Working the System


They met at age 12, married at 21, stayed married for 63 years. And both were gravely ill, together, as they’d always been. We never imagined that. Moreover, they hadn’t either. For the first time since seventh grade, my parents weren’t able to care for each other.
August 2009. Novices in our situation. New to a system. We were caregivers. Financial
planners. Chauffeurs. Personal assistants. Errand-runners. Note-takers. Translators. Keepers and givers of history. Medication dispensers. Eyes and ears for doctors who couldn’t see everything. Advocates for the elderly.
There was hardly time left just to love them.
My mother moved to a rehab facility to recover from physical and emotional ills while Dad healed after open cranial biopsy for a large brain mass. ‘Crisis’ doesn’t feel an adequate descriptor as I look back. I recall adrenaline surging with chaos, overwhelm, helplessness and panic, all coursing through family veins.
Profound sadness set in as we absorbed the probability of losing both mother and father in the coming months. We grieved for them as they faced their own worst fear, one being left without the other after being together since grade school.
Their relationship had endured for 72 years. They no longer had separate memories.
We originally hoped to return my parents with health support to their home nestled near the wilds of Yosemite. It quickly became clear that was unrealistic. Dad’s treatment included weeks of radiation during which he needed outpatient care Mom couldn’t provide and transportation to various appointments hours from their home; she no longer drove even if well enough to do so.
We conjured a second plan with temporary, respite housing for Dad a mile from me and located next door to where Mom was convalescing. Assuming she was physically and mentally restored and he lived longer than the dire prediction of 3 months, we hoped to situate them in a senior-friendly apartment back in the Bay Area “beehive” my dad had tried to escape. I could deliver meals, home healthcare would oversee meds, and Mom could remain mistress of her domain, a key factor in helping her cope. Dad, when able, need not drive more than ten minutes to anything.
Though she came around several times, it was always temporary. Mom wasn’t able to maintain sound health for longer than six weeks without re-hospitalization. A fragile mental health component concomitantly lurked making treatment difficult and emotional support challenging. Dad worried constantly about her, unable to do anything but watch.
Again we shifted gears. A permanent move was made to an assisted living environment with professional staff to support them as family provided for all other needs.
To finance the situation we sold their home, scrutinized income sources and savings, and began to work the system into which we were conscripted. Our goal was to provide long term care should the doctors be wrong in their longevity predictions.
We spent hours on the Internet researching treatment and understanding likely disease trajectory.
We investigated free and low cost third-party services that might help us leverage the system for financial assist. My brother and I became familiar with Veterans Administration services, their aid and attendance program, military service pension and medical care.
We contacted the county and state, learned about California’s Council on Aging and what it might provide. We sought out nearly free transportation services through the county and took steps to qualify my parents. We looked into volunteer offerings through the parish church that served my parents’ new residence. We talked to social services at the hospital where they were treated. We met with an elder care attorney seeking information about my parents’ rights and ours to act on their behalf.
We had my parents sign sweeping Powers of Attorney (POA) documents so we, their children, could act in concert or independently in pursuit of their interests without redundant signatures or total burden on a single child. Brother One handled financial issues, Brother Two sold their house, and I handled all logistics pertaining to medical care and living arrangements.
Armed with all we knew and attempted to learn about the system, we were still ill equipped to wend our way through the top-heavy, overburdened bureaucracies of the state of California, and federal government as related to the Veterans Administration. Stabilizing my parents’ medical and financial situation became my full-time job.
The VA has labor-intensive protocols in place that take months, even years to navigate. Close to one year passed between filing the initial claim and the first ‘aid and attendance’/pension payment to my parents. This time frame was considered a WWII veterans fast tracked process. Even then, the claim was processed incorrectly and the fix took another year. The corrected payment, thankfully so, was retroactive to the date of first filing, by then nearly two years prior.
I had 22 years of experience in medical administration that allowed me to comprehend physician-speak and ask important questions. I could talk knowledgably with case managers, crack the code on health insurance benefits statements and hospital bills, and understood the Medicare system with which I had worked as a liaison during my healthcare career.
My patience was still tested by red tape, errors, and the failure to correct them that I frequently encountered. My experience helped me recognize mistakes, ask questions and make requests but generally served to irritate those to whose attention I brought them. A helpful, effective representative was a godsend who changed the tenor of an entire week.
I could be terse, even short-tempered, with someone who seemed obstructive. There were times I had to lay down the load, take a walk, nap, or zone out with computer games to shake off a day of frustrations due to roadblocks, or transfers to multiple phone agents each asking again why I called.
In all of this, lessons were learned.
I recorded names and numbers of specific contacts within organizations whose knowledge was broad, deep and accurate. They became my contact points.
I worked better with the mounds of paper when done in short bursts with breaks between tasks; I started out with specific, small goals tailored to the complexity of the chore.
In what now seems a prescient moment, I had a year earlier asked my dad to compile documents I could easily find if needed. I included these items:
  • Copies of my parents Social Security cards
  • Copies of their health insurance/Medicare cards
  • Original marriage certificate
  • Original U.S. military discharge papers
  • Original birth certificates
