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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

Download this article in pamphlet form

LINKS TO MORE INFORMATION: Click on the blue text below to be directed to outside websites that offer additional information on this topic. Articles from this site will open in the same browser window/tab. Articles from other websites will open in a new window; when you are done, simply click out of that window and you will be back on this site.

More articles on this website:

Care of the Caregiver
Honoring the Individual Through Validation
Spiritual Approach to Dementia Care
Spirituality and Change
Stigma

Other Articles/Links:

Anxiety and Depression Association of America
Mental Health Ministries

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.

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.

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Visit Tom’s website
Find a Certified Aging in Place Specialist in your area

Aging with Peace

“I am learning to offer to God my days and my nights, my joy, my work, my pain and my grief…I am learning to use the time I have more wisely…And I am learning to forget at times my puritan conscience which prods me to work without ceasing, and instead, to take time for joy.”
Elizabeth Watson, 1979 PYM Faith and Practice

Continue reading →

Aging at Home

Aging at Home

Living at Home Forever

- 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. Read More

Conversations About Driving

- 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. Read More

Hoarding

- While hoarding may be treated successfully as an addiction, it is an anxiety based disorder and sometimes requires professional help. There is a network of social workers who specialize in this phenomenon. There are also a few workbooks that can walk the hoarder through making changes in small steps, a process best done with on-site assistance of someone with great patience, which usually means not a family member. Read More

Housing Options

- Retire according to your values: You will consult a pension specialist, call Social Security, and choose a Medicare supplement before you retire. Plans are made, goals set; you have been looking forward to this part of life for a long time. Have you considered what you would like your spiritual life to be like in an intentional way? How do you intend to go deeper, discover meaning, be a gift to others? Read More

Downsizing and Spiritual Practice

- Your home is a work of art created by you, an expression of who you are and what is important to you. If there comes a time that you need to move to a smaller place, the emotional ties to home can be difficult and painful to unloose. It is also a time of spiritual opportunity, an invitation to live out Friends’ beliefs and testimonies, a time of grace and gratitude. Moving from reluctance or refusal to gratitude is not a journey of chance, but one that should be planned, with directions, rest stops, and view points. Read More

Adaptive Advices

- Assistive Devices can help people maintain self care skills and participate in their favorite activities. Communities benefit from diversity when adaptations are made to include people with physical or other disabilities. What are assistive devices and how can they help? Read More

Role of the Spiritual Community in Care

- 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? Read More

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

- “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. Read More

Senior Co Housing and Intentional Communities

- A movement in intentional communities is growing among older adults. Senior or Older Adult Cohousing is a form of Intentional Community where residents participate in the planning and design of villages and live cooperatively, mutually supporting one another through the changes that aging can present. These communities allow residents to age in place while sharing resources for caregiving, property and home maintenance, and transportation. Neighbors look after one another and each member contributes his or her strengths to the community. Read More

On Being a Grandparent

- My Grandmother was born in 1895. She witnessed incredible progress in her lifetime – the introduction of automobiles, electric lights, and powered flight. She witnessed social events like the New Deal and the March on Washington. She also witnessed horrible social catastrophes like WWI, the crash of 1929, WWII, the Viet Nam War. We lived close by and would often spend a Sunday afternoon at her home, until her death in 1973. She was born in the 19th century and here I am living in the 21st. Read More