A day in our shoes.
- Lori Oberholtzer
- May 4, 2024
- 2 min read
Updated: May 10, 2024
May is ALS Awareness month… and we don’t usually want to talk about it!
But, while our reality seems atypical in our small community (making it challenging to normalize), there are over 200,000 people around the world affected by this horrendous disease… and think of all of their family and friends also impacted! Not only that, but Prevalence is predicted to increase by 69% by 2040, the cause remains unknown, and the cure is yet to be discovered.
Phew. That right there is why we don’t usually like to talk about it- sometimes it feels too high to climb.
Instead, with the perspective we’ve gained from inside the eye of the storm we want to use our breath and energy to lead others to what’s important in life. We want to share what’s fueling our desire for life. We want to be a part of seeing God move!
We want to share “a day in our life” not for pity’s sake, but as a reminder for us and others that while our days are mundane in a repetitive way we can still pursue God and love others, even if it looks different.
DISCLAIMER:
You’ll see a very chill day, which is not always representative of life! Our days could be filled with the most amazing surprises and blessings dropped at our front door or come in the form of helping hands, or it could include very hard moments from new symptoms, difficult showers, choking, or extreme grief. You’ll have to creatively infuse both to do our days justice. And, add lots of Talia! (Having a school-aged child is sad because we just don’t see as much of her during the day, but boy does she add so much life and spunk!
Justin’s thoughts are in Blue. Lori’s thoughts are in Red.
One of the harder aspects of living with ALS is that it is difficult to make each day special because of limited movement and energy. The good news is it's possible as long as you are willing to try and get more and more creative. With that said it's incredibly important for me to have my basic routines completed everyday for me to maximize my chances of finding joy in life. Here's an example of what my basic daily routine looks like. It varies from day to day but generally has these components:
4 AM
JUSTIN:My day always begins by waking up alone in my recliner before it's time to get up, usually between 4 and 5. I have a clock that projects the time on the ceiling so I can easily see it. I have developed a game of seeing how many different words the time spells if you flip the numbers upside down and reverse them. For example the time 11:35 spells the word sell. There's a lot more than you think! Waking up in the middle of the night is a major mental battle for me that if I lose then it means waking Lori up and the last thing I want to do is make her sacrifice more than she already has for me. If I lose my mind and allow destructive and unhelpful thoughts to gain a foothold then I can really struggle to rest enough to fall back asleep.
LORI: While I’m a heavy sleeper, the last few weeks around 4 I’ll mumble “do you need water or the cough assist?” It’s that dreamy state where I wake up because I realize I’m talking out loud. I get out of bed a tad grumpy, but soften as I come to and help Justin to stand, pee, use the cough assist, get a sip of water, and adjust his legs and chair and crawl back into bed. Usually, I feel some level of guilt that I’m crawling into a bed, and loneliness that I’m crawling in alone.
7 AM
JUSTIN:On a good day I pray for a little and fall back asleep until the alarm goes off several times for Lori to get Talia up for school. I always ask her to help me bend my legs before helping Talia because they are always stiff from not moving all night. This means I have roughly forty minutes until I can get up. I rarely fall back asleep during this time mainly because I am stressed over Talia missing the bus because her and Lori are running around frantically looking for one last needed item that could have been addressed 10 mins ago but wasn't. But who am I to judge?
LORI: Talia usually hears my alarm and wakes me up- I’m still amazed how obedient her body is to that alarm and how quickly she wakes and dresses! I must force myself to get up. I love these few minutes alone with Talia but they are usually hurried minutes. I usually check in on Justin to make sure he’s ok, and bend his legs up in the recliner - he’s so patient because I know as the first one up each morning he’d much rather get up, but for the sake of our morning routine he is the last one out of bed! Benny usually stumbles out a few minutes later from all the ruckus and I’m so grateful for his sleepy morning cuddles! Sometimes they squeeze in a quick make-believe game or legos, while I remember I was supposed to pack lunch! Benny already has ideas for what we could play- right now it’s playing legos to a Benny curated Spotify playlist- and I try to play for a few minutes, but as 7:50 approaches and I hear Justin’s coughing growing more aggravated I give Benny the first of several heart-wrenching “in a few minutes, Buddy” lines and go back to get Justin out of his recliner. Benny is usually SO patient during this time and will usually hang in the room with us, read a book, or play alone while I get Justin up.
