Bureaucracy, Shumacracy

“The sorry bureaucracy underestimates our tenacity and patience,” so texted my sister. We had spent our morning collecting information about various local nursing homes for Mom.

I tend to agree with her, although I have felt both desperate and impetuous during the last 3 weeks.

Even after her most recent stay in a nearby psychiatric facility, it was obvious that Mom was worsening, not improving. Our hospital visits with her were brief and depressing, and her phone calls to me nonsensical. One morning while I was at work, she called me to discuss her burial plans. The next day, she called back and accused my husband and I of ‘signing some papers’ to keep her in the hospital permanently. “Don’t bulls**t me!” she said angrily.

After her release from the facility, my husband and I brought Mom home with us and set her up in our living room. Although she was considered medically stable, her short-term memory and ability to handle her personal needs continued to decline.

Her appointment with a well-respected geriatric psychiatry group, twice cancelled because of previous hospital stays, finally arrived. Her psychiatrist, efficient yet compassionate, told us that Mom had had 2 mini-strokes. She also diagnosed Mom with vascular dementia. I was devastated. I was relieved. Above all, the diagnosis helped shed light on why it has been so difficult to treat her other mental health issues. Nearly every other physician she had seen previously had told us she had ‘cognitive decline’ – though to what degree varied.

I had seen copies of Mom’s previous diagnostic testing. The comparison of her written mental aptitude tests, repeated several times over the last 6 months, was heart-rending. A normal score for this test is 27-30. Mom’s most recent score, taken at the psychiatrist’s office, was 13.

“Can you count backwards from 100?” the psychiatrist asked. “No,” she said, after a long pause. “Can you draw a clock with the time at 10 ‘til 11?” “This one always gives me trouble,” she replied, shakily holding the pen and drawing a circle. Most of the numbers were correct, but a few were missing. The hands of the clock did not point to the correct time.

Nearly every minute of the day, Mom needs help. We give her our best, but we are ragged after weeks of unrelenting stress. My husband is permanently disabled and works part-time from home. He makes Mom breakfast and lunch and gives her the cues she needs during the day. When I get home from work in the evening, I prepare her dinner and help her with bathing. I get her ready for bed. She wants to wear my pajamas, so I let her. Some nights she wants me to read to her, so I do. She loves to read and taught my sister and I to love it, as well. Right now, we are reading a young adult book about a girl and her horse. Her concentration and comprehension levels continue to decrease, however, so it is not easy for her. We are blessed that she is docile right now and does not wander in the night.

The strain on my family remains enormous. My sister, husband, and I have started the frustrating and slow process of trying to get Mom qualified for a special kind of Medicaid that pays for nursing homes. She was assessed a few days ago and is waiting for medical approval. The process of application and approval for this program can take up to 45 days. After all, when you’re asking the taxpayers to assume the full-time responsibility of a medically-needy adult, there are a lot of hoops to jump through. Our caseworker, a sweet lady who works 12-hour days yet never hesitates to answer my calls, thinks that Mom’s chances of approval are good. How, in the name of all that is decent and good, can they not be?

If she is approved, then we must find a nursing home that accepts Medicaid and has space for her. Based on our research thus far, it will probably not be in our city, but in a surrounding county, due to demand. One local nursing home representative told us that she had had a dozen calls in the last month with the same request. She had to turn down all of them.

I think my sister is right, though. The bureaucracy underestimates my family. I believe God is faithful to His people, and maybe in Mom’s case, he has gifted my sister and I with the ability to advocate strongly for her and others. My brilliant sister has already crafted a laser-focused spreadsheet detailing nursing homes who take Medicaid in our area for me to research. She created it after calling the local office of aging and getting nowhere. She has offered to share her findings with them. I continue to call and re-call those on her list. I have never received a call back after leaving only one message.

And don’t think I won’t continue to fill out the endless paperwork. Medical records requests, histories, financial reports, whatever. I got news for the pencil pushers – remember in elementary school when the teacher would punish the whole class by forcing everyone to write sentences 100 times in a row? THAT SOOTHED ME. So bring it on. Our family is armored with determination and I pray our steps are protected by the Almighty.

We are the sentinels watching over our wounded.

February 15, 2018

The Journey Continues

My husband took Mom to the emergency room yesterday because we were worried about her hydration and weight. She had been supposedly taking an antibiotic for an uncomfortable-but-common infection for days, but she wasn't getting any better. And she continued to refuse to eat.

