: without death there would be no life. The Commission proposes a new vision for death and dying, with greater community involvement alongside health and social care services, and increased bereavement support.

The anxieties of growing old when you’re LGBTQ

Who would you call to bring you chicken soup? For many LGBTQ seniors who are alone, that’s no easy question.

A person holds an umbrella in the rainbow flag colors in the annual Gay Pride Parade, part of the Durban Pride Festival, on June 29, 2019, in Durban, South Africa.

By Steven Petrow

Who would bring you chicken soup if you were sick? For most people of a certain age, that’s easy — a spouse or an adult child would step up.

For many LGBTQ people, however, it’s not a simple question at all.

“Many [would] have to think really hard about this,” said Imani Woody, an academic and community advocate who retired from AARP to start an organization serving LGBTQ seniors. She said chicken soup is a stand-in for having a social support system, which many of us need.

“Build your village right now,” Woody said.

A few years ago, I would have said that my then-husband would be my primary caregiver if I became ill or disabled. I’d have done the same for him. Now I’m 65 and divorced, and this issue — who can I call on? — is top of mind for me.

It’s also a serious concern for many LGBTQ people I know, whether single or partnered. Take one friend of mine, for example, who is 60 and a single gay man. He took care of his dying father last year (as I’d done four years earlier with my parents). During his dad’s lengthy illness, we talked about two questions that terrify us (and I don’t use that word lightly): “Who will take care of us when we need help?” “Where will we go when we can no longer take care of ourselves?”

Of course, aging is an equal opportunity challenge for straight and queer people alike. But in interviews with more than four dozen LGBTQ people, singled and partnered, I heard repeatedly about the anxieties faced by queer elders.

SAGE/Advocacy & Services for LGBT Elders, the National Resource Center on LGBTQ+ Aging, and Healthypeople.gov document the health challenges LGBTQ people face. We’re twice as likely as our straight counterparts to be single and live alone, which means more likely to be isolated and lonely. We’re four times less likely to have children. We’re more likely to face poverty and homelessness, and to have poor physical and mental health. Many of us report delaying or avoiding necessary medical care because we face discrimination or mistreatment by health-care providers. If you’re queer and trans or a person of color, these disparities are heightened further. (There are about 3 million LGBTQ people 50 and older.)

“It’s a very serious challenge for many LGBTQ older people,” said Michael Adams, chief executive of SAGE. “The harsh reality is that there just aren’t as many opportunities for older LGBTQ folks when it comes to creating, building and maintaining social connections. … We’re lacking the personal connections that often come with traditional family structures.”

In part, that’s because LGBTQ people have often found themselves rejected by family, friends and community in their younger years because of their sexual orientation or gender identity. To boot, we could not legally marry until 2015, when the Supreme Court ruled in favor of marriage equality. But even married queer folks can end up alone after a divorce or death, which often brings different challenges than those faced by straight people facing the same life-changing events.

An 80-year-old lesbian put it to me this way: For straight people, “If you were to go into a nursing home, you would not have to worry that people taking care of you did not approve of your orientation, or that the facility would not take you because they were a ‘religious’ community. These are real issues for the queer community.”

Another friend tells me he has no plans for the future except a guest room and a second bathroom. And another said he hopes by the time he needs care, there will be an LGBTQ senior community in his city. “Otherwise, I have nothing,” he said.

A former colleague of mine, a lesbian, told me she worries about the cost of senior living: “I dread it all. I won’t have any dough then, so it’s really up to fate.”

Senior living communities, which provide support for the aging, can be less than welcoming to those who are LGBTQ. Staff, some of whom have traditional views on sexuality, gender identity and marriage, also pose challenges to LGBTQ elders since many facilities lack the training and policies to discourage discrimination, which can lead to harassment, Adams said.

Patrick Mizelle, who lived in Georgia with his husband, told Kaiser Health News several years ago that he worried about how “churchy” or faith-based their local options seemed, and feared they would not be accepted as a couple. “Have I come this far only to go back in the closet and pretend we are brothers?” he asked.

Rather than take that risk, they moved across the country to a queer-friendly senior living complex in Portland, Ore. They are among the lucky ones in that they could afford both the move and the cost of this domestic situation.

How do you find a welcoming LGBTQ senior living arrangement? SAGE publishes a comprehensive list of long-term care facilities (organized by state and city, along with level of care) that it has found to be welcoming.

