I Am…Holding Everything at Once
In honor of National Family Caregivers Day
Over the past year, caregivers in the Smart Patients community have told us their individual stories in different ways.
One story was about being invisible.
One was about choosing home instead of vacation.
One was pretending it was morning at midnight just to calm a partner down.
These might seem like separate experiences, but they’re not. They are three expressions of the same reality.
The Invisible Work
For most, caregiving is a first or second full-time job — except it’s unpaid, and vacation time, sick days, and even breaks are few and far between. Often the weight they carry goes unnoticed and unrelieved by others, even as that weight continues to grow.
In our survey of nearly 300 caregivers, almost all reported providing dozens of hours of care each week. Many say they must be available 24/7, ever vigilant. Tasks include...
Managing medications.
Tracking symptoms.
Coordinating appointments.
Dealing with mood changes.
Anticipating emergencies.
Shifting to whatever is most urgent.
Worrying what will happen if they themselves get sick.
The Reshaped Life
Caregivers often reflect on how their life quietly changes.
Read the full story here: https://research.smartpatients.com/resources/vacation-i-choose-home
One post rang a bell with other members by saying, “I am so happy not to take a vacation.”
What used to mean rest and a good time now means packing up medications and equipment, upending established routines, managing bathroom emergencies, worrying about sleep disruption, figuring out where and when and what to eat — and then getting everything back to normal after returning home. Travel and vacations are no longer fun or restorative. Benefits no longer outweigh the stress and extra work.
So caregivers adapt. They create “fun jars” filled with simple shared activities. They find joy at home with puzzles or watching the birds in the backyard. They root for their favorite team watching baseball together.
These caregivers redefine what “healthy aging” means. Less adventure, more steadiness. And sometimes, a quiet grief for the life that once was.
“The hospital gave us a checklist. After that it was me, my spouse, and a pile of reading materials — no one offered a break.”
The Emotional Tightrope
Then there are the frustrating moments.
“My heart wraps around him to protect him — and this vigilance erodes me and my sense of self, too.”
The partner who needs you when you've finally managed to sit down.
Repeated showers to calm agitation.
The sock that’s already in his hand.
The migraine medication missed because lunch can’t wait.
Caregiving for Parkinson’s, dementia, and so many other progressive conditions exists in a strange middle ground between doing too much and not enough.
Is it too accommodating to lie down with him because he demands to go to bed for the night at 4 PM? Is it okay to make a comment while cleaning the floor yet again? Is it too much to ask for five minutes uninterrupted?
Caregivers host their own unnoticed Olympic competitions. They qualify for the decathlon with flexibility, strength, negotiation skills, improvisation, humor, insight, patience, balance, ingenuity, and endurance — sometimes all in one afternoon. To get through it…
They laugh.
They love.
They resent.
They feel guilty for resenting.
They let go of guilt.
They pick life back up again.
The Weight Caregivers Carry
Caregivers carry emotional, relational, and existential weight — not just tasks. Love fuels their ability to both mourn and sustain their relationship, hold fear and tenderness in the same breath, and continue to read their situation and adapt to it..
Caregivers are behind-the-scenes clinical collaborators who deserve to be treated as health-system partners.
National Family Caregivers Day is there to remind others of what it takes to carry the full weight of being there for someone who needs you. We, with our partners at the Family Caregiver Alliance and The Elixir Fund know that your work matters and that your exhaustion makes sense.