From Challenges to Triumphs: A Caregiver’s Perspective on Outdoor Adventure
Caregiving at the best of times is a complex and demanding role, but providing care to Jen while tackling extreme challenges requires next-level energy, commitment and problem-solving. Learn with me as I experience this journey!
I have been Jen’s primary caregiver for five years, attending to her physical, social, and emotional needs, including personal care, therapy and rehailitation sessions. Over that time, I have seen huge improvements in Jen’s cognitive and physical abilities, despite big hurdles along the way. While Jen has been comfortably cared for in her family home, this trip to hike the Camino de Santiago is pushing Jen far outside of her comfort zone. The incredible excitement of travel brings new challenges in her personal care. As her caregiver, I am focusing on flexibility, communication, equipment, and comfort.
A caregiver needs to be flexible and change plans when new circumstances arise. For example, the two-hour flight delay when we were leaving Pearson meant changes in meal and washroom schedules. Travelling in a foreign country means eating what is offered on the menu, which sometimes requires asking a restaurant kitchen to blend her food to achieve the puréed consistency that Jen can eat. We go grocery shopping with Google translate in order to find food that will be both nutritious and delicious. Jen’s physical and mental capabilities are being stretched, and I am doing what I can to ensure she is ready to meet the challenges of The Camino. A wonderful part about this trip has been the amazing support we’ve received from all those with whom we’ve interacted, from flight attendants to restauranteurs to fellow pilgrims; each one has offered extra care, made an exception, or leant a hand to help us on our way. Sometimes all you need to do is ask!
Jen needs to be heard. Her scripted life has gone off-script, and as a caregiver I am among the first responders to make sure that she is managing very unpredictable days. Good communication skills are needed to ask when she needs food or liquids, and a good understanding of her communication abilities is important. Paying close attention to her signals, such as eye blinks, changing facial expressions, and hand signals, shows Jen that we are listening carefully and responding as well as we can to her preferences and needs. I always watch Jen's eyes and hands so I can see if she is thirsty or needs an adjustment. On the trail, one example where we changed course as a result of something Jen communicated took place during one of Jen's first stints on the trike where she went quite fast down a hill. When we asked her afterwards if it was too fast, she clearly said "yes’”, so now we always seek to preserve a consistent cadence. Jen’s family says this is a departure from her car speeding days! Another funny example was around food; Jen had some garlic soup at one restaurant which she did not enjoy; we tried blending it smoother, we tried serving it at a different temperature, and she just didn’t like it - sometimes you have to give up and try a new menu item!
Skillful care involves good use of equipment, and when her commode was temporarily unavailable it meant adapting to new equipment, such as using a regular toilet. When using multiple mobility devices throughout the day, such as her wheelchair, recumbent trike, or jogger, extra care is needed to correctly use brakes, to adjust the seat position, and to execute careful transfers. Typical hotel beds are not adjustable, so extra care is needed to use pillows and a portable bed rail so Jen can sleep comfortably – especially after a gruelling workout. A few days back, a team member noticed the thread on the pedal space was too long, making the pedal rotation crooked; we improvised on the road by adding a “washer” made of plastic packaging.
The most important part of a caregiver’s role is providing comfort. While travelling, this is even more important. As her caregiver, I am always ready to add or remove clothing layers as the temperatures change, and to reposition her as needed. Jen is cycling, stretching, working out -- things she would normally do in the dining room at home, which she is now doing in a foreign country with amazing scenery! It's clear that she is enjoying it and soaking it all in. Jen has stepped up and is becoming more confident; she has a goal and is working hard to achieve it. As Jen steps out of her comfort zone, it’s my job to motivate, inspire, encourage, and provide support in meaningful ways. Whatever Jen needs, like right now helping her achieve her goal of doing the Camino de Santiago, that is my role.
Looking at the big picture - do the benefits outweigh the challenges on such an undertaking? As with anything, it’s a mix; on the one hand, it's overwhelming, and requires effort to support Jen and be part of the team, but on the other hand I see Jen’s enjoyment and I am also taking time to enjoy the scenery and the beautiful towns we are visiting every day. Ultimately, as a caregiver, supporting Jen's goal is my happiness.
So, would I do it again? The answer is -- of course. Jen and I have built this bond. She is a client, but she is also my friend. Where does Jen want to go next? I'm in!
By Leigh Valiente