Category Archives: Physical Health

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.

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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:

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

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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:

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

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.

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:

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

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. 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

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

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:

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