Category Archives: Emotional Care

Spirituality and Change

“What will this newfound present of old age and its unknown future demand of us? Where is dignity to be found in it? How shall we find ourselves the dignity we see is needed?”
Mary Morrison, Without Nightfall Upon the Spirit, Pendle Hill Pamphlet*

Moving through Loss: Illness, loss of mobility, hearing or sight, or other changes in one’s usual abilities can present spiritual and emotional challenges along with your physical concerns. One needs to validate the loss and allow grieving to occur, in order to move to a place of acceptance. We can find strength in our values and comfort in our spiritual community in facing our losses.

“The secret of finding joy after sorrow, or through sorrow, lies,…in the way we meet sorrow itself…accept sorrow as a friend, if possible. If not, as a companion…Together we can create beauty from the ashes and find ourselves in the process.”
Elizabeth Gray Vining, 1952, PYM Faith and Practice

Letting go of what was: Though we most often associate bereavement with death of a loved one, it is important to acknowledge that grieving occurs with other losses or changes that occur in our lives—a changed relationship, lost job, physical challenges, or illness. Understanding the bereavement process and moving through grief allows you to move to a place of acceptance, which will help you to make the most of your life under changed circumstances. For more information on the grief process, see the “suggested resources” below.

Understanding What Is: When you are ready, knowing more about your illness or challenges may help you learn to live with your changed circumstances. Find out what you want to know about your physical condition, or enlist a friend to help you.

Consider Possibilities: You may find yourself with a long list of “can’t.” It helps to think in terms of adaptation, rather than giving up. Are there ways you can adapt your home to accommodate your needs? Are there support groups in your area or online where you can learn more, and find others who share similar experiences? A friend who loved to cook and eat at restaurants had to give up many beloved foods because of her illness. Her doctor handed her a list of what she couldn’t eat. With a pared down list of ingredients, she researched recipes made with things that she could eat, and had fun creating some of her own dishes.

“I see this time as our opportunity to explore and experiment with this law of spiritual change in our own lives, beginning with little ways, infinitesimal ways, which will lead us to the larger, broader ones…There are infinite possibilities for us…”
Gene Knudsen Hoffman, 1982 quoted in Practicing Peace, edited by Catherine Whitmire

Actively Envision the Future:

  • What are your core values, and what do you need to live in a way that is consistent with those values?
  • Who are the people that can help you, and what do you need from them? Don’t be afraid to be specific. Many of us want to help, and don’t know how.
  • What will you need to do differently than you used to, and how can you make the adaptations necessary to live your potential?

Creating an accessible worship environment for those facing physical challenges, such as hearing, vision, or mobility is an opportunity for creativity and broadening in your community. Let people know what you need to participate —sound systems for the hearing impaired, a wheelchair ramp, a certain place to sit. Sharing your story helps others grow in their understanding, and will help alleviate their fears as they see you facing your challenges.

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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:

Continuity and Coping
Conversations About Driving
Downsizing and Spiritual Practice
Generativity and Aging
Spirituality and Aging

Other Articles/Links:

Coping with Serious Illness: Letting Change into Your Life, by Marcia Breitenbach

Sources/Further Reading:

John Yungblut, On Hallowing One’s Diminishments, Pendle Hill Pamphlet 292, Pendle Hill, Wallingford, PA.

Mary C. Morrison, Gift of Days, Pendle Hill Pamphlet 364, Pendle Hill, Wallingford, PA.

* Mary Morrison, Without Nightfall Upon the Spirit, Pendle Hill Pamphlet, Pendle Hill, Wallingford, PA.

Interdependence

“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, Quoted in PYM Faith and Practice, 2002

In Mother Teresa In My Own Words, she tells of bringing rice to a family of eight children who had not eaten for days. The mother accepted the rice, and then divided it in half and went out the door. When she returned later, she explained to Mother Teresa that the people next door had just as many children, and they, too, were hungry. Mother Teresa did not bring her more food that day to make up for what she had shared, but instead waited until the next day. She recognized this mother’s need, despite her own poverty, to give to others, and wanted her to enjoy that happiness.

When we are helping someone who is confined by physical, emotional or cognitive challenges, it is easy to overlook the basic human need to be useful to others. We are so conscious of being helpful that we reject offers of help from the one being cared for, saying “It’s ok, we can do that for you,” or “You don’t need to worry about that.” It may be easier or seem safer to do a task for someone than to allow the time or adaptation needed for that person to do for themselves. Nevertheless, we all need to give, and to feel useful and needed. Our good intentions in protecting someone from stress or absolving them of responsibility may result in that person feeling diminished.

As a new caregiver, I quickly discovered the challenge of following this philosophy of care. Usually I worked daytime hours facilitating programs, but I was required to work in direct care one weekend a month. Weekends in the nursing home were usually short staffed, and we were required to assist anywhere from 8-10 people from bed and through morning routines of using the bathroom, brushing teeth, shaving, bathing, and dressing. Ideally, we were to have this finished within one and one half hours so we could then assist those who needed help eating breakfast. This was much more difficult for me than the challenges of my usual job.

