Seize the day.
In the Kottsick home, these are not just words hanging on the wall, but a daily reminder.
For the past 12 years, Julie Kottsick, a mom of two and wife of nearly 22 years, has lived with Amyotrophic Lateral Sclerosis (ALS), also known as Lou Gehrig’s disease. This incurable, progressive disease attacks and disables nerve cells in the brain and spinal cord. As the disease has slowly progressed, Julie has lost control of voluntary muscle movement, including those used to walk, talk and breathe.
After living with this illness for more than a decade, one might think Julie and her family would be weary and resentful. Rather, they are the epitome of love and support. They know all too well that every day is a gift. And with extra care and support from Hospice of the Red River Valley, Julie’s husband, Bud, and children, Evan and Carly, can continue to care for Julie in their home as a family.
Like many families, Julie said initially it was a tough decision to choose hospice. They had done their research and knew about hospice, and the service had been recommended in support groups by others who had experienced this type of care. Julie said the determining factor for her was “a drop in my ability to be mobile and feel normal.” Bud added, “Together, you and I had several conversations about if it was time. But first we had to really understand what it meant to receive hospice care. Sometimes the connotation of hospice is scary.” “But I was ready,” Julie said.
Since December 2015, Julie and her entire family have enjoyed the benefits of hospice care. Particularly, they appreciate the visits made by hospice certified nursing assistants (CNAs) who help Julie with personal cares, such as eating, bathing assistance, and nail care.
“I have a great group of family and friends who come out and visit and make dinner and are there for us. But when I needed help with personal cares, I didn’t want my friends to have to help me with that,” Julie shared. Three times a week, Julie receives two-hour home visits for personal cares from Hospice of the Red River Valley CNAs Arlene, Ursula and Jerry.
This assistance from Hospice staff frees six extra hours in the week for Julie and her family to focus on spending quality time together and taking care of other family needs, and not worrying about providing all of her intimate cares. “I adore them [the CNAs]!” Julie affirmed. And the feeling is mutual; with the gift of time over the past many months, the Hospice CNAs have bonded with Julie and her family, and built rapport and trust.
“When I visit Julie, I see the most beautiful display of love.” Arlene shared. “I wish every school child to college student could meet the Kottsick kids, Bud, and Julie’s parents to see what life, love and support really mean. Julie is so supported by her family. It’s just this beautiful rhythm of support. They make it look so easy.”
The Kottsick family has grown and settled into a supportive “rhythm,” but being a caregiver is hard work. The family has 24/7 access to speak with a hospice nurse, emotional support from hospice social workers and specific instructions for how to best care for Julie at home.
For Julie, Bud and the family, Hospice has been a great source of comfort. “Everyone is so nice and supportive,” Carly said. “I’ve been impressed with the quality of staff; they always find ways to help.” Carly, a high school student who helps care for her mother during the day while on summer break, said with hospice’s support she can go to school and not worry so much about her mom.
Bud agrees and said, “I don’t have to worry about everything alone. I have phone numbers and people to call for help. We had an issue a few weeks ago in the night and I made a phone call to Hospice and received a near instantaneous response. We feel more secure knowing we can rely on Hospice.” Although the Kottsick family doesn’t know what each day will bring, they live their lives true to the art hanging on their wall that Julie so lovingly adores—Carpe Diem.