Cambria couple’s message on medical roadblocks: Don’t give up

I don’t know anybody who can say the world is not in turmoil and transition. But my friends, Jan and Earl Moon, started experiencing it full force beginning Aug. 10, 2015. What might have been his 14,657^th climb up a short ladder ended with him becoming a quadriplegic. Immediately followed by their daughter’s bout with colon cancer. Remember that story? Yeah. Guess what?

It hasn’t ended.

Sometimes you just do not know what you are capable doing until you have to do something. And Jan had to fight to see that Earl got the care he needed. Still needs. Initially, the insurance company wanted him out of the hospital quickly.

“They didn’t even check to see if a facility was accredited! We found out the one they recommended wasn’t!” Jan recounted.

Blue Shield (their insurance carrier at the time) also wanted to send him to a rehab in SLO. “We don’t even take spinal cord injuries here,” Earl’s brother was told when he went to check it out.

Bless her heart, Jan was on the phone probably eight hours a day with insurance companies, health care facilities, trying to make things work. Luckily she had family members with health backgrounds that gave her sound advice and direction that kept her on the move. Mind you, her soul mate was in a grievous state, her darling daughter was seriously ill and their car had died, by the way. …

She persevered.

Because of her determination and the continuing recommendations by Earl’s doctors, the insurance company reluctantly gave in and sent him to one of the very few facilities in the state for spinal care as well as for many others services. It then came down to the private home health providers. The insurance company, mind you, was/is willing to pay.

“We’re sorry, but we haven’t seen any improvement so we can’t keep coming to give him physical therapy or occupational therapy!” first Central Coast Home Health and now Dignity Home Health informed them.

“What kind of progress is he supposed to be making as a quadriplegic?” Jan queried.

What have those private companies told her? “We can train you to do these therapies or your friends!”

Earl reminded the representatives that Jan and friends did not go to school to do this work! If it weren’t for her constant hounding, asking to speak to supervisors, etc., his life-saving therapies would have ended quite some time ago.

Every time Earl has to go to the hospital for various infections and other quad-related afflictions, any progress he has made physically suffers. The hospital is required by law to provide him with X-amount of home nurse, PT and OT visits to try to bring him back up to snuff.

“Do doctors even have any power these days?” Jan wonders aloud. “I don’t think so because even though Earl’s team says he needs this therapy and now even the insurance company is willing to pay — as long as I keep at them — these providers are not doing that!”

What does a day for Jan and Earl look like? She must dress him, feed him, take care of all his bathroom needs, move him into a wheelchair… if there are no complications, this can be up to 4 hours. Not only is this challenging mentally, but it takes a physical toll on Jan as well. Moving someone’s legs and adjusting someone in a chair is major stuff. If it weren’t for Earl’s incredible good looks and disarming wit, well …

But, seriously, countless friends have contributed countless hours and materials to redo their house to accommodate his needs (including a full bathroom remodel) and to help with various therapies. However, there is more. Out of pocket every month, the Moons must come up with $200 for pool therapy (which has been marvelous, she said) and $800 for some skilled care to give Jan a break 2 partial days a week. Otherwise, it’s all Jan.

The latest is Earl is now on Medicare with an Anthem Blue Cross supplement. This will, at least for now, cover Earl’s doctors, although that is partially because Jan reminded them that there are some serious lawsuits against Medicare for refusing continued service to ALS, cancer, spinal cord injury and other more challenging conditions. Jan has also had to fight yet another mean, grouchy, downright bitchy person on the phone trying to get herself a doctor in this county on that latest plan. Really? Geez…

She’s back-burnered her own needs yet again, and she is just waiting to see how long before Medicare threatens to kick Earl out again. “They, too, expect to see progress … whatever that is supposed to look like! At least Medicare is supposed to be better about paying for supplies. We had to buy all the catheters, bandages and all kinds of stuff. I mean, Earl has worked hard all his life, paid into the system … Sigh.”

The bottom line from Jan: If you find yourself dealing with long-term medical issues, “Don’t give up! I’ve pushed, I’ve cried, I’ve talked to everybody and anybody I could in the system. I feel so sorry for people who don’t have an advocate! Earl could have just wound up in a bed somewhere wasting away! It’s not fair! So, don’t give up!”

Note from me: If you’d like to help a neighbor with quality-of-life therapies, consider a donation to the Earl Moon fund at the Pacific Premier Bank.

This story was originally published February 7, 2018 at 10:27 AM with the headline "Cambria couple’s message on medical roadblocks: Don’t give up."