It's Actually 19

We manage, navigate and advocate within 19 systems when we care for family members.

After my mom died in 2022, I decided to count how many systems we manage as family caregivers. I first counted 10. Then, during discussions with family caregivers, I would hear another system that led to adding another system.

I added Education, for instance, after a conversation with a parent about her stress working with teachers at her child’s school, especially in developing and implementing an Individualized Education Plan (IEP). As family caregivers, we constantly educate providers, payers and other family members about our caree’s needs, wants, abilities, declines, quality of life, challenges and wins.

When I got to 17, I thought: That’s it.

I then presented about these systems to probably 300 individuals. My presentation ended with the introduction of the 18th system: The family caregiver.

A few weeks ago, I enjoyed dinner with Debra Hallisey, a Certified Caregiving Consultant and owner of Advocate for Mom and Dad. We began talking about the systems and then shared which systems caused us the most stress. Deb shared the difficulty of keeping her mom home, the decision to move her mom to assisted living and then the stress of clearing out and selling the family home.

Uh, oh, I said. I missed a system.

Home.

I’m not sure how I could miss that one. I moved my parents twice in six months and then helped clear out the family home a year later. I moved my dad a week after my mom’s funeral. Keeping a safe home for my parents that they liked was a huge challenge.

Home.

We may struggle to manage care at home, whether in the caree’s home or our home. Our search for another home, like assisted living, memory care or nursing home, may be difficult, overwhelming and frustrating because of costs, staffing shortages and location. Once we find the next home, we may face more changes because a facility gets new management or closes.

We’re doing all this while trying to keep our own home in good shape. Maintaining our home can feel like the last responsibility we want to manage. Our home, then, may not feel like the haven it once did.

At times, we may be away so much because of caregiving responsibilities that we can feel like we’ve lost our home. We’re adrift without the anchor we call home.

I think (maybe?) we’ve got all the systems now. I also now include the family caregiver in the system count, which means we’re at 19:

What do you think?

Resources

• I hosted a second informational meeting about Dementia Care Family Support Pilot Program on Thursday evening. Watch the archive to learn more. We’d love to have you join us to receive 5 free coaching sessions to resolve 3 care challenge. Enrollment ends on February 10.

• Our next Caregiving Listener Project will happen on March 22. Join me on February 13 at 7 p.m. ET (6 p.m. CT, 4 p.m. PT) to learn how you can provide support as a Volunteer Listener or receive support as a Story Teller.

• I added more chats to our schedule of Events, including chats for only children caring for parents, spousal caregivers and working family caregivers. Check out our schedule and then join us to connect with others who get it.