When Kristin Sedate’s father was diagnosed with ALS in 2014, she stepped in to serve as one of his primary caregivers. Read her story about their journey through ALS and what your donations meant to their family.
I was 43 years old and enjoying my mid-life years of watching my boys grow up in the San Antonio elementary/middle schools with their friends that they had been attending school with since kindergarten. We had lived in the same house and neighborhood for 12 years, and I had gone back to work as a high school teacher in order to start saving extra money for our sons’ future college expenses. Life was great. And then the call came. My dad, who lived with my mom in Houston, called to tell me he had received an ALS diagnosis. As an avid baseball fan and a high school anatomy/physiology teacher, I was familiar with the gravity of Lou Gehrig’s Disease. My brothers and I had known something was not quite with dad for the previous year, but it took several appointments with specialists to find the culprit.
Within the span of four months, my life changed dramatically: I stepped down from teaching, we sold our house to move across town to a larger home (that could accommodate my family of four along with my parents and that would be wheelchair friendly), my boys had to change schools, my parents came to live with us, I began taking my dad to countless doctor appointments, and my mom and I became full-time caregivers for my dad.
All of our time, energy, and financial resources were poured into caring for my dad. My parents had Medicare health coverage, but as I soon discovered, getting medical equipment approved through Medicare is not an easy task. The cost of doctor appointments, needed equipment to breathe and eat, ramps, home modifications, prescription medications, a mobility vehicle, home care help, wheelchairs, etc. is astronomical for a family. It has been estimated that it costs $200,000 or more per year to care for an ALS patient. My parents were living on a fixed retirement income, and I had stepped down from my job. The stress of everything was overwhelming. But that is where the ALS Association came in. They were the emotional and financial support for us when we did not know where to turn or what to do.
While Medicare took six months to approve a Bipap machine that my dad needed to breathe, the ALS Association immediately sent a Bipap to our home from their equipment loan bank, along with a Respiratory Therapist who volunteered his time and expertise to show us how to use it. For the first time in months, I saw my dad able to take a deep breath. The ALS Association also brought ramps out to our home so my dad was able to get to his mobility van so we could take him to his doctor appointments or to go see his grandsons play baseball. We received several grants from the ALS Association that helped reimburse us for out-of-pocket expenses that my dad’s care had required. They provided caregiver support groups and family support groups on a monthly basis. It was so important emotionally for us to know that we were not alone. They provided webinars, DVDs, and printed material that helped us navigate the latest information and available resources for dealing with the disease. They had a representative at every ALS clinic appointment to answer questions or concerns we had, and they also provided a delicious lunch for our family before the long clinic day appointments began. I cannot list all the ways the ALS Association was there for us without making this letter too lengthy, but they were there for us emotionally and financially in countless ways.
My dad passed away in December 2015, 21 months after diagnosis. My family has continued to receive care and support from the ALS Association even in our grieving. Even though my dad is no longer with us, we continue to take part in the San Antonio Walk to Defeat ALS and donate to the ALS Association whenever we can. I cannot think of another charity that is more deserving and careful with every dime that is donated. I can promise you that if you give to the ALS Association, the money will be used in the best possible way to support families emotionally and financially that are trying to care for their loved one as they all face the debilitating and terminal nature of the cruel disease that is ALS. How amazing to think that we could help find a cure, as well as support families that are currently living with the disease, by donating to the ALS Association so that very soon other families may not have to go through what our family and so many others have gone through.
Daughter and former caregiver of an ALS patient
To join the fight against ALS, visit alstexas.org/get-involved.