Category Archives: Memory Loss and Dementia

Advance Directives

“…living close to physical death (our own and that of others), we come to recognize death as a natural and often welcome event. Yet another movement of growth into the fullness of the knowledge of God.”
Margaret McNeill, 1990, PYM Faith and Practice, 2002

If you are 18 and over and wish to have a say about what may happen to you if you become unable to speak for yourself, you need Advance Directives. Advance Directives include a Health Care Proxy, Living Will, Power of Attorney, and a will. Towards the end of life, one needs a Do Not Resuscitate (DNR), and some states may have other forms as well.

A Health Care Proxy allows a person to choose whom they want to make their decisions for medical care when they are not able or no longer want to. It also provides space to say exactly what those decisions would be. Your state may have one online. It allows you to make your choices and remain in control. Parents will not necessarily be deferred to by doctors for an adult child (18 and over), especially if the parents are divorced and not in agreement.

Living Wills also are tools to express your medical decisions, but they do not have the power of law behind them that a Health Care Proxy does. They do give additional opportunity to be clear about your wishes. They can also be found online.

A Power of Attorney (POA), or a Springing or Durable POA covers non-medical decisions that may need to be made when you are no longer able, such things as paying the bills, choosing a long term care facility, doing the taxes. Be sure that your form is the most current one accepted by your state. A springing POA is one that only goes into effect when you no longer can take care of business yourself; a durable POA remains in effect when you are no longer able. Some states websites provide them online, or they may be purchased at a business supply store.
Wills are not magic: doing one will not make you die, despite what many Friends have only half jokingly told ARCH program facilitators. Children will need someone to care for them, if the parents are no longer able and you want to be the person choosing, rather than having the decision made by the court, or by a family argument. Wills can clearly make your wishes known about what to do with the stuff, the cash, and who or how that is decided, and thus prevents those ugly family fights that result in siblings becoming estranged. If you do not have a will the state may decide how much of your estate goes to your children and how much to your spouse. The three previous items do not need a lawyer, a will does.

DNR and other state forms are available to complete towards the end of life. Your state’s Do Not Resuscitate form is online. It prevents you from having your heart or lungs restarted when you no longer want that to happen. In many states, even if you have a DNR, when someone calls the paramedics they will, by law, resuscitate you. If this is not what you want, ask the people who are likely to be with you just to hold your hand. Your state may have other forms you can fill out with your doctor telling what treatment you do and do not want at the end of life, and the doctor signs and dates each section. Having this conversation with your MD can help your decisions and informs your doctor, since these directives can be enforced by law.

A File of Life is a plastic bag with a red sticker on it kept on the refrigerator door, and a matching red sticker goes on the front door. Inside the bag is a copy of your proxy statement and a form with all your medical information. Paramedics will recognize the sticker on the door and will grab the bag and take it with you to the hospital.

Once you have filled out all of these, give a copy of each, except your will, to your family, your health care proxy and all your doctors and discuss what exactly your decisions are. Your lawyer keeps the original of your will. Do not keep any of these in the safety deposit box, which will be sealed at your death, preventing your loved ones from being able to get them for several weeks.

Consider having a conversation in your faith community about planning for very serious illness or the end of life. Exploring these issues in a supportive environment can help people address their values and emotions while making informed decisions. Both NYYM and PYM offer free Advance Directives workshops to Meetings in which we provide such forms, discuss the issues and do a whole lot more. Friends find this workshop to be actually enjoyable as well as informative, and not gloomy. To schedule a workshop for your Meeting contact your Yearly Meeting office.

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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:

End of Life Decision Making and Quaker Testimonies
Green Burial and Other Options

Other Articles/Links:

Minute from Northern Yearly Meeting about preparing for death
Download your state’s Advance Health Care Directives
Legal Guide for the Seriously Ill

Sources/Further Reading:

Hank Dunn, Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care and the Patient with a Life-Threatening Illness, Fifth Edition (ISBN 978-1-928560-06-7)

Elizabeth Gray Vining, Facing One’s Own Death, 1979, Spoken Essay for the Committee on Worship and Ministry for Philadelphia Yearly Meeting.

