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Family Caregiving: The Who and What of Family Caregiving (FS1930, Oct. 2019)

Family caregiving is an activity that occurs across many different settings. Individuals in need of care at particular times may include adult children with special needs, aging parents, a sick family member or a friend. People may need help with transportation to medical appointments, light chores around the home, payment of bills or personal care. No matter the person or the need, the who and the what of family caregiving clearly are important to understand.

Sean Brotherson, Ph.D., Extension Family Science Specialist

Jane Strommen, Ph.D., Extension Gerontology Specialist; Philip Estepp, M.S., Extension Associate


Family Caregiving: Tips and Tools for You and Your Loved Ones

(iStock.com)

Who Are Caregivers?

You may or may not identify yourself as a “caregiver.” For example, spouses often just take care of their husband or wife because that’s what spouses do. Parents may handle needs for a sick child. But caregiving happens in a variety of situations. So, who is a caregiver? Consider the following examples:

  • Many adult children gradually start helping their aging parents and don’t think of themselves as caregivers.
  • Parents of children with special health or behavioral needs may not see themselves as caregivers.
  • Grandparents who are raising their grandchildren often consider themselves only as grandparents loving their grandkids.
  • Spouses and family members of military members who have come back from war wounded and in need of care don’t view themselves as caregivers.
  • Family members living at a distance but still helping a loved one don’t see themselves as caregivers.
  • Children and teens also are serving as caregivers for sick siblings, parents or aging relatives.
  • Many caregivers of older people are older adults themselves, and many of those caregivers are in poor to fair health.

Caregiving is an activity that occurs across many different settings. All are caregivers!

Are You a Caregiver?

Are you a caregiver? Consider each of the following types of assistance listed below and check any that apply to you (or someone you know). Do you:

o Assist with transportation needs

o Do light housekeeping tasks

o Do grocery shopping or prepare meals

o Help pay bills or manage money

o Offer social or emotional support

o Provide a place to live

o Manage legal or insurance matters

o Handle personal care needs

o Help lift, move, bathe, dress or feed someone

o Guide or assist in using technology

o Make sure someone takes medicine

o Assist with toileting

o Play games or visit with someone

o Other _____________________________

o Other _____________________________

These are just a few of the ways that you may have been involved in providing care to family, friends or community members. If you provide, or have provided, any of the listed types of assistance to a spouse, child, parent, relative, friend or neighbor, then you are a caregiver!

What is Family Caregiving?

Each of us grows older. Also, the people we love and care about grow older or may have care needs. This may include our parents, siblings, children, spouses, in-laws or other family members, friends and neighbors. A common experience is giving care to a family member in need, which often is referred to as “family caregiving.”

Family caregiving refers to providing help and assistance through basic, regular tasks such as personal care, household chores, financial management, emotional support, or giving food and shelter to dependent adults or family members. The level of caregiving one provides can vary from occasional monitoring of how a person is doing to full-time, round-the-clock care for a bed-bound or home-bound individual.

Rosalynn Carter, former first lady of the U.S., made this insightful statement:

“There are only four kinds of people in the world – those who have been caregivers, those who are caregivers, those who will be caregivers and those who will need caregivers.”

Potential Benefits of Caregiving

Providing direct care to an adult family member or other individual can result in a variety of stresses. However, remember that this experience can have a variety of positive benefits as well.

Understanding the rewards and challenges of the caregiving experience can be helpful. A focus on the positive aspects of the caregiving experience can give perspective and needed hope when stress increases. Consider the following potential benefits of caregiving and list some of your own ideas.

 

Self-care Resources and Tools

What can caregivers do to take care of themselves? Learning skills for self-care is very important. Regardless of how much care you provide, taking care of yourself is an important ingredient for wellness. Self-care is an important strategy for caregivers and involves such items as: 

  • Reducing personal stress
  • Changing negative self-talk
  • Communicating feelings and needs to others
  • Communicating in challenging situations
  • Setting limits
  • Asking for help
  • Dealing with emotions and changes
  • Making tough caregiving decisions

Conclusion

Almost every person will be a caregiver or a care recipient at some point. A person’s caregiving experience may be brief or lengthy. However, learning to provide care in positive ways, reduce stresses and pursue positive benefits of caregiving can be life-changing.

