Author Archives: Meg Reber

Grief

“What we must do…with God’s help, is to accept sorrow as a friend, if possible. If not, as a companion with whom we will live for an indeterminate period, for whom we have to make room as one makes room for a guest in one’s house, a companion of whom we shall always be aware, from whom we can learn and whose strength will become our strength. Together we can create beauty from the ashes and find ourselves in the process.”
Elizabeth Gray Vining, 1952, Quoted in PYM Faith and Practice, 2002

Grief, the intense sadness that comes after a loss, manifests itself in many forms, is different for everyone, and often impossible to put into words. Though grief is universally experienced, it can be isolating. Reminding us of our aloneness in how it affects each person differently, it is something that one must go through in one’s own way. It can numb, enrage, or level a person all in one day. It may challenge our faith. Grieving persons may experience anxiety, depression, fear, physical aching, and may feel blindsided, experiencing an intensity of feeling they have never experienced before. Some may experience giddiness, or other seemingly inappropriate emotions. Those who have grieved and who work with grieving people agree, there is no way around it, only through it.

In 1969, Dr. Elizabeth Kubler-Ross identified five stages of grief:

  1. Denial: A sense of unreality, this cannot be happening. One may feel numb, unable to process emotions. This may be a way of helping us cope with loss without being completely overwhelmed.
  2. Anger: One has a sense of unfairness. A person may become angry at the one who died, oneself, family members, or doctors.
  3. Bargaining: This may take place before the loss. Bargaining with God, with family members, with one who is leaving… “I’ll be a better person if…”
  4. Depression: Overwhelming sadness, frustration, hopelessness. People may experience changes in sleep patterns, eating habits, even thoughts of suicide. Always refer to professional help if thoughts of suicide are expressed or suspected.
  5. Acceptance: The loss is accepted as permanent, and thoughts turn to moving on and finding the good in life again. One realizes that life must go on and begins to take steps toward living again. This does not mean the loss is forgotten or that sadness is gone for good, but that we can cope and move forward with living. Some people may become resigned, rather than accepting. This is not the same and may indicate that the person needs further help in coping with their loss.

Though stages of grieving have been identified, not everyone goes through these stages in the same pattern. How then, can we help others or ourselves through the grieving process?

Supporting a Grieving Person:

  • Do not expect people to grieve a certain way, follow a specific pattern, or stick to a timeline of grief. Expectations that grief should end within an allotted time are unrealistic and arbitrary.
  • Validate and accept whatever a person is feeling– numbness, anger, confusion, sadness. Feelings are not right or wrong, they just are.
  • Do not ignore or avoid the loss. If you do not know what to say, just listen and be present. Some people may process their loss by repeating the story. Be willing to listen again.
  • Provide physical comfort and practical support – food, housework, organization, help with childcare, outdoor chores.
  • Empathy, when genuine, can be helpful. Letting a person know that you have experienced similar feelings, if this is true, may alleviate loneliness and provide comfort that this pain will not last forever. However, try to avoid comparisons that set up expectations. Acknowledge that each of you will have a unique experience, but that you will be beside the person no matter what. Again, just listen.
  • Provide information about professional resources, support groups and counseling. Offer rides and support as needed.
  • Seek immediate help if thoughts of suicide are expressed.
  • Listen.

Traumatic or Complicated Grief:

Grief after a trauma, such as an accident, violent, sudden or painful death may be exacerbated by post traumatic stress disorder. There is increasing evidence that in such cases, treating the person for post traumatic stress is important in allowing for a healthy grieving process. Often the focus is on the person who has died or is in intensive care and the trauma to family members is overlooked. A professional evaluation should be conducted to be certain that appropriate treatment occurs.

Grief that is unrelenting, worsens over a long time, or is accompanied by unusual behavior may indicate complicated grief. A professional should evaluate complicated grief.

Blessed are they who mourn, for they shall be comforted.
The Beatitudes

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More articles on this website:

Depression

Other Articles/Links:

Journey of Hearts website
Grief’s Journey website
Journey Through Grief Website
The Compassionate Friend: grief support after a child dies

Sources/Further Reading:

Agnes Whitaker, Editor, All in the End is Harvest, an Anthology for Those Who Grieve, 1984, Darton, Longman&Todd, London.