“We also have resources about the kinds of questions that a consumer can ask to figure out if a provider is paying attention to the steps that need to be taken to become more welcoming to LGBTQ older adults,” Adams said.

SAGE also offers training to staff members at facilities that provide elder care, and has partnered with the Human Rights Campaign, the national LGBTQ lobbying and advocacy organization, in launching the Long-Term Care Equality Index, which sets out best practices to help make these facilities welcoming to the LGBTQ community. More than 75 facilities have made pledges to abide by these best practices. AARP also provides a list of affordable LGBTQ-welcoming senior housing.

What else can LGBTQ people do to find connection, to find a tribe? Many suggest the importance of developing intergenerational friendships early on in life, even as early as your 30s and 40s. Elders can impart wisdom and experience to younger LGBTQ people, who can provide help in return; as decades pass, the young ones become the elders.

Recently, the Modern Elder Academy, which refers to itself as a “midlife wisdom school,” and the founders of Death Over Dinner, launched a program called “Generations Over Dinner” expressly to connect people of all ages.

The Harvard Study of Adult Development, which began tracking more than 238 men (regardless of sexual orientation) in 1938 and continues to this day, has reported consistently that relationships are the critical ingredient in well-being, particularly as we age.

Put simply, the more connected we are, the more likely we are to be healthy and happy. To paraphrase Imani Woody: Start building those bridges.

Complete Article HERE!

‘A Last Act of Intimate Kindness’

I had barely seen my brother in decades, but when time was short, he let me in.

By Michelle Friedman

The message I had dreaded for years appeared on my phone: “Looking to find the sister of my patient, Jay Friedman.”

My ensuing phone conversation with the doctor brought ominous news. My 65-year-old brother, Jay, had advanced pancreatic cancer. He and I grew up together in Divine Corners, N.Y., a hamlet in the Catskills, raised by secular Holocaust survivor parents who stumbled into raising chickens. Their histories, coupled with the isolation and poverty of the farm, rendered my father brutal, especially to his only son.

I am the only family member with whom Jay maintained contact for the last three decades. Over that time, we communicated exclusively through email and cards I sent to a post office box. Despite working a quarter century in I.T. for the local school system, my brother did not own a cellphone. His doctor found my number via Google.

Jay was admitted to a fancy Seattle hospital where I called him via the landline next to his bed. His voice sounded weak, plaintive.

“Jay, I’ll come,” I said. “Let me be with you.”

“I don’t know,” he said. “My house is a mess.”

“I can stay in a hotel.”

“I’ll let you know.”

I panicked. I knew the prognosis was dire, but my brother’s lonely life cast an even darker shadow.

The hospital discharged Jay with a bag hanging from his chest to drain bile from his tumor-blocked liver. A few days later the doctor called again. Jay wanted my help.

I caught a flight to Seattle, picked up a rental car and drove around Puget Sound to a town in Kitsap County. Before entering Jay’s house, I muttered an ad hoc prayer for strength. Following the sounds of his weak voice through the maze of papers, boxes and computer parts, I found my brother lying on the couch. The disease had consumed him, leaving his body whittled, skeletal. Only Jay’s voice sounded familiar, a gravelly baritone.

“Thank you for coming,” he said. “I’m sorry I was snappy over the phone.”

The blanket wrapping my brother was full of holes. A brown crust covered his kitchen floor and counters. Jay drank tea with lemon in the one glass he possessed. Not owning a kettle, he boiled water in an old pot.

I brewed tea and baked a piece of chicken. After a few sips of liquid and child-size bites of food, Jay felt full. He slowly climbed the stairs to the single bed in his bedroom. The sheets hadn’t been changed in months. All I found in the closet was a cotton duvet cover that I recognized from the farm where we grew up. The faint smell of the detergent and crisp lines from our mother’s iron told me Jay had never used it.

Retreating to a Best Western hotel two miles away gave me guilty relief. It was no palace, but it was clean and orderly.

In the morning, the doctor outlined my brother’s stark medical options. Surgery was out. Jay could pursue radiation or chemotherapy, but neither was likely to yield much in terms of quantity or quality of life.

Jay made his choice in seconds — no aggressive medical intervention. The focus shifted to palliative care at home.

He didn’t have much time, weeks. How was I to start a conversation with him about his death? I knew he took pride in his money management and had saved a lot (though I had no idea then how surprisingly much), so that’s where I started.

“Jay, have you thought about what you want to do with your money?”

