My Mother, Marcia Studler was a vibrant lady, beautiful, active in our community, wonderful mom and grandmother. I was her only child, and for two years she and I battled the effects of a disease that left her unable to move her body and eventually not even breathe on her own.
Mom passed away on June 4, 2002 with ALS, an incurable and devastating disease that affects all races and ethnicities, men only slightly more than women. The effects of the disease kept us running to the ER for help. Mom fell 55 times in two years. She and I spent many hours traveling and waiting for help at the ER. At the time, I didn’t realize hospice could have helped us. She and I could have both benefited greatly from hospice care during this time in our lives, if only I had known about hospice.
ALS (Amyotrophic Lateral Sclerosis) also known as Lou Gehrig’s disease affects the motor neurons and causes rapidly progressive muscle weakness. At first, muscles get weak or stiff. Patients have trouble with fine motor skills like buttoning a shirt or turning a key. After a while, movement of the arms, legs, head and body are greatly diminished, and eventually all ability to move and breath independently are gone.
Mom and I missed out on much of the joy we could have shared during her last days. Instead, the full burden of delivering care, obtaining equipment, scheduling additional care, and sustaining my family’s needs for comfort weighed on my shoulders. A world of problems circled around a never ending need for medications, braces, scooters, personal care, household help, spiritual and financial strains. Hospice could have helped lessen my burden by providing care, medication and equipment for Mom.
My Dad passed away at 46, too young, from heart disease. My husband was as helpful as he could be, I had recently gone back to college, and life with our five year old still revolved around the usual school, swim team, gym team, and piano lessons. My Mom saw me struggle with the strain. Her brain still worked fine. Her bodily function was the deserter we all saw escape, leaving her devastated and me without the knowledge of hospice care and resources.
Hospice finally found me, years later. I am now a Patient Care Representative at Hospice Home Care in Hot Springs, Arkansas. I work to share with others, who are facing the death of a terminally ill loved one, the rich benefit of hospice. The incredible support from hospice professionals who are trained in providing comfort and a variety of resources to patients and families at the end of life are second to none.
Hospice is the highest level of care someone with a terminal illness can receive.
Hospice is a service provided for by Medicare and Medicaid, with no additional cost in most cases. Even after a loved one passes, Hospice provides 13 months of bereavement care to the family. That would have really helped me when Mom passed away.
Hospice can literally add life to the days patients and families are able to spend together at the end. Hospice care is comfort care, and with a diagnosis of six months or less to live, patients and families are enabled to focus on each other instead of the disease that’s limiting their time.
Hospice pays for medications, equipment, personal care and supplies, 24/7 access to medical care and regular visits by a team of professionals including a registered nurse, social worker, chaplain and clinical nursing aide. Medical Directors utilize registered nurses as their eyes and ears, review patient charts and make comfort measure changes to provide patients and families the most comfort with less stress.
I think about the hours I could have shared with Mom to remember the good times, to laugh together and cry, but mostly to have more good moments and fun together before she passed. Hospice could have helped, if I had only known it was a choice.
Cyndi Muncrief is a Patient Care Representative with Hospice Home Care that is headquartered out of Little Rock, Arkansas. Her Mother was Marcia Studler. Together, they struggled with Marcia’s devastating prognosis never knowing, while she lived, that hospice was a resource they could have used to carry much of the burden of Marcia’s care during the last days of her life.