Advocacy Doesn't End When Someone Listens

Right now, we are in crisis mode. My Dad fell and broke his hip a few weeks ago and we have been in rehab chaos ever since. This is with what was supposed to be one of the better rehab facilities in our area and with family members advocating for him every single day. It has been a crash course in how broken the system can be, even for those who have someone watching closely.

When we arrived at the rehab, we expected a place that knew how to handle post-surgery care, medication management, and the basic realities of Parkinson’s Disease. Instead, we have found mistakes that should never happen. The first night, the nurse didn’t know how to admit him. Hours passed before he even had a wristband. They asked if he could walk on his own. He had just had hip surgery.

We shared every detail about his medications. We explained how crucial timing is for Parkinson’s and for my Dad specifically, how drops in blood pressure affect his ability to do therapy and move safely. I even airdropped the Alula document with his allergies, complete medication list, and the full schedule for his daily doses. This is something every family should have ready to share in moments like this. We were promised his 7am medications would be on time. The next morning, they came at 9:45. That delay might not seem like much, but to someone living with Parkinson’s, timing is everything. Doctors and nurses will sometimes talk about an hour of “wiggle room.” To those of us who live with this disease every day, that is just not true. When his medications are late, or when his blood pressure drops because his medications are not given consistently, his whole body slows down and therapy becomes nearly impossible. One day, there was no record of him receiving any of his Parkinson’s medications between 7am and 5pm. That kind of oversight should never happen.

The biggest shock came a few days later. My Dad’s external catheter tube was hooked up to the oxygen pressurizer. When I pointed it out, the nurse and the tech looked confused. I had to show them how to fix it. I am a musician. I should not be teaching nurses how to correct a setup that could have caused real harm. When I brought this up in a meeting with the care team and a C-level administrator, the Chief Nursing Officer shrugged it off with, “We do not have much experience with that particular brand.”

We did have that meeting with the full care team and administrator. When you advocate, it is vital to be firm and factual. I was emotional, but I was prepared. I had notes. I did not throw blame or raise my voice. I let every person in that room speak without interruption, and then I corrected details when needed — calmly, and with facts. I started by telling them I had two goals. One, to make sure my Dad has the best care moving forward. Two, to make sure this never happens to any future patient. Firm and factual. That is how you earn respect in a system that is used to excuses.

There are bright spots. His therapists are incredible. They have been patient, creative, and deeply committed to helping him recover. A few techs and nurses have gone above and beyond as well. It is easy to lose sight of those people when you are fighting fires every day, but they deserve to be seen.

The one unexpected gift in all of this has been my mom. She has Alzheimer’s and we had to move quickly to bring in 24-hour care for her while this was happening. We were all nervous about how she would react. To our surprise, she adjusted beautifully. She visits my Dad daily, and even though she is sad and confused, she is letting her new “friends” help her in ways she never let anyone help before, other than me. That is huge. It has given us one small piece of grace in an otherwise overwhelming time.

If there is anything I can pass on from this experience, it is this: do not assume that good care happens automatically. Even the best-rated facilities make dangerous mistakes. Families have to be present, vocal, and relentless. Keep records. Ask questions. Speak up. And when someone shines, acknowledge them. They are the ones holding the line in a system that often feels like it is falling apart.

Practical Takeaway: Advocating for a Loved One in Rehab

• Visit often, especially during shift changes. That is when mistakes surface.
• Keep a written record of medications, times, and instructions. Share it with every nurse and doctor.
• Store and share your loved one’s health info digitally. Keep allergies, med lists, and schedules in a document you can airdrop or text instantly.
• Note what goes right and who gets it right. Recognize good staff to reinforce the standard.
• Document every concern with dates, times, and names. Facts carry weight.
• In meetings, be prepared, calm, and organized. Let everyone speak, then clarify details with facts.
• Begin with clear goals for what you want changed and what you want prevented.
• Follow up all discussions in writing. Email creates a record that cannot be lost.
• Trust your instincts. If something feels wrong, verify it yourself.
• Remember, advocacy is not confrontation. It is partnership with accountability.