The Beginning of the End: A Hospice Reflection
This is the beginning of the end (of life). Moments that are not spoken of, that nothing can prepare us for. I had no idea what would be expected of us. All the times that friends were going through this, and I thought I knew.
I knew nothing.
Nothing about the smile and delight and joy on her face, as my mother hugs me over and over again, when I walk into her bedroom at 8 AM, after an overnight flight from across the country.
Or about the adjustable hospital bed, replacing the trundle for the grandchildren in the guest room, and that will soon be moved to the living room.
The bathroom where my friends and I put on our make-up for senior prom, now stocked with adult Depends and wipes and latex gloves.
The doorbell ringing, with a wheelchair delivery—unexpected.
The nurse explaining the bag of medicines that arrived, filling each syringe with a single dose of “just-in-case” medicine, carefully placing each one in a bag and labeling it: “Anxiety.” “Shortness of breath.” “Pain.” “Extreme anxiety.” “Nausea.”
Crying because all—or none, or some—of these things might be ahead of us. Slowly understanding that my responsibilities as the daughter now include assessing her possible need for morphine and helping the home health aide to bathe her.
The hospice nurse telling me, “I’m so glad you’re here” and “We really need to get the DNR in place soon” and “She has had a rapid decline, but she’s not actively dying yet.”
Wondering—if this isn’t dying, then what is it?
Small talk and funny stories over dinner, with no acknowledgement that there is anything unusual about eating on folding tables alongside a hospital bed.
Lighting her Shabbat candles, when she can no longer get out of that bed.
Knowing that for seven years of cancer treatments, she has refused to speak of dying, even though she is an international expert on bereavement who spent years calling for our society to acknowledge that death is a normal part of life. But for herself, she said only,
“My plan is to LIVE.”
Finally recognizing echoes of old superstitions, and realizing that I too will not speak of death now, for I will not be the one inviting the Angel of Death into this home.
Nourishing and healthy dinners delivered by members of the synagogue, adults I remember from my childhood who, 40 years ago, drove me to day school and Hebrew High, adults whose homes hosted our Seders and youth group events, now supporting us in a new way.
A family friend and member of their synagogue, who helped found the Community Chevre Kadisha, who begins our conversation by saying “Ad 120—May she live to be 120” and then cryptically and quietly lets me know that when the time comes (may it not be soon, tfu, tfu, tfu, bli ayin harah) the traditional rituals of tahara and shmira will be performed with respect, caring and awe for the sanctity of the task, by members of her own community, who know and love her.
Waves of grief alternating with moments of pure normalcy. Laughing and teasing each other about all the same things we always do. Folding laundry, making dinner, emptying the dishwasher.
The overwhelming physicality—the sounds, the smells, the textures, my muscles learning how to push a wheelchair, how to lift someone from a chair or a bed.
The heartbreak as, little by little, the body gives out, and the deep awe that these human bodies function so well so much of the time.
The logistics, the appointments, the people in and out of the house, the myriad details that need to be dealt with.
My mother sitting next to me on the couch, sleeping and holding my hand, while I read a book. A simple, sweet, tender gesture of love, so different from the complicated, cognitive, entwined nature of our 50-year relationship.
My father downstairs with a hospice nurse, signing the papers that will soon be posted on the refrigerator to provide instructions for any EMT who enters this house.
Most of all, knowing, with full certainty from deep inside, that we can know nothing. That it may be days, or weeks, or months. That every day will be different. That every hour, sometimes every moment, will be different.
During the good moments, we hope that things are turning around. During the bad moments, we wonder if there will be no more good ones. The situation changes faster than we can adjust to it. By the time we figure out what kind of help is needed, the needs have changed.
My father says: “Our long-range planning goes as far as tomorrow.”
I may go home to my son this week and I may not. If I do go home, I may be called back at any moment, and will hope that I get here in time.
Then a friend reminds me: you are here in time. You’re here. Now. And whatever comes later, you will have that.
Months later, her obituary will say, “She died peacefully at home.“ This will be true. But it will also render all of this invisible.
Gila Silverman is a Jewish educator, researcher and writer. Her first subscription to Lilith, 25 years ago, was a gift from her mother. You can find her online at: gilasilverman.com.
ART: ANNA TICHO, “BOUQUET OF FLOWERS,” 1965, PHOTO © THE ISRAEL MUSEUM, JERUSALEM BY ELIE POSNER