When a relatively young man in his late-40s is diagnosed with a progressive rare disease, where do you turn for help? When it impacts life expectancy and daily living, how do you know it’s time for hospice? What happens when the caregiver needs a break?

These are questions the McCullough family has unexpectedly needed to answer over the past year. Jason McCullough, age 49, is a father, husband, former tech professional, ordained minister, and U.S. veteran with high-level security clearance during his service in the Navy — who now receives home hospice care for Multiple System Atrophy with Cerebellar Ataxia (MSA-C).

MSA-C is a rare condition of the nervous system that causes gradual damage to nerve cells in the brain. It affects balance, movement, and the autonomic nervous system, which controls basic functions like breathing, speech, digestion, and bladder control. Jason’s wife, Wendy, is his tenacious advocate and caregiver. She describes MSA-C as similar to Parkinson’s due to muscle control loss combined with Lou Gehrig’s disease (or ALS). Currently, only symptom management is available, but no cure.

MSA is often misdiagnosed, and patients like Jason live with symptoms for years before a correct diagnosis. It’s often not visible until later stages of the disease. For years, many doctors dismissed Jason’s symptoms and recommended diet changes, psychiatric help, and therapy.

“We were battle-weary by the time we got the diagnosis,” said Wendy of their long path through emergency rooms and perplexed doctors’ offices to MSA-C. Jason began experiencing symptoms back in 2014-2015, but was diagnosed in 2022 after connecting with a neurologist two years prior. Wendy first learned of Multiple System Atrophy when a cardiologist directed her to search for “tilt table exercises” for Jason’s heart issues, and a MSA Coalition playlist happened to come up on YouTube. All of Jason’s symptoms matched MSA, and without her mentioning it to others, his diagnosis came just three months later.

The Road from Diagnosis to Hospice

Married 25 years, Wendy and Jason have a strong family life and deep faith. Wendy said he’s a devoted husband and father who “loved long talks and coffee, wacky jokes, art, and history. He loves God and was generous and loyal to all of his family. He’s the first one who would be there when there was a need.” 

In his spare time, he loved serving the elderly and preached in nursing facilities in addition to  their home church. She described him, prior to his diagnosis, as her “Mr. Fix It” who installed car alternators and re-shingled their home’s roof on his own. Wendy said he’s a dreamer and idealist, unique and mysterious. In addition to the physical disabilities, MSA-C has affected Jason’s ability to communicate and connect at times. 

Finally receiving his rare diagnosis was a relief, and they are now living life within Jason’s new limitations. With Jason unable to work, Wendy works part time as a tax preparer while continuing to homeschool their 14-year-old son. Their other son, age 24, lives at home to assist Wendy who’s the primary caregiver.

Their life is mostly homebound as Jason’s mobility decreases and other symptoms worsen. Decline can happen rapidly after loss of mobility, including fall risks, swallowing issues, and breathing trouble. MSA-C sufferers have survival rates and timelines that vary widely, but can be fatal at any stage with an average of six to 10 years after diagnosis.

Wendy said she learned from online support groups about palliative and hospice care. In the McCulloughs’ rural area of Indiana, hospice was the best available option for Jason’s MSA-C, which was determined to be in late stages upon diagnosis. Jason and Wendy approached his neurologist about the possibility of hospice support, who in turn recommended Heart to Heart Hospice. He was approved for hospice coverage and requalifies every six months based on his disease status and progression.

Hospice Support: “An Oasis”

There is grief for their old life, but hospice has made a huge difference in helping the McCulloughs adjust to their new normal. 

“We could not do what we are doing without our hospice care team! They have been vital to assist with Jason’s progression,” said Wendy. “The entire staff has been compassionate and caring, and they treat us as if we were family.”

She continued, “When a patient gets multiple system atrophy, the whole family gets it.  The whole hospice team has offered us individual, couple, and family support to help us to navigate the challenges of such an all-encompassing disease.”

The services and care they receive from Heart to Heart Hospice include:

  • Aide visits three times a week for personal care and provision of supplies.
  • Nurse visits twice a week to help monitor his health, fill Jason’s med planner, and assist Wendy with medication management.
  • Monthly chaplain visits and twice-monthly social worker visits.
  • Other specialized help, such as respiratory technician visits for Jason’s CPAP and BIPAP machines.
  • Phone calls to Jason’s extended family to explain his disease, care needs, and hospice services.
  • After-hours office number and on-call nurse visits.

After a year of being consumed by Jason’s health needs and him being mostly homebound, Wendy said the nurses encouraged them to put fun and family bonding back into their lives. This resulted in weekly family game nights and special celebrations for their 25th wedding anniversary (with a steak dinner and limo!) and their son’s eighth grade graduation. The hospice team helps make these outings possible. Plus, Heart to Heart Hospice has special veterans services, and Wendy appreciates their compassionate understanding for vets like Jason.

“Hospice has helped make our days better and has improved our quality of life, both Jason’s and as family caregivers,” Wendy shared. “Our hospice team has been an oasis in the proverbial desert. Their services have provided a refreshing to our whole family and this is evident in every way that they have touched our lives.”

Respite Relief

As Wendy was juggling caregiving, homeschooling, and working, the hospice case workers noticed she was on the verge of burnout. They suggested respite care, which is short-term coverage for up to five nights at an overnight hospice facility. Heart to Heart has several inpatient respite centers, including one in Evansville, Indiana, where Jason received care.

Wendy didn’t realize respite care was a possibility, but recognized that Jason would benefit from fresh caregivers for a few days while she managed other things at home. They have also used respite for the unexpected passing of Wendy’s father.

“[Respite] was nerve wracking the first time. I was very anxious about it, to be honest,” said Wendy. “His care is quite intensive, with a lot of medications timed just right.” She wrote a list of instructions for Jason’s routine, and it took her about an hour to brief the respite caregivers on his rare condition. 

The homelike environment of the inpatient center, plus the quality of care, left a positive impression on Wendy and Jason. In fact, Jason wrote a heartfelt letter to the staff expressing his appreciation, which includes these words: “It’s very hard for me to remember names. But I never forget the greetings that follow with unconditional hospitality from the Heart to Heart Hospice staff. Every smile was unique and genuine.”

When It’s Time for Hospice

The McCulloughs’ path to hospice was nontraditional, as Jason’s disease was not sudden (like a stroke), an untreatable cancer, severe injury, or a disease associated with aging. There’s data that shows many families wait too long for hospice, and Wendy agrees with that assessment.

“There’s a stigma that hospice means you’re dying, that it’s the end,” she said. “But people don’t call in hospice soon enough. There’s a lack of education…and a lot of people aren’t aware of the benefits of hospice.”

She added that there needs to be a realistic expectation of hospice; it’s not around-the-clock care, but provides vital supplemental care for the body, spirit, and mind. Hospice offers quality of life at the end of life.

“If you are facing a terminal illness, hospice is a support for the whole family,” Wendy said. “MSA is a challenging diagnosis but even more so without the right support…We love Heart to Heart Hospice and cannot say enough about their level of professionalism and caring.”