I have fought the good fight, I have finished the race, I have kept the faith.
Robert James Hilliard, M.D. passed away peacefully on September 12, 2021, from complications of ALS, surrounded by those who loved him. We rejoice that he is now in His Father’s house. In lieu of flowers, please make donations in Jim’s honor to:
FORT WORTH – Robert James Hilliard, M.D., won his battle against Amyotrophic Lateral Sclerosis on September 12, 2021. His broken body is now whole as he is rejoicing with his Heavenly Father and Savior, Jesus Christ. Jim was born on November 15, 1952, to Frankie Estelle Alexander and Henry Claude Beaumon Hilliard in Port Arthur, Texas. He graduated from Thomas Jefferson High School, where he was elected to the Senior Ball Court each year, was an All-State Offensive Guard and was recognized as an All American Offensive Guard in many polls his Senior year. Jim received a full football scholarship to the University of Texas in Austin.
He graduated in 1975 as a UT Letterman with a degree in Biology. He continued his education at the University of Texas Medical School in Galveston, Texas, and graduated in May of 1979. His General Surgery Internship was completed at Baylor University Medical Center in Dallas. His Orthopedic Residency was completed in June of 1984 in Galveston. Dr. Hilliard began in private practice as an Orthopedic Surgeon in Arlington, Texas in 1984. He had a private practice for many years in Arlington, Texas before being instrumental with a few others, in creating the orthopedic group, Arlington Orthopedic Associates in 1996. AOA is now one of the most successful orthopedic groups in the state.
Jim married the love of his life, Tamara Hext, on May 28, 1988, bringing with this union his precious three-year-old son, Jonathan Blake. They made their home in Arlington and began their family with the addition of Joseph Maxwell in 1990 and Samuel Beauman in 1994. Jim and Tamara built their dream home in 1993 in Mansfield, Texas where they lived for 22 years, raising their kids in the Mansfield School system.
Jim loved being a surgeon and was a brilliant mind, often reading a range of books from novels to biographies to an entire library of Theological Studies. Jim became a follower of Christ in 1999 and became a master at Apologetics and the history of Christian religion. He loved to garden, cook and enjoyed an array of outdoor activities over the years including tennis, marathons, mountain biking, hunting, cross country skiing and eventually golf, his most favorite outdoor passion.
Jim Hilliard loved his family deeply, caring for his mother, Estelle, who lived with them for 15 years until her death in 2007. His biggest passion was his boys. He loved teaching them about life, sports, and most of all about the love of Christ that he became so passionate about. Jim supported many ministries over the years including, Faith in Practice, Reasons to Believe, Search Ministries, Metroplex Women’s Clinic, and most passionately, Children’s Hunger Fund.
If you knew Jim, you knew he had a wicked wit and loved bantering with whomever he was close to. If he picked on you, he loved you. He also enjoyed a healthy debate of thought on serious topics like politics, religion, and philosophy. You had better know your stuff if you tangled with Jim Hilliard because he was most often correct and had a deep knowledge of all things. Jim had many who knew and loved him. Making and keeping lifelong friends was one of his many gifts.
The Hilliard’s sold their family home in Mansfield, Texas, and moved to Fort Worth in March of 2015 to be close to long-time friends and closer to the clubs where Jim loved to play golf. He loved to golf and he made it his main hobby and enjoyed playing with close friends and traveling to different destinations to challenge his game. It was during the game of golf in October of 2017 that Jim began to notice a change in his grip and golf swing. Along with other symptoms, Jim began to fear the worst, that he might have Amyotrophic Lateral Sclerosis and began plans for early retirement. The diagnosis would be confirmed by multiple Neurologists by March of 2018. Jim faced this battle head-on both in his faith and also in his ability to understand all the latest research and potential trials for ALS. Though today there are more promising therapies on the horizon, there was and still is no cure for ALS.
The four years Jim fought ALS were filled with many friends, family, doctors, and caregivers that all made living with ALS so much more bearable. The Hilliard family would like to thank Drs. Appel, Burk, Peralta, for their care, and Drs. Ramsey, Brentlinger, Purgason, and Stiefel for their friendship and care. Additionally, the Hilliard family would like to extend thanks to caregivers Amy Aceveda, Megan Dildy, Brandon Gaddy, Jordan Moree, and James Moses for hours of gentle and kind care, and Beyond Faith Hospice during Covid 2020. As well, the Hilliard family would like to thank Knights of Comfort Hospice and Waldo Rios for holding his hand and making him comfortable until he embarked on his Heavenly journey.
Most of all, love and thanks to the “Tribe”. Special neighbors and friends who loved with passion prayed without ceasing, held our hands, brought food, cleaned, walked our dog, and checked and loved on us daily, there is no place like home. Special love for Jim’s dear friends, pastors, and mentors, Russ Barksdale and Randy Frazee.
Jim is survived by his wife, Tamara; siblings, Michael and Claudette; sons, Blake, Maxwell and Samuel; daughters-in-law, Tracy and Katalin; grandsons, Charles and Cameron; and many more in-laws or extended family members who loved Jim dearly. He is preceded in death by his mother, Estelle and his father, Claude.
Celebration of Life for Dr. Hilliard:
Church on Rush Creek 2350 SW Green Oaks Blvd, Arlington, TX 76017 October 9th, 2021 ~ 11:00am
John 14:1-3 “Do not let your hearts be troubled. You believe in God; believe also in me. My Father’s house has many rooms; if that were not so, would I have told you that I am going there to prepare a place for you? And if I go and prepare a place for you, I will come back and take you to be with me that you also may be where I am.”
