The first 30 days after a stroke feel like trying to survive in the middle of a storm — everything is dark, confusing, and uncertain. You can’t see a way out, and all you can do is keep going. It’s disorienting, exhausting, and deeply emotional. The future is unclear, and the people who are supposed to help don’t always show up in the way you expect them to.
Some offer only their “thoughts and prayers,” while decisions about life-saving treatments, feeding tubes, and long-term care come at you fast. You might be asked to make choices no one should ever face — without the information or support you need.
That’s what happened to me. I was told my mother had a “small stroke” and would likely recover quickly. A week later, a second stroke destroyed most of the left side of her brain. Suddenly, I was making decisions about tracheostomies, feeding tubes, and whether she would live. No one gave me a guidebook. So, I’m writing the one I wish I had.
What I Wish I Had Known (And What You Should Know Now)
1. Stay With Them, If You Can, and Request Medical Records
Why it matters: During my mom’s hospital stay, I didn’t realize how critical it was to be present. I trusted the staff to do what was best — but that trust was sometimes misplaced.
What happened: I later found out my mother had been sedated without us being clearly informed. Her breathing capabilities were unclear, but we were pressured to make decisions about long-term airway support. Staff gave conflicting information. If I had stayed overnight more consistently, I could have advocated more effectively. Also, requested medical records and read doctors’ notes in full. Don’t rely on word of mouth from nurses and staff alone, get the full picture from doctor notes.
2. Understand Patient Rights and Push Back If Needed
Why it matters: A social worker threatened to call Adult Protective Services when I refused an out-of-state facility transfer. I felt powerless and afraid.
What happened: No one reviewed my mom’s rights with me. I was simply told what “had to happen.” I wish I’d known she had the right to remain in-state and receive more local care. You do not have to accept the first option offered.
Tip:
📋 Learn Your Loved One’s Rights
Ask for a patient advocate or ombudsman. Research Medicare, Medicaid, POA rules, disability benefits, and local aging resources. (Start here: NCOA’s Guide to Caregiving) Read up on your state’s Department of Health & Human Services site or this guide from the American Stroke Association.
3. Request Consistent and Compassionate Care
Why it matters: Not every nurse is the right fit — and that’s okay to say.
What happened: Some staff neglected my mom’s hygiene and repeatedly told family members to “just pull the plug.” I wish I had felt empowered to request that certain staff be rotated off her care.
Tip: Ask to speak with the charge nurse or case manager to request changes.
4. Keep Your Loved One Moving — Even When They’re Sedated or Paralyzed
Why it matters: Immobility can lead to permanent damage.
What happened: My mother lost range of motion in her shoulder because no one moved it during sedation. A friend of mine can no longer use her hands due to a similar issue while in a coma.
Tip: Ask if staff are performing passive range-of-motion exercises.
🧠 According to the National Stroke Association, strokes are a leading cause of serious long-term disability. Muscle loss and contracture can happen in days without movement — even for unconscious patients (Stroke Association, 2023).
5. Discharge Planning Starts the Day You Arrive
Why it matters: Hospitals move fast. If you don’t ask, things will be overlooked.
What happened: No one explained how to care for my mother at home. I had to push to get information on rehab, in-home therapy, and medical equipment. She would’ve come home with nothing if I hadn’t asked.
Tip: Ask for a full care plan, including PT/OT/Speech referrals, follow-up appointments, equipment needs, and transportation.
Checklist Resource: Hospital Discharge Checklist for Stroke Survivors (Coming Soon)
6. Make a Master List (and Share It)
Why it matters: You can’t do this alone, even if it feels like you have to.
What happened: Between managing insurance, Medicaid/Medicare, POA paperwork, my bills and my loved one’s bills, finding medical transport, and just taking care of her — I was drowning. People offered help, but I didn’t know what to ask.
Tip:
📅 Make Lists
Create a Google Doc listing doctors, specialists, follow-up appointments, and equipment for reference and another list of paperwork, housework, and all the other to do’s. Share that list with anyone offering to help.
🛒 Create an Amazon Wish List
People are more likely to donate items than offer emotional support. Make it easy for them to send supplies your loved one needs.
Emotional Whiplash: When the Storm Slows Down
I remember the first quiet moment I had to myself — I just cried. The grief of watching my mother fight for her life, the overwhelming number of decisions I had to make, my new responsibilities, and the exhaustion of being “on” 24/7 finally caught up. I finally had time to feel.
This is why support systems matter. Even if you don’t have many people who can help, find the few that can — even if it’s just someone to clean out a fridge, manage paperwork, or sit with you for five minutes.
My Mantras:
“This moment is temporary, this feeling is temporary”
“Small changes = big changes over time.”
“this is not forever, this moment will pass”
Check out: Mourning a Survivor
See also: Celebrating Small Wins
You’re Not Alone — Even When It Feels Like It
The first 30 days are about survival — yours and your loved one’s. And it can feel like no one cares. But here’s the truth:
You do. You’re here, reading this, searching for answers. That’s love. That’s action. And that matters.
This post isn’t here to scare you — it’s here to prepare you. If you’re in the storm right now, just know this: it will pass. You’ll keep learning. You’ll keep moving. And slowly, day by day, things will change.
You’ve got this.
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🔗 More posts to explore:
Beyond Stroke Survival 
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