Tell Us: What's It Like to Navigate The 19 Caregiving Systems?
Share your experiences with our interns so we can create better programs to support you.
A personal caregiving experience is exhausting, frustrating, aggravating and stressful.
It's because we navigate, manage and advocate within 19 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
Home System
Medical System
Nervous System
Payer System
Provider System
Relationship System
Self System
Workplace System
You (Self) are the one coordinating between and within these nine other 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 and has the necessary space to provide care; 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 (and your caree's) 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. You organize your home so the home health aide has access to the necessary space without completing interrupting your home life.
The skills required to manage our caregiving experiences are sophisticated and nuanced. We receive pieces from 19 different puzzles that we somehow have to fit into one puzzle -- our own caregiving situation.
Share Your Experiences with Us
I'd love to know more about your experiences managing, navigating and advocating with these systems. Our interns from the Community Health Program at University of Illinois are conducting interviews to better understand your experiences.
Learn more about the interviews and schedule your time with one of our interns.
Your experiences will help us create better programs to support you.
The Systems
The 19 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 the families of others who may help.
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.
Home
We manage our caree's home and our home. We may need to fit caregiving equipment, supplies, products and help into our home or our caree's home. We also may need to look for a new home for our caree, like assisted living, memory care or a facility, when care needs at home become too great.
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. We also help our caree cope as well as manage the nerves of family members, friends and others who may help.
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.
Self
You are also a system. You are the only system who interacts with the other 18 systems.
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.
Share Your Experiences with Our Interns
I'd love to know more about your experiences managing, navigating and advocating with these systems. Our interns from the Community Health Program are conducting interviews to better understand your experiences.
Learn more about the interviews and schedule your time with one of our interns.
Thanks for all you do! We so appreciate your input to create better programs to support you.
Resources
Our Virtual Caregiving Advocacy Conference takes place May 15-17. During our virtual event, we'll empower you with insights and strategies you can use to support family caregivers in your community and online. We'll tell you about what we've learned from our work with family caregivers so you can bring our lessons learned into your work. Because we best help others when we first help ourselves, we'll also share ways for you to heal your own experiences. Registration is free. You can earn CEUs on May 15 and 16 for a flat fee of $30.