Can there be any good to the long good-bye? A question that caregivers and family ask of themselves in the midst of this heart wrenching disease. Last summer, I pondered this question again as I officiated the memorial service for a man in his 50’s. I offer this service to hold space for the experiences of those whose lives have been touched by this disease.
Reading: Excerpt from Water Hyacinth
Now all is upside down,
I sit while you babble
I watch your sightless face
Jerked swiftly here and there,
Set in a puzzled frown
Your face! It is not more yours
Than its reflected double
Bobbing on scummed water.
Other days, the long pure
Sobs break from a choked source
Nobody here would dare
Fathom, even if able.
With you no longer able,
I tried to keep apart
At first, or to set right
The stories you would tell.
The European trip,
The fire of 1908 –
I could reel them off in sleep,
Given a phrase to start;
Chimneys of kerosene
Lamps only you could clean
Because your hands were small…
I have them all by heart.
But cannot now find heart
To hinder them from growing Together, wrong absurd.
Do as you must, poor stranger.
There is not surer craft
To take you where you are going
A story I have heard
And shall over and over
Till you are indeed gone.
Last night the mockingbird
Wept and laughed, wept and laughed, Telling it to the moon.
Sermon: A Reflection on Living and Dying with Alzheimer’s
The poet, Rainer Marie Rilke, wrote, “We know little, but that we must trust in what is difficult, that is, that something is difficult must be one more reason for us to do it. And so it is good to love-love being difficult. Love, says the poet is perhaps the most difficult task given us, the most extreme, the final proof and text for which all other work is only preparation.
We don’t talk about love being difficult much. We tend to talk about the romance of love, or what we love to do. The difficulty of love was made public for me last summer when I officiated the service of 52-yearold man who died of early onset of the Alzheimer’s disease. I first met Ken and his family when they came to a worship service at the UU church in Cohasset the Sunday after Christmas in 2013. He had just received his diagnosis. They didn’t know the topic that morning but as the spirit would have it, I was preaching on the spirituality of Alzheimer’s reflecting on my experience with my dad who died of Alzheimer’s in 2010. I remember asking in my sermon that day, could there be any good in the long good-bye? And I found my answer then, in these words of a wife whose husband had Alzheimer’s: She said “only the good of learning to love more perfectly, of accepting the grace God gives to keep on loving this new someone despite my anger and grief and sometimes despair.” At Ken’s memorial service, the answer to the question “is there any good to the long goodbye?” was found in the way Michelle, Ken’s wife and Abby and Leah, his two pre-teenage daughters found the good of learning to love more perfectly. The way they witnessed and affirmed his new emerging self, and to see in the chaotic moments the beauty of his soul. How they affirmed the new ways he was finding to say “I love you.” I know that this witness took commitment to being there, to showing up, day after day, despite their confusion, sadness, maybe even anger, to keep on loving no matter how little it seemed. A love that invited the light of the larger community. And this the key to it all isn’t it? That in our emergence, in the fluidity of this imperfect life, we find the ways to live knowing love is always present and ask how do we make it real? How do we paint this picture? Michelle, Abbey, Leah, and Ken’s family and friends, painted a beautiful canvass that made Ken’s love real in the midst of a debilitating disease.
What is often not said is how difficult realizing love can be. Abbey, Ken’s 15-year-old daughter, an aspiring artist started cutting herself because the emotional pain was just too great. I wanted her with my words to know that her showing up in midst of all that suffering was painting a picture of love, that she was, and her family was trusting in a love far greater than themselves, and they made it real, and that love is still present, and still endures. The poet Michelle Alexander wrote on inauguration day 2009, “Some live by love thy neighbor as thyself, others by first do no harm, or take no more than what you need” and then she asked, “What if the mightiest word is love?” Trusting that love is present, and that you can make it real is what is asked when caring for people with Alzheimer’s and dementia. And that is both beautiful and difficult.
I remember, eight years ago while on vacation with my family in Florida during the April school break my sister called to tell me that my had lost the ability to swallow. We left the next day and drove from the Florida Keys to Charleston South Carolina to visit him in the hospital. When we arrived he was disoriented, and weak, and the conversation at what could be his deathbed was formal and awkward. Finally I stopped trying so hard and asked if he remembered making French toast for us every Sunday, and how he would wake us up with a Scottish band drum roll on full volume? I can still hear the drum major words, “by the center quick march” I put down the guard rails of his bed took his hands in mine and sang, come sing a song with me, come sing a song with me, come sing a song with me so I may know your mind. I sang all the songs I remembered of my childhood, and he whispered with me the chorus of “My Bonnie Lies over the Ocean.” I found out later that singing activates the long-term memory centers deep in the brain, the last two centers that Alzheimer’s impacts.
