Author Archives: Meg Reber

Discernment for Long Term Care

Q: Can I allow myself to be carried, supported, upheld by others and the love of God?
PYM Faith and Practice, 2002

For individuals facing long-term health challenges and their loved ones, choosing residential health care can be one of the life’s most difficult decisions. The loss and emotions felt when one faces letting go of independence and a long time home may be complicated by the stigma associated with nursing homes or other care environments. Many people are not sure where to begin in the search for long term care.

Practicing discernment based in our values can assist us in making decisions that honor our individual priorities. We can employ Quaker clearness process to assist in discerning what is best for the individual and those involved in care. Knowing more about choices available can also help offset stigma. A useful first step is to assess both the individual and the available local options.

“Nothing about me without me.”

Memorize this phrase used by people with disabilities to remind us that if we are talking about someone, we should be talking with that person. Throughout any assessments or decisions, it is important the person who is at the center of the discussion is included and listened to!

Assessment of the Whole Person: See the person, not just the illness or challenge. Look for their capacity, likes, wants and values in addition to the immediate needs or concerns.

Assessment of Daily Needs: A professional assessment can help determine how well a person can function without assistance. The ability to perform tasks such as preparing food, getting to the bathroom, bathing, using a telephone, and any specific needs are evaluated. Your Yearly Meeting office can help identify professionals who can conduct such an assessment.

Assessment of Resources: Consider viable alternatives. A self care assessment may reveal, for example, that the person is not able to cook for him or herself. . However, is there a family member close by who can deliver meals that can be easily heated? How much help can local organizations such as the Meeting or Meals on Wheels offer? Is the person’s safety at risk—will they forget that they have turned on the stove? Are there adaptations that can be made—technology available to offset any risk? Finally, assess whether combined services and adaptations meet the person’s needs:

Will he or she be safe?
How well can he or she maintain reasonable physical well being?
How will the person stay socially, spiritually and emotionally connected?
What does the person most value and how can those values be supported?

A Clearness Committee can offer loving guidance during a time of uncertainty and crisis. This supports a meaningful decision making process that is grounded in spirit and faithful to the values of the individual and loved ones caring for him or her.

Your Yearly Meeting can help identify local resources for aging and care at home. If long-term care is determined to be the most suitable option, know that there are many good facilities to choose from and that many people, after an initial adjustment, find themselves more active and socially connected than they were at home.

“Friends do not take readily to being cared for…But many of us will find ourselves in need of full care in our old age. This will not be easy…But there are compensations and opportunities…And in the experience of living in a Home with others, a deep sense of sharing the darkness and the light can lead to a sense of community not known before…”
Margaret McNeill, 1990

Simple things to consider in choosing a long term care facility:

The basics: Is the home close enough to allow frequent visits by loved ones? Is it financially viable? Does the facility provide the appropriate level of care to meet the person’s needs, and if one’s condition changes, will they still be able to provide appropriate level of care? If not, what are the options – would one have to move to another facility or is it possible to stay there and receive supplemental services to meet health care needs? Once a few facilities are identified that meet the basic criteria, schedule visits to those facilities and consider:

What is important to the person who will live there—to be in a town or a city, to be close to nature or children?
What types of educational, creative, spiritual, fitness or other activities are provided and are they consistent with the values and interests of the person who will be living there? How much are residents involved in decision making and planning? What adaptations are made so that frail residents can pass time meaningfully?
Will the person be able to get to beloved activities outside the residence, such as Friend’s Meeting or other places of worship, family visits? How might this be supported?
Empowering self-care and mobility to the degree that is appropriate supports emotional and physical well being. Are residents encouraged to walk, as they are able, wheelchairs used only as needed, not for convenience or speed? Are adaptations made, such as opportunities for rest?
Do residents seem engaged? Do their rooms have personal touches? What do the interactions feel like between residents and staff? Does the environment feel home like?
Direct Caregivers are likely the ones who will spend the most time with residents. How is staff treated? Do they seem respected? Does it look like care workers have time to spend with each resident or do they seem harried and rushed? Is direct care staff actively involved in care planning? Are their interactions kind and friendly?
Overall, is there an atmosphere of kindness and warmth toward all?