This post is from last July 2020 and is updated through Oct. 2020
Blogging has been difficult this past year as Jim’s care has increased significantly! Will do my best. Love to all who reach out to us and support us! XOXO
July 2, 2020. Exactly two and a half years into hearing ALS for the first time. So much has changed. I can’t believe I started the blog with the intent of chronicling life in our family as we fight this awful disease with no cure. The last time I wrote and published was May 2019. The summer of 2019 was a blur, filled with frenzied trips to minor league baseball games from New Mexico to Tennessee to El Paso. Sam’s Big League Debut in Denver with the Colorado Rockies, another trip to Denver before the season ended. Baseball ushered us into the fall with Jim’s 67th birthday and retirement gala, ALS Charity Bash that hosted over 200 friends and family and raised over 125,000 dollars for ALS research for ALS Therapy Development Institute. Thanksgiving and Christmas quickly followed and there was just no time to sit down and write. I tried multiple times to catch up, but before I knew it is was January…February….then Corona Virus hell broke loose.
We were managing pretty well up until Christmas, even though Jim had progressed pretty quickly from walker to Power Wheel chair by Thanksgiving. On Christmas Eve, he took a fall that would completely confine him to his power chair….for good.
So…instead of trying to play catch up and detailing every event over the past year and a half with pics and commentary, I am going to write an essay on what a day in the life of being a caregiver for Jim Hilliard is like, two and a half years post-diagnosis.
I lay in bed, a pillow between my legs to support my back, another pillow over my head to keep the streaming sunlight from hitting my face. Miraculously, both of my rubber earplugs are still intact. A trick I learned a long time ago to help me live with the whoosh and swooshing sounds of Jim’s Trilogy AVAP machine. I am not quite awake. I am still sorting out the dream that is still at the forefront of my consciousness. It is a good dream, so I don’t want to wake up yet. “Whoosh, Swoosh, Whoosh, Swoosh”. The sound slowly brings me to the now daily reality I wake up to every morning. “Oh yeah….we have ALS.” When reality hits me, I take time to savor a few more moments in bed before beginning the routine that Jim and I have created that will make life easier for him. I begin to pray. I try to focus on praising God for who He is and take comfort in knowing that God has a plan for our lives and loves us, even though we are going through a difficult time. I thank Him for our many blessings, I pray that He will heal my husband and if that is not His will, that He will give us the strength to get through each day. I turn my focus on my children and their lives and pray for protection and health for them. I pray that they would seek to know God and I also pray that they too have the strength to accept and manage their feelings about what is happening to their father.
I hear Jim making noises, the ones that signal to me that he is ready to begin his day. I throw both legs over the side of the bed, feel my feet touch the fur of our big German Shepherd, Chivas, and gently slide my feet around his body so as not to step on him. I fumble around the bed for my glasses, buried amongst the covers, my phone, computer, and headphones…remnants of the night before and my efforts to wind down from the day while Jim settles into the Whoosh, Swoosh rhythms of the night. Before making my way to the chair where Jim sleeps. I head to the bathroom, pee, brush my teeth before gathering up the routine items that Jim will need to begin his morning. I always feel guilty that I do these things first, but I learned that if I don’t, the opportunity may pass and it will be a while before I get that chance again.
Washcloth soaked with hot water. Check. Urinal and tissue. Check. Hairbrush, for scratching. Check. I place all my supplies on the bench at the foot of our bed and gently lean over and kiss Jim on the forehead. “How did you sleep?” I said. “Good”, he murmurs through the full-on face mask that he sleeps with every night. In the last few days, Jim has had trouble with his mouth falling open at night and escaping the mask, causing the Whoosh, Swoosh noises to sound more like an air compressor machine. We solved this problem by ordering a chin strap that helps keep his mouth closed at night. Amazon has been our daily friend these past couple of years. I take off the mask, the chin strap, and then make my way around the chair to open the curtains to let the sun into our room. It is a beautiful, sunny morning. One that promises the heat that accompanies most July days in Texas. Chivas worms his way between me and Jim and does his ” I need to go outside” dance. I open the door and the warm rush of air confirms my suspicions of a hot day ahead.
Since Jim fell on Christmas Eve, he has slept in his power chair every night, but two. We tried moving him to the bed via Hoyer Lift, an amazing piece of equipment that I will explain later, but both times he was so uncomfortable both adventures ended in returning to the comfort of the power wheelchair. I think Jim feels more in control in the chair and also supported. So the night time sleep spot is the space between where he used to sleep on his side of the bed and the double doors that lead to our back porch. With the Powerchair and the trilogy machine next to him, that leaves little room for me to navigate around him. I clip the mask to the Trilogy basket, turn off the humidifier that is bracketed on the Trilogy and turn on the power to his chair. Pushing the button to raise him to a sitting position, I grab the hot towel and begin to wash his face and clean his eyes. He always has dry eyes from the air that inevitably escapes from the mask. Another kiss on the forehead and I remove the heavy blanket that is tucked all around his body, cocooning him into the confined sleep space. A quick run to the kitchen to grab his mug of leftover Dr. Pepper from the night before, to quench the dry mouth that greets him every morning. I push the button further, the one that tilts his whole chair forward, allowing him to slide each foot off the foot pedals and onto the floor. The right foot always needs my assistance. I grab the urinal and tissue and do what it takes to help him accomplish his morning pee. A quick drip, dry, and I maneuver the chair back to an upright position. I turn on the secondary Trilogy, the one that lives on the back of his chair and I move the sipper tube around in front of him, in line with his mouth. It has only been a minute or two, but he needs the breath support.
