Caring for Caregivers

Caring for Caregivers

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Family caregiving today takes many forms. Most of us are familiar with families who care for aging and elderly loved ones. But today’s family caregivers (often unpaid for their services) also care for relatives, friends, foster children, or loved ones who often have physical or mental disabilities. This includes parents with disabled children, grandparents raising grandchildren, friends assisting friends with chronic illness or disabilities, or friends co-caring for loved ones with a terminal diagnosis.

According to public policy, one in six Americans is considered a “family caregiver,” or someone who provides unpaid care for a family member. In a recent survey given by the Family Caregiver Alliance, 80% of adults over 50 reported being involved in a parent’s care currently or in the past. Today, over 435-million-unpaid-adult-caregivers-2018-07-20Americans are family caregivers.

The Slippery Slope: Ignoring Self Care

“Caregivers tend to be a special personality type: big-hearted, sensitive, responsible, well-intentioned — people who are motivated by and take a deep satisfaction in doing right by their loved one,” says geriatric psychiatrist Ken Robbins of the University of Wisconsin-Madison. “But that’s often to the exclusion of taking care of themselves.” 

Many caregivers slide down a slippery slope of neglect for their own needs as time goes on. They become inoculated to lack of sleep, routine stress, inconvenience, worry, and physical demands. 

Caregiver Burnout

According to the 2012 Stress in America Report by the American Psychological Association, caregivers rank among the three most-stressed groups in the country. A term often associated with this stress is caregiver burnout, mental, emotional and physical exhaustion that sometimes develops because of the responsibilities that are taken when supporting and caring for another individual. Caregivers often become so absorbed in the responsibilities of their loved one that they lose focus on caring for themselves.

Burnout Symptoms

How does a caregiver know when they’re experiencing burnout? Consider these questions:

  • You no longer enjoy doing things that used to give you pleasure.
  • Friends and family have expressed concerns about your mental or physical health.
  • You aren’t doing as well at work as you were previously.
  • You’re having problems with family members.
  • You’re experiencing recurring intense feelings of anger, fear, worry, or sadness.
  • You have a hard time concentrating.
  • You’re having trouble sleeping; you’ve gained or lost significant weight; or you’re experiencing other unexplained health problems.
  • You’re using a substance or other negative coping mechanism to cope with or suppress negative feelings.

Caregiver Self Assessment

Taking the Caregiver Self Assessment Questionnaire can be a first step for caregivers who feel overwhelmed. This simple 18 question assessment was originally developed and tested by the American Medical Association. It helps caretakers evaluate their behaviors and health risks and make decisions that are good for both themselves and their loved ones.

Tips for Self-Care

  • Practice self-compassion. Give yourself credit for taking responsibility for the challenging work of caregiving. Reject harsh self-criticism and step away a few minutes a day to take care of yourself. Practicing self-care makes you a more balance, compassionate, and effective caregiver.
  • Include relaxation techniques in your schedule. Learn simple breathing exercises. Practice yoga, tai chi, mindfulness, deep relaxation, or meditation.
  • Eat well and get quality sleep. Eat a balanced diet of lean protein, fruits and vegetables, and whole grains. Limit your intake of sugar and caffeine. Creating a regular 15-30 minute routine before going to bed can help you relax and sleep more restfully.
  • Stay socially connected. Join a caregiving support group. Find groups that support your interests, such as book clubs, card clubs, travel organizations, or attend a church or synagogue. Attend dances, concerts, plays, movies, art exhibits, and markets. Or find an exercise or fitness group.

Assistance Options

Many caregivers feel compelled to provide care themselves. But help is available in various forms and can be used at various stages of need. Caregivers need to resist the idea of “going it alone” and work to create a caregiving support network. The following assistance options are available.

Companion Care. An elder companion helps with cooking, light housekeeping, laundry, grocery shopping, and running errands. Most importantly, they offer companionship and eyes-on contact with your loved one.  There are many sources for companion care, from volunteers and neighbors to professionals hired through agencies. One good resource is Caring.com’s In Home Care Directory. Medicaid or a similar state program may help pay some of the costs of respite care from a licensed provider for those who have low incomes and few assets. Private pay will range from $10/hour up.

Personal Care Assistants. In addition to the tasks that elder companions provide, personal care assistants assist with bathing, toileting, dressing, and grooming. They can give medications and help people with disability limitations (if they have the proper training) but do not assist with diabetic care or other medical needs. Cost will range from $15-$40 per hour and daily rates for live-in care.

Adult Day Care. Assisted living facilities, continuing care retirement communities, churches, and nursing homes are among the organizations that provide day care services. Adult day care can provide exercise, health monitoring, meals, social activities, and often transportation and other services. The safe, supervised adult day care environment provides respite for caregivers. Some communities provide tax dollars to offset costs. Many accept Medicaid or sliding-scale payment. Always look for a licensed provider, whose costs can range from $24/day to $150/day.

Contact your local Area Agency on Aging to ask for a referral.

Assisted Living Respite Care. Many assisted living facilities, continuing care retirement homes, and nursing homes provide respite care for older adults who need assistance. Time frames are flexible: from a few days to a few months. Many facilities offer hourly, half-day, full-day, overnight, or extended respite stays. Costs average $100 to $250 per day, depending on the amount of care needed; some places impose minimums and maximums on the number of days for a respite stay.

Check with your local Area Agency on Aging for referrals.

Caregiver Co-op. Co-ops give caregivers an affordable option to take turns caring for one another’s loved ones in exchange for time off. The arrangement gives caregivers time for themselves while fostering a sense of community among the people who give and receive the care. There’s usually no charge. Members volunteer time caring for other co-op members’ loved ones in order to qualify for commensurate respite services. Check with local day care facilities or neighborhood association to look for a co-op in your area.

Veteran’s Facilities. Some Veteran’s Homes offer day care and respite programs. A program called Skilled Home Care offers meal planning and preparation, medication management, nursing, and social services to veterans who find it challenging to leave home. The VA also provides 30 days of respite care at home or in a VA facility to qualifying veterans. Services are usually free or minimal. Call 855-260-3274.

ARCH National Respite and Resource Center. The ARCH National Respite and Resource Center helps caregivers and professionals find respite services in their local area to match their specific needs for emergency or planned respite care. It does not provide an exhaustive search but is a starting point. The service is free and operated through State Lifespan Respite Programs.

It is my hope that these resources will help caregivers begin building a network of support. Caregiving teaches us that we cannot control disease, death, or destiny. But we can control how we respond to those who suffer. And we can take steps to steward our bodies, souls, and spirits as we give to others.

As U.S. Senator Cory Booker states in his poem “Sometimes,” asking for help sometimes can be the most meaning example of self-reliance.

My hope and prayer is that you move toward better competence and self-reliance as a caregiver as you ask for help and find rest and grace.

I’d love to hear from you. I invite you to share your  experiences, tips, or resources with our readers.

Peace and health,

Dr. Clem


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