Family Caregiving Tips: Creating a Care Team
Are you providing care for an adult family member or friend who is ill? If you said yes, then you may be what is called a family caregiver. Family caregivers are people who care for someone (family member, friend, neighbor) that is aging, has an intellectual or developmental disability or one who is ill, such as caring for those with cancer, Alzheimer’s disease, heart disease or those having problems breathing. Family caregivers are not specially trained to provide care and they are not paid for the care they provide.
Providing care for someone can be stressful, especially if you do not have help or find it easy to accept. The purpose of this fact sheet is to provide the necessary information to create your own “care team” – people who can help provide care for your loved one.
In 2015, an estimated 43.5 million Americans were caring for a family member or friend. Much of the time, caregivers are providing care along with their other responsibilities such as work or child care. So it is easy for caregivers to feel overwhelmed and alone while providing care. Sometimes, caregivers may not know who to turn to when they need assistance, which can lead to higher levels of stress. On the other hand, most caregivers find the role meaningful and important, just sometimes confusing. Therefore, it is helpful to create a care team.
Care teams can help lower stress and make caregivers feel more connected to their friends and family. Informal and formal supports have been shown to reduce the amount of stress caregivers experience, so it is important for caregivers to know who is on their team.
- Informal: family members, friends and neighbors who can provide both physical help with tasks and emotional support.
- Formal: family physicians, nurses, social workers, etc. People who can provide information when you have a question or who can help you find and access local resources.
Where to Start
It is important that you make sure the person you are caring for has a voice in any decision making. Start by talking with your loved one to determine what they need help with. It is good to have this conversation often. When planning your care team, think of family members and friends who can help you with tasks. Ask family and friends to assist with things you may not be able to do, or to simply to spread the workload. Most of the time, people are happy to help out. Think of caregiving like a marathon. Even though you can do it all, it is great to have helpers because there will be times when you can’t or perhaps shouldn’t try to do it all alone.
How Can Your Team Help YOU?
It is also a good idea to create a checklist of tasks that need to be completed from which people can pick and choose which ones to do. Examples include mowing the lawn, grocery shopping or laundry. A specific task list makes it easier for members of the care team to see how they can participate. Often, family and friends want to help, but either cannot see how to help, or you give the impression you do not want help.
Remember Local Resources!
Community resources can be helpful in providing information on aging, as well as referrals to local resources. Family physicians, nurses, pharmacists and dentists are excellent people to have on the care team to answer questions regarding your loved one’s health. Remember – according to the Health Insurance Portability and Accountability Act of 1996 (HIPAA), only certain people have permission to discuss your loved one’s health with their physicians. It is best for the caregiver to be the bridge between the physicians and the rest of the family. The local Area Agency on Aging (AAA) and Aging Services under Oklahoma Department of Human Services (OKDHS) have many programs for older adults, such as home delivered meals, transportation or respite programs to give the caregiver a much-needed break. These programs also can provide information about other resources in your area. Go to Eldercare to find the local AAA, or call 211.
Use the diagram on the back to assist in developing your care team list.
Care Team Worksheet
Many times, caregivers feel like they are alone in providing care. This worksheet is to help draft your care team. Your loved one is the coach – calling the shots. As the main caregiver, you are the pitcher (1) in charge of the rest of the team! Now think about the people you rely on the most or those on whom you can easily call. Those individuals are your infielders. (2 – catcher, 3 – first base, 4 – second base, 6 – short stop, 5 – third base). Some examples could include close family members, friends or church members. Outfielders are those who may live far away or can help only occasionally (7 – left outfielder, 8 – 9 – center outfielders, 10 – right outfielder). Some examples could include family members that live out of town, neighbors, your loved one’s primary care physician and community resources. Remember, every team has players in reserve, so it’s good to have a list of a few alternates.
Chang, H. Y., Chiou, C. J., & Chen, N. S. (2010). Impact of mental health and caregiver burden on family caregivers’ physical health. Archives of Gerontology and Geriatrics, 50, 267-271. doi:10.1016/j.archger.2009.04.006
National Alliance for Caregiving, & AARP Public Policy Institute. (2015). Caregiving in the U.S. 2015. http://www.caregiving.org/caregiving2015/
Hayden O. Lodor
Care Consultant, Oklahoma Caregiving Education Program
Kristopher M. Struckmeyer
Assistant State Specialist for Caregiving
Whitney A. Bailey
Sarah R. Gordon