Recommended Resources on Caregiving

North Dakota

Selected resources are listed here for North Dakota. Search out the resources available in your state or region.

  • North Dakota – Aging and Disability Resource LINK (ADRL): 1-855-462-5465

The North Dakota Aging and Disability Resource LINK (ADRL) is a toll-free number that provides all North Dakota residents and their family members with free information, counseling and links to services and supports available in your community. The CareChoice website, which is part of the North Dakota Aging and Disability Resource-LINK, can be accessed at https://carechoice.nd.assistguide.net.

  • North Dakota – Family Caregiver Support Program: 1-855-462-5465

The Family Caregiver Support Program: 1) helps eligible caregivers address challenges related to providing 24-hour care and 2) provides services including respite care, information about services and supports, training to assist caregivers to improve skills, individual or family counseling, and other services to complement the care provided by caregivers. Information on this program can be accessed at www.nd.gov/dhs/services/adultsaging/caregiver.html.

  • Regional Aging Services Program Administrator (RASPA): 1-855-462-5465

A RASPA is a professional in your area employed by the Aging Services Division who is familiar with local supports and services for older adults and people with physical disability. The RASPA can make home visits, meet you at a convenient location or talk by phone to connect you to available services. Call the ADRL at 1-855-462-5465 to connect with a RASPA to schedule an options counseling visit. Access the North Dakota Department of Human Services website to identify the RASPA for your region at www.nd.gov/dhs/locations/regionalhsc/index.html.

Other Resources

  • Book and Resource Website – Share the Care: How to Organize a Group to Care for Someone Who is Seriously Ill. (2004). New York: Simon and Schuster – This resource, by C. Caposella and S. Warnock, outlines helpful strategies to provide care and share support when a person is ill, disabled or in need. The book is accompanied by a resource website: www.sharethecare.org
  • Book – How to Care for Aging Parents, 3rd ed. (2014). New York: Workman Publishing – This excellent, comprehensive resource by V. Morris provides a guide to help with medical, financial, housing, emotional and other issues in caring for an aging parent.
  • Educational Program – Powerful Tools for Caregivers – This educational program focuses on giving you the knowledge and skills to take care of yourself while caring for someone else. Topics include self-care behaviors, emotion management and community resources. Available in North Dakota and across the U.S.

www.powerfultoolsforcaregivers.org

www.ag.ndsu.edu/aging/family-caregivers (North Dakota)

  • Online Resource – Caring.com – Caring.com is on an online resource site that provides practical advice from caregiving experts and seasoned caregivers for a wide range of topics, from senior hygiene to medication management, meal preparation, transportation and more. The site offers articles, tools, a supportive community and a directory of caregiving services. Learn more at:

www.caring.com

  • Online Resource – Videocaregiving.org – Videocaregiving.org is on an online resource site supported by Terra Nova Films that provides visual educational materials to family caregivers. The site focuses particularly on delivering short, simple and practical videos on a wide range of family caregiving circumstances and challenges. Topics addressed in videos include a range of caregiving issues and many specifically on Alzheimer’s disease and care. Learn more at:

www.videocaregiving.org

  • Organization – Family Caregiver Alliance (National Center on Caregiving) – The Family Caregiver Alliance is a nonprofit organization addressing the needs of families and friends providing long-term care for loved ones at home. The services, education programs and resources FCA provides are designed with caregivers’ needs in mind and offer support, tailored information and tools to manage the complex demands of caregiving. Resources include online support groups, caregiver education and fact sheets. Learn more at:

www.caregiver.org

References

Brotherson, S.E. (2004). Family caregiving: Managing stress and accessing resources. Family and Communication Education Club lesson module. Fargo, N.D.: NDSU Extension.

Caposella, C., and Warnock, S. (2004). Share the Care: How to organize a group to care for someone who is seriously ill. New York: Simon and Schuster.

Gitlin, L.N., and Schulz, R. (2012). Family caregiving of older adults. In Prohaska, T R., Anderson, L A., and Binstock, R.H. (Eds.), Public health for an aging society (pp. 181-204). Baltimore, Md..: The Johns Hopkins University Press.

Morris, V. (2014). How to care for aging parents (3rd ed.). New York: Workman Publishing.

Schulz, R., and Sherwood, P.R. (2008). Physical and mental health effects of family caregiving. Journal of Social Work Education, 44(3), 105-113.

 

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