These allowed me to file for the VA benefits my dad had earned during his military service but never used, and his original service documents were needed. A Power of Attorney allowed the VA to work with me.
My mother, as spouse of a veteran, was also entitled to benefits that were/are more easily procured while the veteran is alive. Benefits can be obtained after death but the process, already arduous, is longer and more difficult. We filed on Mom’s behalf as quickly as possible given my father’s poor prognosis.
My parents were proud that they had been on top of things, ‘affairs in order’, wills drawn, durable powers of attorney for healthcare designated, and POAs executed in case of emergency. But it wasn’t until we needed those documents that we found their POAs unsuitable, good only if they were dead.
The document was also sequential. “If Miss America is unable to fulfill her duties, the crown then goes to…”, with power rolling from one parent to the other then on to the kids. In our case, both were out of commission and neither deceased. We had no power to act for them.
We couldn’t allocate responsibilities among us until procuring a different type of POA.
We were fortunate to have discovered this before my dad’s brain surgery so his competence was not at issue, and while my mother was still tethered to reality sufficiently to understand their paperwork wasn’t applicable during incapacitation. We obtained new forms from a local office supply store and a hospital staff notary witnessed execution.
No single individual (including pricey third party senior advocates and attorneys) was more instrumental in assisting us to successfully secure VA benefits than the Veteran Services Officer through our county Health and Human Services Agency. The overworked individuals in this role are themselves veterans and understand the system; they act as veteran advocates as well as being public servants at the community level. Their plates are overflowing.
Our officer was an expert. He explained the VA system, criteria and process. He sat with me while I completed applications. He gave a heads up as to where we could expect bumps in the road and info on how to prepare. He schooled me in the best way to work the system without gaming it, nibbling at the edge of ethics or compromising integrity.
He greased the skids wherever he could and verified we were in process when something seemed out of timeliness. He coached me on language to use when being interviewed by VA representatives, and reassured me every step of the way.
Had I not found him, in conjunction with time to learn the VA system and my own prior medical background, the outcome for my parents would have been very different.
When we had exhausted our own abilities and all avenues in bankrupt California, we had to become even more creative in our research. It was then we learned of the Arizona Long Term Care System. My dad will eventually enter ALTCS. The program will make certain there is no change in his current living situation. His shift in financial status from independent to state funded will be invisible to him and outside observers.
As the Yiddish proverb aptly says, Man plans, God laughs. We find ourselves in uncharted territory once more. My father, now unthinkably four years post-diagnosis, has outlived his wife and his ability to care for himself. His memory is greatly compromised due to the brain radiation that saved his life. He relies on care from professionals and family and is monitored around the clock.
I traded places with Brother One. After more than three years in my care, Dad now lives in Arizona, a state that has gone to great thought and expense to provide for its elderly population in the most dignified manner possible and, coincidentally, where my brother resides. Arizona will pick up the difference between combined VA and Social Security benefits, and the actual cost of maintaining my father. I visit monthly to lend a hand and I manage everything that can be handled remotely. Brother One provides all logistical day-to-day support.
This isn’t a pretty story. It’s not one I relish telling. It was and remains painful to live. It is told with profound disappointment at having to see my parents, now just my dad, down a path he would find humiliating were he competent to understand. But I believe more and more of us will face these challenges and wanted this story told with as much useful information as I could transmit.
Working the system has new meaning in my family. Because of the work we did to find out what’s available we were not only able to shelter my parents well, comfortably, and lovingly, we’ve also eased financial obligations on two subsequent generations that had pulled together to cover the financial needs of its elders.
The Greatest Generation put much of this system in place. Some of them now need to access its benefit, freeing their children to provide for their own old age.
But pursuit of these benefits in conjunction with care for my parents was an all-encompassing quest. The system works but working the system was difficult. Should it be easy in the face of potential graft and corruption? Probably not, but it shouldn’t be this hard either.
Who said, “Growing old ain’t for sissies?” Bette Davis? True, true.
Watching out for those growing old takes grit, too. Work the system. It is work, and all the help we’d wish isn’t there but some is.  Find out what’s there for you and yours. Be creative. Pull your documents together and be sure they’re the right ones. Nurture connections. Get stubborn. Make the system work for you. 


Comments

  1. Wow! The last time we "spoke" you were selling the car. So much has happened since then. I will use your experience as a guide when I should need to go through this with my mother. I will say "fortunately" we didn't have to go through that with my father's illness. He passed before it got to the point that he needed any major care and for that I am grateful. Unfortunately, my sweetheart's father is currently in need of this care. Additionally we live so far away and the burden lands on his wife's shoulders. My prayers go to you and your siblings as you go through this process. Continue to remember to take time for yourself.

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  2. Thank you, Annemarie. I've been a bit spotty lately because all this has happened. I wanted to record it so someone else might use it as a road map. As always, thanks for stopping by. All the best to you.

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  3. Catching up on your postings. You have a beautiful heart, Pamela. Thanks for getting all of this written down to help others.

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    1. Thank you, Nancy. I hope it does help someone else.

      Thanks for popping by for a read.

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