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

Ronna Fay Jevne and James E. Miller, Finding Hope: Ways to See Life in a Brighter Light, 1999, Willowgreen Publishing, Fort Wayne, Indiana.

Lucille Clifton, Everett Anderson’s Goodbye, 1983, Henry Holt and Company, New York, NY. (A children‘s book that captures the stages of grief in beautiful simplicity relevant to any age)

Fred Rogers, Mr. Rogers Talks With Parents, 1983, Family Communications Inc. Pittsburgh, PA. (A parenting book that covers many topics and has a beautiful, simple approach to grief and dying)

Joan Halifax, Being With Dying, Cultivating Compassion and Fearlessness in the Presence of Death, 2009, Shambala Publications, Boston.

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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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

Hospice Care

“I am tremendously content to let one activity after another go, and to wait quietly and happily the opening of the door at the end of the passageway that will let me into my real abiding place.”
Hannah Whitall Smith, 1903, PYM Faith and Practice, 2002

Hospice is an extremely useful service to a person who might have only a few months to live and his or her family. Such was my own case: my 86-year-old mother had been living with me for eight years.

One evening, I had just been home to check on my mother before I went out socially with the local hospice director. The hospice director asked me about Mom’s condition. I let her know she did not get around much. Mom was basically wheelchair bound and incontinent, but she did not seem to have any life-threatening illness. The Director replied, “I’ll bet she would be eligible for hospice.”

I was surprised. Here I was, a gerontologist working on end-of-life research and I did not recognize that she might qualify for hospice. The next morning I called her doctor, “Do you think Mom might die within six months?” He laughed, “I don’t know when your mother will die, but I will agree to her having hospice.” The intake nurse from hospice program came over and did an assessment. Sure enough, my mother qualified for hospice care.

But, oh, what would I say to Mom? I decided to be very upbeat, as if we had just gotten a bonus check on life, and went into her room saying, “Guess what, Mom? We can get hospice! Wow, this is great.”

And indeed it was great. It meant that a nurse case manager came every week to check on Mom’s health and well-being. She would occasionally suggest different medications to the doctor. If the doctor agreed, soon would come a delivery of free medicine. The same happened with equipment needs that made it easier to care for her. A delightful chaplain came regularly to chat. I’m sure he heard how Mom felt ready to die and go be with Daddy in heaven. A young hospice volunteer came and I am quite certain he was asked more of his own life story than he got out of Mom. An aide came twice a week to bathe Mom or do what she needed. This help was all a great boon to the housekeeper and myself as we tried to keep up with her care.

About four months into the program, Mom was a little weaker, and it was harder to get her in and out of bed. A device called a Hoyer lift was brought in to help lift her from the bed, but the space could not accommodate it. The long-term housekeeper was moving on, and I was getting quite nervous as to how I would pull my daughter’s wedding together in six weeks, keep my job, and maintain good care for Mom. The chaplain and case manager counseled me to check Mom into a nursing home. They would be able to follow her care there. Reluctantly, I did. Mom ended up in a very nice personal care home where her hospice care continued.

The family all came for the wedding. Mom got to go in a special van, even stayed to watch the festivities. The family left after farewell visits with Mom. The hospice aide had started a routine of bringing her guitar on her regular visits in order to sing hymns. The primary hymn they sang the following day was, “I’ll Fly Away.” Mom did indeed fly away the following day. I was working out of town, but rushed back when I got word that her death was eminent. When I arrive her body had been washed and she was beautifully peaceful. The hospice bereavement chaplain was waiting there for me, assisted in my last goodbyes to Mom, and guided my next steps.

Mom had died five months after enrolling in hospice and five days after her last granddaughter’s wedding. Hospice filled mom’s end-of-life care with great quality, all at no cost! I also had the benefit of bereavement care for the next year.

Basic hospice features are:

  • Medicare, Medicaid and most health insurances pay for hospice. In addition, hospices never turn people away because they cannot pay.
  • The patient has no further aggressive treatment to cure an illness, all medical treatment is palliative, or comfort care, with excellent pain and symptom management.
  • Hospice is run by a team: nurse/case manager, social worker, aide, chaplain, bereavement coordinator, doctor, and volunteer.
  • The care is for physical, psychological, and spiritual needs.
  • Sometimes, a patient can easily get better with all the good care and “graduate” out of hospice.

