When the Care Manager Needs a Care Manager (part 1)

I’ve had two kids and various same-day surgeries, but last month was the first time I was a fully dependent, admitted hospital patient. I’m in my 50’s so I guess that makes me pretty lucky. While it was elective foot surgery, I had been in excruciating pain for over a year. I felt as if I had no choice but to go through with it. Trust me, I looked for every excuse and reason to cancel the surgery but I just kept coming back to the fact that the pain was not going away—only getting worse.

I had no less than five opinions. Over the course of the past year I saw three podiatrists and two orthopedic surgeons. And five opinions really are five opinions. How can that be if they were all looking at the same x-rays? One doctor made me orthotics. They were no help. Another offered surgery on my “good” bad foot. When I told him I did not want to be off my feet for 6 weeks he said he could reduce that to 4 weeks. When I said that was too long, he reduced it to two weeks. Are we on Let’s Make a Deal? Needless to say I lost confidence in this doctor.

Doctor # 3 taped my foot and arranged for a handicapped placard so I could make it to the Bruce Springsteen concert. He also admitted that the surgery that I needed was way too complicated and outside of his area of specialization. I appreciated and respected his honesty. Three doctors and still no consensus or plan of action.

In between doctor appointments, I had been to physical therapy, massage therapy and a chiropractor (maybe it was my back causing me to walk improperly). Nothing was working and I was still in pain 24 hours a day. I have a high tolerance for pain but it was getting to be too much. My daily activities were affected. I could not walk even short distances. I was losing sleep because I was awoken several times during the night with shooting pain just from changing positions.

In addition to physical pain, it was starting to affect me emotionally. I was using a cane when I wasn’t around people I knew. I was not sleeping well. I had to say “no” to plans with friends and family. Things like my daughter’s college graduation, which should have been all “happy thoughts,” caused me anxiety because I did not know how I was going to negotiate the walking, waiting on lines and being on my feet for long periods of time. I actually worried about this for months if you imagine.

If you saw me, I looked totally fine. As I already mentioned, I have a high tolerance for pain. I rarely complained. If I looked and dressed “normal” and made the right excuses for not doing things like walking around NYC, then there was nothing wrong because no one could see what I was feeling.

After all, it was “only a foot.” But I needed to figure out a plan. So I did my research (this is my professional “wheel house” after all) and found two highly recommended orthopedic surgeons who specialize in foot and ankles and were affiliated with different New York teaching hospitals. I needed to “go big.” Doctor #4 examined my foot and knew immediately what the problem was. He explained that my ligament had torn. The combination of the torn ligament and the resulting deformity necessitated five different procedures. My foot needed to be reconstructed. It was a huge surgery with a long recovery and he did not want me to make any decisions lightly. He told me to come back in two months so that we could talk again.

When I explained to my husband what was going on, he encouraged me to make an appointment for a second opinion so I went to see Doctor #5. I had to point out twice where the pain was mostly coming from. He talked about bunion surgery. That was the least of my problems. Finally, after me leading him down the path (I did not share that I had already seen someone else) he thought maybe I should get an MRI in case I had a ligament problem. Needless to say, I did not have confidence in Doctor #5 either.

So, back I went to Dr. #4. My husband could not physically attend the appointment but we brought him in remotely. We talked again about surgery. It was an involved procedure with a long recovery so my doctor really REALLY wanted me to think it through. When I went back 8 weeks later I was no better. I brought my husband this time. I wanted to see what he thought of my doctor. He asked thoughtful questions that I had not thought about (I was singularly focused on the recovery time) such as the risk of RSD. I scheduled my surgery before I left.

Even though I am a professional care manager here I was the patient. I needed someone else to think of the questions and to share their opinion. My husband insisted on the second surgical opinion and he was right. If nothing else, it solidified my confidence in my doctor.

As a care manager, I always encourage my clients to ask questions and, if appropriate, to get multiple opinions. I also insist that they have an advocate with them at their doctor appointments. We all need someone who will ask the right questions and take notes. This is even more important when someone has memory issues such as Alzheimer’s disease, is hard of hearing or seeing, or is facing a serious illness. Sometimes it is not the surgery or treatment itself but the side effects and after care. For example, any hospital stay or use of anesthesia can cause their own long-term effects for persons with dementia.

LMR Elder Care can help and be “your person” when you are scared and vulnerable. We know the important questions to ask so that you can make informed decisions regarding small or large medical matters. We also make sure that the information is shared among medical providers and family caregivers. This is especially important when you have multiple providers who do not share the same network. In my case, I knew the questions to ask and how to get the information I needed. But I was the patient this time and I still needed my husband to be MY advocate.