During the day, it could be hard to balance the responsibilities of facilitating a program with the personal care needs of residents. Groups would be interrupted to meet a resident’s more urgent need, such as to use the bathroom. Truthfully, I enjoyed these moments of respite and one on one conversation, and I worked hard to help in a way that was discreet and did not add to the embarrassment of the person in need. This often meant relying on the residents in the group to keep things going for themselves, and I learned to return quietly to enjoy the sense of empowerment the group acquired in my absence. However, morning routines on weekends did not afford the luxury of this approach.

I found it impossible to help people through the morning routine in the allotted time while preserving their self-sufficiency. There simply was not enough time in the schedule to allow adaptations necessitated by cognitive, physical or emotional differences. During the day, process was priority over product in our programs and we made adjustments. However, sacrificing a care task such as brushing teeth or shaving was not an option, so those I cared for and I were always late for breakfast.

One morning, I was trying to help a woman with late stage dementia get dressed. Only half dressed, she decided to quit. She simply sat quietly down. She would not allow me to help her any further. No cuing, no amount of choices, no cheerful invitation “Can I help you with…” would convince her to continue. She had only one shoe on and removed her shirt. If I left her this way, she would likely walk into the hall and I was concerned about her dignity and safety. I stuck my head in the hallway; sometimes a switch in caregivers would help in such a situation. There was no one in sight. I made her bed, busied myself with other tasks and tried again. I held up her shirt; let the open sleeve brush her arms for physical cuing. “Can I help you get this other shoe on? That must be uncomfortable,” got a smile and nothing more. She held fast her arms and kept her unshod foot firmly on the ground. I was aware that I was holding up care of other residents and frustrating my co-workers. The approach to care that I had been taught seemed impossible in this reality, and overwhelmed, I started to cry.

I looked up from my place on the floor by her feet and said, “I need your help.” Her expression changed from apathy to genuine concern. This woman had little ability left to process language, but she was listening to me at another level. I told her I needed to go to the dining room to help another person who could not feed himself; would she please go with me? She seemed to sense that she was needed and the momentum shifted—she quickly responded to my cues and finished dressing.

Later, I felt guilty. I wondered if expressing my need so emotionally was unprofessional. I should have been caring for her; it was unfair of me to unload this burden of my work. Nevertheless, I realized that what happened in our exchange was an allowance of genuine giving. Who gave what to whom? Despite her resistance to getting dressed, her presence was peaceful and serene. Her serenity gave way to allowing me to express myself sincerely—there was nothing artificial in my breakdown into frustration. I gave her my need, something she had not experienced in a while, and she gave me the allowance to care for her. The exchange was reciprocal. I really did need her help.

I never became efficient at the morning routine. This is the reality of staffing for many organizations, and unless that can be addressed, there will always be a tendency for care to be rushed. In those circumstances, it is very hard for a caregiver to meet the level of dignity that is possible when people are encouraged and enabled to care for themselves. I did learn some valuable lessons about independence and interdependence.

Someone might enjoy a shave, having their nails done or getting a haircut as these are things we are accustomed to allowing others to do for us. Rarely have I met someone who felt genuinely accepting of help with the full range of personal care, especially such intimate care as cleaning up after using the bathroom. Gentle, validating kindness helps and empowerment to do what one is able is crucial. Yet, does any approach take away the underlying shame of being unable to do for oneself in a society that fiercely promotes self-sufficiency and independence?

Our lives intertwine like tree roots beneath the ground, together holding the soil and feeding our individual selves. Under the skin of our separate existence is a skeleton that holds us in place. Without the roots, the ground below us crumbles away. Without the skeleton, we are perhaps able to live but unable to get anywhere.

How can we weave the will for independence with the inherent need for interdependence in caring for one another? Can we shed the ingrained need for independence in our self-image?

We could work on this change as individuals, promoting an attitudinal shift to accepting care with grace. However, if independence is such a strong societal value, it seems we also need to make a shift in our interactions with one another. We should support independence of an individual to the degree possible, as this will promote their emotional well-being. What if we also supported and consciously acknowledged one another’s interdependence? By baring our own needs, can we open the door for others to accept care willingly?

Mother Teresa understood how important it was for the mother in that story to give as much as to receive food for her hungry family. In turn, what a gift it was for someone as humble and generous as Mother Teresa to allow someone else the pure joy of giving. This story does not tell us if she had mixed feelings, whether she questioned her decision not to rush back in with more food, or if she had to fight her natural impulses to allow this. It does illustrate her understanding of the value of pure, heart-felt sacrifice, the need we all have to give.

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
Continuity and Coping
Generativity and Aging
Spirituality and Change

Sources/Further Reading:

Mother Teresa, edited by Jose Luis Gonzalez-Balado, Mother Teresa In My Own Words, New York, Gramercy Books, 1996

Ram Dass, Still Here – Embracing Changing, Aging and Dying, 2002, Riverhead Books, New York, NY.

