Eng - MCD Capstone

Client 1

"Lupin"

May 31st, 2022

Introduction

I’ve opened my laptop on the metro, because I know that if I don’t start writing now, some of the essential small details from today will be gone. Today, I met with "Lupin." Lupin is 50 years old, and lives in a barrio southeast of Madrid. He is the father to two children, "Harry" (17) and "Teddy" (13). Lupin is a dog-dad too, though his beloved schnauzer, Angus (after the guitarist for AC/DC) passed away this past February. He loves hiking and rock-climbing and told me he has dreams of going to “Yo-se-mit.”

I shared that I have visited Yosemite – no, I was unsuccessful in the lottery and did not climb Half Dome, his very first question – but it wasn’t due to lack of effort, I hiked elsewhere, and now have a reason to return. We immediately started discussing the outdoors, glaciers, where to go near Madrid (I got some excellent recommendations), the summits we’ve reached (Lupin’s far greater than mine, as he is not one to be set back by snowy conditions) and sharing photos. Lupin was an architect tech and is tossing the idea of returning to work in the far, far future. But this time, as a topographer.

In the meantime, Lupin has made an incredible recovery from his ischemic stroke in 2013. Ever since, Lupin has had hemiparesis of his right side, and aphasia. He used a wheelchair, then a cane, and now walks solo. He’s worked on his recovery at the Centro de Referencia Estatal de Atención Al Daño Cerebral (CEADAC) and Polibea. He’s worked with occupational therapy, speech therapy, physical therapy, and social work. Lupin momentarily took up a job in a kitchen as well but found his fine motor challenges and distal strength made the work near impossible. He now helps behind the front desk at Polibea, greeting each client as they begin their own days of rehab. While the resources around him have helped immensely, Harry, Teddy, and the schnauzer (“el hijo 3,” the third child, as he says) are what give Lupin the ganas de vivir.

Home

We first met at Lupin’s house. When he opens the door, I get a strong whiff of laundry detergent, its origin the drying rack around the corner in the main room. We’ve passed the kitchen on our left; the two bedrooms and single bath are ahead. Lupin explains to me that today is laundry day, and this is his fourth load. He says that when the kids leave for their mom’s on Mondays, his week alone always begins with cleaning up around the home, doing laundry, and other maintenance tasks. When Harry and Teddy are at his place, it simply makes no sense to clean as things would quickly get messy again. Lupin usually has a helper come in to do tasks that require great force or for reaching high places, as he would quickly fatigue with the former and potentially fall with the latter.

While showing me his home, Lupin tells me about his family, and his “caso raro.” His situation is a unique one, in that despite his brain injury, the custody of his children is split evenly between Lupin and his former partner. Part of this is because Harry and Teddy’s mom requested it as such. Even then, Lupin had to prove to the judge that he was fit to care for his kids. Through a significant amount of rehabilitation, in particular occupational therapy and speech therapy, Lupin was able to meet these standards. He tells me this was a very challenging time. Nervous to prove himself, whenever his occupational therapist from Polibea would come visit, he’d hastily clean. These times weren’t easy with his kids either, as they grappled with the changes at a young age. He remembers this period as “la época de Harry Potter,” because his son was addicted to the books at the time. Whether from the negative associations or personal opinion, probably a little bit of both, he tells me he much prefers “El Señor de los Anillos” – Lord of the Rings.

On our way in, as well as on our way out, Lupin showed me a key memory strategy – when entering, he always puts his house keys back in the lock, so he doesn’t forget them. When leaving, he uses a verbal checklist – “móvil, llaves,” to make sure he has everything he needs. This set up – visual cues (keys in the door), and a verbalized checklist (“phone, keys”) – are a small-scale example of the many cognitive and environmental strategies that facilitate Lupin’s independent lifestyle.

Communication

Lupin’s current work in speech therapy is all about WhatsApp. He’s found that when he writes text messages, that is, anything longer than a one- or two-word response, they lack the order and structure necessary for the recipient to understand him. When he has ample time, he can do this. However, as he tells me – “siempre hay prisa,” there’s always a rush. This reminds me of Lu’s words, “En un mundo tan veloz si no puedes hablar no existes.” Translated, “In such a fast-paced world, if you can’t talk, you don’t exist” (Echazarreta, 2022).