Jim is completely dependent upon me for everything now. Something I could not imagine 2.6 years ago. Amyotrophic Lateral Sclerosis. A.L.S. “Always Losing Something”. The perfect acronym for this disease. He has no use of his arms, his legs, and almost no use of his hands. I wondered back then, “How in the world will we manage ALS, after reading about the disease till I was sick to my stomach at the thought of Jim enduring such an awful condition. The truth is, we manage one day at a time. Never wondering what tomorrow will bring, but only what today offers. It is hard and sometimes I have to force myself to follow these rules. I can only imagine how Jim must feel. It is happening to his body. I am only watching. I dump and rinse the urinal, wash my hands, and affix the toothpaste onto his electric toothbrush, grab the paper spit bowl and head back for the final ritual before morning coffee and computer time. Brushing his teeth is an adventure. I follow the routine he use to do when he did it for himself. Thirty seconds on each quadrant of his mouth. I lay the dishtowel that I keep looped behind his headrest over his chest and begin the task. I have to work hard not to hit his teeth with the vibrating head of the brush….keeping just the bristles on the surface of his teeth. It almost always ends up with toothpaste spray on both of us. I hated doing this at first, but I have come to love doing it. I love that I can take care of the things he cannot. Spit, wipe and we are done. I fold up the blanket that had pooled to the floor. Reach across his body and move his Ram Cell phone holder back into place. Position the Power Chair controller where he can reach it and gently place his hand on top of the modified joystick. It has been replaced with a golf ball to more easily allow him to drive his chair. Once I put his hand on top…he is off, self-sufficient again and in control of where he will go.
Jimmy drives into the kitchen and parks by the island while I go and gather his morning and afternoon meds that I keep in a two-week pill organizer in the laundry room. I separate the pills into matching plastic sample cups, leftover from my Tay’s Gourmet Granola days, and wander back into the kitchen gathering the bottle of pre-made smoothie as I go by. I grab the cup I use for his smoothie and pour the appropriate amount of MCT oil into the bottom of his cup and topping it off to the brim with Blueberry Blast. We discovered early on that MCT oil in the morning all but guaranteed a bowel movement. Because of the loss of muscle in his core, going to the bathroom has new challenges. I have begun to separate the pills two at a time now between sips, as he can no longer swallow the whole batch all at once. We have to be careful not to choke. Choking is scary for people with ALS or PALS for short. Another acronym is CALS. Caregivers for ALS, for future reference.
Pills are down. NO issues this morning. Jim motors his way to the front room that use to serve as my office. We have two large, glass doors that overlook the cul de sac that we live on. We use to spend the mornings on our back porch, overlooking the pool while having coffee and computer time, but now that the summer heat has descended upon us, we opt for the air-conditioned comfort of my office with a view. Still, in my PJ’s and glasses, I head back to the kitchen to make his Flat White Coffee and my black coffee with heavy whipping cream. I grab my computer and phone from the bedroom. While the coffee is making, I take a few minutes to make my corner of the bed, fluff my bed pillows and arrange them perfectly aligned along the back of the headboard. There is something about making my bed in the morning. It makes me feel accomplished. It sets the tone for the day. Bed made, I can do anything! Bed not made, I am a slug. Today will be good. I take a moment to pause and lament the fact that I no longer have a full bed to make. Something I use to hate and I now I miss so deeply my soul hurts. I miss curling up and snuggling alongside Jim’s tall, strong body. I miss it real bad.
I sprinkle Jim’s coffee with cinnamon, grab the stainless steel straw and carry our liquid breakfast to the front room. I arrange the side table, just so that I can sit close enough to Jim to be able to reach across and offer him sips of coffee through the straw. I put his reading glasses on his face and adjust them to fit. We settle into the next hour or so discussing the weather, what is trending on twitter, what is happening in baseball, Covid19, and our crazy world. This part of the morning Jim likes to use his Macbook pro to peruse the internet and catch up on emails and news. Before placing his computer in his lap and opening the lid for him, I place a blanket over his lap and tuck in the edges, making sure his feet are covered. He is always cold and many times a day I am summoned to change the temperature or cover his arms or feet with another blanket. I place his hands in a way that will enable him to use the one finger that he can still control. It is as if he is determined to continue to use whatever is left in his body that he is able to manipulate. I don’t blame him.
We have great friends and neighbors. On most any morning, several of our friends in our neighborhood will be out taking their morning walk. Many of them take the time to stop and wave through the window, bidding us a good morning. They know our routine and that Jim will likely be looking out the window. It brightens our day, always. This completes what I like to call phase one of our day. The Morning Phase.
There is something particularly wonderful about having no place to go and nothing to do. It is what Jim had looked forward to after working so hard for nearly 40 years. Retirement. Doing nothing. He just didn’t think it would look like this. But in spite of being confined to a chair and dependent on me to make him comfortable, we love our life and still feel incredibly blessed. After an hour or two, post-coffee and sufficiently irritated at most of the news we have read, I hear the words I have been waiting for. “I think it is time to go to the bathroom”. Boom. Thank God. Who knew going to the bathroom would be such a joyful occasion. There are some days where going to the bathroom could take up to 4 separate efforts and transfers, making for a long and exhausting day. I grab his computer, remove the blanket and place the controls in his reach and we are off. Jim drives to the bedroom and positions the chair in the place that will allow me to bring in the aforementioned Hoyer Lift. Begin Phase two of our day.
