Profiles in presence: Darrell Cosden

For 2026, our interview series will highlight a few of the people The Peaceful Presence Project has had the honor of serving, offering you the opportunity to get to know their stories.  This is the first story in a series that chronicles the personal story of a TPPP client family.

Interview with Darrell Cosden in his own words:

Darrell and his wife Kristy moved to Central Oregon in 2022 to live in a geographic area that appealed to them and brought them closer to their daughter in Portland. By June of the following year, settled into their new community and jobs, Darrell and Kristy looked at each other and each said, “I feel good; I’m content. I love this community and the nature around us. I don’t need to be doing the big career job any longer. We can manage just like this.” By that summer, and after experiencing long-Covid symptoms from a 2nd infection, tests and a visit to a physician confirmed Kristy had ALS.

For the next two months, Kristy spent countless hours on the phone with insurance companies trying to get approvals for drugs that slow the progression of ALS. “Not that we knew how long the illness would go. Gaging something like 2-5 years, we figured, worst case, two.” When she was finally on a medication regime - the sad consequence was that the drugs made her worse. We wasted her healthiest time.”  And yet, who could predict the pace that Kristy’s disease progression would take.

“By Easter of 2024, Kristy was in a wheelchair. We just couldn’t keep up with the rate of progression, and it had nothing to do with the care we were getting from our ALS team. We’d figure out how to do stuff, and within a week we could no longer do it that way. We had no time to ‘enjoy’ our lives or each other. By June we had to move to a downstairs apartment.” At this point, Kristy suffered deep depression as she needed a hoyer lift for transfers and her personal care became far more cumbersome. Necessarily, “toileting became our all day obsession”, absorbing more time and energy than anything else. In September, we started to bring in a caregiver.” Within a month, the ALS team revised their estimate, telling them that Kristy likely had only six months left—until the following spring.

Meanwhile, as so often happens, Darrell’s health was being seriously impacted by the stress of Kristy’s illness. Starting as major dizzy spells, he was diagnosed with a blockage in his brain. (ultimately Darrell would have major heart surgery). That fall, most waking hours were spent trying to get Darrell into counseling, increasing and managing care at home, connecting them with The Peaceful Presence Project, and addressing Darrell’s own ongoing health issues. 

Kristy was able to enjoy Thanksgiving but within a week, she went rapidly downhill once again. “This was when we decided to call TPPP and met our doula Kari.” Simultaneously, Kristy went onto hospice services. “We modified our goals and my plan was to get everyone here for Christmas. When Kari came the first time, the focus was legacy projects, organizing photographs and the like. We got all the dying paperwork done, some we had done before but had to modify now. She asked Kristy where would you like to be buried and all of that, just saying, ‘let’s get this out of the way now’. We didn’t realize we needed to think about that now, but it was a good thing, because within a few days, Kristy is in terrible pain, hallucinating, and I’m a disaster, trying to move her; my hip hurting so bad, not being able to sleep . . .” The situation was overwhelming on so many levels. 

The decision was made on December 17th to move Kristy to Hospice House for pain management. Their daughter had arrived from Portland, and their son and his wife were planning to fly in from the east coast a few days later, anticipating that Kristy would be home for Christmas. Darrell offered this anecdote:  “When my daughter was little and all the way through high school when she was stressed Kristy would hold her hand and sing “Edelweiss” to her. During our visit at Hospice House, my daughter takes Kristy’s hand and sings Edelweiss to her, and she’s aware enough, trying to sing along. . . then at 5:45 the next morning we got a phone call that she had just passed.” 

“I didn’t know what to do. I called Kari, and she said, ‘Don’t worry; I’ll meet you there. There is no rush. You may want to bring a few things from home.; I will be there waiting for you, ready to help. We can make this a very special time. So we did.”

“Once Kari arrived we decided that my daughter and I would like to help wash her. Kari guided us.. Kristy had decided that she wanted her body to be donated to research, and Kari said, ‘have your time with her’, then she went out and in a matter of minutes she figured it all out. All we had to do was sign the paperwork. You have no idea how helpful that was. She guided us through every step while never being in the way. . . . between the ALS Clinic in Bend, Peaceful Presence and hospice, all working in coordination, I was able to survive this.”

“I am sad that there are places in this country that don’t have what Peaceful Presence does. Honest to God, how do people do this without end-of-life doulas?  It’s maddening that this isn’t the norm! I was already traumatized; I was paralyzed. I honestly don’t know what I would have done if Kari hadn’t been there. It is my personal belief that I would not have made it. My one wish is that we understood that The Peaceful Presence Project would have helped us much sooner. We heard ‘end-of-life’ and said, that’s not us. End-of-life doesn’t start at the very end-of-life!”  

It is incumbent on us to get this message out loud and clear so that people can benefit from the full spectrum of doula services.

Darrell strongly believes that people connect with their emotions, their spirituality, and can process these hard life experiences through the arts. “My way of dealing with the first five to six months of this experience has been by chronicling that journey through my songwriting. I wrote several songs, and have now produced two songs that can be heard on Spotify.” To hear Darrell’s marvelous music, go to Spotify and find “Doc Cosden”. The songs are ‘Tangerine Sky’ and ‘Cold Night of Day’.

 We are humbly grateful to Darrell for sharing his and Kristy’s story.