7:55 AM
JUSTIN: When it's time, Lori comes in and takes off my slippers that I sleep in and puts my socks and shoes on. I wear slippers because they have a rubber sole and that keeps my feet from sliding down when I want my legs bent. She then moves the wheelchair into position and gets my walker and urinal. After standing and using the urinal she transfers me into my wheelchair. It's always a little disheartening how tired I feel after just standing up but Lori does a great job encouraging me to keep doing what I can and to keep moving. We continue the morning routine in the bathroom where she brushes my teeth, washes my face, puts on deodorant, cleans my ears, and sprays my nose and throat spray. We then head out to the kitchen for breakfast.
LORI: 7/7 days I want to crawl back into bed, and sometimes my body just has to, but I know it’s at the expense of a “been awake for 2 hours Justin” and a “waiting patiently to play Benny”. Benny will usually come in curious about the delay and his commentary and questions will force a smile out of everyone; I’m trying to savor the precious last months of having a preschooler! I start Justin’s routine by driving up in his wheelchair, getting his socks and shoes on, then gently pulling him to a standing position with his walker to use the transportable urinal. Standing is getting more difficult as his glutes weaken so sometimes I juggle holding his arm, supporting his lower back or pushing his forehead back while holding a urinal- but getting to a stand feels important. I transfer him into his wheelchair, while hating the fact that after he worked so hard to stand he wants to be in the stupid chair and is more comfortable there than standing. The transfer is not too challenging on its own as it’s more of a pulling upright motion to get him to be weight bearing on his feet, then I use my knees to steer him back into his seat and squat to lower. The last couple of weeks his cough has returned which is likely just a result of not effectively clearing out persistent mucus. While masks make him feel super claustrophobic he has found the cough assist to be helpful.
Next, we move to the bathroom where we have a fairly tidy routine:
brush his teeth with an electric toothbrush and try not to cause brain vibrations (4/7)
Spit in cup, use mouthwash as a rinse, and try to catch it all without getting on his shirt (5/7)
Wash his face and get off excess toothpaste and try not to hit his recent incision on his neck (6/7)
Nose spray + throat spray and get all the angles right (6/7)
Lift his arms for deodorant and get the perfect angle (7/7)
Q-tip his ears without going too deep (6/7)
Sometimes shave (7/7)… “anything else?”
It has become less weird to do these tasks for my husband and I'm getting a better rating each week, but it’s no less sad. I try to do it methodically because if my heart lingers I’ll ruin the rest of the morning for us. OK, moving on!!
8:15 AM
JUSTIN: I usually check my online chess account for any moves I have to make while Lori makes my oatmeal and coffee. Chess has been a fun way for me to learn something and to connect with people I wouldn't otherwise. I played occasionally with my mom growing up but never really tried to get better until this past year. I started writing out some life lessons you can learn from chess like "the small things (pawns) matter in the end game" and "if you lose your king (God) you lose everything". I hope to share this writing later.
At this point I’ve promised Benny that I would play with him if he could just move the game to the kitchen table. So he usually resets his toys up and I become a lego ninja warrior between oatmeal stirs! We have perfected the morning oatmeal and now that I have a Costco size of raisins I’m hoping our breakfast “go-to” stays a while! I call Justin to the table and Benny will often make Justin’s coffee and we smile when he says the words “ristretto”- very cute! Now I’m Ninja warrior between feeding Justin small bites and I think he just laughs inside at the ridiculous back and forth between Benny and I.
While there’s often lots of jokes at meal times, we have to strike the right balance because while laughing eases the tension and makes a more light-hearted mealtime, it’s also fairly dangerous for Justin to laugh while eating and we’ve had many coughing spells, spewed food, and fearful glances from too much laughing- still working on the perfect balance here :) Feeding Justin breakfast could take up to 40 minutes as bites are small and slow and can’t be rushed. While I’m now used to feeding Justin it’s in no way the position a wife wants to be in with her husband. It’s humbling for both sides and that’s where easing the tension with jokes comes in. Some Saturdays at breakfast we like to add a new Bible verse to our wall - we’re always impressed with how much better our kids’ memory is than ours!