Lucy Screechfield McIver, A Song of Death, Our Spiritual Birth: A Quaker Way of Dying, Pendle Hill Pamphlet 340, 1998, Pendle Hill, Wallingford, PA.

Slow Medicine

Q: How might I cast forth the loose matter and get down to the rock, the sure foundation, and there hearken to the divine voice which gives a clear and certain sound?
Query adapted from quote—John Woolman, c. 1770, PYM Faith and Practice, 2002

Quaker Spirituality gives us a tool for decision making in our process of Clearness. In a Clearness Committee, we wait in community for divine guidance surrounding the question or decision before us. An example of a discernment process in health care is Slow Medicine. Slow Medicine allows one to make decisions based in what is meaningful to a person, what long-term outcomes may be, how one wants to live until the end. It is not a specific type of medical care, but rather an approach to decisions that encourages people to consider medical interventions carefully, with an eye to the whole person, and the long-range consequences of those decisions.

“Slow medicine is a special commitment undertaken by families and health professionals working together to achieve the very fullest understanding of aging loved ones and their complex, ever evolving needs. This, in turn, leads to wiser decision making regarding formal medical interventions…. The journey with our loved ones through the final decades of their lives should not be strewn with wasted opportunities complicated by the wrong kind of medicine,” says Dennis McCullough, M.D. in his book My Mother, Your Mother.

An example of slow medicine is when a doctor would normally recommend major surgery for an acute problem, but knowing that the patient has other long-term health issues, decides to consult with a patient and family about other options, such as physical therapy or palliative care. The team of caregivers work together with the person to determine if the outcome of surgery is worth the pain and risk, if it may lead to further complications, or if it even may prolong rather than alleviate suffering.

These can be very difficult decisions for all involved, and Slow Medicine supports patient, informed decision making rather than rushing in to cure one problem without considering the whole person. Some useful questions to consider are:

  • What information about this person would help the person being cared for, the caregivers, the doctors, that they may not be aware of?
  • How are each person’s values, emotions and experiences, especially those of the person in need of care, considered?

“The sunlight shines through the cloud; even when the cloud is so thick we cannot see the sun at all, its rays carry on their healing work…”
T. Edmund Harvey, 1929, PYM Faith and Practice, 2002

How the Meeting/Faith Community Can Provide Support:

  • Discernment: We can be supportive of those facing physical, emotional or cognitive challenges by supporting spiritual discernment. Clearness committees can help individuals and their loved ones make decisions that are grounded in the unique spirit and values of the one in need of care.
  • Planning: Encourage people to make their wishes known through living wills or advanced directives, so that family members left behind can be at peace with decisions they may face when/if the person in incapacitated and cannot participate in the decision making process.
  • Caring: It is helpful for people to know that they will be supported and cared for regardless of the outcome of their decision.

“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, 2001 PYM Faith and Practice

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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. 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.

Visit Dennis McCullough’s Website

Sources/Further Reading:

Jane Gross, “For the Elderly, Being Heard at Life’s End,” The New York Times, May 5, 2008

Dennis McCullough, My Mother, Your Mother: Embracing “Slow Medicine,” the Compassionate Approach to Caring for your Aging Loved Ones, Harper Collins, USA, 2008

Conversations About Driving

Q: Am I ready to offer assistance as part of my religious community? Am I equally willing to accept graciously the help of others? Am I open to counsel and advice?
PYM Faith and Practice, 2002

Discerning when it is time to relinquish responsibilities may be more difficult when faced with our need to accept help, and the issue over whether one is able to drive safely is among the most difficult conversations to initiate with aging loved ones. In a 2008 survey, 36% of family members surveyed said they had trouble talking to an older family member about giving up driving—more people than had trouble asking about preferences for funeral plans.

Age itself does not determine one’s ability to drive safely. Older drivers are more likely to self– regulate than other age groups, for example limiting their own driving to daytime or local streets, and are statistically more cautious . However, older adults are also at higher risk for physical conditions that impede one’s ability to drive safely, and are more likely to be taking prescription drugs that can have a negative effect on driving skills. Giving up driving may be necessary, but it is often understandably difficult for people to take this step.