Role of the Spiritual Community in Care

Q: When we become aware of someone’s need, do we offer assistance? PYM Faith and Practice, 2002

Often Meetings are shy about contacting Friends and attenders who might be in need of some sort of support. Meeting members say, “I don’t want to intrude”, or, “They’ll call us if they need something”, or, “We don’t do that.”

Actually, we should reach out, as we did historically, and, if not us, who then? Friends forget that it is not the clergy that we got rid of, but the laity: we are, all of us, the clergy, the preacher, the minister, the pastor, for our Meetings. As pastors, we have a responsibility to reach out to seniors, singles, and the no longer able, to ascertain what role Meeting needs to take in their support. Those who need our help most, may be the least able to ask for it. If the person rejects our help, at least we have tried.

Continue reading

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

Q: Am I willing to offer assistance as part of my religious community serving its members? Am I equally willing to graciously accept the help of others? PYM Faith and Practice, 2002

“Temporarily able-bodied” is the term used by Nancy Eiesland, in her book The Disabled God, to refer to people who are not living with disabilities. In fact, at least half of us will experience some form of disability during our lifetime, either short term or lasting. As our population lives longer, being disabled will likely be inevitable for even the healthiest among us.

We live in a society that promotes independence and self-reliance. Friends may find themselves better prepared to offer care than to receive it. And, while we may be compassionate when others have needs, how willing are we to accept our interdependent natures when it comes to our dependency needs?

“Whenever major change disrupts any relationship-disability, or moving from one stage of life to another-everyone involved has to build a new relationship with the other if that relationship is to continue and flourish.” John Zeisel, PhD, pg.177, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s.

This new relationship involves changed roles for people who need care- and caregivers. Understanding that we need to rely on others may not come naturally, but this acceptance can give us strength and allow us to focus on deeper aspects of our relationships. Accepting change allows us to make the most of our lives under changed conditions.

Here a few inspirational stories from people who have experienced major changes due to illness:

In PYM’s 2002 Faith and Practice, Jennifer Faulkner is quoted, “I have a vivid memory of looking down on myself on the bed; doctors and nurses worked on that body, and I felt held in such secureness, joy and contentment the utter rightness of things.” Later, as she experienced setbacks and finally recovery, she said she “never completely lost the memory of being held and the wonder at being alive.”

Ram Dass, in Still Here, writes, “Having accepted my predicament, I’m much happier than I was before. This troubles some of the people around me. They have told me that I should fight to walk again, but I don’t know if I wanted to walk. I’m sitting—that’s where I am. I’m peaceful like this and I’m grateful to the people who care for me…I’ve grown to love my wheelchair (I call it my swan boat) and being wheeled around by people who care.” Pg 6

These stories show how some have found peace with illness and disability. Many of us, when faced with challenges, need to work to reach such acceptance. This work may likely include acknowledging any losses our illness or disability presents.

Tips for Finding Peace with Being Cared for:

  • Think back to simple tasks and follow the trail of what truly enables a person to accomplish a task. For example, Joe went to the market for groceries, loaded them in the car, and put them away at home, all apparently without assistance. However, what if the workers had not been there to open the store, the farmers hadn’t grown the food, the traffic lights were not working? The point is, even the simplest tasks, when we really think about it, require a system of interdependence. You have participated in this system, and you still can, though perhaps in new ways.
  • Be mindful of what you can do, small and large. Make a list of what you are able to do for yourself, and be willing to think in small increments. You need help getting dressed, but you can make choices of what to wear, perhaps get one arm in one sleeve. Encourage your helpers to allow you to do what things you can, regardless of how small, and even if this slows things down. Think in big picture terms of what you can do as well— you can listen to others, give advice, appreciate beauty.
  • If losses come up (or frustration over what you can no longer do), honor your emotions. Hold yourself in the light as you would a friend who was experiencing what you are.
  • Practice gratitude for what you have, your experiences, and the people around you. List it. If you cannot write, allowing someone to record this for you will be a gift to that person.

“The whole idea of compassion is based on a keen awareness of the interdependence of all these living beings, which are all part of one another, and all involved in one another.” Thomas Merton

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. Ziestomverslowcre . 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 site:

Generativity and Aging
Role of the Spiritual Community in Care

Other articles/links:

Aging As A Spiritual Practice
Gratitude Log

Sources/Further Reading:

Ram Dass, Still Here – Embracing Aging, Changing and Dying, 2000, Riverhead Books, New York, NY.

Nancy Eiesland, The Disabled God, Toward a Liberatory Theology of Disability, 1994, Abingdon Press, Nashville, TN.

Mary Morrison, Without Nightfall Upon the Spirit, Pendle Hill Pamphlet 311, Pendle Hill, Wallingford, PA.

John Yungblut, On Hallowing One’s Diminishments, Pendle Hill Pamphlet, Pendle Hill, Wallingford, PA.

John Zeisel, PhD, I’m Still Here: A Breakthrough Approach to Understanding Someone Living with Alzheimer’s, 2009 Penguin Group, New York, NY.