9 AM
JUSTIN: Then I take my first of three rounds of pills, which is 6 of my clinical trial pills and one other pill for muscle spasticity. I also take 5ml syringe of edaravone. Pills have definitely been a love hate relationship for me with most of it being hate because 95% of what I have taken has not helped me in any noticeable way. Therefore the ones I am taking now are actually helping in a way that I can feel and for that I am grateful! I have taken over 60 pills a day in the past but am no longer able to endure that level of research. I typically have a few minutes after breakfast for time on my eye gaze computer to check text messages and read the Bible. I have been captivated by the supernatural power in the word of God and definitely find my joy and peace in feeding my inner man with it. It truly has been "a lamp unto my feet '' and I believe that God wants to use it to change the world especially in the west. Usually not long after that either a caregiver or physical therapist shows up and I will be stretched on my therapy table for an hour to an hour and a half. This is probably the best time of the day for my physical body. Any time I get out of my chair is greatly appreciated and needed! I have also been so grateful for the conversations and relationships with my physical therapists and caregivers. Meaningful conversation with others is like precious gems for me because they are so hard to find and valuable when I get one. We have listened to podcasts together, read books together, and talked life together. What treasures we have uncovered while stretching my legs.
LORI: By the end of breakfast someone usually walks in and then I’m keenly aware that I am not at all dressed and dart off to the bedroom! Most days I’m rushing around now late to preschool drop-off and debate between showing up like a crazy person 2 minutes late, or doing the bare minimum to look presentable and show up 8 minutes late to an already locked door. I usually go for the wild, crazy look and have given up on explaining “yes, I’ve been up for hours but I promise I had zero seconds to get myself together!” The benefit of being late is I see far fewer people, but Benny’s sweet teachers never seem to judge. The smoother mornings are when my mother in law, Carol, shows up to take Benny to school and will often either take over feeding Justin, or gets Benny dressed, loads my dishwasher or grabs my laundry, while I put on my pants and yesterdays’ shirt!
Friday mornings we’ve both enjoyed having separate bible study with friends and neighbors, following the DBS model in different ways and we’ve been blessed by the conversations, honesty and impact we’ve seen from them.
Justin is usually stretched in the morning and this is one of the jobs we’ve intentionally outsourced to others every day of the week. It’s something that can be done to help Justin have a better day while I’m out doing errands, on calls, kid appointments, at rentals, helping in Talia’s class, playing with Benny, doing house work, Meeting with clients- whatever! I struggled a lot with “getting out of the house” knowing Justin wasn’t getting what he needed so we are super grateful to now have stretching help from his Aunt Nancy, his Mom, and a few PT’s-Susan, Zach and Greg! Mondays we throw in an acupuncture sessi (check out John with Lititz Acu), Wednesdays is currently dominated by Team Wittenberg and Fridays he gets a massage! If it’s a Tuesday we often get a fruit salad delivery from his aunt. We are blessed with amazing family and friends and I plan to share more on our supportive community in a later post!
12PM
JUSTIN: After stretching it is usually time for lunch, which is almost always 3 eggs with a croissant and lots of Kerrygold butter. I often follow up with some fresh fruit salad from my aunt. Then I take my second of three rounds of pills. Many days I don't really want to eat lunch and don't have a strong appetite. I deal with a little fear of choking on food and if the eggs are over cooked they are hard to swallow. I never really eat to enjoy food anymore, which is a bummer because Lori and I used to enjoy eating out for a nice meal.
LORI: After preschool pick-up I usually try to make lunch for Benny and myself. Justin is usually in the middle of his lunch too. While I make and feed Justin lunch Thursday/Sat/Sunday, the other days I’ve been getting a break from one meal/week which frees up almost an hour of time so I could play or tackle my to-do list. We feel fortunate to be surrounded by friends and family that hold us in every way possible, including giving of their time to help with caretaker duties!
With 2 hours left until Talia gets home from school I try to figure out how to fit in a workout or shower for myself, play time with Benny, a shower for Justin, and my to do list. My to-do list is often focused on medical calls + bills + insurance + tracking + proving our income to someone, ordering + picking up meds, or scheduling all the things. etc. I need to start tracking time spent in this area for kicks, but I don’t have time! HA!
I sometimes take on a design client and then my limited hours of Justin/kid care- coverage is shared with design work. While it’s diverted attention, it also feels good to use my brain and skills in a different area and so I usually appreciate the change and extra income. I have an awesome client right now and I'm pretty excited about the space we’re transforming!