Hoyer lives in the master bathroom when not in use. It probably weighs about 200 lbs and is on wheels. It is electric and keeps a charge for 2-3 weeks which is great. Hoyer can lift up to 400 lbs and manages Jim’s 185 lb frame easily. It has two long legs that are parallel to the floor and also has a lever that will open and close the legs allowing me to roll the lift on either side of his chair. First I have to lay the chair in a reclining position and grab his shorts on either side of his hips. He still has some ability to lift up, giving me a bit of help to wiggle the shorts out from under his butt so I can remove then. This is easy…wait till you hear how I get them back on! Before positioning the Hoyer, I move him into a leaning forward position using the control buttons on his chair arm. Grabbing the sling I straddle the chair, holding him forward while I slide the sling down behind his back till it touches the chair and then pull the long straps down and under each of his legs. There are 4 loops that will connect to the arm that I lower down above him with the Hoyer control. After crossing the longer loops for his legs and wrapping the upper body loops around his chest, he resembles a taco! Once the lift is lowered, I hook each loop to the corresponding locking pin. He cannot move his arms or hands at all, so I gently lift them out of the way of the crossed sling and lay them on each thigh. And we are off. Once he is totally lifted up, I pull out and use the lever to close the legs to a normal position. then I roll him into the bathroom and over the toilet, using the lever again to widen the legs to be able to get around the base. Stepping around the lift, I stand facing Jim, get into a wide squat position, grab both sides of the sling with the handles that are there to assist the caregiver and we aim to land slap dab in the middle of the toilet. This is important because we have a Bidet. This has been the best thing ever! When his business is done, he can do his own cleaning. After he lands, I remove the sling, carefully lowering the arm to just hitting his head. This gives enough slack to remove the loops….many a time I have bonked his head. Learning curves, they are around every corner. I pull the sling out of the way, hand him the remote control for the bidet and then I get out of the way. Sometimes I have Chivas lay down in the bathroom so Jim can give him the command to “Speak” when he is finished and I am alerted to return to the bathroom. While he is going to the bathroom, I take advantage of my time and throw on my workout clothes, Brush my hair, put in my contacts, and put on moisturizer if I can remember. If it is a “Longer bathroom” day, I might get a load of laundry on or the kitchen tidied up from the morning’s activities. Most days the bidet does the job, sometimes I am called in for reinforcements. Getting out of the bathroom is pretty much like going in. I always take the opportunity to give him a kiss on the head or a hug before putting him back in the chair. Sling, lift, roll, lower, undo sling, remove the sling, roll Hoyer out of the way. I have to pay particular attention to making sure the sipper tube is available to him as soon we get the sling unhooked.
The shorts. This is quite an adventure and has changed multiple times throughout the “Chair Life”. I use to be able to just pull them on the way I was pulling them off, but one day he could not lift his hips up high enough. Always Losing Something. So we had to improvise. I have a gait belt I had bought from Amazon that really never did get used because he went so quickly from being able to stand to not being able to at all. It has openings in the ends to hold onto and I had the idea to lay the gait belt in the chair where the back reaches the seat and hook each end to the Hoyer lift arm… I then lift the arm with the controls and it raises his hips up enough so that I can get on both sides and pull his shorts up! Genius! Lower Hoyer, unhook Gait, and pull that sucker out. Feeling kinda proud of my ingenuity :).
After getting Jimmy’s shorts on, we have to do a backward dive in the chair to use gravity to get his butt towards the back of the chair. I tilt him back all the way, he wiggles as much as he can to get back then I get behind his chair, put my arms underneath his back and armpits and do one giant tug, completing this task. With his hand back on the control he heads back to his room and we set up for the day. This is where you have got to know your equipment! So many machines, cords, buttons, etc. He gets in his spot and I begin the setup. He has two Trilogies ( breathing ventilators) one that lives on the back of the chair and connected to the Sipper tube that gives him breath support but allows him to still communicate, eat, etc. The second Trilogy is on a rolling stand and has a Humidifier and Accessory basket attached. that is where I keep the funnel for the humidifier, the assortment of masks, bandaids, a bandana, and a few large hair clips. I know, unusual assortment. I roll the 2Trilogy into my office and plug it in. I also plug in the 1Trilogy so that the battery does not run low. Then I bring the computer bracket for the chair and lock it into place. Jim has an Eye Gaze Edge Computer that is a blessing and a curse. You will understand if you continue to read my “Day in the life of Jim” essay. Eye Gaze lives in a moveable arm that is convenient for when he just wants to drive up to the bar and use the computer. Most of the time, we (I) mount it to his chair. Once the arm is locked in, I lift the Computer off the kitchen stand and mount it on the chair arm. Lock it in place and then plug it into the wall as well. The battery life is really short, so we try to keep it plugged in. The next event is aligning his eyes with the camera. It used to take forever but we have mainstreamed our approach and most of the time we get it on the first try. Sometimes he will slide down in his chair and his eyes will go out of the frame and we have to do the little upside-down act like we did before, getting him positioned correctly in the chair. Works like a charm.
Jim loves to read. Any and everything, but mostly things that really smart people read. The Bible, Socrates, War and Peace…you know, smart people stuff. He read like crazy before ALS and I am so grateful he is content to spend the day reading, listening to podcasts, and watching things on Youtube and the internet. He can do everything with the Eye gaze, using his eyes to communicate with the computer. This comes in really handy when your arms and hands don’t work. It will also enable him to communicate with us if he loses his voice. Something that happens to most PALS. Frownie-Face here.
I put on the mask of his choice because being on the sipper tube all day fatigues him. So we spend at least one total, collective hour a day taking one mask off and trying a different one. I have names for them. We have “Nasal Pillows”, “Pig Mask”, “Upper Lip”, “Full Face” and “Big Mouth”…Yes, they actually describe what each looks like. Day time is usually a dance between “Nasal Pillow’s”, “Upper Lip” and the Sipper Tube. After eye wipes, adjusting and cleaning glasses, positioning the computer, and affixing his mask and humidifier, I pull out the VenaFlow machine and attach it to both calves. This is new. We just got VenaFlow last week. I am really glad though. Jim’s legs and feet swell pretty badly and I have always been concerned about blood clots. This machine helps with that problem. I attach the cloth, calf sized wraps around each leg, and velcro them tight. They are connected by tubes to a small machine that then pulses air into the wraps and squeezes his legs. Jim calls them his “Leg Squeezers”. Blanket gets tucked in, mask in place, one last nose or head scratch and he is good to go. That completes phase two. But rest assured, there is always a call back for itching, mask adjustment, seat adjustment, leg-lengthening, glasses cleaning, oh, and the intermittent need for Dr. Pepper sips. I stand ready. I usually sit close by and read or piddle on Twitter, Facebook, and Fox News….looking for something to entertain or annoy me. Sometimes I take that time to go for a walk or ride my Peloton bike, but I usually wait till after lunch, or what I like to call, Phase 3.
Jim is a creature of discipline or habit and both serve him well. He always has coffee upon waking up, much like me, but lunch is a different story. It needs to be within a certain time frame and, it should be consistent. He likes the same thing almost every day. So unless there is an abundance of desired leftovers from the previous night…we go right for homemade chicken salad, chips, and a boiled egg with mustard.