He has tried dictation, but Siri did not understand what Lupin was trying to say. He has tried voice messages as well but explains that often “olvido lo que he dicho,” or, “I’ve forgotten what I already said.” Lupin ends up repeating himself, and as he told me, “nadie quiere mensaje de siete minutos,” – “no one wants a seven minute voice message.” So, he’s focusing on texting, what he sees as “el mejor camino,” – “the best path.”

Socializing is a challenge. Lupin tells me that he was “siempre rodeado por amigos,” or “always surrounded by friends.” Immediately following his stroke, this was very hard. He tells me that while it’s quite common for anyone’s nerves to rise when they talk to others, this feeling is exasperated for many individuals with aphasia, himself included. He explains that he was embarrassed to talk, even to close friends, because “si no hay lenguaje, no lo hace…no sé como vivir.” Translated, “if there isn’t language, one doesn’t do it. I don’t know how [one is] to live.”

Lupin attributes much of his progress to his kids and Angus. He says, “Si yo puse solo, triste. Harry y Teddy dan montón.” Or, “If I was alone, sad. Harry and Teddy help a lot.” Having a dog helped too. Argus pulled (and I would imagine sometimes quite literally) Lupin out of his comfort zone. He had to talk to people, therefore, “perro me ayuda mucho, pide la vergüenza” – “Dog help[ed] me a lot, I lost my embarrassment.” Though he is quick to clarify not completely, “no he perdido la vergüenza toda.” In novel situations, Lupin often feels his nerves rise again.

And not without reason. In another OT session back at Polibea, Lupin told me that before his stroke, his appearance (tattoos, long hair, driving a motorcycle) often scared old, buttoned-up ladies with his external looks, despite his internal warmth. This misunderstanding began during la Movida Madrileña (1980s), a counter-culture movement in the post-Franco era with a punk-rock feel.

Now, he says, it’s the same, that his stroke gives him “la maldición de junky,” the curse of being a “junky.” With his slower speech and longer processing time, strangers often think he is doing drugs. This is especially true when talking on the phone, and for this reason he much prefers talking face-to-face. From personal experience, one minute with Lupin serves as another example to us all that we cannot be so quick to assume based on appearance alone.

Mobility

When he first came down the stairs to greet me, Lupin descended the tile stairs leading to his apartment complex with caution, leaning into the wall on his right side. An elevator took us up to his single-level space on the fourth floor. In general, besides the steps, Lupin appears to be able to walk with ease. We were out and about for three hours, and Lupin showed no signs of fatigue. He chose to stay on his feet after I suggested sitting upon our return. Lupin tells me that this stamina came from training with Angus. In his earlier stages of rehabilitation, he would walk Angus through the expansive parks surrounding his home. Each day, they would go a little bit farther. In this sense, Angus helped Lupin not only to tackle his communication fears, but also to build strength and endurance.

Lupin enjoys driving and would particularly like to own a Honda or Smart Car. However, the catalyst converter of his car was recently stolen – and with his model, it’s near impossible (what with the supply shortage as well) to get a replacement. Therefore, Lupin is currently carpooling the hour-long commute to Polibea with either the speech therapist or physical therapist who both live in his neighborhood. Lupin (and his speech therapist) joked that the commute is more or less a bonus therapy session!

I asked Lupin about his navigation. Importantly, his self-awareness is remarkable, given the severity of his brain injury. He told me that any route outside of his routine – which includes Polibea, Ikea, and his sister’s house – is extremely difficult. A GPS is too distracting. Lupin also struggles to distinguish left and right. This isn’t a problem when he drives with Harry or Teddy – the savvy teenagers that they are, they can pull out their own GPS, he tells me. Then they give simple instructions – “gira hacía mi, gira hacía tú,” or “turn towards me, turn towards you,” so Lupin knows what the next step is.

When Lupin gets behind the wheel again, he’ll have to follow the same limitations he was under before the robbery. He can no longer drive a motorcycle, due to the necessary balance skills. He can’t drive faster than 100 kmph, and for trips no longer than 45 minutes. He wasn’t so sure who, if anyone, would monitor this, but he appeared to me as a man who tends to stick to the rules.

As was evidenced by our walk to Ikea, Mercadona, and back. Lupin always crossed the street at the designated crosswalk, no matter the added distance. As is common after a brain injury, individuals learn an approach that is safe for them, and they stick to it. However, this does not always guarantee success. I’ll soon explain how in Lupin’s case, despite his best intentions, his challenges divided attention sometimes got in the way of the engrained pedestrian safety.