Justin is very helpful in processing big decisions for our family, but a lot of the legwork for taxes, our rentals, paperwork, house, kids, his care etc. needs to be done by me which keeps me hustling. We joke that I have a lot of jobs, I just don’t get paid for most! Sadly, in PA spouses are the only relationship that can’t be paid for caring for their loved one.
2 PM
If the weather is warm and the sun is shining I love to be out on our back deck. It's a fairly large deck with views of the entire back yard and is great for watching the kids jump on the trampoline or dig in the sandbox.We don't have a shortage of neighbors to play with so there is always the sound of kids playing or fighting nearby. Last year someone blessed us with a golf cart for me to get around the neighborhood so we'll occasionally get it out for them to ride on even though I no longer can use it myself.
I never really sleep during the day but I often need to take my hand off the joystick and recline back in my chair and close my eyes at some point in the afternoon.When I do I will often talk to God or imagine life as it could be if I wasn't sick. I have begun intercessory prayer, which is basically coming between someone and God on their behalf. It's what Jesus did on the cross for all of us. I honestly don't claim to know exactly how it works or how to do it correctly but God seems to work through it and it has been a major part of my faith the past year or so. I recommend you read the book Intercessory Prayer by Dutch Sheets if interested in boosting your prayer life.
LORI: Now that the weather is warm we all try to be outside as much as possible! Benny is ready to jump on the trampoline and I sneak in a load of laundry, and check in with what Justin needs. I may help him with a sip of smoothie, bathroom, cough assist… but 15 minutes later Benny is really antsy and now “the only thing that will make him happy” is screen time which I'm often trying to save for him to use with his bestie next door, or as my babysitter while I shower Justin. I try to lure him back outside but the small window where everyone is situated is short and usually not aligned. Kids’ attention spans stacked against Justin’s needs feels like a constant battle I rarely win.
Talia gets home shortly after Benny and I settle into a game. Tal heads straight for a snack and may play a few minutes before she asks to play with neighbors that double as family. We love seeing kiddos fill our yard with life and it’s been a gift to have deep friendships developing from such a young age!
One of the hardest parts in this journey has been trying to keep our family unit close-knit. One of the best ways I can support my family right now is protecting and curating intentional family moments. It sounds trivial, but trust me, it gets complicated with the amount of people in and out of our house in addition to that illusive sweet spot where everyone is situated and in agreement.
“Curating a moment” could be as simple as creating a quiet enough space with zero distractions so Justin can ask Talia how school was, or as complicated as getting everyone in the van for a family bike ride! Removing distractions, attaining mutual agreement, getting basic needs met, all having good moods and energy levels- all these things make a bike ride complicated in our world. I’ve cried many tears over the challenges of parenting through this storm because we both feel and fear we’re losing ground with our kids because of the vast amounts of diversions (even when they are good and healthy things) that we have to compete with for simple moments together.
Sometimes the best we can do is sit and watch them play as we pray over them and continue entrusting them to the Lord.
3PM
LORI: Showers have been happening mid-day and we’ve recently started having a second person help with a portion of the transfer to prevent any falls. Showers were extremely stressful and hard for me as I struggled to disconnect and “just go through the motions”- it feels impossible to be so close with someone and not long for the past in these challenging caretaking roles. I find myself praying through shower times and asking the Lord to help me find peace and contentment in all things. Bowel movements are another area that require full focus as the transfer is difficult and it’s not a comfortable situation with Justin’s weak neck and limited mobility. I’m so grateful we were able to remodel our bathroom a few years ago to accommodate easier showers and bathroom transfers!
6PM
JUSTIN: By the time dinner is served I am usually pretty tired and need a boost of energy from a solid meal. Growing up we tried to protect family dinner time and to this day it is still important to me especially since I can't keep up with the kids basically any other time of the day. Although we have a decent sized table we are usually all huddled together in one corner. If Lori is lucky one kid is on my lap but more often she is feeding me with two kids hanging all over her. We love it but it's neither easy for Lori nor clean for me. These days I'm eating foods that are softer and easier to eat. I gag more easily on vegetables or anything overcooked so it is not easy to be a good example for the kids. I try to make up for this in other ways and besides manners were never really my strong suit.
