Caregivers « Utah Parent Center
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Caregivers

In the United States today there are approximately 50 million people who are caring at home for family members including elderly parents, spouses, and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for loved ones would require permanent placement in institutions or health care facilities at great cost to society.

 

UPC’s e-Journal: Caring and Caregivers


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e-Journal Table of Contents

Caregiving and Caregivers
Are You A Caregiver?
Achieving Well Being
How Do We Manage As A Family?
Utah Coalition for Caregiver Support
Disability Resources

 

In the United States today there are approximately 50 million people who are caring at home for family members including elderly parents, spouses, and children with disabilities and/or chronic illnesses. Without this home-care, most of these cared for loved ones would require permanent placement in institutions or health care facilities at great cost to society.

Close to 80% of all long-term care is now provided at home by family caregivers to children and adults with serious conditions… Parents and family caregivers are the backbone of the long-term care system and save health-care insurers and governments billions of dollars annually. The value of the services family caregivers provide for “free” is estimated to be $306 billion a year. That is almost twice as much as is actually spent on homecare and nursing home services combined ($158 billion).

According to a November, 2007 survey on family caregiving, most family caregivers feel more positive about their experiences than they did just before they took on the responsibility.

The survey also found that:

  • Sixty percent of the caregivers called the experience “very or extremely rewarding,” a 50% jump over the number of caregivers who thought in advance they would find the experience “very or extremely rewarding.” Nearly 80% of the caregivers found the experience to be at least “rewarding,” an increase of more than one-third from initial expectation.
  • A majority of the caregivers – nearly 54% – formed a stronger bond with the patient during the time they were together.
  • Almost 60% of the respondents reported an improvement in the quality of their relationship with the person for whom they cared. Social activities of the caregiver tend to diminish. The diminished social activities are replaced with an increased quality of relationship with the care recipient.
  • More than 2/3 of all caregivers (68.7%) said they enjoy the tasks associated with caregiving. Prior to assuming the role, fewer than half (45.5%) thought they would enjoy caregiving.
  • More than ¾ of caregivers are female.
  • Nearly ¾ range in age from 35 to 59.

Excerpted from:
Study source: http://www.caringtoday.com/press-releases/national-survey-of-caregivers
Source: http://en.wikipedia.org/wiki/Caregiver

Community and Family Health Services, Division of
This site provides information about our public health programs and services available for Utahans. You can search for a list of programs and services. CFHS provides services that are related to health promotion, maternal and child health, and services for children with special health care needs.

Family Resource Library
The Family Resource Library is a collection of videos and print materials containing practical information for families of persons with disabilities. These materials offer information to assist in improving the lives of people with special needs. The Family Resource Library serves persons with special needs and their families in the four-state area of Utah, Idaho, Wyoming, and Nevada. Materials can be provided to any individual regardless of location.

Family Support Center
The mission of the Family Support Center is to protect children, strengthen families, and prevent child abuse. They offer classes on: parent education (in English and Spanish), anger management, impacts of sexual abuse, an Adults Molested as Children Group, divorce adjustment classes, referral services, a resource library, and many more.

Keep Kids Healthy
Keepkidshealthy.com is designed as ‘a Pediatrician’s guide to your children’s health and safety.’ It is not meant to replace the medical advice that you receive from your doctor. Instead, we hope to supplement the information that you receive from your child’s physician, with a special emphasis on better health through preventative care.
Among the features that keepkidshealthy.com offers to parents are free parenting advice, online forums, info product recalls and pediatric news updated daily, an immunization schedule (just enter your child’s date of birth and it will prepare a vaccine schedule according to the 2003 AAP recommendations), growth charts, asthma center (with customized peak flow calendars and action plans), breastfeeding center, a sophisticated baby name finder (which allows you to also enter multiple middle and last name to view different name combinations), a body mass index calculator to see if your kids are at risk of being underweight or overweight, height predictor, a lead poisoning screening quiz, plus info on kids nutrition, growth, development, common problems, diseases and conditions and infections in children.

 

Resources

Educating yourself about your loved one’s disability, health problem, or special needs is an important strategy. Identifying support groups, organizations, agencies, programs, services, and resources online and in the community that are available to assist you, your loved one, and your family is critical to your functioning and success as a family.

For a detailed resource guide, visit the Utah Parent Center website at www.utahparentcenter.org and choose the “Disability Resource Book” option
OR
Contact the Utah Parent Center at 800-468-1160 to speak to a Parent Consultant.

Online Parent Supports

Our-Kids is a support group for parents, caregivers and others who are working with children with physical and/or mental disabilities and delays.

