Tell Us: What's It Like to Navigate The 19 Caregiving Systems?
We receive pieces from 19 different puzzles that we somehow have to fit into one puzzle -- our own caregiving situation.
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
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 19 different puzzles that we somehow have to fit into one puzzle -- our own caregiving situation.
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.
I'd love to know more about your experiences managing, navigating and advocating with these systems. I've created a short survey to capture your experiences.
Complete the survey and tell us about your experiences.
I'll keep you posted on our survey results.
Thanks for all you do!
Resources
Our next Caregiving Listener Project will happen on March 22. Learn how you can provide support as a Volunteer Listener or receive support as a Story Teller.
Join us in Chicago on May 15, 16 and 17 to to Heal, Receive and Plan.
Enroll in our Certified Caregiving Consultant training program on or before February 24 to receive extra support and marketing opportunities.