LORI: I’ve never been a meal planner, although I keep hoping it will magically happen! Dinner is usually “found” amidst that week’s groceries in the fridge. My favorite night is Wednesday night because I have a wonderful group of friends that have diligently brought dinner on Wednesdays for probably the last two years now. The other nights I scan for a protein, veggie and pasta, and we’re now in the “expectant” stage with dessert. We call the kids inside, often not pleased to hear it’s dinner time, and try to use dinner time as an opportunity to sit down as a family! Justin’s voice can’t carry outside, or over many voices, so it gives the four of us a few minutes to talk and laugh and our kids are learning to quiet their voices when Justin interjects. Dinner usually turns into a dance party while Benny likes to show us his break dancing moves he’s learning with a neighbor (making his daddy proud!) and Talia will inevitably start climbing on something.
BEDTIME
JUSTIN: I typically try to participate in putting the kids to bed and we stay in their room until they are asleep. I'll often pray for the Lord's favor over the kids while they fall asleep and I love to watch Lori goof around with them and long for the chance to join in with them. Several times after quieting down Talia will ask to get water and then Benny will want some too so they both jump out of bed and run to the bathroom. I chuckle to myself because here we are doing the kids bedtime and Lori is the only one in bed. After they fall asleep Lori and I will stay up until around 11pm relaxing together. At bedtime I take my final set of pills and Lori transfers me to my recliner and takes my shoes off. It usually takes me about an hour or more to fall asleep and I make a lot of weird noises with my breathing or so I am told. It's weird that I can't easily sleep because I'm so tired by then and I used to get depressed when I was tired because I lose what little ability I have to move and I would think that it's a permanent loss of movement. Now I just remind myself that I am just tired and that after some rest I will have more movement back. I have always made a commitment to always say the words "I love you" to Lori before we fall asleep. It's so life-giving to hear after a long day of doing hard things that your special person loves you.
LORI: Most nights the kids try to squeeze in a few more minutes of play time after dinner with their besties or each other. We’ve been trying to get into the routine of chore charts and leaving enough time for a few books and SO MANY giggles in bed! I abandon the messy kitchen and we start the bedtime routine. It’s amazing how long pajamas+brushing teeth+bathroom takes for two kiddos on a second wind! We are quite a sight at bedtime because I squeeze in the middle of Benny and Talia in his full-size bed and after jumping/flipping/dress-up/fighting over covers we settle into a smashed together formation for as many books as we have time for! I love those moments where they have wanted to cuddle on his lap, or tells him to pull into the room further, or ask questions about "Daddy's strength before he was sick". Our kids have developed a unique sensitivity and love to involve Justin when it’s possible and I love them for that! We finish stories and the four of us close the night by sharing something we're grateful for from that day, and thank Jesus…” We both stay in the room until they fall asleep and I usually fall asleep as I’m praying over them!
I’ll say my favorite after dinner night is MONDAY, because I’ll come out of the bedtime routine to a sparkly clean kitchen! I have two friends who have consistently shown up to clean my kitchen and gift me back the evening 1.5 hours so I can do what I want with it! I often write, follow up on emails or design work, we may take a few minutes to pray together and connect about highs and lows of the day, or lately this has been the time when I do some Bible reading- I’m trying to linger in scripture that stands out to me rather than rushing through and I absolutely need the precious reminders of His faithfulness, covenantal love and nearness.
Around 11:11 we agree it’s past bedtime. I’m usually pretty exhausted at this point as we’ve stayed up later than we should, but nights often feel like the best time to get stuff done! Justin will line up his wheelchair in the perfect position for a transfer and sometimes I’ll hear him jokingly (right, babe??) toggling his wheelchair trigger which he knows gives me slight anxiety and I close down whatever I’m doing! I’ll help him with the bathroom, empty and clean the urinal, then transfer him to his recliner. He has a very specific position to sleep in-bent knees, pull him slightly up on the backrest, pull down his collar, unfold his fingers and put a “table runner” size blanket over just his upper arms! We always say I love you and I usually fall asleep praying over my husband.
You can join me in praying for his cough, for good sleep, and for ultimate healing!
Well, that was just one of our days this week! Maybe we'll share another day again sometime.
Photos taken by the amazing Lindsay Rossman. Thank you for documenting our day!
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