Tools: Spiritual Assessment

Identifying Existential Distress

One of the unforgettable conversations I had with my husband occurred the year before he died of Alzheimer’s Disease. And it still haunts me.

I can only characterize it as existential distress. He was having more bad days than good at that point.

He seemed particularly needy, close to agitated and began to cry. I’ll never forget the expression on his face—somewhere between terror and anguish.

“I think I’m dying,” he said.

“What’s the matter?”

“I don’t know I feel like I’m gonne die.”

“I don’t think you’re dying right this minute honey.”

“I’m a doctor, I think I should know if I’m dying.”

I laid down next to him and cradled his head against my neck.

“What are you feeling?”

He started to cry. “I’ve never really told you how much I love you. I love you so much. I love you so much.” Now he was holding onto my body like it was a life raft.

Okay. So this was new.

“I love you too honey. What’s this all about.”

“I haven’t been a good husband. I haven’t been a good father. I don’t understand how you can still love me.”

So. First of all I knew very well how much he loved me because we told each other that everyday, after every phone call, and the last thing before we went to sleep. Was he a perfect husband and father, uh no. No one is perfect at either of those jobs.

But his words and moreso his body language made it clear that he believed what he was saying. That he had let me down somewhere in our long lovely life together, and he couldn’t forgive himself if he didn’t make sure I understood he loved me deeply.

His body shook, he continued to cry and held on to me so tight, it almost hurt.

He just continued to repeat “I love you so much,” and each time, I whispered back “I know and I love you too,” until he fell asleep in my arms.

I was lucky to work throughout my career with great chaplains. I learned so much from these colleagues, but one of the most important things was how to recognize spiritual or existential distress.

The table below was featured in a presentation given by the amazing Sarah Byrne-Martelli, DMinn from Massachusetts General Hospital at a recent Palliative Care Conference, describing themes that indicate when a referral to the chaplain may be indicated. Her presentation can be found here.

My experience with my husband would fall under concerns about relationships, namely unfinished business.

Kestenbaum and others published an article, also describing common spiritual distress themes with examples of what patients might say, such as “I have done bad things to the people I love.”

Find the Kestenbaum article here.

As my chaplain friend tells me often, the two most critical skills are listening and knowing how to just be present for them. There is often no fixing it. There is only offering compassion and reassurance.

I think in late stage dementia it may be amplified by the confusion to a higher level.

When my husband woke from his nap, there was no sign that he remembered feeling that anguish. Not the case for me though. It’s been a year and a half and I find myself glancing at his picture and saying out loud, “I know you loved me honey.”

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