When I first met him, I immediately noticed his eyes… there was a twinkle, a reminder that despite his confusion, and despite the dementia, he found joy in the smallest of things. Joy for him started with his family, who love him deeply, and in such a way, that I felt it wrapped around me too when I was in their presence… as though it were a scent that wafted through the room. They love him and he loves them, dementia was never going to take that away from them.
He was a collector of many things… one of which is rosaries. He has hundreds of them. When I shared with him that I too collected rosaries, I could see the delight in his eyes that we had something in common. He did giggle though when I told him I only have twelve…. wondering if he thought to himself… “that is not a collection.”
He had confusion because of his dementia, but up until this point, it was not scary, he did not feel fear, it was mostly pleasant. He found joy, he felt love, he laughed, and he was playful. His daughter told me, that when he said “please,” or “thank you,” you could feel that it came from his heart. He was gentle, he was lovely, and I will be forever grateful I was able to see that side of him.
This was one of my most difficult experiences as a hospice nurse, one of which I took many lessons from. While he had been declining for a few years, his last week happened rather quickly, and I was there at the beginning. He was not suffering from physical pain, which I was thankful for, but his agitation was deep and emotional, and we could all feel it. I wanted so badly to bring him peace, and I did everything in my power… we all did. He had an amazing hospice team that rallied day after day to help make his landing soft.
His family did all the hard work though, advocating for him fiercely, and sitting vigil for him every single minute of every single day. It was their love for him, and their dedication to honoring his wishes to not struggle, and to die gracefully that inspired me and kept me fighting hard. The last seven days of his life were not easy. I felt a certain sense of sadness that I was unable to honor him too… and that is where my lessons came from.
I was reminded that we are not God and while we have the experience and education to understand the dying process and how to use the tools, such as medications, to relieve someone of their suffering, at the end of the day we must be reminded that this is not about us. I was reminded that the body will let go when it is ready. Perhaps mentally and emotionally, he was ready… but physically, he was not… and I had to learn to make peace with that.
The morning he died, I gave his scheduled medications, I helped clean and change him, and tucked him under his blankets. I whispered in his ear, “it’s okay to let go now, you can let go, and you are and always will be loved.” I saw one of his rosaries dangling off the bedside rail, I took it off and wrapped it around his hand as though it would offer strength, guidance and grace to his journey and allow him to finally let go… I hoped for this.
A few hours later the family called to say he let go. His wife and daughters and their incredibly amazing caregiver were at his side. The people who rallied day after day and cared for him in a way that I will cherish witnessing for the rest of my life… were at the bedside for his final departure. I smiled and I cried when I got the news…
This was a man who reminded every single one of us how truly precious and fragile life is, to cherish every moment, to find joy in everything, to hold deep in your heart the love you feel for others, and the love they feel for you. The family, and their love for this pleasantly confused and beautifully present man is something I will hold in my heart forever.
Please note: The family has given me permission to share their story and to use this photo... which I took the morning he died.