They bolstered her with IV fluids and medications and began to look for an available bed in a short-term psychiatric facility. For the first time in two weeks, she was calm. So blessedly calm. After work, I sat with her and we watched the hospital's nature channel together. It was the easily the most normal conversation I had had with her in recent memory, although I did not speak much because my throat was thick with tears. We watched footage of waterfalls, crisp green leaves dappled with rain, and smooth waves gently meeting a riverbank. "Look how pretty that beach is," she said. "Wouldn't you just love to have a boat and sail it out there?"

When my father was living, my mother did not drive. Whether it was due to his concern that she might have a seizure behind the wheel or simply his old-fashioned nature, I do not know. After he died in 1989, however, she had no choice, and was forced to learn in order to drive to work and rear her children. She mastered the skill and eventually became fearless enough to go whipping around the interstate highways listening to Nirvana, the Beatles, or whatever other musical acts my sister and I had fervently discovered.

Driving around Cades Cove and Gatlinburg became one of our freshly-reduced family's traditions. We seldom had money to spend; even the few bucks to park behind the Mountain Mall was a splurge. We might take a picnic lunch and sit by the roadside stream. When it was warmer, the three of us would carefully climb down the rocks and dangle our feet in the water. But mostly, Mom would drive us. It soothed her, and me. It was easier to forget the grief of the loss of a parent and the fear of a precarious life of poverty when measured against the quiet majesty of the Smoky Mountains. Sometimes Mom would sing gospel songs as we drove around, but often we concentrated on the sounds of God's handiwork - a peaceful melody of birds, the whoosh of the rushing water - yet a sense of insulation from the world.

But the traveling, the journey itself, was the method of discovery. It allowed us to reflect, daydream, and plan. I thought of our trips over the years as Mom and I watched the TV together last night, connected by the beauty of this world. Past and present journeys - a human vehicle currently parked in a hospital bed, a mother still in the driver's seat, and a daughter trying to read the map.

January 30, 2018

And in This Corner…The Defender!

Why am I fighting so hard for my mother?

After all, she has many advantages and advocates in her battle against mental illness, yet she has told me she's given up. I don't want to believe this.

I would describe my mother as a fighter - a scrapper.

For years, certain stories about her have been a part of my familial fabric, as comfortable and well-known as the fraying knots on a favorite quilt.

"They told me I wouldn't live past 12," she said of a congenital heart defect. "I sure showed them."

She had a high school counselor who frostily discouraged her educational dreams. "That ole heifer told me I 'wasn't college material.'" Mom graduated from the College of the Ozarks with a bachelor's in elementary education and later met my father in seminary, assured of her ability for foreign missions. "I sure showed her."

"When your daddy was a preacher at Beaumont, there was this one woman who kept trying to pray with him by herself, away from everybody else. Your daddy just didn't understand what she was trying to do. So I took the bus over to her house. When she opened the door, I told her, "You better leave my husband alone."

"I sure whooped her."

Larger than life - perhaps incredulously so. After all, Southerners are fans of hyperbole. Exaggeration so often enhances how we weave our tales. I can't tell you how many times I've imagined the possibilities in these stories. I picture my mother, petite, with fiery auburn locks. She's sitting daintily on a bench, waiting for a bus so she can ride across town to defend her matrimonial territory. Regardless of my personal opinion of her actions, I am overcome by the hilarity of the possibilities. I wonder, what of the denouement? Was she tired after delivering a Jerry Springer-style throwdown? Did she perhaps walk off her anger following the confrontation? Maybe she nursed a wound of her own, a scratch, briefly considering it in the reflection of her Avon compact?

I'll never know the truth about any of it. But it doesn't matter.

My sister and I hold close our memories of her protecting and defending us, like a fighter - a scrapper. We often discuss how to leverage our pain against her inability to engage with us. We understand that she has an illness that is robbing her of her ability to relate. Yet - it's a hard thing for a daughter not to be a daughter anymore. It's a hard thing to be a compassionate yet dispassionate caregiver.

"Remember when she used to care about our lives?" I asked my sister. "I miss that so much."

"I do remember," she said. "I remember the time I got the only B I have ever received. It was fourth-grade music class, and Mrs. (Name redacted to protect this teacher's reputation from the irritation of this writer) told me that I didn't deserve an A because I was some kind of 'gangleader' who had too many keychains and influenced other kids in a bad way."

"She said WHAT?"

I thought about my sister in fourth grade - quiet, loyal, creative, funny. An intelligent and insightful kid, barely a year out from losing her father, usually clothed in oversized hand-me-downs. A kid living in poverty whose teacher hastily mischaracterized her.

"Oh yes she did. And I told Mom about it. So Mom went to the school and talked to her. I don't know what she said, but not only did I end up with an A, but I also got free piano lessons."

Oh, my heart. My heart.