“There is that near you which will guide you. O wait for it and be sure you keep to it.”
Isaac Penington, 1678, Quoted in PYM Faith and Practice, 2002

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LINKS TO MORE INFORMATION: Click on the blue text below to be directed to outside websites that offer additional information on this topic. Articles from this site will open in the same browser window/tab. Articles from other websites will open in a new window; when you are done, simply click out of that window and you will be back on this site.

More articles on this website:

Adaptive Advices
Housing Options
Slow Medicine

Other Articles/Links:

Friends Services for the Aging
Financing Long Term Care
Friends Life Care at Home

Assistance for Friends in New York Yearly Meeting

Some monthly, regional, or Yearly Meetings have funds available to assist with health care, housing, or home care needs of aging Friends and/or others facing challenges. You may want to check with your own Meeting to find out if such funds are available. Even if financial support is not available, New York Yearly Meeting ARCH program volunteers may also be able to help you find county or other resources.

New York Yearly Meeting ARCH Program: In New York Yearly Meeting, Aging Resources Consultation and Help (ARCH) offers older adults and persons with disabilities the information they need to enhance quality of life. This is achieved through full use of Monthly Meeting and community resources. While this is not a financial granting program, ARCH volunteers can help you find needed resources. Education and insight is nurtured through workshops, printed material, website information, ARCH Visitors, and advice from trained consultants. One-on-one listening is available for individuals and families as they deal with the last third of life.

An ARCH Visitor is a Friend in NYYM who has taken the ARCH Visitor training program because s/he has a call to visit seniors and adults with disabilities within one hour from home. Visitors provide a listening ear and, hopefully, a connection to appropriate resources to improve the life of the person visited. Visitors maintain a close relationship to their Monthly and Regional Meetings, and stay in touch with the ARCH Coordinators. Please see our contact information in “Contact Us” to get help or to volunteer, or follow the link provided below.

Friends Foundation for the Aging: A resource for Friends programs, and one of the funders of this website, is Friends Foundation for the Aging. This is the new name for McCutchen Friends Home, which previously operated a residential and skilled nursing facility in North Plainfield, NJ, on properties given by the McCutchen family. In early 2007, in response to multiple external factors, the McCutchen board decided to close the Home, sell the properties, and pursue other ways to fulfill its mission of supporting the elderly.

The foundation supports programs that advance Quaker values in senior care, that provide new or expanded options to support seniors in their own homes, and that promote career development in the field of long term care. It anticipates that the major portion of its grants will be relatively large, multi-year grants to new, collaborative ventures. It also expects to provide support to new initiatives in support of seniors in New York Yearly Meeting. Its geographic focus, at least initially, will be New York, New Jersey and Eastern Pennsylvania.

LINKS TO MORE INFORMATION: Click on the blue text below to be directed to outside websites that offer additional information on this topic. The websites will open in a new window, when you are done, simply click out of that window and you will be back on this site.

NYYM ARCH Program

Assistance for Friends in Philadelphia Yearly Meeting

Some monthly, regional, or Yearly Meetings have funds available to assist with health care, housing, or home care needs of aging Friends and/or others facing challenges. You may want to check with your own Meeting to find out if such funds are available. Philadelphia Yearly Meeting has several grants available to PYM Friends and Meeting attenders and at times others who have a close relationship with Friends within the Yearly Meeting area.

Aging Granting Group Funds for qualified individuals or organizations providing care to elderly PYM members, for direct assistance and projects to benefit elderly PYM Friends (see fund listings for details). Applications for most funds should come from the Clerk of Overseers or clerk of appropriate Monthly Meeting committee on behalf of elderly Friends in need of financial assistance. Click here to be directed to PYM website information on Aging Granting Group Funds . Aging Granting Group Funds Include:

