(This was originally written the Summer of 2019 after Paul’s fall and hip surgery)
I have to admit that the past year changed my own perspective on a role of a guardian, of a sister, of an entrepreneur, of a friend and of Stand4Fam. Where I thought the Lord was leading me in all these roles is NOT what I learned and experienced. I gained insight into how our MC/MC insurance works with standardized-organizational medicine and Direct Care Services at the local, county and state levels. My role as Guardian for my brother, became invaluable to him and his future of getting back into his home and his life. Nothing is the same except for Paul and me…together…connected forever.
I will attempt to break this into small bites. LOL
Let me start with being a sister. Paul is blessed with 3 of us. I am the middle sister. Paul refers to me as the stubborn one. I say he should talk! My role as his sister changed to being the strong, centralized caregiver aka “MOM and DAD” combined.
That was tough.
When he fell it was a simple, minor battle with the hospital to get a second opinion and then surgery. The LORD guided me in that HE sent the Hospitalist to conferring with another Orthopedic Surgeon who saw Paul’s whole situation differently. As I met with this wonderful man, he confirmed my reason for a second opinion. (Paul’s fracture would never heal back to the Femur as the on-call doctor said it would) He then went to bat for Paul to get him in with a phenomenal Hip Surgeon who needed to only do a partial right hip replacement. He fit it into his schedule at 9am , Friday morning. His fall happened on Tuesday morning about 8:20am.
The surgery was a huge success, however the hospital stay was not as easy.
Paul’s pain, up to the surgery, was beyond anything a normal person could handle, due to being allergic to codeine based meds. Once we figured out what the issue was, Paul was able to rest and sleep. During these 2.5 days I sang to him, argued with him, cried with him, laughed and comforted my brother…and our little sister. She was able to rest after we settled him down too. I only was able to catch my breath and get paperwork in to my work for FMLA and handle all the other bureaucratic red-tape.
Did I mention that once Paul was admitted to the hospital, he LOST ALL of his Direct Care Services and if he remained in any form of institution he lost his Case Worker. I became his only “administrator-advocate” that allowed him to live his life and advocate for his care. (He was denied his Case Manager, his Case RN, Direct Care manager, Direct Care Supervisor, 2 STAs, 10 Caregivers, his PCP, and his work waiver team) I found this out on the day of his surgery, 3 days after his fall.
My role as guardian became investigator, inquisitor, communicator, email writer, paperwork filler-outer and information gatherer that included making sure DPHHS, his Payee, and Social Security had my Legal Guardian documents on file so I could discuss Paul’s financial and medical items. No time to sleep allowed only brief respites to recharge. I basically lived at the hospital with Paul. When he was awake, I was by his side working with him and his TBI to help ease his worry and fear, as he was in pain and had zero memory of what happened or what was happening. I worked with the hospital nurses, doctors, physical therapists and staff when he was awake and everything else when he slept. My life became Paul and his care.
During those times when he was resting, I did take advantage of the opportunity to talk with the nurse and doctors. I gleaned how important it was to them to see someone advocating so diligently and persistently for Paul’s care.
On a side note: (Stand4Fam’s Mission altered at this point)
Back to the story. The first nurse I talked with, via the phone as I was driving to Missoula, said she was not comfortable with the on-call doctor’s decision and was encouraged to hear that I wanted a second opinion. I also wanted to talk with this doctor to understand his reasoning (took 2 days to hear from him). Perspective is highly important when deciding the future for someone else, not to mention for oneself. I know my brother so well that I knew he would never be able to accept a life of pain with the small hope that the hip fracture would heal. Surgery truly was the only viable option. That it was a partial hip replacement procedure solidified it was meant to be. What happened after the surgery is where it gets extremely intense.
That however, will be shared in another blog