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

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:

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

Depression

Q: How does our community support people who are overwhelmed by emotional challenges?

Q: Am I a listening, caring presence for others when they are experiencing troubling times?

A Time of Loss and Change: depression is not a “normal part of aging” just as it is not a normal part of our development at any age. In older adulthood and at other times in our lives where we are facing loss, isolation or change, we may be at higher risk of depression. Loss of loved ones, roles, home or community ties, or physical changes can increase risk for depression. Men especially are more at risk for depression as they age, and suicide rates increase dramatically for men over 65, even more so for those with a history of depression.

Signs of depression include:

  • Sadness: grief as a natural response to loss is different from depression. Unexplained, unrelenting sadness or grief that never lets up is a sign of depression.
  • Expressions of Feelings of Loss of Self-Worth: a person may feel they are a burden, life has lost meaning, they cannot do things they were once able to do.
  • Withdrawal and Isolation: a person may avoid visits with friends, or avoid coming to Meeting.
  • Avoidance of Activities that were once loved: a person stops doing things that were once important to them.
  • Changes in Sleep Patterns: extreme fatigue, insomnia.
  • Changes in Appetite: usually weight loss, but some people may eat more to try to replace lost energy.
  • Fixation on Death, Suicidal Thoughts: consult a professional if a person expresses thoughts of suicide.
  • In older adults and others, depression may also manifest itself as hopelessness, helplessness, increased irritability, anxiety, forgetfulness, unexplained physical complaints. Symptoms such as confusion, forgetfulness, or paranoia may be similar to signs of dementia or other illness. A professional evaluation will help discern the root cause of the symptoms so that appropriate treatment can be determined.

“The remarkable discovery we can make is that love has not deserted us, and that it is available to us now in a new way.”
Margaret Torrie, 1975, PYM Faith and Practice

How can I help? A person with depression needs professional care. Friends can help by encouraging one to seek professional care and by being a caring presence.

Overwhelmed by symptoms of hopelessness and confusion, compounded by the stigma placed on mental illness, often a person who is depressed does not recognize their symptoms and cannot take action to get help. They may also feel ashamed or embarrassed. Let the person know they are accepted and supported, and learn about your local resources and refer to professionals.

  • Validate Feelings: respect and validate the person’s feelings. When a person’s feelings are validated, they feel valued. This contributes to healing and opens the doors for communication. See the Quaker Aging Resources article on Validation.
  • Walk Beside the Person: even if they say “I don’t want to,” let them know that you want to spend time together. If you are rejected, suggest another activity—visit pets, children, a garden. Walking and other exercise can help alleviate symptoms of depression. Mental health research shows that spiritual support, helping a person to find meaning and purpose, assists in recovery. Just listening goes a long way.
  • Don’t give up: continue to let the person know you care. Let go of expectations and understand it is the illness that is keeping the person from calling you back or taking you up on that potluck supper. Enlist the help of others and continue to encourage your Friend to accept professional help. Call your regional faith group office for assistance, especially if reluctance to seek care or accept medication is a concern.

Seek help immediately if thoughts of suicide are expressed or suspected.

National Suicide Prevention Lifeline 1-800-273-TALK (8255)

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.

Other Articles/Links:

Counseling For Friends in Philadelphia Yearly Meetings
Helping Older Adults with Depression
Mental Health America 1-800-969-6642

Sources/Further Reading:

Edited by Patricia McBee, Grounded in God: Care and Nurture in Friends Meetings, Philadelphia, Quaker Press of FGC, order this book from quakerbooks.org

Deborah Morris Coryell, Good Grief, 2007, Healing Arts Press, Rochester, Vermont.

Rosalynn Carter, Helping Someone with Mental Illness,1999, Three Rivers Press, New York, NY.

Brian Quinn, The Depression Sourcebook, 2000, Lowell House. Los Angeles, CA.

Care of the Caregiver

“…the Latin root of the word “comfort” means ‘with strength’ rather than ‘at ease.’”
S. Jocelyn Burnell, 1989, Quoted in PYM Faith and Practice, 2002

S. Jocelyn Burnell made this observation in writing about pain, but it applies as well in considering the challenges of caregiving. Caring for another, whether because of physical illness, emotional, behavioral or cognitive challenges, is not easy. However, it can be an opportunity for personal growth and self-discovery. Through caregiving, one may discover one’s own gifts of compassion, patience, love and perseverance. However, even for the most joyful caregiver, there can be times of frustration and stress. Spiritual communities can be a vital resource for people facing the challenge of caring for a loved one. We can all benefit from understanding the signs of caregiver stress:

