Here, our facilitator and head of Grace Pastoral Care, Florrie Munat, tells a precious piece of her own story. Read more about Florrie at the end of this entry.
|Photo by Taisiia Shestopal on Unsplash|
My husband spent six years in a nursing home where he struggled with Lewy body dementia. Unlike most dementias, Lewy body is characterized by what neurologists call “fluctuating cognition.” So on some days Chuck could be quite confused; on other days he was clear and articulate. Fortunately we were able to use some of his moments of clarity to talk about his end of life decisions.
One afternoon as I was pushing Chuck’s wheelchair past the nursing station, I saw him staring at several residents slumped over in their wheelchairs. Back in his room, he instructed me, “Don’t let this place prolong my life. I see those poor people in the hallway, and I'm afraid I might become one of them."
A few days later, I drove him to a bakery where we sat outside on the patio. Using the Five Wishes document as our guide, we began to talk about what he wanted to happen at the end of his life.
Gripping his latte with both hands, Chuck listened carefully as I read him questions from Five Wishes. I wrote down his answers and asked for clarity when I needed him to say more. Tears ran down our cheeks while I transcribed his wish to refuse life support: no CPR, no feeding tube or artificial hydration, no ventilator. But we both knew there was no cure for Lewy body. If he contracted pneumonia, he did not want antibiotics. Five Wishes also asks questions about the time near death. Would he like us to pray over him? No. Did he want us to hold his hand and talk to him? Yes. Did he want warm cloths on his face? Yes. Would he like us to play his favorite music on his boom-box? “Yes. I'd like to hear Irish harp music.”
By answering these questions and others, Chuck spared me the agony of having to make decisions for him during a health crisis. Knowing his wishes gave me comfort as I walked the long journey of loss that dementia caregivers know so well. They also helped me face my own mortality.
Our talks about death were the most difficult, important, and intimate conversations of our marriage. Now that Chuck is gone, I look back with love and gratitude for his last gift. This is why talking about End of Life matters to me.
Florrie Munat, our head of Pastoral Care Ministry at Grace, is a deep well of information and wisdom and a gentle shepherd to so many at Grace who need resources and support during challenging times. She's also an author and has written (among other pieces) a wonderful book called Be Brave: A Wife's Journey Through Caregiving.