The Matrimonial Meet-Cute

In May, 2010, I was invited to a wedding in Athens, Georgia. The bride was my sister's sister-in-law and just the cutest belle you'd ever seen. At the time, I was residing 90 minutes away in Marietta, Georgia, the largest suburb of Atlanta and the Home of The World Famous Big Chicken.

My mom, who was living in Athens, called to see if I was attending. To be honest, it was a tossup. I had recently broken off an engagement on New Year's Eve, 2009 (side note: This was only because I had to do it before I lost my courage and not because I was planning to ruin his life AND his holiday. I know how it sounds). I wasn't sure if I felt like driving all that way to celebrate a love for the ages, you know? I was afraid that by the time I arrived, I would be a puffy-faced mess from cry-singing Hank Williams songs on the ride down. Eventually, though, I got over myself and decided to go.

I had purchased a black jersey halter dress that came with a red crocodile-print belt. The belt was killer and totally made the outfit. I couldn't wait to wear it. I also added my perfectly worn denim jacket, just in case I got cold. As I unpacked my suitcase in Athens, I realized in dismay that I had forgotten the belt. It was a fashion crisis! So, low on time and budget, Mom and I drove to the Target. I ended up with a dark denim sleeveless dress and a chunky necklace. I prayed that I would stay warm so that I would not be forced to commit a denim-on-denim sartorial faux pas and end up looking like one of Conway Twitty's backup singers.

The wedding was sweet. The bridesmaids looked like pretty lavender macarons, and the bride walked down the aisle with her daddy. At the reception, I sat with Mom and generally enjoyed myself.

I was especially looking forward to the band. My sister and I had a long history of acting like fools at weddings. Nothing too disrespectful, mind you, just “mild” deviations from classy and socially acceptable behavior. Once, we boldly and visibly raided the food table at a wedding despite the fact that the bride and groom hadn't yet made their grand entrance into the reception. (All of us had been waiting for over an hour at that point, so we figured our protest could best be mounted by eating the meatballs before they got cold. You understand, right?)

I knew that I would have fun dancing with her because we could show off our most ridiculous moves. The band was a bunch of guys in their 50s playing rock and oldies classics. When they tore into the opening chords of "Takin' Care of Business," my sister and I made our way to the dance floor. Over the course of 4 minutes, we cycled through the most ludicrous poses - jumping jacks, Richard Simmons exercise routines (which we had memorized years ago), marching in place - our typical idiotic routine. At some point, Mom got on the dance floor as well and busted out her signature "air-maracas" choreography.

After the song ended, I remained on the floor and swayed along to a Motown song or two. A man in a blue shirt slid in from nowhere and began to dance with me. He was cute - he had beautiful light colored eyes and a lean, sculpted face that made me think of Jonathan Rhys-Meyers. He was also wearing a silver-colored band on the 3rd finger of his left hand. Like, you know, where you might put a wedding band.

I was disgusted. There was an open bar at the wedding. Perhaps a random married fellow had had a few too many and lost his mind along with his inhibitions. I quickly exited the dance floor and sat down, disappointed. As I cooled off from dancing, the industrial A/C unit kicked on and suddenly, I was freezing. Resigned, I slipped my denim jacket on top of my denim dress, looking like a '70s country album cover brought to life. I was ready to leave.

The man walked up to me. He was holding a camera. "Hey there," he said, "you want to see some pictures I took of your mom dancing?" That only added to my annoyance. You could have given my mom two hours and a room full of strangers, and by the end of it, every person in the place would have known who she was. That was not a quality that I, as an introvert, shared or even particularly cared to have.

"Sure!" I said politely, and watched as he scrolled through the snapshots.

At that point, the rest of my family gathered their things, and we made our way to the door.

"Dude! That married guy who tried to dance with me also cornered me and showed me pictures he took of Mom," I said to my sister.

"Um, he really seems into you. Maybe he's not married."

"What kind of guy wears a wedding band who's not married?"