  • Feeling frustrated, irritable, angry, or sad, especially unrelenting
  • Changes in sleep pattern—having trouble falling asleep or not wanting to get out of bed
  • Increased or decreased appetite
  • Loss of interest in activities, withdrawal from friends and/or family
  • Getting sick more often than usual
  • Exhaustion
  • Making unreasonable demands on yourself—feeling you are the only one who can take care of the person
  • Feeling you want to hurt yourself or the person for whom you are caring

Some of these symptoms of caregiver stress are very similar to those of depression. A person who is overwhelmed taking care of others may not recognize that he or she needs help. Others may need to be attentive and take action to support the caregiver.

Q: How do we support caregivers who may be overwhelmed by the chronic needs and concerns of family and friends?

It is natural for the person in need of care to become the focus of a community’s concern. However, families and loved ones acting as caregivers may need spiritual and practical support just as much as the person who is ill. Here are some ways you can help caregivers:

  • Take a proactive approach to reaching out to caregivers. Often people will be hesitant to ask for help but will accept support if asked.
  • Be prepared to offer specific suggestions for how you can assist.
  • Offer individual support and a listening ear.
  • Provide Clearness Committees or other opportunities for discernment to assist families in making decisions about care, housing and other concerns. Remember that caregivers may be too busy or overwhelmed to think of this: make a point to remind people of the opportunity.
  • Help the caregiver with chores, meals, childcare, transportation, or any number of practical needs. This can give the caregiver a break, or provide peaceful time for them to be with their loved one without the burden of worrying about work undone.
  • Keep information on hand about local resources or where to find out more, such as your county Agency on Aging.

Download this article in pamphlet form

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:

Depression
Grief

Other Articles/Links:

Children of Aging Parents
caring.com
Caring Today
National Care Planning Council
When Siblings Step Up article from the Wall Street Journal

Sources/Further Reading:

Cappy Capossela and Sheila Warnock, Share the Care, 2004, Fireside, New York, NY

James E. Miller, When You’re the Caregiver, 1995, Willowgreen Publishing, Fort Wayne, Indiana.

Anxiety and Change

Anxiety is a normal reaction to stress and affects all of us at one time or another: we are anxious about speaking in public, apprehensive about going to the doctor, and may worry obsessively while waiting for the results of a medical test. Some anxiety is healthy – it can keep us vigilant about things that are important for our well-being, compel us to move forward with our lives and inform us of a concern we need to address. However, anxiety that overwhelms one, making it difficult to function, may indicate an Anxiety Disorder.

Specific anxiety disorders affect 11% of people over the age of 55, but only a small percentage receive evaluation and treatment. Also, an estimated 17-21% of people over 55 have symptoms of anxiety that do not meet the criteria of a specific anxiety disorder. “Due to the lack of evidence, doctors often think that [anxiety] is rare in the elderly or that it is a normal part of aging, so they don’t diagnose or treat anxiety in their older patients, when, in fact, anxiety is quite common in the elderly and can have a serious impact on quality of life,” says researcher Eric J. Lenze, M.D.

Older adults are more likely to be facing enormous changes, loss, illness, or dementia that can cause or exacerbate anxiety. Conversely, when one is very anxious one may become forgetful or confused. Although it is usual for anxiety to increase with major life changes, anxiety that disrupts a person’s usual activities can and should be evaluated and treated.

Anxiety disorders are among the most treatable of illnesses, and include panic disorders, post traumatic stress disorder, social anxiety, and generalized anxiety disorder. Treatments vary and include medication, cognitive behavioral therapy, desensitization and relaxation techniques, yoga and exercise, and natural remedies.

“Facing the future, even with a sure faith, is not easy. I am cautious at every step forward, taking time and believing I shall be told where to go and what to do. Waiting patiently and creatively is at times unbearably difficult, but I know it must be so.”
Jennifer Morris, 1980, PYM Faith and Practice 2002

Symptoms of Generalized Anxiety Disorder:

  • Excessive, ongoing worry and tension
  • An unrealistic view of problems
  • Restlessness or a feeling of being “edgy”
  • Irritability
  • Muscle tension
  • Headaches
  • Sweating
  • Difficulty concentrating
  • Nausea or other stomach problems
  • The need to go to the bathroom frequently
  • Tiredness and being easily fatigued
  • Trouble falling or staying asleep
  • Trembling or tingling feelings in limbs
  • Being easily startled

As this list shows, the symptoms of anxiety often mimic symptoms of physical illness and vice versa. An evaluation by a doctor or mental health professional can help sort out the cause of one’s symptoms, allowing proper treatment.