I try to sit as close as possible and be in tune with his cues of needing another bite and a sip of Dr. Pepper. Lunch is usually uneventful but sometimes we have the occasional choking episode. This always scares to crap out of me! I have learned to stay calm. Assess whether he can clear the blockage on his own, if he needs a sip or if I have to get the Cough Assist machine to aid him in clearing his airway. If he needs the Cough Assist I quickly grab the mask which is attached to a small machine. I push a series of buttons and place the mask over his mouth. He breathes in and forces air out. The cough assist machine is also something that we do on occasion to exercise the lungs. Choking, unfortunately, will be something we have to deal with more and more as he loses his ability to swallow and breathe.
He enjoys watching Youtube videos and scrolling the news during lunch. He can also frequently be caught watching the Video of Sam’s MLB hits that he sent to us after the season ended last year. Sam spent just over a month in the Big Leagues and had quite a show with 7 HRs! The Rockies sent him a collective video of each of his hits…leaving out the walks and strikeouts. It is super fun to watch and in the face of Coronavirus shutdown with no baseball, it fills a tiny piece of the void. We miss baseball. Though now with Summer Camp and the shortened 60 day MLB Season has begun…perhaps our thirsts will be quenched!
Lunch is done, so I clean up and help Jim with round two of teeth brushing for the day and get him hooked back up on the mask of his choice and settled in for an afternoon of podcasts, reading, and video watching. Phase 4 of our day seamlessly accepts the early afternoon hours. Again, I stay close by unless I exercise or go for a quick lap around our neighborhood. It is really getting too hot to take those walks, though I have treasured them because for the longest time of being House Bound due to covid…getting outside was a relief! I do take each afternoon to take Chivas on his daily walk. Gotta take care of both my boys!! Sometimes in the afternoon, we do some of the other necessary grooming maintenance for Jimmy. I shave him, electric razor only, as I have nicked him a time or two trying to use the razor, clip his nails, and do the ever-present nose and ear hair grooming. The entire day is sprinkled with mask adjustments, head and nose scratches, glasses cleaning and adjusting, and a few pee breaks. Controlling the temperature is another elusive event so we make do with blankets to keep the air from blowing on Jim. We also make time each day for his physical therapy. It doesn’t take too much time because we are limited to a small range of motion. He is very stiff and his shoulders are freezing up. He can’t move his legs so I do that for him to help circulation. I have a routine. Leg lifts, pushing his leg up and into his hip, 10 times on both sides. Flex the ankles, same thing. I do a range of motion for his shoulders on both arms, then the elbow, and finally wrists. I am hoping I am doing enough. You just never know with this damned disease. I hate that it has robbed us of the Jim we know and love, but the inside is still the same. Only the outside has changed.
Phase 5 only happens every other day! It’s “Bath day” for Jim. Don’t judge! Really, he doesn’t sweat and he is constantly cold. In all honesty, the real reason we try to space it out is that taking a shower is exhausting for him. Fortunately, for now, we can still go to the bathroom and shower without the breathing machine. But eventually, we will have to figure out a solution for bathing while attached to the Trilogy. Shower time is accomplished much like the drill over going to the Bidet. First I get his fresh clothes laid out, make sure the Shower chair is in position with the wheels locked, then I get Jim ready. Clothes off, sling goes behind him and in all his glory, Hoyer and I carefully roll him to hover above the shower chair. I assume the same wide squat stance and hold onto the handles on either side of the sling. Deep squat until he is securely in place. Then I unhook the sling, remove it, and roll him to the spot where the showerhead can reach him. I leave him briefly to get all warmed from the hot water. A toss of my clothes and the race to finish both his and my shower begins so we can reverse that order and get him back in the chair where he can breathe fully again. I love our time in the shower. It is the only time I can truly be close to him. I always take advantage of that proximity to get in a good hug or two and a couple of real (on the lips) kisses! With Jim in the chair, 24/7…it is as if he is on his own island. It is very hard to even hold his hand because sitting close is just not an easy option. We have been robbed of the intimacy we use to enjoy, but we are closer than ever and I don’t think I have ever loved him more than now. Late afternoons around our house can get interesting. At least one day a week our friend Bob Ortegel comes for a weekly martini with Jim. He has been adamant that this occurs each week…and they have completed over 57 weeks in a row. We had a special celebration when they celebrated 52 weeks of martini visits! His wife, and my friend Kerre, has been coming the past few weeks and we join in the fun. Several nights a week we enjoy the company of our close friends, who never seem to tire of bringing food, cooking at our house, and joining in on the regular practice of ordering from our favorite restaurants via Favor. We are blessed with good friends and family. Visits from Blake and our grandson Charlie are sprinkled throughout these past months, as well as our son Max, Facetime calls with Kat and Sam, and a continual revolving door of our friends. So much love for the Lawrences, Veigels, Ortegels, Guions, Loverins, Kay Jordan, Gills, Craines, and Barksdales. On the nights we have no social plans, I cook our weekly selections from Hello Fresh and Jim and I hunker down to watch our favorite TV series and shows. Dinner is the 6th Phase of our ALS centric day.