My sister needed a defender. And so my mom got into the ring. A fighter - a scrapper.

I promised myself that I would remember this story the next time I have to steel against the pain. Why am I fighting so hard for my mother? Because she fought so hard for us. Because she taught us to fight. This is why.

January 22, 2018

Running Toward the Fire

I think my mother is dying.

I think she's doing it on purpose.

She is not eating. She's down from 123 lbs. on December 27, her last doctor's visit, to a whopping 111 lbs. yesterday. She lives in the only income-based, independent living high-rise that offers supportive services in the whole state of Tennessee. Twice a day, at breakfast and supper, a worker brings her food and checks to make sure she is ok. "Ok" is, of course, a subjective term. They check to make sure she's alive. Or not wailing or screaming (which she's done before).

My husband and I set up her weekly meds every Saturday. We check her refrigerator to make sure she has no spoiled items. I might help her shower, while Ben will start a load of laundry. Then we try to take her out to do something pleasant - a trip to the Dollar Tree, perhaps. Later, we buy her lunch and try to make her eat it. We drop her off after lunch with tremendous relief and tremendous guilt. In the evening, my sister and I will exchange notes about our daily conversations with her. How was Mom's anxiety today? Do you think she is having delusions? What foods might she want to eat? This is our new normal since my mother was diagnosed with bipolar disorder in October.

My mother has never been easy to forget. Depending on how well you know her, you might describe her as "soooooo sweet!" or "one of a kind!" or "crazy funny!" Those adjectives, while true to varying degrees over the years, are as ancient and relatable to me now as my once-favorite teething ring.

She was a wacky, big-hearted lunchlady for many years at my high school, and then she was a well-loved mother figure to scores of college kids at the University of Georgia. Athletes, geeks, Jesus freaks - she encouraged them all as they ponied up their cash or cards at the dining hall. "There's ole Punkinhead!" she'd beam proudly when she saw an athlete she knew on TV. "He comes through my line all the time!"

She retired in 2014 due to health concerns and went to live in Ohio with my sister and brother-in-law. Then, in true Linda fashion, she decided she hated the cold Ohio winters and decided to move back to Tennessee. That time in Tennessee ended when my sister and I assessed that she was having paranoid and delusional behaviors. So back to Ohio Mom went. My sister helped find her a counselor and took her for a battery of tests. No dementia, they told her. But yeah, there's something. We'll keep digging.

After nearly a year of continued self-isolation and a troubling streak of impulsiveness, Mom took our advice and decided to move back to Tennessee, once again. The way we were able to find a supportive, affordable, and geographically desirable living situation for her in such a short amount of time was miraculous, despite her difficulty coping with the transition.

So we moved her into her current apartment on Eclipse Day. Dear reader - I understand why so many of our ancestors were moved to dread by such a sight. Had I less faith in the sovereignty of my Lord, I would have been cowered by such a harbinger.

Since the eclipse, her depression and anxiety have grown to the point of self-harm. When things stress her too much, she hits herself in the head, or smacks her arm against the concrete walls of her apartment. I document these things, with her permission, and tell her doctors.

She has been hospitalized 4 times since October. Her bipolar diagnosis, brand-new but utterly unsurprising, has been a great challenge for all of us. The psychiatrist we trust the most has also diagnosed her with depression and mild cognitive impairment. Another one, seemingly perfunctorily, added anxiety and "possible" major cognitive impairment. She has had her meds adjusted, she has stopped taking her meds and started them again, she has seen a counselor several times, but sits stony-faced at most doctors appointments while I try to balance my advocation for her with empowerment. We have encouraged her to take advantage of the many activities her high-rise has to offer. We have encouraged her to go to the free day-camp for seniors offered by Knox County. We have spent countless funds trying to give her any support we can - not just my sister and I, but her sisters as well. She has relaxation CDs, coloring books, noise generators, pantry snacks, Boost, a special mattress topper, a shower chair. We have credit card debt and stress illnesses.

She has told me she doesn't want to live anymore. She doesn't think she can get any better. I already manage her money, schedule and take her to her doctor's appointments, dictate her life in so many ways. To a free spirit such as my mother, this must be unbearable. So I guess starving herself is the only control she still has. But because we will never give up on her, my family is forced to bear witness to her pain and her choices just by taking care of her. It has been monstrous.

I do not want pity but I covet your prayers. I have decided to share the raw reality of my life because I do not want anyone in a similar situation to feel as though they are walking alone. You are not. I see you and I pray for peace and strength for you.

At this writing, her story is not over, and neither is mine. There is more to share with you, as I run toward the fire.

January 21, 2018