Dustin ended up spending a week in inpatient rehab at the Shirley Ryan Ability Lab. While many parts of this stay frustrated Dustin a lot, it was ultimately a huge benefit.
The facility itself had just rebranded itself and built a brand new state of the art building just a block away from Northwestern Memorial Hospital. The building itself was stunning and provided a great environment for patients. Dustin’s room had a great view of Lake Michigan and the city. They encouraged patients to wear their normal every day clothes, had facilities for washing clothes, and even had a pull out sofa bed for family to stay the night.
In order to qualify for acute inpatient rehab you needed to qualify for three services and be well enough to participate in several hours of therapy per day. Dustin was utilizing physical therapy (PT), occupational therapy (PT), and speech therapy.
I always stayed the night with Dustin while he was at Shirley Ryan. But I didn’t want him to feel like I was judging him or for him to use me as a crutch. This was his time to relearn things on his own and work with the therapists independently. Since Dustin had a full day of therapies scheduled, I thought I could return to work while he was in therapy. This ultimately was not possible as my boss was unwilling to accommodate me and forced me to take a leave of absence because it was “too stressful for the team that Dustin had brain cancer”. This really pissed me off because I was wanting some normalcy in my life and I felt very discarded. Also, it was too stressful for the team that my husband had brain cancer? What the fuck? It was ultimately for the best but still was super pissed.
Dustin was physically strong but was impulsive and was a fall risk. So his physical therapy was focused on endurance and doing many things at once safely. As humans, we often do many things at once without realizing it. We might be walking in the grocery store, looking for items, avoiding a spill in the middle of an isle, picking the shorter line to checkout, and just avoiding collisions with other shoppers. All of that is second nature to us and we don’t really think about it. Dustin had to relearn this aspect of multitasking while being in movement. For example, if I were taking a walk outside I would look before crossing the street, use crosswalks, and avoid the big pile of dog shit that someone failed to pick up. If Dustin took a walk outside, he would not look to cross the street, he’d just cross even if a car was barreling towards him or the crosswalk sign said do not walk. He might get lost or forget where he was going. His goal for physical therapy was to be able to regain that skill of multitasking and safety awareness.
I usually didn’t accompany him to any of his therapies and kept myself busy with other things. But one day his PT asked me to come along so I did. While Dustin was strong enough to walk on his own, he was a fall risk because he’d get distracted easily. So they rigged him up in a harness and had him walk on a treadmill. If he fell it was no big deal because the harness would suspend him. The reason she had me come along was to talk with Dustin and have him do a few things at once. Like he would be walking and have to also list all the states in alphabetical order. Then she added in throwing a ball to him. So he had to talk, walk, catch a ball, and throw the ball without falling. It was actually a total blast. It was easy for us to see Dustin’s deficits but he wasn’t aware of them. To him, he was fine. It was tough for Dustin but it was super helpful for him to see how hard it was for him and to work on those areas.
Speech therapy and occupational therapy were his biggest struggle. Speech therapy helped him with his word finding, vocabulary, word association, etc. Occupational therapy was a lot of the every day stuff that had lots of steps or complicated ordering. So filling pill boxes, following a recipe, using a computer, etc. They also played a lot of brain games. Things that had lots of steps were hard for Dustin. Again, he didn’t realize how hard some of this stuff would be. He’d often forget about things, skip steps, or miss easy things in a game that he wouldn’t have missed before. It was incredibly frustrating for him to realize how hard things were. Dustin is an incredibly brilliant person. Life had always been easy for him, he could easily troubleshoot, find creative solutions, or identify/anticipate problems well before they occurred. While he understood the necessity of brain school it was still really frustrating for him.
There were a lot of other activities offered outside of official therapy time. There were two outdoor patios we’d often just go and sit outside and chat or just enjoy the nice weather. I really appreciated that there was a music therapist that came by and would just have a jam session. They brought all sorts of instruments and they would just make music. Dustin is multi instrument musician. His primary instrument was drums but he could play piano, guitar, bass, synths, and sing. There wasn’t anything he wasn’t good at musically.
One super exciting moment was being able to wash Dustin’s hair for the first time. Dustin had over 100 staples in his head so he was forbidden from washing his hair at all for a week. His hair was so gross because it was covered in blood and matted together. Once he was finally able to wash his hair, there were rules. No scrubbing and only use baby shampoo. Thank goodness the room had super huge personal bathrooms with a shower. I was able to have Dustin sit in a shower chair and gently help him wash his hair for the first time. It was probably one of the best showers of his life. He felt sooo gross from just doing bed baths. So this was a huge deal and such a luxury he had not previously appreciated so much.
So what did this look like? Here is before:
Here is after:
I probably spent 45 minutes carefully washing his hair and detangling. That was all he could tolerate in one session. It took several gentle washes over the next week to get the blood, glue from the EEG electrodes, and tangles completely out. But Dustin was thrilled and he was starting to feel much more human again.
The good thing about Dustin being in acute rehab was it also got us plugged into Day Rehab once he was discharged. So instead of living at the rehab facility, we could go home and he would come back 3 times a week for intensive brain school therapies. These services would have been really hard to get if we didn’t have them set up while he was in the hospital.
While Dustin hated both inpatient and outpatient brain school, it was such an enormous help for him in regaining his cognitive abilities quickly. I’m sure Dustin would have returned to baseline on his own, but frankly this helped him return to his baseline MUCH faster. Dustin’s impatience and frustration would have never accepted a slow improvement. So I’m really thankful for these services. It also gave Dustin a lot of structure over the coming months which was also super important.
Dustin only stayed as an inpatient at Shirley Ryan for a week. But he still wasn’t able to be left home alone for safety reasons which frustrated Dustin and made him very short tempered. He felt like he was trustworthy and safe. He didn’t want to be treated as an invalid or child. His feelings were not unreasonable. I’d be pissed too. He went from a high functioning, super intelligent, and independent person to someone who needed help making Mac n’ Cheese and an escort to the grocery store. All in the blink of an eye. That has to be insanely frustrating. It was hard but we did our best to navigate this new world.
So the first thing we did when he was discharged from Shirley Ryan was go to our favorite brunch place – Tweet, Let’s Eat. We have been going to this place several times a month for YEARS at this point and the staff knew us well. Since we hadn’t been there in a few weeks they were thrilled to see us. Dustin’s gnarly incision with staples were visible and he still had on his hospital bracelet. But we went to our normal haunt to celebrate Dustin coming home. The staff at Tweet are amazing. They brought Dustin a cupcake to celebrate his homecoming. A gesture of kindness that still brings tears to my eyes and warms my heart.
Beside you in time 