Even if you have a lifestyle that does not make you dependent on driving, imagine not being able to take the bus, walk or bicycle to the store, the park, a loved one’s home, or Meeting. Imagine that you need to call someone every time you need to get to a doctor appointment or pick up a few groceries. Giving up one’s mode of transportation means becoming more dependent upon others for help. This may well be why some people resist giving up driving, even when it has become uncomfortable or risky.

What can we do to help ourselves or others make this difficult transition?

“Every stage of our lives offers fresh opportunities. Responding to divine guidance, try to discern the right time to undertake or relinquish responsibilities without due pride or guilt.”
Quaker Faith & Practice 1.28 (Fourth edition), Britain Yearly Meeting, 2009

  • Don’t wait until driving is a problem. Think and talk about what one would do if driving were no longer a possibility.
  • If concerned about a loved one, consider a professional evaluation by a social worker or doctor to help determine whether it is same for him/her to drive.
  • Be honest about your concern while also offering alternatives– be ready with information about county transportation, individual help, or volunteer services available.
  • Embrace public transportation and shared rides, it’s better for the environment anyway. If you live in a place where this is difficult, consider whether this will be a good environment for you “down the road”.
  • Advocate for better public transportation systems.
  • Establish car pools or bus companions for getting to Meeting—why not do it for everyone, not just those who no longer drive?
  • Consider partnering with other local faith groups to provide ready teams for transporting people who can no longer drive to medical appointments, for groceries, and other services. See www.faithinaction.org for an example of this program.

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.

Download this article in pamphlet form

More articles on this website:

Allowing Yourself to be Cared For: Autonomy, Interdependence and Interrelationship

Other Articles/Links:

AARP resources on driving safety
Association for Driving Rehab Specialists

Generativity and Aging

“Live affectionately as Friends, entering with sympathy into the joys and sorrows of one another’s lives. Visit one another. Be alert to give help and ready to receive it. Bear the burdens of one another’s failings; share the buoyancy of one another’s strengths.”
Advices, PYM Faith and Practice, 2002

My Grandfather lived to the very old age of 98. He retired before I was born, moved in with us when he was in his eighties. He passed his days gardening in the shade, engineering contraptions to keep squirrels out of the birdfeeder and making current jam. He spent his nights reading and occasionally playing pool. He had a sturdy heart, and a few minor physical health issues, which meant occasional forays into the hospital and a hearing aid he rarely wore. In the years he lived with us a progressive dementia led him to repeat stories and wander, always in the same direction, following the creek and ending up in a neighbor’s back yard.

Adjusting to Grandpa’s challenges was not difficult, at least from a child’s perspective. We tuned our voices to accommodate his hearing loss, followed his tracks in the woods, accompanied him in the grocery store and accepted that he always bought the same three things, regardless of need. These adaptations I remember, largely by repetition. However, the smell of his mended cardigan, the brown felt of his ancient hats, they way he seemed as much a part of the woods as the trees themselves, those memories are ingrained in my very being. His setbacks were not recorded in my bones like the humus of leaf mold we used to bed the ferns for the winter. I suppose his gait slowed, but I could not describe that in the detailed way I can the sour of currant before it was sugared in the pot, the thrill of cold creek water on bare feet, and how it soaked the hems of our pants. I remember in detail the way he treasured his few possessions – the photographs of family and his son’s scrapbook of writing, how one gumdrop from the glass jar was precious, and enough. The changes that came to grandpa with illness and age were an accepted part of his and our routine. It is his essential teachings that shaped and formed me.

If we are lucky, we have a relationship with an elder or the memory of one to treasure. Yet we live in a complicated time. The values of our family and faith community about how we view older adulthood may conflict with messages in our fast-paced society that promote youth and productivity. We are encouraged to resist even the natural physical signs of our ripening to old age, smooth our wrinkles, subdue the silver in our hair, and keep moving. These messages suggest that growing older is a decline, and we may question our own purpose as we age. We know that despite any number of challenges, our elders are precious. How can we come to hold our own aging in the light that we view those who came before us?