Activities

The plan for the day: Go to Ikea to find spoons and clothes pins; and to Mercadona for cecina (beef jerkey), mermelada de tomate (tomato marmalade), queso de cabra (goat cheese), and masa (puff pastry dough). Then, to return home and make one of Lupin’s go-to recipes. I asked him if there was a name for his unique (and mighty tasty, let me tell you) creation, and he shrugged. More importantly, he says, it’s Harry and Teddy’s favorite meal.

Before we embarked on our errand adventure, I asked Lupin to find a few different items at each stop. For Ikea, an online coupon and bath towels; and for Mercadona, corn (on the cob, not cooked) and peanut flour. We got a laugh out of that one – “you sure do ask for strange things, Madeleine…!”

Throughout the day, Lupin and I kept up good conversation. This is quite remarkable. After his stroke, Lupin had very limited access to his personal lexicon. Through years of rehabilitation, he can now spend a day with me, a foreigner with a thick accent and a limited vocabulary and talk about everything from hikes to cars to politics.

As we talked, it became clear that Lupin has difficulty with divided attention. When speaking, Lupin would either attempt to cross the street when the sign was red, or he would stop at red, but not notice when the light turned green again. As we waited in line to pay for our purchases, he did not notice it was our turn to pay. In each case, with one visual or verbal cue, he would attend to the task at hand.

Ikea

Technically, Toglia’s Multi-Context Approach to Functional Cognitive Intervention aims to transfer specific strategies from one activity to another, gradually changing the difficulty. This promotes generalization of the strategy, and frequent use improves success (2006). While I had no specific strategy of Lupin’s in mind, I was asking him to step out of his routine today, to see how he does when he must problem-solve. Again, Lupin is very self-aware and knew from the get-go that this would be a challenge:

When we’re sipping coffee and munching on cinnamon rolls in the Ikea café, discussing Spain’s political system and its impact on health care, Lupin remarks “muchas veces aquí yo…repetido muchas veces, conozco el sistema…allí, más difícil.” Translated, “Many times here [Ikea café] I…repeated many times, I know the system…over there [the main part of Ikea], more difficult.”

Lupin knows his path through Ikea by heart. He points out the arrows on the ground that tell him which direction to go, but only needs them once to find the cutlery. When we end at the café, he shows me how he uses his Ikea family card to get a discount. He manages the tablet to pay with ease.

It’s a different story when I ask Lupin to step outside of his routine. I prompt him twice to recall the items we’re getting. With a bit of extra time, he lists spoons and clothespins. He forgets the novel item (bath towels) once and recalls it the second time. Before we left Lupin’s apartment, we had briefly discussed getting plastic Tupperware, but decided against it. When at the store, and asked to recall our items, he could recall “Tupperware,” but had forgotten the context behind it.

Things also became challenging when we couldn’t find the right spoons, nor the clothespins. We found forks, but we weren’t sure how much they cost. I saw a price scanner on the other side of the walkway, and asked Lupin, “¿Cómo pudimos averiguar el precio?” Or “how could we find out the price?” When nothing came to mind, I prompted him to do a visual scan. Nothing stood out. When I asked him to look a third time, “con despacio,” – “slowly,” he saw it.

Lupin had a useful strategy for any mishaps in Ikea – “chicos amarillos,” the staff wearing yellow. At first, he hesitated to find help – he said he could get along just fine with forks. As he had already told me the main purpose was for yogurt, and because I wanted to see him interact with someone, I encouraged José Bueno to seek out a chico amarillo.

He got his point across just fine, “¿Hay las cucharas pequeñas? ¿O las pinchas?” and had no difficulty with comprehension – the supply chain was putting everything behind, and they only had the really big clothespins. He chuckled and noted that even though Ikea is renowned for its Swedish style, everything is made in China.

While the chicos amarillos are a good resource for Lupin's shopping trips to Ikea, I believe they can also limit him, and serve as a crutch. When Lupin lost track of where we were, “me perdí porque es camino nuevo,” and couldn’t recall what sections we’d walk through “¿Baño no pasamos, no?” I asked him how we could figure that out. We were standing in front of a map of the floorplan. When I asked Lupin to think of a tool besides the chicos amarillos, nothing came to mind. I pointed out the map and the signs hanging from the ceiling, and we found our way from there.

