Advocating for Care

A Day in the Life of a Caregiver

One of the most vitals parts of giving care = advocating for care. There is no way around it – the health and medical fields are messy messy places. We’re not just talking insurance, or keeping track of appointments, or finding great providers (though those will get their own posts too!). Let’s take a recent experience I had advocating for Mom’s care:

Mom saw a pulmonologist at the end of November because of recurring aspiration pneumonia – that is a doctor that specializes in the lungs. Truth is, we didn’t actually see the doctor, we saw their nurse practitioner – she was great, but it’s good to note the difference, because while we saw the nurse practitioner, it is the doctor who wrote the order for Mom to have a follow-up x-ray to be taken a month from the appointment.

3 weeks after Mom’s appointment, she was not feeling well so I asked her GP to order a couple tests to rule out infections and so forth – one of these tests including an x-ray. Reminder, this is now a week before the follow-up x-ray was supposed to happen that the pulmonoligist had ordered.

Mom’s home health agency administered a urinalysis and a third party x-ray company brought a mobile machine and took an x-ray. At this point, in one month of mom’s care we have 5 players.

Her GP – writes orders

Her home health agency

A mobile x-ray company

Pulmonoglist – writes orders

Nurse practitioner

Since this x-ray was ordered by the GP, they sent the film to her to read. She called after she read the results and said, “Looks clear.” Great news . . . right?

I realize the following week, we don’t need to do another x-ray for the pulmonogist, they should just get that most recent one from the week prior. I call the mobile x-ray company to cancel the follow-up they had scheduled and they tell me it’s been cancelled since they did one last week. I asked if they had additionally sent the x-ray film to the pulmonologist who ordered the original follow-up x-ray. They had not, and needed both the name and fax number to send it to.

“Isn’t that information with the original order?” I asked. “Nope,” they replied.

So I get it for them, except, I don’t know who the doctor was who ordered the x-ray – just some woman or man who signed a paper. I tell them I only know the name of the nurse practitioner we saw and I google their fax number. Fingers crossed.

I don’t hear anything for a week. On a separate note, the nurse practitioner from the pulmonologist’s office, had also said in November she would ask the doctor to order a couple pieces of DME (durable medical equipment) that would assist in preventing mom from getting pneumonia again. Six weeks passed and we had not heard anything about this equipment.

I called the pulmonologists office and left a message regarding this. They call back a couple days later, great . . . right?

Turns out they’re not calling about my message, but about the x-ray results they got when I asked the x-ray company to send them. Turns out there is a problem, and mom needs further testing, a CT to be exact, so they can get a closer view of an “infiltration” in her lungs.

Yes, the GP had said it was all clear, which I don’t fault her for. That’s why there are specialists who also look at these things. But would the specialists have even seen it if I hadn’t called and made sure they got the film?

The office manager I’m speaking with (not a medical professional or nurse) can’t help me with any more information when she calls about mom needing a CT, but just before she signs off, I ask if they got my message, about the equipment.

“Oh right!” she says. “We did, and I think we have resent the order for those.”

“To whom?” I ask. I want to follow up myself.

She gives me the name of the company and says a different company will reach out about scheduling the CT. Great.

I call the medical equipment company she had shared the name of and ask if they have received the order. Yes! They have! Just a couple days ago. Seemingly no record of the order that was sent in 8 weeks ago. But, they’re not sure they even carry the equipment ordered, so an email to a salesperson has been placed to find out what is possible.

Let’s regroup – 8 weeks of care, and we have:

Her GP – writes orders

Her home health agency

A mobile x-ray company

Pulmonoglist – writes orders

Nurse practitioner

Radiological company – for CT

Medical equipment company

Sales person

Phew.

Prior to taking mom for the CT, we fill out required forms – in addition to sending results to the pulmonologist who ordered it, we ask results be sent to the GP as well.

We hear from mom’s GP the following day – the radiologist cannot distinguish between infection or cancer. Encouraging. The pulmonologist must examine closely on their own and get back to us.

I leave messages the following day with the pulmonologist and the medical equipment company. Yay! The sales person with the equipment company calls to tell me they don’t have what the doctor ordered. Luckily they take care of it, call the pulmonologist, get the order to another company who then calls me to let me know they’re processing and will be in touch.

And this is the nature of advocating for care. Keeping track of who orders what, who gets what results, what company has received the orders from whom, when all these things are happening and when we expect to be able to take action.

For some caregivers, this is just the tip of the iceberg. For others, this is a once-a-year annoyance. Either way, being prepared as a care advocate will ensure the best results and care management for your loved one.

Thanks for visiting Give a Care to learn about being a caregiving advocate. What tips do you have for most successfully advocating for your loved one’s care?