Submitted by Compassionate Care ALS

Dana and Don Vieweg, were introduced to Compassionate Care ALS (CCALS) through their doctors, but didn’t immediately reach out.

“We felt we had enough happening at the time,” Dana said. “Then Don met [CCALS Founder/Executive Director Ron Hoffman] at an event in 2015 and came back so excited.”

The mission of CCALS, an Adira grantee, is to support people diagnosed with ALS, their families, healthcare providers, and communities as they navigate the complexities, both physical and emotional, associated with the disease.

CCALS provides resources including equipment, educational opportunities, Medicare/Medicaid assistance, communication assistance, guidance and awareness with regards to living with ALS, caregiving, and exploring end-of-life when invited.

The Viewegs

A lot to juggle

Don, Dana and their kids interacted with CCALS in many different ways. They looked to CCALS for advice, and received council, guidance and equipment as was needed along the way. Dana still worked full time and was trying to keep it all together while caring for Don and their children.

“There was a lot to juggle,” she said. “There are so many hurdles to jump over and, while you’re dealing with a disease like this, the last thing you want is more hurdles. Ron clears the way.”

One aspect that Dana found to be invaluable was CCALS’ conversations around death and dying.

“CCALS was instrumental at the end of Don’s life, too,” she said. “I didn’t want to call for a lot of things, but at the very end I was having a really hard time. Don was waking me up eight times a night. He was holding on while his body was falling apart.

“Ron helped me talk to Don in a caring, compassionate way about what he was worried about, what he cared about. Ultimately it helped Don feel like, ‘Okay, I’m ready.’ ”

Now, Dana serves as a Volunteer Caregiver through CCALS’ Volunteer Caregiver Program, a project funded through Adira’s second round of Pervasive Needs Grants. She holds space and listens to other caregivers as they experience the realities of an ALS diagnosis.

“When you’re a caregiver for something like ALS, it can be incredibly lonely,” Dana said. “With the exception of CCALS, I never felt I had people to talk with who had lived through what I was going through, who could help me. I felt like maybe I could be that person that I didn’t have for somebody living through ALS now.”

Volunteer caregiving

CCALS continues to impact Dana’s life. She says the Volunteer Caregiver Program has transformed her own healing process. Even as caregivers like Dana support ALS families, they are able to move forward in their own ALS journey.

“It’s helping me process, years later, my personal trauma and allow me to grow,” she said. “It’s been something profound to contemplate and experience. It’s not just the practical skills that have made a difference. I spoke to one woman whose spouse is living with ALS and she told me, ‘It’s been such a relief talking to you and seeing that you have been able to move forward and that there’s hope after.’ ”