The George Abbot Fund: formerly named the Oakwood Manor Fund, was created through the sale of the Pocono Manor. The Pocono Manor property was originally deeded by George Abbott in 1912 to James Moon and others “in trust, to hold and maintain the same for and on behalf of Philadelphia Yearly Meeting of the Religious Society of Friends… so that the same may be used and occupied for or by said Religious Society of Friends, or by meetings subordinate thereto, or members thereof, groups, classes or individuals, at the discretion of the said trustees….”This fund is used for direct aid and comfort of individual elderly PYM Friends.
Charles S. and Sarah von L Albertson Fund: established in 1990 by the will of Margaret A. Lawson “to enable or assist elderly persons, preference being given to members of the Religious Society of Friends, to continue to live in their own homes, by providing not only for expenses, including without limit domestic help, nursing care, structural repairs to and maintenance of their homes and other items and expense contributing to their security, well-being and comfort.” This grant assists elderly persons, with preference for residents of the PYM area, to continue to live in their own homes through grants and loans for domestic help, nursing care, home repairs and maintenance, and any other expenses contributing to their well-being.
Richard Cadbury Fund: established in 1966 by the will of Richard Cadbury, a Friend who brought to the attention of the reunited PYM a need for a Committee on Aging, now the Aging Concerns Group. Cadbury found the committee’s first staff person and bought office furniture from his own funds. He gave the committee wide latitude in the use of his memorial fund “for services and assistance to elderly members of PYM” including grants to individuals and institutions, excluding building purposes or the committee’s operating budget.
E. Harris Michener Fund: established in 1955 by will of E. Harris Michener, who left equal amounts to Philadelphia Yearly Meeting and to Haddonfield Quarterly Meeting “to be used and disbursed… for the sole purpose of assisting and adding to the comfort and care and maintenance of elderly Friends, or such Friends as the respective Board of Trustees shall determine to be in need of some financial assistance, for their proper maintenance, health and comfort, it being my sincere desire that the respective Boards of Trustees shall make proper investigation to determine who such elderly Friends may be in need of some assistance, without such elderly Friends finding it necessary or being required to make application for aid and assistance, which may be supplied by reason of this provision in my last Will and Testament.”
The Greenleaf Fund: provides grants and loans to elderly Quakers, and those in sympathy with Quakers, who are of modest means and in need of assistance to meet their housing needs or ongoing medical, maintenance, and living costs. Applicants must be 62 years of age or older. The fund does not make grants to organizations. Awards are made as grants or no-interest loans. Applications are considered according to the following priorities:

Residents of The Greenleaf’s boarding home
Members of Monthly Meetings in Haddonfield Quarterly Meeting
Members of another Monthly Meeting of Philadelphia Yearly Meeting
4Those who are in sympathy with Friends (i.e., relatives or affiliates of a Quaker organization), and live in the geographic area defined by Haddonfield Quarterly Meeting
Those who are in sympathy with Friends and live in the PYM area

PYM website information about the Greenleaf Fund
Resources for Friends in Maryland, Washington D.C. area and New Jersey

Sexuality in Mid and Late Life

“In our personal lives, Friends seek to ackowledge and nurture sexuality as a gift from God for celebrating human love with joy and intimacy…Learning to incorporate sexuality in our lives responsibly, joyfully, and with integrity should be a lifelong process beginning in childhood.”
PYM Faith and Practice, 2002.

Sexuality in Mid and Late Life:
Excerpts from Older, Wiser, Sexually Smarter
By Peggy Brick

The sexual scripts most of us learned as children are painfully inadequate for our lives as older adults. These scripts, instructing each of us how to think, feel, and act as male or female persons, commonly focus on the reproductive function of sex, define sex as penetrative intercourse only, stereotype gender roles, portray sex as for the young, discount gay, lesbian and bisexual persons, and generally discourage positive sexual attitudes. Such scripts need to be challenged.

In addition, many life changes require people to develop new expectations for their sexual lives. Loss of a partner through death or divorce, a variety of illnesses and disabilities, newrelationships, even the attitudes of one’s own children may require a new view of oneself as a sexual person.

Other barriers to older adults seeking sexual health and happiness are the current commercialization and the “medicalization” of sex, both of which promote quick (and expensive!) “solutions” to often complex interpersonal problems. An overwhelming array of “cures” tempt us: plastic surgery makeovers promise to correct every imperfection from wrinkles to “vulval unsightliness”; pills and a wild variety of penis enhancements guarantee larger, stronger, more powerful erections; an ever-more-exciting plethora of sex toys assure bigger, better orgasms; widely advertised videos assure us of “better sex for a lifetime.” Sexuality education aims to help people evaluate all the messages they receive from the media, advertisers, and pharmaceutical companies and then discover for themselves what can really enhance their sexual lives.