“In primitive tribes we observe that the old people are almost always the guardians of the mysteries and the laws, and it is in these that the cultural heritage of the tribe is expressed. How does the matter stand with us? Where is the wisdom of our old people, where are their precious secrets and their visions?”
Carl Jung, “The Stages of Life”

Today, these questions raised in Carl Jung’s essay diverge from the messages of popular culture that promote eternal youth and productivity. Suggestions that we must look young saturate us, we are supposed to stay active, buy and produce, and there is little to encourage us to examine values or pass on wisdom. As Friends, our beliefs and values about growing old may contrast with much of what we experience in the larger world.

Examples of the preponderance of messages against aging abound on television, magazine ads, and on the internet. December 18, 2009, simple internet searches yielded the following:

  • “Anti Aging products”: 48,300,000 results
  • “Look Younger”: 70,500,000
  • “values”, “aging”: 12,500,000
  • “spirituality”, “aging”: 6,500,000
  • “Values in Aging”: 672.

In an attempt to be more specific, a search for “Quakers”, “Aging” and had a hopeful 270,000 results, only to discover that many had to do with (sorry, Friends) recipes calling for Quaker Oats. (Note: to their credit, articles related to aging on the Quaker Oats website talked about nutritional and exercise needs at various stages of life, and did not emphasize an unhealthy obsession with staying young.) Considering that much of the results for the search “values”, “aging” included advertisements for “Anti-Aging Value Packs”, numerous articles on marketing for older adult housing, and at least one story about an aging sports stars ”losing value”, the priorities, at least related to what is promoted and talked about on the internet, are evident. Instead of befriending the ripening that comes with age and cultivating all that has to offer, we are encouraged to fight the natural process of aging as if it is an enemy.

Print or internet advertising and television commercials may not have as much influence on Friends and others who are clear in their values or who intentionally avoid media where such things are rampant. However, we cannot ignore the widespread impact of media messages on the world around us, nor can we ignore that these messages not only influence our culture, but also reflect it. We live in a world of unrealistic expectations, and the focus on eternal youth blurs the voices of the aged and diminishes the value of old age.

“If we take seriously the nurture of our children in the worshiping group, we must start re-appraising the whole life of the group. What kind of communication exists between us all? Do we know one another as people sharing joys and sorrows?…Are we across all ages a community learning together? Do we constantly look for experiences that can be shared by the whole community?…”
Peggy McGeoghegan, 1976 PYM Faith and Practice, 2002

We are at risk of neglecting the vital contribution elders can make: seasoned wisdom, institutional memory, historical lessons, and gentle perspective that develops over time. As much as we cherish our grandparents and elder community members, we cannot deny that for many, an aura of anxiety about aging and diminishment shrouds our view of the elderly.

This anxiety may block our access to the heart of the person within the aging body. We hear only the weakened voice, not the wisdom it speaks. We lose sight of the person as if they are gone with their lost memories, and miss the precious focus of this moment in their lifetime. In our communities, we segregate the most frail and needy, providing care and comfort, but often forgetting that this person has something to contribute to us as well. Unless we recognize the worries and stigma that affect our individual responses to the elderly and others who face challenges, we will have difficulty finding a healthy acceptance of aging that allows us to make the most of our own lives and relationships.

Is Aging an Option?

This question appeared as a pop-up ad on my computer screen after I had conducted the series of age-related internet searches. Though the advertisement suggests otherwise, aging is not an option. We all have been aging since we were born and we will continue to do so until we die. None of us knows what lies ahead on our path through the journey of aging. If we live long lives, as most people do nowadays, we may reach a point where we are no longer productive economically, or perhaps we are more physically, cognitively, or emotionally dependent on others. Does accepting aging and other challenges mean we resign ourselves to a segregated life of leisure while others carry on the “real work”? What then, is our role to be?

