If you or someone you know is a caregiver, then you understand that it takes a village to be one. Having a team to share the caregiving responsibilities with lightens the load and leads to improved care.
Without careful coordination, however, sharing caregiving duties with others can lead to confusion, tension, and caregiver burnout. With a little organization and a lot of communication, however, a family or team can simplify the caregiving process.
According to the Centers for Disease Control and Prevention (CDC), caregiving includes assisting another individual with one or more activities necessary for everyday living. Grooming, cooking, paying bills, or shopping are all examples of caregiving activities.
Data from the CDC shows:
The activities performed for a senior family member, however, typically increase with age or as their chronic condition worsens — which can cause strain and burnout amongst caregivers.
Middle-aged adults make up a bulk of the caregiver population in the U.S as they care for aging parents. This group also carries the responsibility of caring for children and spouses, adding to their caregiving load.
Before discussing how to coordinate caregiving responsibilities, the impact of caregiving on a caregiver’s own quality of life should be acknowledged.
Data from the CDC indicates that:
The statistics above demonstrate how the demands of providing daily care for a loved one, especially without respite, adversely affect the caregiver's physical and mental health. To provide quality care and prevent caregiver burnout, care coordination is necessary.
Caregivers don’t usually take the time to take inventory of everything they’re responsible for doing each day. If they did, they’d find that they do much more than they realize.
Taking note of what tasks are accomplished and what else may need to be done helps to organize and coordinate with others when the time comes. That way if caregiving responsibilities are shared, each person may list what tasks they regularly perform as a caregiver and collaborate with family.
The next step is to set up a family meeting. Organizing caregiving responsibilities are best delegated when there isn’t an emergency happening and during a time when emotions aren’t running high.
For example, the emergency department would not be a good time and place to coordinate care. A meeting at a neutral location where all caregivers are comfortable is best. Everyone should attend with their list in hand and ready to offer reasonable suggestions.
In an ideal world, care coordination would be free of hiccups, disagreements, and misunderstandings.
Unfortunately, we don’t live in that world. Complications will happen, but good communication can improve care coordination. Effective information exchange prevents misunderstandings and keeps things collaborative.
When meeting as a group, caregivers should focus on:
What is currently needed
What will be needed in the future
Finding ways to fulfill current needs
Finding ways to address future needs.
Deciding who will be responsible for which task is challenging, but the following are a few factors that may help the group decide.
When distributing tasks, consider each person’s strengths.
For example, one person may feel more at ease reading care plans and speaking with clinicians and medical providers than others. Another person may excel at organizing and taking care of bills and documentation. As much as possible, try to assign tasks by strength to provide effective care.
Aside from helping perform daily activities like grooming, cooking, and cleaning, a few other tasks that need consideration are:
Who will schedule visits (and accompany the person being cared for) to the primary care physician and other healthcare providers?
Who will handle bills, apply for reimbursements, and follow up with any Medicaid or Medicare issues?
Who will be the point person for the coordination of care?
Who will decipher treatment plans, interventions, and care plan initiatives prescribed by primary care providers and care teams?
Primary caregivers are especially under pressure when it comes to time and care management. It takes time to be a caregiver. Nevertheless, many caregivers are sandwiched between full-time jobs, children, and caring for their elderly parents or family members.
A calm and open discussion about schedules should also include the following questions:
Is there a primary caregiver? If so, how often can the others offer respite?
How much time can each caregiver offer?
How often can each caregiver afford to travel?
Coordinating care takes collaboration and empathy. Each person must be mindful of the impact caregiving can have on everyone’s time and energy.
Acknowledging that caregiving is challenging for everyone — and agreeing to share the load — takes some tension away from the caregiving coordination process.
A seamless information exchange is vital, particularly if there are several caregivers involved. Fortunately, a variety of tools exist to simplify care management and coordination.
An electronic health record, also known as an EHR, holds valuable patient information for caregivers.
An EHR holds basic health information from health care settings in an electronic database. Caregivers can avoid at-home medical errors, organize, and stay informed using an EHR.
Whether it’s a paperless calendar or a typical wall calendar, having one that all caregivers have access to is important. This calendar should show appointments, caregiver respite days, and other notable information.
Health care systems like hospitals and nursing homes typically have a record that shows which medication should be administered and when to administer them. Free printable administration records can be found online, with the same functionality and workflows as those used in healthcare organizations.
Caregivers can keep their stress low by utilizing care coordination sites. No need to reinvent the wheel or purchase pricey collaborative tools. Care coordination sites like Caringbridge.com are free, user-friendly, and allow caregivers to personalize their accounts.
These sites enable users to maintain a calendar, add personal messages, offer updates, and share photos and videos to coordinate caregiving tasks. By consolidating medical information, streamlining communication, and calendars all in one area, care coordination sites are an ideal way to coordinate care needs.
When communicating, don’t forget basic methods like text threads and emails. Include all other caregivers, if possible, to keep everyone in the loop.
Whether you’re the primary caregiver or part of a care team providing care for a loved one, caregiving is no easy task.
However, sharing responsibilities, giving and taking breaks, and respectful communication help ease the stress of caring for someone else. Caregiving often takes a village. And, in the end, knowing you’re not alone makes all the difference.
Maria Tesoro-Morioka is a Licensed Registered Nurse in the mental health field for nearly 15 years.
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