Caregiving at Home


According to the Institute of Medicine, 52 million Americans (31 percent of the adult population age 20 to 75) provide “informal care” to a family member or friend who is ill or disabled.

About 37 million of these caregivers provide help to family members and about 15 million provide help to friends. Of those individuals providing care to family members,a majority are devoted over twenty hours of assistance each week.

Most caregivers are untrained, or what are called “informal caregivers.” These are the children, relatives, spouses, friends that provide assistance to elderly adults who need assistance in their homes, residential facilities, assisted living centers,hospitals, hospices, and nursing homes.

Being a caregiver is demanding, stressful, often frustrating, and hopefully rewarding. Yet, it can also be a very difficult task, especially for the elderly person’s children who often have their own family members to care for.

Resources for caregivers can be difficult to find. Below are some general guidelines for informal caregivers and numerous on-line resources that will hopefully make your job as caregiver more manageable, more satisfying, and more beneficial to the individual you are caring for.

Guidelines for Caregivers

1.  Understand the needs of the individual you are caring for

This may sound simplistic, but unless you know the physical and mental state of the elderly individual it will be much more difficult to meet their needs. A good place to start is to meet with them and their doctor. If that is not possible, seek the assistance of a trained home care nurse or social worker who can conduct an evaluation.

Consult to identify aging agencies in your area. They can assist you in locating resources to evaluate your care recipients condition and provide care management.  Once you have identified the condition of your care recipient, consult with to learn more about specific medical conditions or illnesses.

While it is tempting to believe you understand your recipient’s condition, particularly someone whom you have known for a long period of time, many diseases, ailments, or mental conditions are not obvious. With the assistance of a trained professional your recipients needs will be better met, and your efforts will be more focused and hopefully more efficient.

2. Plan a course of action

Having an understanding of your recipients condition, you can determine if they can stay live independently or will need more skilled care. You can explore your options by contacting your State or Area Agency on Aging. In most states these agencies will be located in individual counties. You can readily locate your agency by going to the U.S. Department of Health and Human Services Area Agency on Aging Web site. Here you will find information on housing options, home care services, and other assistance and resources for caregivers. Your Area Agency on Aging will also provide information on how to participate in caregiving support groups, obtain training to increase skills in caregiving, and caregiving coaching services.

3. Address your own personal needs and mental health

Being a caregiver can be a demanding job, particularly for those who have a job, are raising a family, or who, themselves, have health  care needs. The Area Agency on Aging identifies respite care that will allow primary caregivers relief from caregiving responsibilities. Often these respite care services will come in the form of volunteer workers, adult day programs, nursing home services, or adult foster home care services.

4. Communicate with your recipient

Ask them what there wishes may be, have them identify their needs and how well those needs are being met. Explain to them the limitations you may be faced with and how you are trying to provide the best support possible. Keep a journal of your communications and the needs that are expressed by your recipient. You may find it useful to periodically reflect on these conversations and discuss them with your recipient.

5. Evaluate your progress

Examine your initial goals you established, your limits, and the quality of services you may have obtained for your recipient. If you have served a s a caregiver for a period of time, you likely have experienced the roller coaster moving from a sense of pride for helping someone to frustration with increasing demands on your life, to anxiety, fear, and frustration. At this point you may need to re-evaluate your plan and identify ways to obtain more assistance, emotional support, or respite care.

As your recipient becomes less able to take care of themselves, you will likely need to adjust your plan. It may be time to have a case manager conduct another evaluation of the situation or you may need to begin to consider other living options such as assisted living, a nursing home, or skilled home care services.

Online Resources

The AARP provides a guide for planning to care for older members of your family. This guide, Prepare to Care can be downloaded at no charge. It includes a number of checklists addressing personal information home maintenance lists, health checklists, a transportation checklist, and a financial checklist. This guide also includes a five step plan for preparing a family discussion on caregiving, forming a team, assessing needs of the elderly individual making a plan, and taking action on the plan. The booklet also includes listings of resources on housing, transportation, health, and financial matters.

The National Alliance of Caregivers is a non-profit coalition of organizations addressing family caregiving issues. Their Web site contains a number of comprehensive publications including the following:

Care for the Family Caregiver: A Place to Start. This forty page booklet provides information on Caregiver Training, Caregiver Training, Navigating the Health Care Maze, Taking Care of Yourself, The Financial Aspects of Caregiving, Legal Issues of Caregiving, Planning for the Future, Family Caregiver Training Resources, The Costs of Caregiving, and a Caregiver Resource Guide. This is an excellent publication. Anyone who is currently engaged in caregiving or contemplates serving in that capacity should read this publication.

Resources for Caregivers: 2007 is a 37 page booklet written by Metlife Mature Market Institute and the National Alliance for Caregiving in Cooperation with the National Association of Area Agencies on Aging. This is another comprehensive guuide to resources for caregiving as well as caregiving needs and resources for specific medical conditions including AIDS, ALS, Alzheimer’s Disease, Cancer, Cerebral Palsy, Diabetes, Heart Disease, Mental Illness, Multiple Sclerosis, Mental Illness, Parkinson’s Disease, Stroke. For each medical condition the following categories of information are addressed:

  1. Internet Resources
  2. Associations that Address the Medical Condition
  3. Books, and Media on the Medical Condition

Medicare: Caregiving Information provides valuable content on the following. Note, if you click on any of these titles you will be directed to the corresponding topic.