The following principles from Older Wiser, Sexually Smarter offer guidance for a healthy approach to sexuality and sexuality education in older adulthood :

Principles About Sexuality in Mid and Late Life

Sexuality is a positive, life-affirming force. A positive approach to sexuality means acknowledging the pleasures, not just the dangers of sex.
Older adults deserve respect. This respect includes an appreciation for individual sexual histories and the current stage of a person’s sexual journey.
Older adults are not all alike. Older adults vary in their comfort with sexual language, in the discussion of sexual topics, and in participating in learning activities related to sexuality.
Forget the cliche about “old dogs and new tricks”. Older adults are capable of writing new sexual scripts that can invigorate their sexual journeys. Sex is more than sexual intercourse, and there are many ways to be sexual without penetrative sex. Avoid the word “sex” whenever possible because of its vague meaning —when talking about intercourse, use the word “intercourse.”
Older adults learn from each other. Older adults have many “lessons” to share and learn from each other. Discussing ideas with peers helps people take responsibility for their own learning.
Older adults deserve accurate and explicit information, and also additional resources for discovery. Most people in this culture have lived with the message that sexuality is mysterious, secret, and shameful. Having access to the facts and a chance to talk openly helps people overcome those negative messages.
Gay, lesbian, bisexual, and transgender individuals must be acknowledged, respected, and included in discussions. Participants in your audience will likely mirror society, and therefore have a variety of sexual orientations and gender identities. Acknowledging all sexual orientations and identities can help make sure all participants feel included.
Flexible gender role behavior is fundamental to personal and sexual health. Strict adherence to traditional gender roles and stereotypes limits individuals’ potential as human beings.
Make no assumptions! Avoid making assumptions about the sexual behaviors or sexual orientations of participants in your sessions. Some may be currently involved in sexual activities, others may not. Some may be married or in relationships, others may not.

About Older, Wiser, Sexually Smarter:

In 2003 Jan Lunquist and I created a teaching manual, New Expectations: Sexuality Education for Mid and Later Life, providing educators with 25 field-tested lessons for older adults. It aimed to help people “celebrate sexuality from birth until death.” Six years later, informed by many workshops, trainings, new resources and research reports, we have developed this completely revised (and renamed) second edition. It is greatly enhanced by the work of our two new authors, Bill Tavemer and Allyson Sandak, and by creative lessons from a number of new educators.

Our lessons encourage participants to identify the issues that confront them, re-think their old scripts, and consider how to create new and positive ways of being sexual as they age. Older, Wiser, Sexually Smarter updates and expands all the lessons, includes three useful timelines, and adds lessons that address additional concerns including: intimacy and communication issues; masturbation; body image; spirituality; cyber sex, and how to talk about sex with your Physician.

Older, Wiser, Sexually Smarter (Copyright 2009) is available through:
The Center for Family Life Education
Planned Parenthood of Greater Northern New Jersey, Inc.
196 Speedwell Avenue
Morristown, NJ 07960
(973) 539-9580
www.ppgnnj.org
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Widener College Sexuality and Aging website

Friends Meetings in New York and Philadelphia Yearly Meetings may call your Yearly Meeting office if you are interested in a workshop on Sexuality and Aging. Contact us here

Stigma

“Our life is love, peace and tenderness; and bearing with one another, and forgiving one another, and not laying accusations against one another; but praying for one another, and helping one another up with a tender hand.”
Isaac Penington, 1667, Quoted in PYM Faith and Practice, 2002

When I was a child, it was clear that my parents, aunts, and uncles related to Uncle Douglas differently than the way they were with the rest of the adults in the family. He lived above my aunt in a quiet apartment with the blinds drawn, took his meals at the same Howard Johnson’s every day, and had no apparent hobbies except collecting religious dolls. Uncle Douglas it seemed had come from nowhere—there were no tidbits of his childhood or stories of his youthful foibles. He was rarely included in joking banter, and conversations lasted only as long as it would take to answer, “How are you?” Uncle Douglas was tolerated, his physical needs were met, but no one seemed to know how to support or express their love for him.

