While in NYC for business I received a call from my mother that my father had been admitted to the hospital. I raced home to Connecticut arriving at the hospital to find my father on a gurney in the hallway, pale and connected to oxygen and other tubing, waiting to be wheeled down to testing. I leaned over to kiss his cheek and let him know I was there.

So began my transition from DCpatient to CTcaregiver.

I’ve spent the bulk of the past two weeks trying to coordinate care for my father and support my mother as they struggled to understand and adapt to this health crisis and what it means moving forward. Now was the time to see if I could actually apply all the fancy patient advocacy talk and e-patientism to a situation closer to home.

1st Lesson: Being a caregiver is much harder than being a patient. You get no meds and never get to lie down.

2nd Lesson: Education is not Empowerment.
My parents are very smart people. My mother has a PhD and my father has 2 masters degrees. They are retired teachers – my father taught life science. Still the amount of detailed information on the myriad conditions that my father was battling and the pace and format at which this information was given was overwhelming. Also, information was also given without context. For example, in the huge package of information there was a list of the sodium levels of different foods. BFD. What was the recommended goal for how much sodium he should have each day? What should be the limits for sodium per serving he looks for on labels? My task was not to give them more information (although my husband and I were looking up drug information and clinical guidelines on our phones from the hospital room) but to give them tools to help them digest the information and apply it to their lives.

3rd Lesson: Fragmentation of the healthcare system can kill ya.
Now I knew this from my own experience, but since I have the ability to compensate for the gaps and uncoordination of medical care in my own situation, I did not truly appreciate the potential consequences of not getting it right. The most important and impactful things I did while I was with my parents was to get support services in place from the Visiting Nurses Service, schedule follow up appointments with all of their doctors, and to ensure that follow up testing was ordered, conducted, and shared in a timely fashion. My Dad is on coumadin for example, but the order for the INR (the test to see if his blood is being appropriately thinned to avoid clots but not too much) was not given, and then they expected him to travel to the office to have it drawn. IMHO all of this should have been done before discharge.

I could go on and I’m sure I’ll write about this more, but let me leave this post with . . .
Five Things Hospitals Can Do to Make it Easier for Caregivers, Reduce Readmissions, and Improve Patient Care:
1. Upon admission, prompt for ALL doctor’s names and ALL medication. Have a mechanism to alert all a patient’s doctors that the patient has been admitted. My Dad had eye drops that were counterindicated with his blood pressure meds and the ophthalmologist and cardiologist never knew of each other.
2. Proactively provide timely information and updates to family twice a day. (Luckily I knew enough to skulk around the nurses’ station well before posted visiting hours spotting anyone in a white coat or tie who handled my father’s chart to corner them into an update and plan for treatment. It shouldn’t be that hard.)
3. Conduct training. Don’t just give pamphlets before discharge. God bless my 70-something year old mother for figuring out how to wrangle my Dad’s oxygen tank and foley catheter into the car. Good luck trying to get my transplanted southern African-American parents to instantly transition to a low sodium, low fat, complex carb diet without significant intervention.
4. Schedule all follow up and have prescriptions ready upon discharge. The caregiver may not be able to leave the patient to pick up prescriptions and has too much on their hands to play round robins on the phone with multiple providers.
5. Finally, I’d like to request a 24 hour cafeteria. I appreciate the thought of the “Vending Café’”, but I’m never going to order a seafood salad sandwich from a vending machine and I don’t want to end up in the bed next to my Dad because I passed out from hypoglycemia. Caregivers need their strength to shoulder all the burdens laid there by the healthcare system.

National Family Caregivers Association http://www.nfcacares.org/

National Transitions of Care Coordination http://www.ntocc.org/