Sugar Grove woman shares caregiving lessons during National Family Caregivers Month
November is National Family Caregivers Month, a time to honor and support family caregivers.
This year's theme, "Caregiving in Crisis," recognizes the new realities caregivers face during the pandemic.
For Jan Herwaldt of Sugar Grove, caring for Mark, her husband of 33 years, has helped her realize she is resilient, strong, and proactive. These traits have been necessary to manage the physical and emotional caregiving responsibilities with confidence. Caring for Mark has also taught her about love and commitment.
It was October 2016 when Mark began experiencing muscle twitches on one side of his body. During an emergency room visit, Mark had an MRI, which showed some abnormalities sometimes seen in people living with ALS. After hearing this news, the Herwaldts saw a neurologist who suspected Mark might have the terminal, neurological disease.
"Our initial reaction was shock," says Jan. "Only two months earlier, he led a pilgrimage to Poland where he was sightseeing, hiking, and traveling among several cities. As we began to overcome the shock of a possible ALS diagnosis, we became doubtful the doctor's suspicion was true."
The couple continued searching for answers. Mark endured numerous tests to rule out other diseases, and in early 2017, he was diagnosed with ALS. The disease had progressed, and by June of that year, daily tasks became difficult and Jan began accompanying Mark to Corpus Christi Catholic Church where he was the Youth Ministry Director. It was here that she informally began her caregiving duties.
"We continually rely on the Les Turner ALS Foundation for support in an overwhelming situation," says Jan. "The nurse and social worker are the first people I call when things go astray -- and many things have. I find it helpful and comforting to be able to call someone who understands."
With ALS, muscles gradually weaken and eventually waste away. Today, Mark has lost the use of his arms and legs, and is unable to speak, eat and move. He communicates using an eye-gaze speech-generating device. The Herwaldts grieve the loss of each physical function.
Prior to the pandemic, the Herwaldts welcomed friends and family into their home. Social interactions help the patient as well as family caregivers feel connected to others. Unfortunately, visits have been paused, and Zoom calls are infrequent because communicating with the eye gaze technology is challenging in a virtual setting.
Jan explains, "Caregivers have insights to help others deal with the isolation, uncertainties, and fear during this pandemic because we face similar challenges in our caregiving roles. I have heard it said, 'we are all in the same boat;' however I believe more accurately, 'we are all in the same storm, but in different boats.' The boats of caregivers and those whom they care for are strong, but riddled with battle scars."
While Jan serves as the primary caregiver, she receives support and assistance from their five adult children. Three children live with Jan and Mark and help with household chores and basic caregiving duties. ALS impacts the entire family and the Herwaldts have all been devastated by the disease.
With Mark's health and safety her top concern, admittedly, Jan minimizes her own self care. Caring for yourself is one of the most important -- and one of the most often forgotten -- things that caregivers can do.
Early on, Jan was advised, "Anger, frustration, grief, and sadness are likely emotions for a family caregiver, and it is important to remember to blame the illness, not the ill person for what you are feeling."
For more information about ALS and the services offered to patients and families by the Les Turner ALS Foundation, visit www.lesturnerals.org.