Dinner is always accompanied by a wonderful selection of wine! Jim has been a collector for years and he keeps our wine inventory safely organized in a wine app on his computer. This is Jim’s important job while I cook or we entertain friends, he has to make the selection from the wine cellar and delete it from his inventory online. One of the guys visiting or I will go pull the wine from the cellar, open it and let it breathe. The one thing Jim can still do for himself is holding a special, plastic wine glass. We use a tall, stainless steel, rubber-tipped straw. I have to help him wrap his fingers around the stem and place his hands just so on his belly and he can still sip his wine on his own. The dinner part is my job. We sit close and I put on his acrylic tray that attaches to his chair. I am working on mastering the dance of giving him a bite and taking a bite for myself….sometimes I forget to eat and other times….I get carried away in my own plate and Jim is left with his mouth open! I am not perfect! Dinner and TV comprise our final part of our day, the 7th Phase. After two or three episodes of binge-watching our favorite shows we head to the bedroom to settle in for the evening. Since Jim does not feel comfortable in the bed, he pulls up next to the bed and we begin the bedtime routine. Hairbrush to scratch his head, a quick pee, another round of polishing his choppers, a well-fitted mask and he is good to go! I tuck him in all around the edges and shower his face with kisses where they can be placed. Again….I hate that I cannot curl up and sleep next to my love. Instead, I get my computer, phone, headphones, and snuggle into my side of the bed. Take advantage of the Sleep Number bed we purchased right after Jim was diagnosed and I elevate my head and feet and settle in for some News, or more Twitter and Facebook. I like to scour the internet for news on the Colorado Rockies or on Sam. I usually fall asleep this way and wake up to find everything has slid off my lap. I usually hop out of bed, check on the dog and Jim, and then really go to sleep with my rubber earbuds snuggly in place. Another quick prayer of thankfulness and requests for health and safety for all whom I love and then, eventually, I fall asleep to the Whoosh and Swoosh sounds of Jim’s slumber. I am so grateful for each day. Tomorrow will be similar and I pray we have many more days like this, but ALS will continue to spread its ugly fingers across my husband’s body, robbing him of the most basic of abilities. And robbing me of my husband. A.L.S. ALS is brutal…Always Losing Something.
August 6 update: Each week we can document some kind of change or loss. As I was reading over this yesterday, I realized we have already lost a few more abilities. Jim can not use his laptop at all anymore, so only Eye Gaze Edge. He has developed a blood clot in his left leg and is now on Eliquis ( a blood thinner) to help dissolve the blood clot. We have been given a beautiful, high end hospital bed by a sweet neighbor and we tried it out for a few hours one afternoon, but he is still more comfortable in the power Chair. We may need it soon though, so the “Bentley” stays. We also have brought on Hospice to help us deal with health issues that arise and that will hopefully keep Jim out of the hospital. In these Covid times, we definitely don’t want him to have to go to a hospital! Right now we just see a nurse once a week and they are now supplying us with all meds and supplies. Super helpful! Jim still has his wicked sense of humor and his never ending desire to be the smartest person on the planet! He is and always will be the love of my life.
October 7 Update: Always Losing Something. About a month ago, Jim began to need breath support continuously. In the past, he has been able to sustain for the duration of going to the bathroom and taking a shower….both use to be about 10-15 minutes. He can no longer go without forced air support for more than a few breaths. So now, for each trip to the bathroom, we take along Mr. Trilogy and his nasal pillow mask. Pretty easy for the toilet area, but tricky in the shower. Thank God for long hoses!
It is hard now to detect physical changes in Jim, as he has lost all use of his legs, arms, hands and even fingers. He can still drive the Power Chair, as long as I place his hand on the golf ball drive stick and make sure his elbows are in the right place on the arm rests. The Eye Gaze Edge is more and more his best friend…whom he fights with daily…more like a brother! Jim’s voice has deteriorated significantly too over the last few months. Sometimes it is barely a whisper and he is very hard to hear…other times, completely garbled and difficult to understand. We are so grateful he can still speak and we can understand him! He is still eating and enjoys good wine and bourbon…and of course, weekly Martini’s with Bob, though I am not sure he does more than hold the plastic glass, that his Martini with olives encases. It is the symbolism and the friendship that is most important. Today is actually Martini Day and number 69 ( weeks) in a row.
Sam is also home from his MLB Season as the Rockies did not make the Covid Playoffs. We are so grateful that he returned home healthy and safe! It is wonderful to have another set of hands and a warm heart around the house. We are, each of us, looking forward to the coming weeks and Sam and Kat’s upcoming wedding in December. Praying that things will stay “status quo” until then….
How does this month come around so quickly? Wasn’t it just Christmas? Could it be that it is my birthday and I have gone nearly 56 times around the sun? Or maybe because our lives changed dramatically with my husbands diagnosis of ALS, Lou Gehrigs Disease, and there is still so much work to be done. There is still no CURE for ALS and time is not on our side. Last year, “Our Tribe” was amazing. Please consider giving again this year to help find a cure for ALS!
Once again I am laying it out there that Research is desperately needed for those facing Amyotrophic Lateral Sclerosis (ALS), also commonly known as Lou Gehrig’s disease. It is devastating. It slowly kills the body’s motor neurons, paralyzing every muscle in the body until patients lose their ability to walk, talk, eat and eventually breathe. Today, there is no cure. Life expectancy is 2-5 years. In short, ALS sucks.
We want to help raise awareness and funds and we have chosen ALS Therapy Developement Institute (ALS TDI) as our Charity of Choice. Here is why.
Our family wishes to see the day when no other family has to go through this experience of battling ALS. We are committed to help raise awareness and funding for ALS research. The ALS Therapy Development Institute and its scientists actively discover and develop treatments for ALS. They are the world’s first and largest nonprofit biotech focused 100 percent on ALS research. Led by people with ALS and drug development experts, they understand the urgent need to slow and stop this disease.
We also have a new way to give back to the ALS Research Community! We have launched a T-shirt website called “Team Hilliard Threads” where we are offering a few T-shirt designs that People living with ALS can customize for their Team or fundraising event and we will donate every dollar through the month of May back to ALS TDI. You can contact us directly to upload your personally designed logo!
The strategy to fight back against ALS is simple. Find ways to slow down the progression while research can continue to advance towards either halting its progress or even reverse it.
Flying through the air? One handed push up? Nope, diving catch during Spring Training for the Rockies, March 2019. I will work on detail blog updates from January 1, 2019 to first week in April, including Jim’s surgery for a feeding (Peg) tube on April 2. Stay tuned…
SO finally….THE UPDATE!