“Yes, I’ve thought about this a lot. I want to give it to Planned Parenthood.”

“All of it?”

“Yes.”

His calm answer startled and pleased me. Throughout our decades of sparse contact, Jay stayed vague when it came to his personal opinions.

“Jay, that’s amazing! How did you come to this decision?”

“There are too many people in the world, and I believe that people should have autonomy over their own bodies.”

I sat in silence thinking about my brother’s autonomy, the little boy overwhelmed by our rageful father, the awkward teenager who wanted to join the Navy to get away but lacked nerve. My practical mind kicked in. “Jay, do you know a lawyer?”

Once again, he surprised me. “Yeah. One of the teachers I know went to law school at night. He’s a good guy.”

Jay had no contact information for the lawyer, but I found him through the school. He answered my text within minutes and got to work preparing the necessary papers.

By the next day, Jay could no longer crawl up and down the stairs and spent most of his time in his bedroom. We moved the mattress to the floor in case he rolled off during the night. I pleaded with hospice to fast-track Jay onto their service, and soon a nurse arrived and taught me how to dose the medication: morphine for pain, Haldol for nausea and Lorazepam for anxiety. Each floated in a medicine-dropper-topped bottle so that liquid relief could be applied to the inside of the patient’s cheek.

Jay’s condition deteriorated quickly, and I no longer retreated to the Best Western. My first night in Jay’s house, I slept downstairs on the sofa. The next night, I worried that I wouldn’t hear his whimpers, so I moved to the floor next to his mattress. My younger brother’s vulnerability pierced me; he was the innocent little boy on the farm who trusted me. I cried, silently.

When he no longer ate or drank, I repurposed a medicine dropper to drip orange juice and seltzer onto his parched lips.

The lawyer met privately with Jay and later told me of his firm wish to be cremated.

A clutch grabbed my heart. Jewish law, which I follow, prohibits cremation. “Can I at least get Jay’s ashes so that I can bury them according to our faith?”

“Yes. I think that will be OK.”

“We haven’t talked about this, but I’m wondering if you are part of a religious tradition?”

“I am. The Church of Jesus Christ of Latter-day Saints.”

His answer bolstered me, given what I was about to request.

“Can I ask you one more favor?”

“Sure.”

“When the time comes, I want to do a Jewish ritual washing for Jay. It’s called a tahara. It means purification. I’ll need help; it’s too hard to do alone.”

“Of course. Call me when you need me.”

The days passed in a kind of waking dream. Jay talked on and off, disclosing struggles of all kinds. He liked hearing stories about Divine Corners, how we played in the snow and explored the brook behind the coops. I emptied his drainage bag and changed his adult diapers.

“This is disgusting,” he said.

“I’m fine,” I said. “I’m here for you. There’s nothing else I want to do.”

As our mother did when we had fevers as children, I gave Jay a sponge bath and changed his worn pajamas to a clean set.

Jay quietly slipped away. He told me that his dream was to buy a house on a lake with a few acres of land.

“That’s such a nice idea, Jay,” I said. “I love you.”

“I love you too.”

And then I made a plea I knew people have uttered for millenniums. “Send me a sign, Jay. Please send me a sign from the other side.”

Early Thursday morning I woke up inches from my brother to find him gone. No labored breathing, no death rattle. His skin had cooled, his limbs stiffened.

When the sky was fully lit, I called his friend, and we performed the tahara. We removed Jay’s pajamas, removed the drain and bag, all the while using a clean sheet to keep his frame covered and dignified. I repurposed the battered teapot to pour water over his body, starting with his head and moving to his feet. We toweled him dry, dressed him in long underwear and wrapped him in the duvet cover from our childhood farm. The work felt tender, holy, a last act of intimate kindness.

The mortuary people came and removed Jay’s body. At 6 o’clock I boarded the van for the airport. Only one other person got on, a white-haired woman in a sweater set. I saw that she bid a sorrowful farewell to the man seeing her off. She sat a few rows behind me. Drizzle and traffic caused delays, but our elfin driver navigated the trip and asked us which terminals we needed.

“American,” she said, turning mournfully in my direction. “It’s a sad trip. My brother is dying of brain cancer in Florida.”

“United,” I said, and to her: “I just left after taking care of my brother, who died this morning. I hope you get there in time.”

We reached across the aisle and held hands. Jay had made good on his sign.

Complete Article HERE!