Why Is Caregiving So Hard?

For some reason this week, I did a Google search on “caregiving.” The search produced this question with answers generated by AI:

Why is caregiving so hard?

Hmm… Why is caregiving so hard? I glanced at the AI-generated answers and thought we could do better.

Let’s create a list. I have a few thoughts and would love to hear yours.

1. The 19 Caregiving Systems™ delegate to us as if we work for them. The doctor gives us a care plan for the caree that we must implement. The hospital gives us a treatment plan for the caree that we must follow. The payer gives us paperwork and a run-around when we try to get parts of the care plan and treatment plan covered by insurance. The family system gives us responsibilities without giving us a helping hand. The providers, like home care, often send a rotating stable of home health aides that we must train. Our other jobs (the ones that pay us) give us even more paperwork to complete when we need to take a leave because of a caregiving crisis.
2. The systems delegate to us without giving us what they give their staff: a salary, benefits and time off.
3. The systems don’t have enough time, energy and resources, so we get stuck on their wait lists and in the emergency rooms. The next available appointment can be months away. But while we’re stuck waiting, we still have to provide care.
4. The systems see us “in service of” our carees. Meaning, they treat us as one-dimensional individuals always available for our carees. They overlook all our other dimensions (relationships, work, quality of life, passions and interests) that we try so hard to keep.
5. We regularly navigate the tension between the expectations of the systems and what’s realistic, affordable and logical for us and for our carees. The systems also put us in the middle of decisions that never seem to have one clear, definite choice. We decide, then second-guess and then worry. But the deadline for an answer is yesterday.
6. We can’t easily access support for ourselves. The systems know we’re stressed yet don’t automatically provide an effective emotional support program for us.
7. A disease process is hard on our carees. We watch the suffering, declines and setbacks. As we watch, we feel so much for our carees. A disease process is hard on us, too.
8. We have to learn so much on the fly while we also look for some kind of anchor to keep us grounded.
9. We don’t have enough time, energy, resources, money and patience before a caregiving experience begins. We then have to somehow find what we didn’t have because a caregiving situation demands it.
10. We experience the 14 Caregiving Fatigues™, sometimes several within one situation. We get tired of deciding, worrying, coping, supporting and trying, to name five of them.
11. Because we don’t have enough, we can feel our lives slip away. We grieve for what we no longer can do, enjoy or become.
12. Our experience feels so different than any other life experience that we can struggle to understand the intensity of our emotions. We judge those emotions and then ourselves.
13. Because we don’t have enough, we feel like we’re always letting someone down, including ourselves.
14. We don’t know how long caregiving will last, which means we live with uncertainty and feel like we regularly play a guessing game.
15. The caregiving stress weighs on us while also causing rifts and shifts in relationships that break our hearts. A disease process changes our carees and how we connect with them. We also learn the hard way who can stay with us during a challenging situation that seems to last forever.
16. Caregiving can feel clunky. Folding up the transport chair, trying to organize a schedule and trying to talk with family members about a caree’s needs feel clunky.

What would you add?

(Next week, I’ll share some strategies and ideas to make each theme on this list a bit easier.)

Resources

Our advocacy only happens because you tell us about your experiences. You help us advocate for you to be reimbursed for your work and to receive more effective support.

• Non-Reimbursed Family Caregiver Savings Calculator — Define your work and learn your value.
• The Spending Impact — Share how your caregiving experience impacts your spending habits.
• Community impact calculator — Want to know what it costs your community when family caregivers don’t get the help and support they need and stop spending within their communities? Calculate the impact.

Already shared your experiences? Please encourage other family caregivers you know to calculate their value and share how their experiences impact their spending.