I wanted to write an update on all things Hilliard for the first quarter of 2019 and before I had any inspiration to peck out words and feelings on WordPress, it is the middle of April.
First, I will update on Jim’s Surgery April 2. The night before, we had a lovely Hilliard family gathering for dinner. We always love the support we receive when we are there for medical trips. Thanks to Mike and Claudette for the constant assistance and company while we were in the hospital. We love you all so much! After a 5 hour wait in the admitting waiting room, we were finally placed in a room with a really sweet guy named Brian, who was also getting a Peg tube placement and has ALS. His sister Missy was with him and we began that bond that only ALS patients and families can understand.
Brian and his sister Missy.
Claudette, Jim and Mike, leaving hospital.
Hilliard Family meal!
Surgery went great, but no one informed us that this would be a two step procedure. He got the peg tube, along with about 18 inches of tube attached. Not what we were expecting! So as we manage the intricacies of cleaning and flushing the hose…after eight weeks we head back to Houston to have the low profile, Mikey Button placed. Should be super easy, outpatient and only a few minutes. Fortunately it is the same time we are scheduled to go to Houston for our quarterly ALS Clinic in June.
January: The beginning of 2019 was smooth and easy. The highlight of the month seemed to be the arrival of our Sleep Number Bed! We love our remote control dual king bed, complete with heated foot of the bed and adjustable firmness. Watching TV in bed was never more fun! The end of January meant that Sam would pack up and leave for Scottsdale, Arizona. We love having him home for the off season, and this year it was too short! He packed up his truck and drove to AZ on January 27. We already were counting the days until our visit to AZ in March!
February: We traveled to Houston for our ALS clinic visit on February 7. We always stay the night before in the Marriott Hotel, adjacent to the Houston Methodist Hospital, so that we can arrive first to line up for Clinic. Doors open at 7:30, but we have learned that it is first come first serve! We have met several friends that we continue to stay in contact with in those precious hours before the door opens! Clinic environment is very social and lots of people catching up and having coffee and lunch provided by volunteers. It is a well oiled machine, and within a few hours, we have seen every discipline needed at this time. We usually see the Neurologist, Pulmonologist, Occupational Therapist, Speech Therapist, Physical Therapist and a few others that won’t make much sense to you readers! After meeting with the Neuro Doc, she recommended that Jim go ahead and schedule for the Peg Tube Placement, since his respiratory functions had slowed a bit. So we scheduled it for April 2. They are very pro-active at Methodist ALS clinic and we have been pleased to be a part of this clinic so far. Four times a year is no big deal and the cherry on top, is a Hilliard family dinner with our Houston Peeps, each visit!
Tracy and Sam both had birthdays this month, Tracy on the 5th and Sam on the 21. We have enjoyed our visits to Blake and Tracy’s to see Charlie and he is growing and changing so much! We would have to wait until our visit in March to AZ to celebrate with Sammy.
Charlies own ball pit.
Loving Papa Jim’s Apple watch.
March: Could not come soon enough! We loaded up the car, complete with R2 D2 and enough clothes to stay 6 months! We leased a VRBO that was really close to Old Town and enjoyed nearly two weeks of MLB games and dinners with Sam. Claudette came for a full week and our friend, Don Guion also flew out for a few games. My friend Tana Herrington lives in Scottsdale and we always get together for a game or dinner out. We always enjoy our time with Tana and Brent and they introduced us to a new restaurant that will surely be a favorite going forward! Virtu Honest Craft. Simply wonderful. Tana and I spent one day going to the Botanical Gardens ( amazing cacti!) and had a lovely lunch on the patio.
Baseball of course was the main attraction, and we got to see Sam play against the Rangers, Cubs, Brewer, Angels and Giants. One highlight for me was having the privilege of meeting Steve Gleason, former New Orleans Saints Football star and now current ALS patient and warrior. He happened to be at a Chicago Cubs game vs the Colorado Rockies, and our son Sam was playing for the Rox. Since Jim’s diagnosis of ALS last year, I have met many people who have this incurable disease in various forms of progress. I have never met anyone who uses the Eye Gaze technology and is totally immobile except for his eye movement. I have followed Team Gleason for a while now and have admired his work on finding a cure and his collaboration with updating technology to help patients maintain their voice. He was recently awarded the Congressional Medal of Honor, by President Trump, the first NFL player to receive this honor. What a treat to meet Steve and his sweet family and at a game of baseball that we both love. The second photo is of Steve’s son, holding his daddy’s hand over his heart while they played the National Anthem. I am NOT crying….your crying!
Steve’s son during National Anthem.
The last week was a bit more boring for us, but not for Sam. He got to go with the Big League team for a special exhibition game in Monterrey, Mexico against the Diamondbacks for a two game series, sponsered by Major League Baseball. He said it was super fun and he got to fly on the Rockies plane and see a part of the world he had never been to. When he came home late Sunday night he came down with a bad cold and was sick for several days. We did spend our last night there having a lovely dinner at Elements with a beautiful view of Camelback Mountain and had a late Celebration for Sam’s 25th Birthday. We love our time in Arizona.
We arrived home on the 15th of March just in time for an awesome St. Patricks day meal with sweet friends! By the end of Spring Training, Sam had once again earned a promotion and was placed ont the Rockies AAA roster, The Albuquerque Isotopes. He still remains on the 40 man roster and is a call up away from his first MLB game during the season.
We enjoyed celebrating Charlies First Birthday at Blake and Tracy’s home with a lovely party with family, presents and cake. The pictures tell the story so much better! Happy Birthday Charlie!! “Being One is SO FUN!”
Happy First Birthday!
Papa Jim and Tay Tay
Precious family, Tracy, Charlie and Blake.
Fun with Flags.
Charlie in his Colorado Rockies Gear!
April: On April fools day, we made the trip to Houston to have the Peg tube placed and you already know that story.