Websites

Following are just a few websites you might find useful:
UCare – If a loved one leans on you lean on us

Today’s Caregiver – For About and By Caregivers

Empowering Caregivers – Choices, Healing, Love

MedlinePlus – A service of the U.S. National Library of Medicine and the National Institutes of Health

Medicare.gov – Caregiver Information

Books About Caregiving

There are many print or ebooks on topics related to caregiving. Following are just a few that have been recommended by families. Perhaps you can start here and explore others as you identify titles and authors.

THE CAREGIVER’S BOOK: CARING FOR ANOTHER, CARING FOR YOURSELF
James E. Miller
Here is a compassionate exploration of the caregiver’s role, feelings, and experiences, providing practical, affirming suggestions for renewing strength and hope through words of inspiration from the Bible, literature, and great thinkers throughout the ages.

CARING FOR THE CAREGIVER
Roy W. Harris
Caregivers have been overlooked. Author Roy Harris faithfully stood by his wife of thirty-three years as the two navigated the uncharted waters of breast cancer, ultimately resulting in her death. Roy’s sixteen years of experience as a pastor, someone who has been there for countless families going through the death and dying process, adds special insight to the helpful Caregiver.

CARING FOR THE CAREGIVER: THE USE OF MUSIC AND MUSIC THERAPY IN GRIEF AND TRAUMA
Joanne V. Loewy, Andrea Frisch Hara
Caring for the Caregiver: The Use of Music and Music Therapy in Grief and Trauma A collection of reflections on music therapy interventions provided as a part of the New York City Music Therapy Relief Project, sponsored by AMTA and the Recording Academy after September 11th, 2001.

A CAREGIVER’S SURVIVAL GUIDE: HOW TO STAY HEALTHY WHEN YOUR LOVED ONE IS SICK
Kay Marshall Strom
“Kay Strom is a caregiver who has invested countless hours in helping her disabled husband. She knows what it’s like to plod through the routines, and she has opened up her heart and shared her poignant and powerful account of how she ‘found the smile of God’ through it all.

THE TWENTY-THIRD PSALM FOR CAREGIVERS
Carmen Leal
Offers devotional encouragement, hope, and tender affirmation for all caregivers no matter the disease or situation.

CARING FOR YOU, CARING FOR ME: EDUCATION AND SUPPORT FOR CAREGIVERS: PARTICIPANT’S MANUAL
David H. Haigler, Caring for persons with chronic illnesses or disabilities is a rewarding endeavor, but it often places extreme demands on those providing care. Caregivers need both education and support to understand their caregiving roles and to cope with the difficult situations they face. All too often there is a chasm between professionals who are part of the formal caregiving system and family members, friends, and neighbors who provide daily care.

PASSAGES IN CAREGIVING: TURNING CHAOS INTO CONFIDENCE
Gail Sheehy
Thrust into the daunting and unexpected role of caregiver when her husband, editor Clay Felker, was diagnosed with cancer, Sheehy was dismayed to find herself lost in the labyrinthine, illogical, and often contradictory world of health care. When second opinions gave way to thirds, and innumerable insurance forms were completed only to have the claims rejected, Sheehy realized she needed answers, assistance, and attitude. For a tenacious reporter like Sheehy, getting answers was second nature but finding competent help and learning how to put things into perspective weren’t as easy.

CAREGIVER’S REPRIEVE: A GUIDE TO EMOTIONAL SURVIVAL WHEN YOU’RE CARING FOR SOMEONE YOU LOVE
Avrene L. Brandt
This book highlights the fact that caregiving is a difficult task and that the emotions caregivers feel are common and normal. The book exonerates caregives who feel guilty for the difficulties that they face and provides the support that we need to carry on.

THE COMPLETE BEDSIDE COMPANION: A NO-NONSENSE GUIDE TO CARING FOR THE SERIOUSLY ILL
Rodger McFarlane, Philip Bashe
Caring for someone who is seriously ill is a major responsibility. It is both a full-time job that is physically, emotionally, and financially demanding, and a rewarding act of love. This book, written by two experienced caregivers, “walks you down the road from the onset of symptoms through the very end and afterward.” It offers practical information, advice, and support for those who undertake this monumental task.

SELF-CARE FOR CAREGIVERS: A TWELVE STEP APPROACH
Pat Samples, Diane Larsen, Marvin Larsen
Are you one of the growing number of people who serves as a caregiver for an aging or chronically ill friend or family member? If so, you probably struggle to meet both their special needs and still find time and resources for yourself. But now there is reason to take heart. The authors of this down-to-earth, encouraging book can help you make the most of the experience without losing yourself in the process using the Twelve Steps as a guide.

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