How can we help? A spiritual community can provide spiritual support so that the whole person is addressed in the healing process.

  • Challenge stigma and fear of mental illness by educating oneself and others
  • Establish a climate of safety in your community for those with differences or facing major life changes.
  • Always ask. Let the person know you are there to help, and ask what they need. One would not question talking to a person about help they need related to physical illness.
  • Quaker Meetings may offer Clearness Committees for Friends or caregivers experiencing anxiety.
  • Remember that feelings are real to all of us. Regardless of how unrealistic a fear may seem, validate the person’s feelings. (See Quaker Aging Resources brochure on Validation)
  • Provide reassurance, but try not to belittle the person’s fear, and remember they may need to work in small steps.
  • Encourage but do not push a person with anxiety.
  • Refer to professionals. Encourage Friends to see their doctor and/or seek counseling.
  • Offer to walk beside the person on this journey. Even simply accompanying the person to an appointment can support and validate their care.
  • A very small group or individual visit can provide spiritual support if the person has trouble attending worship. If necessary, meet without the person to pray or hold them in the light, and let them know you are doing so.
  • Encourage physical activity, which has the capacity to alleviate anxiety. Offer to take a walk or a yoga class together.
  • Encourage professional help and provide information about your local resources.

“True silence is the rest of the mind; and is to the spirit, what sleep is to the body, nourishment and refreshment.”
William Penn, as quoted in PYM Faith and Practice, 2002

Download this article in pamphlet form

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:

Care of the Caregiver
Honoring the Individual Through Validation
Spiritual Approach to Dementia Care
Spirituality and Change
Stigma

Other Articles/Links:

Anxiety and Depression Association of America
Mental Health Ministries

Honoring the Individual Through Validation

“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

Validation therapy, developed by Naomi Feil, works from the belief that there is a reason behind the way people behave and what we communicate. When we validate, rather than judge one another, we honor the unique spirit within each person.

Each of us has a collection of experiences and emotions that inform how we respond to a situation. Naomi Feil developed techniques for using Validation Therapy to converse with people who are experiencing later stages of dementia. These principles and techniques are useful for relating to one another with compassion and empathy at any point in our lives and in a manner that is consistent with Friends’ belief that there is that of God in every person.

Principles of Validation *

  • All people are unique.
  • All people are valuable.
  • There is a reason behind behavior.
  • People must be accepted, not judged.
  • Painful feelings that are expressed and validated will
  • diminish.
  • Painful feelings that are ignored or suppressed will gain strength.
  • Empathy builds trust, reduces anxiety, and restores dignity.

Simple Ways to Help:

  • Avoid advice, testing, and correction – it may only frustrate the person and make it more difficult to communicate.
  • Focus on feelings instead of facts.
  • Reflect back to the person what they have just said to you, without judging their feelings.
  • Consider what might be behind this person feeling upset or anxious and try to respond with empathy to their feelings by imagining their reality.
  • Accept repetition. If someone has dementia, is grieving or distressed, they may not remember your prior conversation; they may need to repeat themselves to process emotions.

This scenario gives examples of some ways you can communicate with someone with dementia, using Validation techniques:

I was having lunch with my old friend Sarah. When I arrived she seemed uncertain who I was. I felt sad that she could not remember me, but I knew she couldn’t help it. I put out my hand and said “It’s Ella and I am so glad to be having lunch with you today.”

Sarah was anxious after lunch and said she needed to get home before her children were dropped off by the school bus. Our kids are all grown with children of their own, but her worry was real. “Yes, it is does seem close to that time of day. Your family knows where you are and everyone is being cared for.”

Sarah asked about her children a few more times while we were waiting for the bill, but seemed to calm down when we left. On the trip home, she focused on everything there was to see along the way. Back at her apartment, she didn’t look for the children. We looked at some old pictures, and laughed.

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

*adapted from Naomi Feil, The Validation Breakthrough: Simple Techniques for Communicating with People with Alzheimer’s -Type Dementia, 1993 http://www.vfvalidation.org

Download this article in pamphlet form

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:

Allowing Yourself to be Cared For: Autonomy, Interdependence and Interrelationship
Care of the Caregiver
Including Everyone: Faith Community Care for People with Challenges
Spiritual Approach to Dementia Care

Other Articles/Links:

Validation Training Institute

Sources/Further Reading:

Naomi Feil, The Validation Breakthrough, 2002 Health Professions Press, Inc., Baltimore, Maryland.