If you came here to watch someone die, you came to the right place. If you came here to help, grab a pair of gloves.
“I’m a mess today,” Alice calls as you enter her home. Blinds up. Heated bathroom light on. Pants, sweater, blouse, camisole, underwear (lined with a day pad), wool socks: lay them on top of the washing machine in the bathroom. Place the walker at the bedside and scoop up a pair of speckled legs thinner than your forearm. After a five minute routine of ankle circles (to get the circulation going), help walk Alice to the bathroom, left hand on the small of the back, right hand cupping her shoulder bone. Sit her on the toilet. Shut bathroom door or risk Alice complaining, “You’re showing me to the road!” At 98 Alice still has spunk.
If you see her dentures, soak them in water, place her wristwatch and chest monitor on the counter, discard her diaper in the trash, tie the trash bag and leave it outside, get the shower water running.
“Wash her back, underarms, stomach, legs while she’s sitting. She’ll wash her face. Stand her and wash her bottom thoroughly,” instructs Colleen Swiderski, one of Alice’s four attendants and a certified home-help aid. She explains the job as you go through the motions. This is hospice care, a philosophy of emotional and physical treatment aimed at the comfort of the patient at the end of her life. It is not to keep her from dying. It is to make the transition from life to death kinder and easier. Alice is treated from home. Her bottom is chapped a dark red. Scrub lightly.
“Don’t be afraid to touch me,” Alice says. Scrub harder. When her arms start to shake, she’s tired. Water off, towels on: one draped over her back, one across her legs. Lather Sween Moisturizing Body Cream on the raw skin on her bottom. Then: Underwear up. Camisole down. Pants up. Blouse down. Left sock up. Sweater down. Right sock up. Done. Apply Super Polygrip to dentures and give them to Alice on a small washcloth. If you hadn’t found them on the counter to soak, Alice still has them in from the night before.
Never question Alice’s ability to make decisions for herself. Don’t argue if Alice wants to keep her dentures in so she can nibble on the chocolates on her bedside table during the night. Don’t get frustrated when patients want to take control, even if it interferes with your job.
After the shower routine (don’t forget the hearing aid or the glasses), help her to the reclining blue chair beside the glass paneled doors looking out over the ocean.
Listen when Alice says “That’s our rock.” She points out the window to a rock jutting out of the surf. Nod to tell her ‘what a nice rock.’ Alice explains that when she was a middle school teacher, her classroom was so quiet that people used to joke that she hypnotized her students. Believe it as you feel that silence descending over the sun-drenched house.
For now, you help with the everyday: Prepare breakfast. Fill the electric water heater, portion out one spoonful of instant coffee into a clear glass mug. Bring her one cup instant coffee, one slice of toast (cut diagonally in fourths), eight to twelve Frosted Mini-Wheats. Remember: separate spoons for the coffee, jam, and cereal. Don’t pour the milk or the coffee creamer. She’ll do that herself. Ask Alice if she wants hot cereal or cold. Pause – just for a moment. If you came here to watch someone die, you couldn’t have come to a more beautiful place.
Never think about the fact you’re working hospice care. Don’t dwell on the stories Colleen told you about the patient who bled out of his mouth, or the patient who died in her arms, or the patient after patient who soiled the bed night after night.
Still, remember your job. Practice how to fasten the orange Do Not Resuscitate bracelet, pinned to the phone beside the elderly woman’s reclining chair, around her quarter-inch thick wrist. Worry that it seems like Alice’s family, as Colleen tells you, is “just waiting for her to die.” Examine the evidence: they never buy her new nightgowns. And they only come by to say ‘hey Mom’ and borrow her copy of the New Haven Register. “You’ll see that,” Colleen warns.
Don’t panic or call the hospital if something goes wrong. Fasten the bracelet tight around her wrist and call the family. Let her die: that’s your job description. Then again, even Alice will readily admit that no one wants to live until she’s 98. When her legs shake in the shower, or when she leans back into your arms and waits nervously for you to lift her into bed, she knows how little is within her control.
Bring her one cup instant coffee, one slice of toast (cut diagonally in fourths), eight to twelve Frosted Mini-Wheats. Remember: separate spoons for the coffee, jam, and cereal. Don’t pour the milk or the coffee creamer. She’ll do that herself.