"I don't know," my sister said casually, yawning. "Maybe it's a Jesus ring." 'Jesus Ring' was our sardonic nickname for the 'True Love Waits' rings made popular by evangelical Christian youth. I considered the idea. The idea of a guy, or anyone, really, waiting for marriage...it was sweet, and quaint.

"Ok, I'll go talk to him."

It turned out that the man had parked right next to me. He asked me my name so he could friend me on social media. He also wanted my phone number.

I couldn't stand it any longer. I took a deep breath.

"So, are you married? I'm confused about the ring."

"What?" he said, and looked at his hand. A mix of comprehension and concern washed over his face. "Oh, no, I'm not married!" he exclaimed. "It's a True Love Waits ring."

What was I waiting for?

Soon we were in contact and found out that even though we had met in Athens, we lived within 5 minutes of each other in Marietta. Theoretically, I could have passed him a million times at the Kroger, but we weren't visible to the other until that night. Hmmm...it was almost like it had been planned by the Creator, the One who knows the number of hairs on our heads, before we are even born.

We went on our first date within a week. Three months later, on Labor Day, that man proposed to me, and I married him the next March.

I'm telling you this because today happens to be his birthday, but I am the one who got the gift.

July 15, 2018

Lordy, Lordy, I’m 40

Look. I've never been cool.

In fact, I'm pretty weird.

Here I am, chomping down on my cousin's sweaty athletic socks, happy as can be.

But I count it as a blessing that I've long been encouraged in my weirdness by many of you. In fact, I want to extend to each of you my deepest gratitude. I couldn't have made it to 40 without your friendship, inspiration, fortification, and comfort. Frankly, I couldn't have made it without some of you egging me on and galvanizing me to do better.

(I would have appreciated a warning about this helmet hair, however. I look like a Super Mario mushroom crossed with a Goomba. Or a Roomba, if you need a 21st century reference.)

Turning 40 is one of those cultural milestones that many of us share. How do I feel different at 40? What's changed? Well, I now wake up with even more serious thought each day in regards to my health. Despite the fact that my day-job is healthcare related, I dread doctor's visits. I'm worse than an old dog you have to trick with bologna to get him to take medicine. Despite that near-innate reaction - one I'm sure has everything to do with my distrustful, taciturn Appalachian ancestry - I understand how incredibly blessed I am to have affordable health insurance and access to excellent medical care.

Annually, I can choose to have literally every part of my body scrutinized by healthcare practitioners, from my astigmatised eyes to that weird thing on the bottom of my foot the Ped Egg can't touch. And chances are, no matter what deficiencies they find, modern medicine can treat them. So many people can't say that.

The way I relate to others has changed, too. I've gone from really caring what people think about me to....really caring what people think about me. Before I was saved and became a Christian a few years ago, my tendency to people-please was born out of insecurity. I was given plenty of encouragement growing up, but not nearly enough tools to pursue my goals. (A lot of us who grew up in poverty share this trait.) I thought that if everyone liked me, someone, anyone, might decide to take me under her or his wing and teach me how to be a normal, middle-class American.

(Meh. What does normal even mean, anyway?)

Nowadays, I still very much care what you think about me, but only because it is my solemn duty and joy to represent myself as a follower of Jesus Christ. I want to do a good job of that. No Christian is a flawless ambassador, especially Those of Us Who Inappropriately Screamed at Their Husbands in the South Knoxville Kroger Parking Lot That Time, but I truly hope that when you think of me, you think of someone who genuinely helps others and is eager to share the Good News of her faith (if you want to hear about it).

A poor kid graduating college with a B.A. in Theatre. Attention poor kids: DON'T EVER DO THIS. Pick a major that will get you a job after graduation.

At 40, I'm now eager to embrace my dorkiness. Like, being cool means LITERALLY NOTHING to me. Although, I would like to think I was "adorkable" long before it was cool.

(I wasn’t.)

Dorkiness is disarming. It showcases our vulnerability, and it bonds us in unexpected ways.