Toglia, J. (2018). The dynamic interactional model and the multicontext approach. In N. Katz and J. Toglia (Eds.), Cognition and Occupation Across the Lifespan: Models for Intervention Across the Lifespan. 4^th ed., pp. 355-383). Bethesda, MD: American Occupational Therapy Association, Inc.

Mercadona

In the grocery store, the situation was similar. As soon as we stepped through the sliding glass doors and past the check-out belts, Lupin stopped. Leaning over the cart, he sighed “me pongo loco,” translated, “this makes me crazy.” When I asked why, he simply stated “este cambia de sitio,” – “this change of place.” Lupin knew exactly where to find his items. Seeing as his list makes up Harry and Teddy’s favorite meal, he’s purchased them a lot. When it came to my novel (and I’ll admit unique) requests, Lupin was overwhelmed. He didn’t know where to begin. We tried to find the peanut flour together, to no avail. We eventually found my uncooked corn on the cob after another cue to scan the shelves “con despacio,” just like the Ikea price scanner.

Kitchen

Cooking is a great way to observe and practice executive functioning and dexterity skills with clients. It looks at safety awareness, divided attention, sequencing, task initiation and completion, and following directions. Handling jars, knives, packaging, and other cutlery can be challenging for anyone with fine motor deficits, limited sensation, joint pain, or hemiparesis like Lupin, to name a few.

From our cooking session, I observed Lupin execute safety precautions and use his adaptive tools with ease. Before beginning, he stopped and thought through the process. He washed his hands and kneeled to steady himself while putting items in and taking items out of the oven. He used thick towels to cover his hands when he touched the hot baking sheet. He let the food cool before attempting to cut it.

Given that this was a familiar recipe, “receta en cabeza,” as he said, and Lupin’s familiar kitchen, I challenged him to hold a conversation about the food while we worked.

However, just as in our walk and our tasks in Ikea and Mercadona, Lupin’s difficulties with divided attention and problem solving were again evident as we cooked. As with his repetitive voice messages, or when he asked me three times if he’d already told me a certain story, Lupin forgets what he has already done, and what he has yet to do.

After opening the pastry dough, he realized he’d forgotten to flour the baking sheet “Evita a hechar…[harina].” After prepping the ingredients, he turned around to realize he hadn’t started the oven “Olvidé precalentar el horno.” The divided attention between cooking and conversation proved to be a tad beyond the just-right-challenge, so I adjusted and minimized my questions.

While we went, I made a few suggestions – coating the fork in flour to pinch together the dough without it sticking, cutting one edge of the wax paper and shifting it over to the side where we needed more. Lupin told me, “Estas cosas nunca me ocurren,” – “these things never occur to me.”

When it came time to put the baking sheet in the oven, I waited to see how Lupin would track the time. When he seemed content to keep talking, I asked how we would know it was done. He said he didn’t know, he usually just watches it. I suggested that we set a timer on his smartwatch. Lupin appeared to like that – he told me he’d learned in OT and speech to use the device for other things (knowing the day, the temperature) – but had never thought to use it as a timer. After a few trial runs, and mishaps with getting the alarm to work, we got it.

At the end of the day, Lupin thanked me for such a great time. He said he hopes he was able to help with my project, and that if I ever need anything, I could always go to him. Lupin noted that he doesn’t warm up to everyone. If someone proves they deserve it, they earn a place in his heart. I am honored to be put in such high regard by such a remarkable individual.

Independence

Lupin’s occupational therapy goals have always been to care for Harry and Teddy. At first, to prove his capability to a judge. Then, to build a routine to help all four of them (we mustn’t forget Angus) function as a family unit. He’s also made recipe books with well-balanced meals, worked on home management, planned, and executed vacations, as well as other leisure activities, with his kids.

Lupin made sure to tell me, “a mi salva el sistema de bien salud,” translated, “the public health system saved me.” He explains that in Spain, 25% of one’s paycheck goes to the government. This covers the cheques sociales (social security check), money provided by the seguro médico (medical insurance) that allows Lupin, as well as a majority of the clients at Polibea, to receive rehabilitation services. It’s not perfect (I’ll be writing more on that soon), but as Lupin and I talked about, no system is. Regardless, without his guaranteed health insurance and unemployment benefits, Lupin knows he would not be able to have the quality of life he has now.

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