Tell Us About Navigating The 17 Caregiving Systems

The 17 Caregiving Systems drain us. But we have to manage them.

A personal caregiving experience is exhausting, frustrating, aggravating and stressful.

It's because we navigate, manage and advocate within 17 Caregiving Systems. In many situations, these systems only connect to each other because you make the connection.

For instance, when you coordinate home health care benefits through Medicare, you interact with the:

  • Family System
  • Health Care System
  • Medical System
  • Nervous System
  • Payer System
  • Provider System
  • Relationship System
  • Workplace System

You are the one coordinating between and within these eight systems. Often, these systems don't talk to each other so you have to communicate with each and then find a way to align those systems with each other. You train the home health aide, ensure the home health aide the necessary supplies, get buy-in from family members and your caree to use home health services, get an order from the doctor, ensure the home health agency has up-to-date details about medical history and medications, work with the agency on scheduling visits, make yourself available for visits, questions and concerns, manage relationships between your caree and the home health staff, take time off from work when needed, and ensure your caree uses the home health benefit in full. You also cope with your own stress and worries that the staff will show up when scheduled and provide the best care possible while you also continue to manage your own family and career responsibilities.

The skills required to manage our caregiving experiences are sophisticated and nuanced. We receive pieces from 17 different puzzles that we somehow have to fit into one puzzle -- our own caregiving situation.

The 17 Caregiving Systems are:

Climate
We plan and prepare to manage weather emergencies which could disrupt care providers, supplies and management.

Community
Our neighborhoods and local businesses, like restaurants and grocery stores, can make our caregiving lives easier or harder.

Education
We may need to advocate for a child with special needs or disabilities in the school system. We may help or care for a sibling so need help completing our school work. We also may want to learn as much as we can about our caree's disease process and care needs.

Family
We may manage several family systems: Our own, our caree's and other family members'.

Financial
We manage the current and future care budget as well as our budget to ensure we have what we need today and tomorrow.

Health Care
We manage hospitalizations, short-term stays in skilled nursing facilities and home health.

Legal
We ensure legal documents are up-to-date and relevant. We also may navigate legal situations within other systems, including the family system.

Medical
We attend appointments with physicians and specialists while also providing and/or managing our caree's care.

Narcissism
We interact with others, including family members, colleagues and providers, who lack empathy.

Nervous
Our stress and worries impact us.

Payer
Insurance companies, including Medicare, long-term care insurance companies and other benefits, like Medicaid and Medicaid-waiver programs, dictate coverage of services, supplies and providers.

Provider
We use home care agencies, pharmacies, senior living communities, skilled nursing facilities and home medical equipment providers.

Relationship
We have relationships with our family members, our carees, our workplace, health care professionals and ourselves.

Social
We create opportunities for our caree to enjoy social activities while doing what we can to maintain our social activities.

Spiritual
We have a belief system, our caree has a belief system and our family may have a belief system.

Technology
We use apps and technology with hope that we can make care more efficient and effective.

Workplace
We may have our own career. We all have a caregiving workplace, whether that be our home, our caree's home or the nursing home.

Check out additional videos that describe The 17 Caregiving Systems. We'll continue to add videos.

What's It Like for You?

We would love to know about your experiences with The 17 Caregiving Systems. To learn about your experiences, we'd be grateful to spend about 30 minutes with you to learn how you manage The 17 Caregiving Systems.

We want to connect with anyone who currently cares or previously cared for a family member.

We'll use the stories and insights you share to both improve our training programs and increase awareness of how complicated and complex the caregiving experience is.

Download the list of 17 Caregiving Systems for your reference.

During our time together, we'll follow the agenda, below.

30-Minute Interview Agenda

Housekeeping Issues

We'll begin with two questions about recording the discussion:

  1. Are you okay if we record our conversation? (No worries if you would like to decline.)
  2. If are okay with the interview being recording, then we'll ask: Would you like us to add this recording to our library of interviews available to watch on our YouTube channel and in The Encyclopedia of Family Caregiving on Caring Our Way?

The Interview

Our conversation will include the following:

  1. Please share an overview of your caregiving situation. Please keep your overview to about a minute. Your overview can include:
    1. Your relationship with your caree(s)
    2. Length of time caring and helping
    3. Description of your life (marriage, kids, career, achievements)
  2. We'll ask these questions:
    1. Current family caregivers: Which of The 17 Caregiving Systems do you navigate the most?
      Former family caregivers: Which of The 17 Caregiving Systems did you navigate the most? 
    2. Tell me about one or two situations that required you to navigate multiple systems.
    3. What emotions describe what it’s like to navigate these systems?
    4. What helps you cope when you have to navigate these systems?
    5. After a particularly difficult experience navigating the systems, what would you love to do or have that will help you? (Examples: Time for yourself, a treat, time to vent with another who gets it, reimbursement for time spent navigating the systems.)

If you'd like, you are welcome to create a timeline, diagram, mind map, photograph, illustration or graphic that illustrates your experience navigating The 17 Caregiving Systems. (Watch Denise's video to see the basic visualization she created in just about five minutes.) If you do create a visual representation of your experience, let us know during your interview so you can email us what you create. We'd love to share whatever you develop because it can inspire others to create their own.

Check out the visuals we've created that describe an experience navigating The 17 Caregiving Systems.

Schedule Your Interview

You can schedule your interview with Denise.

Denise

Denise has availability throughout the week, including Saturday mornings.

Our Thanks for You

After completing your interview, you'll receive 50 minutes of free coaching from a Certified Caregiving Consultant of your choice. You can use the free 50 minutes in any increment (all at once or in several sessions).

Join Our Community

Join us on Caring Our Way, our community on Mighty Networks, to receive support during and after your personal caregiving experience. Our free courses offer insights, information and inspiration.

Join us.

Plan With Us

We help you manage after a family member’s diagnosis, work through worries, create strategies to take breaks and consider options for hiring a family member to provide care.

Join us.

Share More of Your Experiences

Tell us about your caregiving stress and the financial impact of a caregiving experience.