Several years ago, when I was brand-new to Atlanta, a "cool" friend's boyfriend invited us to a bar where he was working. A well-known band was in town and hanging out there, eager to see the sights. I was a big fan of the band and completely stoked at the news. After meeting the band, I became part of the caravan who took them to a swanky midtown bar with a VIP section. That evening, I watched one of the members of the band, someone I had grown up listening to and lip-syncing their music into my pink plastic hairbrush, turn a saucer upside down and snort a mountain of cocaine off of it. In the middle of public. Right beside me.

Ugh. It was so disappointing.

I decided that if that was how the hippest, coolest, and most famous members of humanity possibly were going to act, I would gladly steer clear of their potential hangouts and sycophants.

Which began my reign as the Karaoke Queen of dive bars

So I choose dorkdom past, present, and future. Now, nearly all my celebrity encounters are prepaid pictures at the local Cons, where dorkiness is not only embraced, but expected.

Crushin' on Wesley Crusher since 1987

I continue to be grateful for family, now more than ever before. It's amazing to me how something as painful as navigating my Mom's mental illness and dementia has provided the catalyst for my sister and I to grow closer, despite living several states apart. Technology is incredible.

Like we're the only ones who drink at family gatherings

I've also gained a hunger for advocacy and volunteer work. Ben and I weren't blessed with children, and due to some chronic health issues in our family, we're not good candidates to be adoptive parents. And I'm ok with that. It frees me up to find time to volunteer in my community. I am a product of public schools and a recipient of many past and present collective social projects. They helped me immensely over the years, and I would be remiss if I didn't pay it forward. In fact, I would view myself as embarrassingly ungrateful if I did not.

Not pictured: the owner of the laundromat asking me to please stop doing this

Most importantly, I have learned that I can't do it alone. No one can. Each of us has benefited from someone else's sacrifice - whether it was our ancestors, someone else's ancestors, veterans, or beloved friends and family. Some of these sacrifices were made by those who were enslaved or exploited - so my accomplishments, such as they are, are not my own. They belong to those people and to many of you, as well. Thank you. Truly, from the bottom of my heart.

So here's to 40. I'm merely one of probably 10,000 or so people around the globe celebrating today. Even by tomorrow, this milestone will be forgotten by most of us and we'll just get on with life. Which is ok. There is work to be done, for ourselves, for others, for the future.

(We can always throw a party for my 50th.)

June 30, 2018

Faith is the Substance of Things Hoped For, and Possibly Kicked and Screamed For?

So often, I read lifestyle blogs or medical news that detail the effects of stress on our bodies. I have long accepted this but failed to fundamentally change the way I live my life in order to preserve myself. The last several months, however, have provided me with a frightening but fascinating experiment in Y’all, This Is What Happens When Your Body Can’t Handle Any More Stress.

Ben and I both caught the flu and each developed secondary infection in January. That illness was easily the worst I’d had in 20 years. Ben, already at risk for dehydration and complications because of Crohn’s Disease, lost 16 lbs. If you are familiar with our timeline, you will remember that we ended 2017 with 4 psychiatric hospital stays for Mom. She was released the last time on December 23, and as you could expect, our Christmas celebration was difficult. By the time the New Year rolled around, regular visits to her apartment became impossible, and Ben and I were having to manage many aspects of her life. I even had to coordinate ambulance transport and conduct hospital business from my couch at home while suffering from the flu. She had called me and told me some disturbing information, and I felt as though her life was at risk. She was taken again to the hospital on that day, but ultimately wasn’t admitted. Our pastor graciously picked her up from the ER and took her home, since we were too ill to drive.

We were barely recovered when we made the decision to move her into our home. I’ve chronicled many of the challenges we’ve faced on this blog, so you know the unrelenting demands that a caregiver faces every day. Perhaps you are also a caregiver, and you face similar struggles as well.

In any event, I began experiencing heart palpitations in March due to the emotional and physical stress of taking care of Mom. I mean, these suckers were relentless – imagine the sensation of your heart skipping a beat, the sudden rush of inhalation that follows it. Behind it is an electric shock of adrenaline. Now imagine this happening 100 times a day, whether you are sitting or standing or lying down. This became my new normal.