Financial Help for Caregivers

Find Local Support

Find local help with Geriatric Care

Compare Facilities

What Doctors Take Medicare

Get In-Home Services

Nursing Home Alternatives

Ways to Pay for Nursing Homes

Plan for Long-Term Care

Family Caregiving 101 is a comprehensive Web site dedicated to assisting caregivers produced by the National Family Caregivers Association (NFCA) and the National Alliance for Caregiving (NAC). This site contains the following sections:

  • Stages of Caregiving-Provides useful tips depending on the stage of your caregiving. Whether you are planning to be a caregiver or have ended your caregiving to an elderly person, the suggestions for organizing time, resources, and caring for yourself are invaluable.
  • How to Manage – This section includes (1) tips for taking care of yourself, (2) conducting a home safety check, (3) a self assessment to determine how well you are prepared to be a caregiver, (4) navigating the healthcare maze, (5) caregiving skills that includes information on how to communicate your need, time management skills, communicating with insurance company personnel, and communicating in the hospital setting, and (5) a listing of respite resources.
  • Find Help – This is a an extensive listing of resources on the following topics:
  1. Elder Care
  2. Financial Advice
  3. Home Care
  4. Literature on Caregiving
  5. Web Sites on Caregiving
  6. Caregiving Support Groups
  7. Respite Care

HelpGuide.ORG has created a Web page addressing the topic of preventing caregiving burnout. This is a brief, well written resource addressing the following:

  • Family caregivers: what you should know
  • Signs of caregiver burnout
  • Get the help you need
  • Seek emotional support
  • Taking care of yourself while caregiving
  • References and resources

The Department of Health and Human Services Eldercare Locator offers a powerful search tool providing a listing of local agencies in your community that provide caregiver support services as well as home care, meals, and transportation.

Long Distance Caregiving is increasingly becoming a topic of interest to adults who not live in close proximity to their parents. The National Council on Aging has created an informative Web page for these individuals addressing the nature of long-distance caregiving, how you will know when help is needed, what you can accomplish from a distance, how you decide what roles the various members of your family may play in caring for elderly parents, how you can deal with the frustration of long distance caregiving, how you can find a geriatric care manager, how you can keep up with the medical care of your parent, what documents you will need, how you can encourage for parents to obtain more assistance and lessen the burden on them, how you may help your parents decide when it is time to move, and what you can do if you are told your parent only has a few months to live. These topics are addressed in an informative and concise manner and are a good starting point for those who have recently assume the role of a long distance caregiver.

A Handbook for Long Distance Care Givers published by the Family Caregiver Alliance is a 22 page booklet written in a concise and informative manner. Topics address in this book include taking care of yourself while caregiving, general rules for caregiving, determining the nature of caregiving situation, a checklist of care needs, care managers, members of your caregiving team, places to start, balancing work and caregiving, paying for care, practical trips for the distance caregiver, engaging in a family meeting, helpful agencies and organizations.

The Family Caregiving Alliance provides a useful Web page on caregiving information and advice. Here you will find topical issues, fact sheets and newsletters. Topics addressed on this page include strategies for dementia caregiving, where to find important papers, caregiving, caregiving and sibling relationships, caregiving depression, having your parents move in with you, communicating with your doctor, a guide to take care of yourself, guidelines for better communication, and skills for caregivers.

Lotsa Helping Hands is a private, web-based caregiving coordination service to assist caregivers and their team with the scheduling and maintenance of th tasks associated with caregiving of an elderly individual. According to the Website, “each community includes an intuitive group calendar for scheduling tasks such as coverage or transportation to medical appointments, a platform for securely sharing vital medical, financial, and legal information with designated family members, and customizable sections for posting photos, well wishes, blogs, journals, and messages.” This is a novel approach to the use of technology to assist caregivers and is a wonderful resource for caregivers who have of team of individuals providing assistance. It is also a great tool to archive the details of the daily events associated with caregiving.

Caregiving Video

PBS has created a 2 hour video, Caring for Your Parents, which can be viewed on-line. This video addresses the challenges of adult children assuming the role of caregivers and how the process can proceed more smoothly through understanding the accommodations that are made in the family unit and using resources that are available in the community. This video is rich in personal experiences and serves as a valuable resource for any adult children who may be beginning to serve as caregiver to their parents.

Books on Caregiving

The following books will be useful for detailed information on caregiving. Most are readily available at bookstores or through your public library.

Always on Call: When Illness Turns Families into Caregivers Carol Levine New York, NY: United Hospital Fund of New York City, 2000.

And Thou Shalt Honor: The Caregiver’s Companion Beth Witrogen McLeod Rodak Press, 2002.

Caregiving Sourcebook: Basic Consumer Health Information for Caregivers, Including a Profile of Caregivers, Caregiving Responsibilities and Concerns, Tips for Specific Conditions Joyce Brennfleck Shannon Detroit, MI: Omnigraphics, Inc., 2001. $78.00

Caring for Yourself While Caring for Your Aging Parents: How to Help, How to Survive Claire Berman, Owl Books, 2001.

The Competent Caregiver: A Guide to Hiring Care in the Home Independently Elizabeth Ducasse, 1st Books Library, 2001.

The Complete Elder Care Planner, Joy Loverde, Times Books, 2000.

Complete Idiot’s Guide to Caring for Aging Parents Linda Colvin Rhodes, Ed.D. Indianapolis, IN: Alpha Books, 2001.

Consumer Reports Complete Guide to Health Services for Seniors Trudy Lieberman, Consumer Reports Books Editors Crown Publishing Group, 2000.

Coping with Your Difficult Older Parent: A Guide for Stressed-Out Children Grace LeBow and Barbara Kane Avon Books, 1999.

(photo: jenny downing)