Category Archives: Memory Loss and Dementia

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

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:

Adaptive Advices
Housing Options
Slow Medicine

Other Articles/Links:

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

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

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.