Several of my female friends had also dealt with this same phenomenon. “This same thing happened to me,” their messages would read, “It was really bad the year my sister went through chemo/the month after my husband died/when I had to quit my job to care for my dad.” Every single one of them experienced palpitations while enduring heartbreaking experiences, and every single one of them recovered following resolution of their stressors.

Fascinating! Horrible!

I was encouraged but still frightened. After all, my father died from a heart attack at 48, and I’m knocking on 40’s door. So, I went to the doctor and was sent for both an echocardiogram and a cardiac stress test. Although the testing itself caused me a great deal of anxiety, I remain grateful for my health insurance that provided the opportunity to even go get it checked out. I know there are plenty of women who can’t afford or have access to basic self-care.

After a mix-up with my test results (yes, really), I was given great news: the palpitations, as uncomfortable as they felt, were stress-related. My doctor’s advice was to get up and walk around when I started to feel them, so that hopefully my heart’s natural rhythm would override the irregular rhythm squirted out by adrenaline and directed by cortisol.

I did tend to feel the palpitations less when active, but Mom’s endless anxiety about everything from her food to her future only fed m y own, so I felt no relief. Despite the care of excellent doctors and our full attention at home, she just needed more help than Ben and I could give her. By the beginning of April, we were told that Mom had finally been accepted onto the waiting list of a quality nursing home in Maryville, only a 30-minute drive away. This was wonderful news – until we found out she was number #35 on the list. Since Mom was being cared for at home without major problems, almost every other person on that waiting list was considered a higher priority.

My sister began planning a trip to take Mom back to Ohio with her, just so Ben and I could have a respite. This was no small feat for her, as she is an entrepreneur, and spring begins her busiest season. She and her business partner own a Midwest comic-con, and the weeks leading up to the Con are grueling. I couldn’t imagine how she would be able to care for Mom while trying to manage dozens of volunteers and soothe picky celebrities, but it meant the world to us that she would even try. Even a single 24 hours alone with my husband for the first time in months would have been incredible.

We were used to keeping a close eye on Mom due to her balance problems and medication sensitivities. In late April, she began exhibiting signs of a particular medication toxicity, one that we had dealt with before. She had been taking a medication for seizures since before I was born, and for many years her levels were stable – until the seemingly endless combinations of psychotropic medications were introduced. Sometimes her new meds caused her to need to take more of the anti-seizure drug, sometimes less. It left Mom feeling jelly-legged and woozy. During one recent Saturday drive, she had a seizure in the backseat. This was her first seizure in many years, and it was scary. We had been traveling down I-40 when it started, and by God’s grace we were able to pull over safely so I could get in the back seat with her to assist while Ben drove us to the nearest ER. So, while we had total confidence in her doctors, it was a reminder that within the discipline of medicine there is a definite learning curve.

Sure enough, Mom’s medication levels were toxic. This time, the doctors admitted her to the hospital for stricter observation. Ben and I literally begged every practitioner we came into contact with to help us get Mom placed in her nursing home. Literally. Everyone. Because at this point, we simply couldn’t take care of Mom another day. She wasn’t eating in our home. She wasn’t happy in our home. And her medication levels could not be monitored the way they needed to be in our home.

And it worked. Well, God worked. We were able to take Mom directly from the hospital to the rehab section of nursing home, where she is expected to transition to long-term care soon. It is not a “done deal,” because we are still currently fighting to have her Medicaid approved. Her application has been twice denied for, frankly, petty and false reasons rendered by the Medicaid case worker out of Nashville. It has been so ridiculous that Mom’s local case workers (from an advocate group called ETHRA) have had to contact the Nashville case worker’s supervisor twice for resolution. Yes, really.

So please pray for continued good news on this front. And it is such good news! After her release from the hospital, I wrote a gushing and emotional email to the staff at Parkwest Hospital, who treated her. We were so grateful for their help. And would you believe that within 48 hours of having Mom placed in her new home, where she is safe and well-cared for, my heart palpitations were reduced by 75%? Fascinating!