“I have got to leave. Bid me farewell, my brothers!
I bow to you all and take my departure.
Here I give back the keys of my door – and I give up
All claims to my house. I only ask for last kind words
from you…”
Rabindranath Tagore

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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
Care of the Caregiver
Grief
Slow Medicine

Other Articles/Links:

Caring Connections information about hospice care
Find a Hospice or Palliative Care Provider

Sources/Further Reading:

Kirsten Backstrom, In Beauty, A Quaker Approach to End of Life Care, Pendle Hill Pamphlet 355, 2010, Pendle Hill, Wallingford, PA.

Denys Cope, RN, BSN, Dying: A Natural Passage, 2008, Three Whales Publishing, Santa Fe, NM.

Hank Dunn, Hard Choices, Fifth Edition 2009, A&A Publishers, Inc., Lansdown, VA or order online

Lucy Schreechfield McIver, Song of Death, Our Spiritual Birth, A Quaker Way of Dying, Pendle Hill Pamphlet, Pendle Hill, Wallingford, PA.

Blessed are they who mourn, for they shall be comforted. The Beatitudes

Living at Home Forever

by Tom Wells

My dad was diagnosed with Alzheimer’s about 10 years before he died in 2007 at age 93. It was a slowly progressing disease at first. Fortunately my parents could maintain their regular retirement activities up until the last couple of years, when Dad’s flexibility and ability to care for himself really diminished. My parents chose to live at home, not really having the money or inclination to move to any type of retirement setting.

My parent’s scenario is typical of a lot of families these days and will become even more prevalent over the next 40 years. The Baby Boom cohort (of which I am a member) and our elderly parents, by choice or circumstance, will be living in their homes until they die. Unfortunately most of our homes are not really set up to enable graceful living as our ability to function in a “normal” way diminishes. Each of us will feel frustrated, bordering on angry, just like my Dad did, when we can not really care for ourselves in a dignified way. For Dad, changing a few simple things in his house would have gone a
long way to mitigating that frustration.

The nice thing about the changed that were needed for my parent’s house is that they actually increased the value of it, if even slightly. Number one on the list was installing a first floor powder room. For obvious reasons everyone liked this concept. Next was things to hold onto. Things like these can be a really sturdy chair or couch, an additional railing for a tricky spot getting in the house or at the top of the stairs, a decorative and sturdy towel bar in the kitchen or bath, stylish grab bars in the shower or by the toilet, some hooks for hanging coats and hats installed 6 inches lower or a non skid mat by the
front door.

A couple of years ago I pulled a leg muscle while working. It required a month of physical therapy up at St. Mary’s. What an eye opener – first of all there were people of all ages getting worked on and almost every part of the body was involved. For three weeks I could not bend over to tie my shoes unless I lay on the floor contorted something awful. My wish list then (and for the future) was a first floor bedroom ‘cause getting up and down the stairs was a time consuming ordeal. Also slightly wider doors to the bathroom, a few more foot stools to rest on, a side table or two, lever style door knobs,
and non-slip floors. I also noticed that having windows that opened easily made a difference, as I could tell that my diminished leg strength was affecting my ability to lift things. My kids, who for some reason love dumb waiters, thought there must be a location in the house for one of those – maybe to get their text books or I-pod upstairs!

Not to belabor the point, but going forward, whether we now own a home or will be moving into a different one in the future, most of us will be requiring our homes to help us live full functioning lives as our bodies begin to say otherwise. Making changes to the layout, structure and amenities long before the changes are needed is prudent. Lastly, if we are going to be living in our home indefinitely then the home should be as energy
wise as possible. Get an Energy Audit. Years of energy savings will mean a lot of money in your pocket.

Tom Wells is a Member of Fallsington Meeting in Bucks County PA, Sustainable Building Advisor, Certified Green Advantage Residential Practitioner and Certified Aging in Place Specialist.

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Find a Certified Aging in Place Specialist in your area

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.

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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