The following dvar Torah (mini-sermon) was given at the New York UJA-Federation Roundtable on Aging, November 10, 2016.
In synagogues we’ve just begun reading the stories of our Patriarchs and Matriarchs. These are family dramas, grappling with the fundamental issues of life and death facing any of us. At the very end of this narrative here’s a provocative and beautiful midrash—a rabbinic riff on the literal Torah—claiming that Jacob actually invented illness. The midrash is built on an observation that until him, the Torah never mentions anyone getting sick. Abraham died healthy and happy—זקן ושבע ימים. So did Isaac; the Torah uses the same words it used for Abraham. But then Jacob: “ויאמר ליוסף הנה אביך חולה.”
So what does Jacob do? He calls his sons to his deathbed, and says to them everything he needs to say. Jacob understands that if he wants to tell his family what’s important to him it’s now or never. Confronted with illness, a time limit, he creates a living will.
I can’t help but wonder: what would Jacob do if he had dementia? If we can’t keep the names of our children, how can we tell them what we had been meaning to all these years? This is the maddening thing about dementia, the thing which makes Alzheimers and its cousins exceptional among illnesses; they seem to rob a person of the opportunity to make use of the knowledge that time is limited.
Nevertheless, people occasional break through.
I recently ran into a teacher of mine whom I hadn’t seen in a few years. I told him what I have been up to professionally, creating an organization to find more and better ways to help people affected by dementia create meaning and comfort. My teacher responded with a story he had heard about a very old man who was deep into the post-verbal stage of dementia.
This man had been religious in his youth. One day, his caregiver had a thought to dust off the man’s tefillin (phylacteries) and lay them on his arm. Immediately, the man, who hadn’t said a word in years, uttered the blessing over tefillin. He then proceeded to recite the Birkhot Hashachar, Shaharit, the whole morning liturgy, to the end. Hundreds of words. Remember, this is a man who hadn’t spoken in a long time. But the feel of the tefillin brought words back.
I imagine that for most people working in geriatric fields and with an interest in dementia, this story, in itself, isn’t all that remarkable. Many of us have more than a few firsthand experiences of people with advanced dementia who suddenly become animated and even articulate when someone knocks on the right memory-door.
Dan Cohen, the founder of Music and Memory, does this with music. The concept is elegant and simple: make a playlist of the music a person with dementia loved in his/her childhood, the songs they danced to at their wedding—music with personal meaning. Put the headphones on and that person likely becomes more lively and shows higher affect. An independent study done by Brown University shows that Music & Memory improves health outcomes in all kinds of ways, from compliance with caregivers to nutrition to an 11% reduction in the need for psych meds.
We now understand, since the rise of the person-centered healthcare movement, how important for the health of person with dementia nonmedical, environmental factors are—not only the music they hear, the objects they are given to hold, the view from their windows and the duration of a caregiver’s eye-contact. We’ve begun to incorporate that knowledge into every aspect of institution-based assisted care, from architecture to the way we serve food.
To me, what is remarkable about the story of the man and the tefillin is the very fact that it’s remarkable, that my teacher chose to tell it, as if he was sharing something esoteric or uncanny. It’s remarkable that it took years for anyone to think of giving that man his tefillin. It might have happened by accident: “I was cleaning out Grandpa’s closet and I came upon the velvet bag with his morning gear. And I had this thought: I wonder what would happen if…”
What all this means to me is that the best kinds of spiritual/paliative/emotional care done in our brick-and-mortar dementia residences by chaplains, art therapists, our psychologists, our social workers floor aids, is not yet known by the public at large. It’s knowledge that would be useful to us—before we make it all the way to assisted care.
Wouldn’t it be better if we lived in a world where, long before you or I started to get dementia, when we’re still living where we live—we’re even working our jobs—we would already have given considerable thought to what songs, objects, pictures which, should we get dementia, would have a good chance of helping us stay emotionally connected to the world.
If we could talk a little more openly about dementia—now—to demystify it just a little, we’d be able to better prepare ourselves for it. We now are encouraged to write advance medical directives as early as possible. And we’ve made good headway into creating living wills. It wouldn’t be hard to attach a rider to the living will, one to be enacted before death, containing a list of our 50 favorite songs, so that we can swing, fiddle, rock or davven our way into deep forgetting.
The very process of making that list would give us an opportunity for life review.
“Why that song, Pop-pop?”
“That’s the song your Nana and I danced to at our wedding.”
Mark Vanhoenacker, in a piece in last Sunday’s NYT titled: “My Deathbed Playlist,” cites Paul Simon saying: “music should continue ‘right up til you die’.” The songs gathered now in the midst of life give shape to that life, and supply meaning and comfort until death. So what we are accustomed to thinking of as mere palliative care for the patient can open up into the endeavor to find meaning and comfort. For us. Here. Now.
If Jacob were alive today, he’d outsmart dementia by writing his living will early, years before the first time of leaving his car keys in the refrigerator. I don’t know whether Jacob wore tefillin. The person who wrote that midrash probably thought so. But if Jacob did, he’d instruct his children early on to keep them close at hand. He’d tell the kids which songs he and his wife danced to at their wedding. No, not that wedding. The other one. And he’d tell his children: get your playlists together, while you can.
So, what’s on your play list?