I’ll be honest – I would like to say, “See? Look how the Lord took care of things! I had faith that he would!” but that would be a lie. My faith in God is real, but I find it much easier to remind others of our Christian belief in His promises than to believe it myself. So much of this doubt comes from childhood poverty and being shown by others’ actions that I couldn’t rely on them. And because of that, I left the Christian church for years, convinced that flawed, human, Jesus-loving people who let me down = Jesus Himself. That isn’t true, but I was too angry and hurt to think differently.

I’ve had several readers of this blog reach out to say that they appreciate my willingness to share such personal details of my life. Thank you for reading and for your encouragement. My words are set aside for you with love because I hope they can help you the way you help me. The subject of doubt seems to be a taboo one among Christians, but I don’t want it to be. Despite my wilting in the Foothills Belk after another horrible bathroom accident, my rage-crying about the Medicaid case worker, or my unspoken fears that this process would never end and my mother would die on my couch anxious and confused, the Lord still answered my prayer. So, while my lack of faith is a sign of my Christian immaturity, this story is, ultimately, a sign of His faithfulness. It is not the kind of story that a flashy televangelist would highlight at the beginning of his sermon. It is the kind of story that I would tell you over coffee, tears ruining my waterline eyeliner and the woefully inadequate brown paper napkins I use to blow my nose, because you are my friend, and this is the truth about how God works in my life.

May 13, 2018

I’m Still Here (I Think)

I’m not sure if I should try to sound funny or serious with this post, so I’ll try a mix of both. If that sounds like an excuse not to craft thoughtful, meaningful prose for the benefit of my ego (and this blog’s very limited audience), well, heck, you got me. I am beyond exhausted. The bags under my eyes not only have bags, they also have carry-ons, a CPAP machine, 14 pounds of smuggled fruit, and a fanny pack in tow.

Ben and I continue to be run ragged caring for my mom. We did receive some wonderful news several days ago – she was accepted into the Choices program that will pay for a nursing home. So now, we have moved to the next phase: finding a nursing home that accepts Choices, that will accept her as a resident, is not too far away, and is not a terrible place to live.

We’ve toured 2 homes already, one in Maryville and one in Knoxville. One was much better than the other. The cruddier of the two smelled strongly of urine and our tour was hurriedly led by the home’s activities director. “Once a month, we have a residents’ council meeting,” she said. “If the residents have complaints about me, the food, anything, this is their chance to talk about it. If they are mad at the staff, the staff can’t retaliate or they’ll be fired.” (Emphasis mine!)

So, in the limited amount of time we have, the best, most important thing you feel is pertinent to add to our conversation about the residents’ meeting is that, if my mom or anyone else who has dementia rightfully or wrongfully accuses a staff member of misconduct, the staff cannot willfully hurt a resident or else they will lose their jobs?

Bye, girl.

I don’t mean to sound flippant about something so potentially serious, but her rushed declaration unnerved me. Maybe after Mom is placed and settled, I can help be a voice against misconduct in nursing homes. But in the meantime, I will be praying for the people at that home and praying that the Lord allows Mom to be accepted into a much better facility.

We’re not sure how long this current phase will last. A couple more weeks, at least. In the meantime, please pray for us. Truly, I know that there are people all over this world who are suffering in ways I can’t imagine, and they would probably give everything to be suffering in the ways I am. However, Ben and I are strained to the limit. We were both barely recovered from nasty bouts of the flu when Mom moved in. Please pray that I can keep my attitude loving and my perspective in check. I consider myself a devout Christian and believe what the Bible says about hardship - that ultimately, God is using this experience to help me conform to the image of Christ (which, based on my recent behavior, deserves only the saddest trombone sound. heather much fail).