When I became old enough to notice, and brave enough to ask, I was told that Uncle Douglas had suffered a “nervous breakdown” and had not been the same since. Later I learned that he had been a successful radio disc jockey and dated a red-haired actor, but “something happened” and he was sent to an institution where he received some form of treatment. Eventually the relatives opened up, “You’d never believe what he was like back then!” He was dashing—a skilled dancer, dedicated connoisseur of 20’s and 30’s swing music.

No could name what happened to Uncle Douglas as anything other than a “nervous breakdown.” My mother felt that being in the institution did him in; my aunt blamed laziness and said in any case that he just stopped trying. These were hushed back room conversations, not to leave the family, and no one ever discussed Uncle Douglas with Uncle Douglas himself.

Today, we have words that identify various mental illnesses and a bit more willingness to talk about emotional or behavioral health the same way we might discuss diabetes or stroke. We may be willing to accept that mental illness is hereditary or has roots in brain makeup or body chemistry. Nevertheless, have we truly lost our fear and moved from tolerance, to engaged support for those with behavioral or emotional health challenges?

Consider this, from an online community newspaper:
“The…Museum will host a special lecture, ‘The Treatment of Mental Illness: A Historical Perspective’ to ‘explore how attitudes about mental illness and care have changed in the past 200 years,’ according to a statement released by the…board of trustees. It will be held early next year.
The announcement was made in the wake of objections made by some mental health advocates to the ‘Asylum of Terror,’ a haunted house staged as part of the museum’s annual fundraising event. Material promoting the Haunted Mill promised, ‘Dementia, paranoia, violent sociopathic behaviors… these are but a few of the afflictions that torment the wretched souls’ of the asylum.”

Kudos to the museum for hosting the lecture in response to the public outcry, and to those who spoke up, but one must wonder, have attitudes changes that much in 200 years if such an event theme were not questioned to begin with? In talking with Friends about their fears surrounding aging, I have often heard it said, “I can accept anything, as long as I have my mind.” With such pervasive stigma associated with behavioral health differences, no wonder we fear that more than anything else does!

Q: “Is our Meeting supportive and loving toward persons among us who may be struggling with mental illness?”
What can we do as a spiritual community to create a more loving and accepting environment, so that people can feel safe in seeking support when they are facing mental health issues? What is our role in advocating for those with emotional or behavioral challenges?

Educate. Stigma is best reduced by knowledge. Seek learning opportunities for your community to provide truthful information about mental illness. See additional articles in our Learning Center for factual information that may challenge common assumptions, as well as the list of further resources.
Check your own feelings. Try to understand one’s own assumptions and fears. Exploring how your life experiences and what you have been taught might be affecting your feelings can help you overcome your own resistance and be a better support to others in need.
When you feel your attitude is genuinely open, make it known. Be willing to talk. If you have experiences of your own to share, speak openly if you can.
Let others know you are concerned. Speak gently, with honesty and integrity. Offer facts and unconditional support, and listen, do not lecture.
Know what professional resources are available in your area and be prepared to provide that information. Offer transportation and/or additional support as needed.
Your spiritual community probably provides meals for people after the birth of a child, a death in the family, illness or surgery. Have you thought about the same for someone who is struggling with behavioral or emotional health? It may be hard, for example, for someone who is depressed to express gratitude or feel joy, but these gestures from the spiritual community remind us that we are cared for, and loved.

“And thou, faithful babe, though thou stutter and stammer forth a few words in the dread of the Lord, they are accepted.”
William Dewsbury, 1660, Quoted in PYM Faith and Practice, 2002

Download this article in pamphlet form

More articles on this website:

Anxiety and Change
Care of the Caregiver
Depression
Spiritual Approach to Dementia Care

Sources/Further Reading:

Edited by Patricia McBee, Grounded in God, Care and Nurture in Friends Meeting, Philadelphia, Quaker Press of FGC, 2002

Clinton Reed, “Red Mill Museum in Clinton responds to critics of its ‘Haunted Mill,’ plans special program”, Hunterdon County Democrat, November 13, 2009, read article online

Quaker Aging Resources

Providing Spirit-Centered Information