The only other milestone we marked in April, was the one year anniversary of Radicava Infusions. Jim began the two weeks on, two weeks off rotation of daily Radicava infusions on April 15, 2018. He still drives himself to North Richland Hills each infusion day and I have discovered, he really likes flirting with the nurses! I think that might be why he doesn’t want me to go! We still really don’t know if the medicine is slowing the disease or not, so we are going to do it as long as it makes sense. Though Jim has seen some decline in function across the board, ALS still seems to be progressing slow and we are so grateful for that!
There are so many Scriptures that we hold onto, but this one is a staple.
5 Trust in the Lord with all your heart,
and do not lean on your own understanding.
6 In all your ways acknowledge him,
and he will make straight your paths.
7 Be not wise in your own eyes;
fear the Lord, and turn away from evil.
8 It will be healing to your flesh[a]
and refreshment[b] to your bones.
We LOVE OUR TRIBE! I cannot say enough about our friends and family who continue to pray for us, love on us, support us, feed us, entertain us and all around are the best tribe any one could ask for! We love you all and are especially grateful for the Lawrence’s, Veigel’s, Ortegel’s, Loveren’s, Guion’s, Barksdale’s, Bulick’s, Horton’s Harris’s, Ramsey’s Brentlinger’s, Crudup’s, Personetts, Craines, Gils, Nicholson’s, Deskin’s and Minnerly’s. Without mentioning all our family, I am sure I am leaving someone out…but if you are in our life in any way, you are appreciated.
Some fun things are coming to support awareness for ALS and the fight for a cure….May is ALS Awareness Month, and although we are VERY AWARE of it…..we want others to know how they can support us, and all of those livng with ALS, in this journey. Stay tuned!
What an amazing 2018 we have had! When the year began I had a sense of dread in my heart….we were facing the potential diagnosis of ALS (Amyotrophic Lateral Sclerosis) and I just could not wrap my mind around this upcoming year being a good one! IN spite of the awful diagnosis, we have had a wonderful year. It is not without some hard times and fearful days, but overall, blessed and beyond what we deserve! This is one of the lessons of life I continue to fail to learn!
5 Trust in the Lord with all your heart
and lean not on your own understanding;
6 in all your ways submit to him,
and he will make your paths straight.
The BIG 66!
As I look back over this year, so many good things have happened and we have met many new friends along the way. I just referred back to my earlier blogs and we have been incredibly blessed! Since I last posted in early November, we have celebrated Jim’s 66th Birthday! It was very low key with a lovely dinner with Sam and Max. Happy Birthday Jimmy….I have got to get better at this photo thing!
November 20th was the Rule 5 Draft Deadline. We waited patiently for the call from the Rockies. If they did not call….it would mean Sam was not added to the 40 man MLB Roster and would be eligible for the Draft on December 13.
Held each December, the Rule 5 Draft allows clubs without a full 40-man roster to select certain non-40-man roster players from other clubs. Clubs draft in reverse order of the standings from the previous season. Players who signed with their current club at age 18 or younger and have played professionally for at least five years are eligible to be selected, as are those who signed at 19 or older and have at least four years of professional experience.
Sam got the call around noon and we were all together for the news! He had been protected and is now on the Rockies 40 man roster. One step away from the big leagues! Article link below.
Thanksgiving was quickly around the corner and we enjoyed having 18 family members and friends over for Traditional Turducken and all the fixins! We had the Hilliard’s from Houston, Claudette, Mike and Andrea, the Hext’s from Dallas, Greg, Kim, Lila, Preston and his girlfriend Claudia. The Nickles from Allen, Lon, Tiffany, Joseph and Grace. Blake, Tracy, Baby Charlie, Sam, Max and his friend Tiffany. Friends, Gary and Linda Lawrence and Tom and Ruth Bulick stopped by for drinks after dinner. We are truly blessed with friends and family.
At long last…Graduation!
December rushed right on in and we put up our Christmas decor and front door wreath. We skimped on the outdoor lights this year, but that did not keep the Christmas spirit away from our home! Before celebrating the birth of our Savior we had to roll out the red carpet for Max! After a long road of college, no college, work, then work and college and then full time student for the past 1.5 years, Maxwell got his BA in Journalism from the University of Texas at Arlington ( My Alma Mater!). It has been along time coming and he as worked very hard. We are so proud that he went back to school after a time and got his degree. In addition, he has been a writer and editor for the College paper, The Shorthorn for the past year, getting valuable experience and building his resume. Now praying for a job that will suit him! Congrats Max!!
I love that we have at least one Christmas Tradition that has never been broken! Since the year Jim and I got engaged ( 1987) until the present, we have had Black Bean chili with Cornbread and Margaritas on Christmas Eve. We always try to attend Candlelight Christmas Eve service and then come home for Jim’s famous Chili and Margaritas, followed by opening presents. This year was blessed by our first Christmas with our grand Charlie! It was so fun playing with him and watching him enjoy the packages and opening his presents. We loved having all our kids around the table and also, Jim’s sister, brother and niece. Christmas Day was spent with my brother and sister and an elegant dinner, prepared by Kim and Greg Hext. We all had a very Merry Christmas.
New Years Eve
On December 31, New Years Eve, I woke up to my usual coffee, prayer time and commiserate computer perusing and I saw my Facebook Memory, you know the one they show you from your past Facebook posts over the years? It hit me hard as the meaning from my written words felt so much more powerful today, given the circumstances we are facing.
Here is what I wrote on Facebook Dec. 31, 2013.
“Each day is a gift, which makes each hour, each moment and each breath we take precious. Have faith, smile often, give generously and love deeply. Follow your passion and bring glory to God who gives us the gift of life. Make each day special and make a difference in 2014! Happy and Healthy New Year to my family and friends near and far. “
As I read this, it occurs to me just how MUCH more I feel these things today, knowing the deep and true meaning of the words that came to me back then. I plan to take my 2013 advice and do just that! I hope you do too. May each day of 2019 bring moments, hours and days of special memories and may God smile upon us as we try to honor Him in through the tears and laughter to come. Happy New Year. 💜