My family drove on to Massachusetts, and I stayed for what was to be a two and half week vigil by his hospice bed, the final goodbye in a long series of goodbyes that began over ten years ago, though we only knew he had dementia for the last five. The beginning of these years were hard, his bursts of anger often felt personal, especially before I knew the medical reason for his decline. Still hard even after I knew too. And it was hard, as his world grew smaller, and his attachment to Nancy, his wife, was so strong, he could not easily handle being away from her, even for a few hours with me. That hurt too. Finally, the day came when he needed more care than she could provide and he moved to an Alzheimer’s hall at a long-term care facility. He was only there for three months before he died and during that short time in the Alzheimer’s unit the quality of my father presence changed. Getting him ready for a public outing was often a challenge since he seemed to like to get dressed over his pajamas, and shaving was not something for which he had much patience. One day with Nancy on his right and me on his left, we took to his dry stubble with foam and razors. He fell back on his bed laughing and we followed, he continued to laugh at the ceiling and she and I giggled too as we lay on both sides of him on his bed trying to keep on with the shave. Gone was his attachment anxiety for Nancy, and he seemed so pleased with the present moment, laughing easily at his simple poems and ditties he made up in our conversations. These moments of joyful connection continued throughout hospice. A few days before he died, his group of sailing and cribbage buddies came, and talked back and forth across his bed. To participate, he reached his arm up like a long neck swan, opened and closed his fingers to his thumb, pointing first to the men on one side, and then to men on the other side. He got their attention. And he sometimes spoke with remarkable clarity. After weeks of not eating or drinking, he was gazing so intently at a point above the bed, I asked what he was looking at, and he gave technical name to the yellow electrical attachment beneath the light fixture, as only a son of an electrician could. Making love visible is beautiful and difficult.
We know little, says the poet, but that we must trust in what is difficult. I had to trust that I made the right decision to tell the nurse he didn’t want a feeding tube as he had written so many years ago, a moment that set hospice in motion. I had to trust all the moments during hospice when he looked longingly at the cars in the parking lot, asking to go home, and all the tense moments with Nancy, his wife , as we disagreed how much sedations he should receive as he was dying. And trust when on the day before he died he looked at me and thought I was my mother, and how much I didn’t want to disappoint that long endured longing.
And I know that some of you struggle with dementia, and some of you love and have loved people with dementia and I tell the stories of Ken and my dad this morning in the hopes you claim the enduring love in your life. Pause for a moment and consider your difficult moments, when the mightiest word was love. How did you trust that love is present? What is your knowing of love made real ? Please join me in the spirit of meditation, as we ponder this.
Mystery that you are, we sense, and embody a knowing that our lives are part of a larger Life, that we are indeed connected with everyone and everything in one interdependent web of being, and that there is something, both immanent and transcendent, that nurtures and sustains our lives and Life itself: something that calls us and all life to greater wholeness and harmony. We give thanks for this enduring quality of love as we give name and form to its presence in our lives, in the lives of people we have cared for and who care for us. I invite you to name your people out loud in this public space, so that together we magnify the light of love among us. My dad’s name was Don, and I add Ken. Who for you has made real the mightiest word of love?
In the silence of this room and in the silence of our hearts, may we live with greater compassion for those impacted by dementia, affirming their dignity, and valuing the on-going gift of their presence. May we with our care, touch each other more deeply, hear each other more clearly, and ease each other suffering. Let us enter the silence for a moment. Our last hymn begins with a question “How can anyone ever tell you that you are less than beautiful?” There are many things we can do to tell someone with dementia that they are beautiful. We can become a dementia friendly congregation, creating inclusive space, by learning to recognize the disease, and finding ways to keep people with dementia involved and valued. Also, Jan Maier, a musician, researcher, and nurse who visited us last week told me how much singing can help bring emotion and memories safely forward, and connect people with their loved ones especially after conversations gets difficult. What a wonderful service to caregivers. Let us hold these intentions in our hearts as we sing our last hymn.
May the love you know continue to embrace you, invisible but infinite, intimate and abiding, and may it bring you comfort, beauty and strength in the days, weeks and years to come.