Patient Stories

“To me it means that at any given time Mark may need my love, support and assistance. In order for this to happen, I must never forget how exhausting it must be for him to go through his day and not know if his body will cooperate with him. There are days when I am tired and crabby, but remembering that I am essential to his fight, gives me strength.”

During National Family Caregivers Month, we recognize and honor family caregivers who dedicate time and resources to caring for their loved ones. Jazz is committed to raising awareness of the essential role that caregivers play and the challenges they face, and to educating communities on ways to increase support for them.

National Family Caregivers Month: Mary’s Story

A caregiver is a person who provides unpaid care to someone living with a chronic illness, disability or other long-lasting health or care need, outside a professional or formal framework. They are often partners, family members, friends or neighbors, and the psychological burden of the role they play can be immense. During National Family Caregivers Month, we recognize and honor family caregivers who dedicate time and resources to caring for their loved ones. Jazz is committed to raising awareness of the essential role that caregivers play and the challenges they face, and to educating communities on ways to increase support for them.

To honor this month, we spoke to Mary who shared her experience as a long-term caregiver to her husband Mark. He has been living with essential tremor (ET) for more than 40 years and recently shared his personal story with Jazz. His condition has grown progressively worse for the last three decades, creating significant challenges in his day-to-day life. As a middle school teacher, he found it increasingly difficult to complete simple tasks, like writing on the board or grading papers.

ET is the most common movement disorder affecting millions of people worldwide and is characterized by an abnormal and involuntary rhythmic tremor that is not a symptom of another neurological disorder or drug-induced side effect. In the US, UK, France, Germany, Spain and Italy, the prevalence of ET is estimated to be 11 million, of which 2 million patients have been diagnosed.1,2

Since Mark’s diagnosis, Mary’s instinct has always been to “do things for him,” but as the years have passed, he has taught her that it is vital for him to be as independent as possible, and for her to stand by in case he asks for help, “It’s the best and worst part about seeing someone you love struggle with this condition,” she noted.

When asked how her caregiving responsibilities have changed over the course of his ET journey Mary noted, “The one thing that has not changed is the importance of being a supportive partner. Offering emotional support is the most important thing I can do for Mark,” adding that “Yes, he may need me to help him with food or drink, but that is not as important as giving him a place to express his frustrations and help him cope with the daily reminders of his disabilities.”

Mary has appreciated seeing Mark be open and honest as he has learned to cope with his illness. For years, Mark didn’t share his feelings about his condition and instead carried the burden privately. Once he decided to open up to the people in his life, it became a source of inspiration for others. Not only did it help him cope, but he in turn became a more loving, caring person for others.

The 2021 theme of National Family Caregivers Month is ‘caregiving around the clock.’ In reflecting on this theme from her own perspective as a caregiver, Mary shared, “To me, it means that at any given time Mark may need my love, support and assistance. In order for this to happen, I must never forget how exhausting it must be for him to go through his day and not know if his body will cooperate with him. There are days when I am tired and crabby, but remembering that I am essential to his fight, gives me strength.”

Reference:

  1. Louis ED, Ottman R. How many people in the USA have essential tremor? Deriving a population estimate based on epidemiological data. Tremor Other Hyperkinet Mov (N Y) . 2014;4:259. Published 2014 Aug 14. doi:10.7916/D8TT4P4B
  2. Jazz Pharmaceuticals, Inc , Data on file.