For National Stroke Awareness Month, we are putting the spotlight on nurse, author, caregiver, and advocate Lana Wilhelm. As a medical professional, Lana dedicated her career to helping others. When tragedy struck in her personal life, she quickly shifted roles from expert to caregiver, struggling to find answers. Lana will speak of her and her husband’s journey, as well as how they have adapted their lives as travelers.
From Nurse to Caregiver
Lana is the founder of the Stroke Caregiver Connection. Hailing from Saint Louis, Missouri, she was thrust into the position of caregiver after her husband suffered a sudden and major stroke. It was a touch-and-go situation, as he was in the intensive care unit followed by a lengthy rehabilitation. Although Lana was a veteran in the medical field, this was something she could not prepare for. Unlike her shift as a nurse, where she would go home when the day was done, this workday never ended, even after her husband’s condition improved. Navigating this process was arduous and at times lonely. She decided that she did not want any other caregiver to go through what she did.
She used the role that she was thrust into, that of the caregiver, into a learning and supportive experience for others who are sailing in the same waters as she. She runs support groups and has met with over 2000 caregivers over the last few years. For them, she is someone who “gets it,” who understands the tumultuous path of a caregiver.
For stroke victims, from the outside, it’s easy to think they are improving or doing better. In reality, their condition can change from day to day. It’s not like a physical injury in which progress can be monitored from the outside, as it affects the brain.
The Ability to Travel
The variability can also impact the caregiver. Some days they may feel guilt, other days anger or the desire to just throw in the towel. Not only has the caregiver lost the person that they loved to some degree, but they have also lost a lifestyle. One of the many aspects of life that is changed is the ability to travel. Many people feel that travel is not possible after a serious medical event. Although spontaneous travel may become limited, traveling itself is not. Travel with stroke survivors or others who have undergone a major medical event will change, but can still be very enjoyable.
In preparation for travel, the caregiver must determine what medical support is available at the destination. Is it an area that has the medical capabilities to handle your possible needs? Lana recommends taking along a form that has pertinent information on it if something were to happen while traveling. Most aspects of the trip have to be planned out in advance. Understanding the terrain, the hotel, the transportation–none of this can be on the fly. Packing in advance is also crucial. A method that Lana uses is packing her husband’s items in little packs, so there’s no question regarding where his items are. If traveling with others, they need to understand the limitations that the survivor has. If flying, the airline will have to be contacted ahead of time, as far as boarding and other aspects of the flight.
Travel Rethought
Many times, survivors will say that they would rather stay home than be a burden or ruin the trip. Instead of negating travel, it’s all about accommodating travel. Lana relates that one of the toughest places to travel for her currently is the beach. Sand and water make for uneasy terrain. If the destination is in a hot climate, be cognizant of staying hydrated. Long flights can be difficult, too, due to the fear of blood clots and being in cramped quarters.
Another tip that Lana gives is traveling with a group of people. That way, if the loved one is tired and needs to rest, the caregiver can still enjoy the sights. This is one suggestion I can even relate to my own life. My own father, who has balance concerns, on a recent trip to Philadelphia, perched himself on an outdoor seat to watch the rest of us explore the garden we were at. He was still able to experience it without having to take the perilous journey around the grounds. Sometimes, though, the caregiver has to say no if the risk outweighs the reward.
Managing Burnout
For the caregiver, whether traveling or at home, burnout is real. It’s difficult to balance providing constant care and supervision while attending to one’s own needs. Lana recommends that the caregiver take time for themselves as well, to have a purpose each day unrelated to the care of their loved one. Whether it’s taking on a project such as her advocacy campaign or something small like tending to a garden or taking a walk, visiting family or friends, or going out to eat with a co-worker, all these are small ways to make sure to have “me” time outside the caregiving spectrum. This perspective-taking helps them be the best caregiver that they can be.
All in all, one must expect that quality of life changes, both in terms of everyday life and travel. At first, the mindset is always the worst: “What if it happens again?” Or “We were going to do this, but now we can’t.” It’s all part of the grieving process. Anger is natural. The key change comes with the mindset shift of “I can’t do this, but that’s okay since I still can do this.”
Although Lana and her husband may not be able to visit Europe, they can still do so much. His stroke has limited his sense of taste, so having dinner may not be the same experience as it once was. What he enjoys now, though, is the company. Having dinner with friends has become less food-centric and more fellowship-based. Humor has also helped her and her husband cope with their adjusted lifestyle.
Their trips have become closer to home, a la Backyard Road Trips. They’ve enjoyed trips to Mackinac Island in Michigan and, even closer, visited Hannibal, Missouri, and the Gateway Arch in Saint Louis.
For More Information about Lana Wilhelm
Lana and her husband’s journey is inspirational to all. To find out more about Lana, please visit the Stroke Caregiver Connection and click here for information about Lana’s books, Stroke and the Spouse and Stroke and the Caregiver. For more Backyard Road Trips profiles, check out Luke Serwinski of the Strong Kitchen, talking about company culture with Chris Dyer, and Connor Gaudet at the Mattapoisett Museum. And make sure to listen to our latest podcast as we chat with Lana Wilhelm!