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:

Celebrating Aging in Your Faith Community
Celebrating Lives and Life Stories
Generational Relationships: Advices and Queries
Older Adulthood and Stewardship of the Environment

Other Articles/Links:

Sage-ing Guild
Green Seniors
Generations United

Including Everyone: Faith Community Care for People with Challenges

Q: Do I show through my way of living that love of God includes affirming the equality of all people, treating others with dignity and respect, and seeking to recognize and address that of God in every person?
PYM Faith and Practice, 2002

Any of us, at any time, may experience a challenge that means we need adaptations to access places, activities, and community that are important to our lives. We are all in some way differently-abled. For some, needs differ only slightly or temporarily from the mainstream, others face lifelong challenges. Creating an inclusive environment supports Friends’ Testimony of Equality and enriches the spiritual community by allowing us to experience the rich and beautiful diversity of humankind. How can a faith community create an environment where everyone fits, all are welcomed warmly, and each person’s needs are considered?

When considering accessibility and community, try to avoid assumptions and always ask a person what they need. Many spiritual groups are eager to address building accessibility, and this is important. (It is difficult to attend an event where one cannot access the bathroom) However, inclusiveness requires sound communication and a welcoming attitude in addition to physical accessibility. Following are some ideas gathered from various Quaker Meeting’s reponses to a Philadelphia Yearly Meeting Care and Aging Survey conducted in 2009 and also from Grounded in God, Care and Nurture in Friends Meetings, edited by Pat McBee. In addition, you may want to contact your regional faith community office, such as your Yearly Meeting, or a local advocacy group for resources and support.

  • Nothing About Me Without Me: always ask people what they need, and how the community can be welcoming and accommodating.
  • Make sure you address a variety of barriers: architecture and communication is accessible, and that your attitude is welcoming.
  • Maintain awareness of local resources, call on them or your regional faith organization (Yearly Meeting for Friends, Area Agency on Aging, advocacy groups) for help.
  • Regularly make any resources known, i.e. financial assistance that is available (funds available through your faith group.)
  • Announce needs for rides, visits, or other support after worship, during events, through phone committee or e-mail lists.
  • Education for the community, on sensitivity and related to specific challenges
  • Maintain contact information for family members or close friends for people choose to share this information. This helps in the event of a crisis or if the group is unable to contact someone.
  • Support caregivers—Clearness Committees and spiritual care as well as practical support such as cooking, cleaning, visits, transportation
  • Provide opportunities for service to the community—a homebound person may be able to serve on the phone committee, for example, or ask homebound members to mentor new or younger attenders
  • Establish a “buddy system” for people who live alone
  • Communicate with people who are unable to attend worship or committee meetings through newsletters, phone calls, website. Web blogs, e-mail, home visits, send photographs or letters.
  • Assess why your members can’t attend. Are people truly homebound, or is it your environment shutting them out?
  • Do you need to work on the environment, communication, or attitudes so everyone is welcomed and included?

“The test of true ‘community’ is not its sighs of pity for its vulnerable citizens, but its acts of acceptance and inclusion.”
Christina Hurr, Superintendent for the Butler County Board of Mental Retardation and Developmental Disabilities, Ohio

“When we learn to be inclusive, we can be a world of shalem, or wholeness, and create a world of shalom, which is peace.”
Rabbi Ted Riter, Temple Adat Elohim, California

“A community that excludes even one of its members is no community at all.”
Dan Wilkins

“You should include everybody, that’s how you stop bullying.”
Buffo, World’s Strongest Clown

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:

Role of the Spiritual Community in Care
Spiritual Approach to Dementia Care

Sources/Further Reading:

Edited by Pat McBee, Grounded in God, Care and Nurture in Friends Meetings, Philadelphia, Quaker Press of FGC, 2002.

That All May Worship – An Interfaith Welcome to People with Disabilities, 2005, National Organization on Disability, Washington, D.C.

Erik Carter, Including People with Disabilities in Faith Communities, 2007, Paul Brookes Publishing, Baltimore, Maryland

Various Meeting’s reponses to Philadelphia Yearly Meeting Care and Aging Survey, 2009.

Quotes from Everyone Is Included