~ A Typical Day ~

6:30-7:20 am – Get up and take a quick shower. Mom is already awake and wanting to get dressed. I try to delay her long enough to put my pants on. Get Mom dressed. Have long philosophical discussion in the bathroom after she asks me if God is mad at her. Try to give upbeat response as I put her shoes on.

7:20 am - Forced to skip makeup once again. Ignore all reflective surfaces as they remind me of a horror film where the monster shows up in the mirror. Spoiler alert: THE MONSTER WAS ME THE WHOLE TIME.

7:20-7:45 am – Prepare breakfast for myself and Mom. Mom rejects oatmeal, grits, an egg biscuit, and one of those pancake corn dog things. Finally negotiate her drinking an 8oz Boost.

7:45-8:05 am – Repeat, “Mom, you need to finish your Boost, please,” at least 20 times.

8:05-8:20 am – Quickly eat my own breakfast. Get irrationally angry at a news story about a fundraiser for a special-needs goat. “IT’S JUST A GOAT,” I yell through a mouthful of grits. “THERE ARE STARVING CHILDREN IN THIS WORLD!”

8:20-8:45 am – Ben drives me to work. Mom is already asking if she has to eat her lunch or if she can skip it.

8:45 am - 6:30 pm – Smile through the exhaustion at work. I have to wear scrubs, which feel like pajamas, so this is a challenge. I text Ben to see how Mom is doing. He replies, “I love Amazing Grace as much as the next Christian, but hearing the same 4 bars of the middle of the song hummed over and over for hours on end is enough to drive Billy Graham insane.”

6:30-7:00 pm– Convince Mom to eat a KFC drumstick and biscuit for supper, since it is one less thing we have to prepare. Sit in the drive thru for 20 minutes before I huffily decide that we will just go to Krystal instead. Mom now asking if she has to eat supper.

7:45 pm – Prepare myself an oozing chocolate snack bar with melted Sunbutter on top of it, an allergen-free ode to a Reese’s cake. Sit down to enjoy it.

7:46 pm – Mom shuffles to the bathroom. Seconds later, an emergency is declared.

8:05 pm – After cleanup, decide I want nothing to do with chocolate ever again.

8:06 pm – Haul the transfer bench into our tiny, mid-century modern bathroom. Help Mom with shower and getting ready for bed. Have to leave the bathroom halfway through process because she is adamant that I go plug up her smartphone because it is almost out of batteries. (It’s not.)

8:30 pm – Open my study Bible to the next chapter of 1 Corinthians, which is what we were reading the last time I was able to attend church several weeks ago. Instantly fascinated by the publisher’s decision to publish the Koine Greek in this version. Slowly realize that the text is not written in Greek but that I’m just too tired to comprehend English.

9:00 pm - Now that Mom is asleep on the couch, I shut the door to the bedroom and march in place for 20 minutes to music so that my body doesn’t erode to the point of disease. My tiny pink Ipod shuffles to “Fergalicious,” and I cry when she raps, “I be up in the gym just workin’ on my fitness,” because today, like every other day during the last 2 months, I am only able to shoehorn in a few minutes of physical activity whilst listening to an outdated song on an outdated entertainment cube.

9:01 pm – Sniffling, I reconsider my oozing chocolate dessert from earlier.

9:50- 10:30 pm – Finish cleaning up the bathroom and kitchen, wash my face and teeth. Can stress make your eyebrows grow together? Grab the tweezers.

10:35 pm – Briefly consider that I have not been able to say more than 500 words to my husband today that didn’t include discussion of my mom’s care. Fall asleep in the middle of that thought.

2:00 am – Mom stumbles and falls on the way to the bathroom. Thankfully, Mom is ok but the force from the fall has broken one of the porcelain pretty ladies that belonged to my late grandmother. I’m happy the one that shattered was my least favorite, as my life is better off no longer seeing her haughty expression. She reminds me of the type that would pit her beaux against each other, like Scarlett O’Hara did at the Wilkes barbeque. Good riddance, stuck-up heifer, I think, as Ben and I sweep up the mess.

If you don’t laugh, you’ll cry.

March 12, 2018

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