Home Is Everywhere: Adventures Of An Itinerant Homecare Nurse

1 Mall People

Those who have little give much.

I’M NOT SURE ANYONE KNOWS where Ralph’s chili comes from. But every Thursday at precisely 10:30 a.m. you’ll find Ralph on the 16th Street Mall ladling thick red chili into paper bowls from a battered enamelware pot. Vince, manager at Dairy Queen, provides plastic spoons. 16th Street Pedestrian Mall opened in 1982, linking Uptown (Capitol area, Denver Library and Art Museum) to Lower Downtown and Union Station. Every five minutes a free Mall Shuttle bus going Uptown passes the shuttle going Downtown. Buses stop at corners where passengers hop on and off on their way to offices, retail stores, restaurants, fast foods, bars, and souvenir shops. A common area runs the full length of the Mall. White plastic lawn chairs and cement benches provide an area where Mall People play Monopoly, shoot the breeze, solve Word Search puzzles, and eat lunch. At Curtis Street an old upright piano, recently painted psychedelic colors, attracts various keyboard artists. Some days it’s jazz, some days classical, and sometimes it’s two friends plunking out Heart and Soul. Brendan Callahan fiddles Irish reels and ballads at Stout Street near an Irish pub. Passersby stop to listen and go away with tears in their eyes. He could be an Irish Rover he’s so talented. The Pencil Guy sits on the sidewalk in front of Famous Footwear with his ceramic mug of #2s nicely sharpened and pant legs folded beneath him. Trees planted along the Mall have matured.

Several of my home care patients live downtown so I visit the Mall often, getting to know Street People regulars. I enjoy talking with them. Most have had very interesting and surprising lives. Lives that haven’t always been easy or kind.

You know when Ralph is out and about. You can hear the hum of his motorized wheelchair. You’ll also recognize the thickly bandaged legs and feet with purple toes sticking out. Ralph is unable to take more than a few painful steps because of chronic venous stasis ulcers. In plain language blood in the veins of the lower legs becomes sluggish causing marked swelling. Sometimes ulcers weep clear fluid and require regular wound care with gauze dressings to keep them from becoming infected. When ulcers aren’t infected dressings can be changed once or twice a month. When the ulcers become infected, they require changing three times a week. Sometimes daily for seven days. Here’s the problem we faced. When ulcers are infected the payer changes from Medicaid to Medicare. Medicare requires a person stay home for the entire 60-day certification period. Except for medical appointments, the patient can’t leave home. Agencies are being heavily fined for not meeting this requirement. It’s a constant dilemma. More like an ongoing argument. Keeping Ralph at home so an infection can clear has been almost impossible at times. A few times I’ve had to insist on switching to Medicare.

You know Ralph if we don’t get this infection under control you’re going to be sitting with The Pencil Guy. Or worse. I threaten him.

OK, he pouts. I’ll find someone for Thursdays.

On occasions he’s homebound he sits in his third-floor window at Halcyon House looking down at the Mall. Friends wave and share Mall and Street news via pantomime. He gestures the number of days he has left to endure.

It’s all your fault, he says to me. "Pure torture. Like a cage. I guess there’s one positive: I’m free in two weeks. Good thing; just in time for Halloween. I’m going to Trick or Treat on the Mall as The Mummy. I already have the leg bandages."

Sixty days are almost over. The ulcers are healing nicely. The infection has cleared. I see him out on the Mall the next week, a week earlier than his release date. Reluctantly, I’ve switched back to Medicaid. He could have benefited from finishing out the sixty days. I was lucky to get him to stay put for four weeks.

At least promise me you’ll lie down and elevate your legs for at least an hour a day. Staying up all day makes them so much worse. How long have you been up today?

Naw, haven’t been up too long.

You know I can tell when you’re fibbing. All I have to do is look at the swelling and dressings.

Well, maybe just don’t look down at my legs. Maybe I wear a lap blanket. Maybe you can just say you didn’t see me here. Right? Want a bowl of chili?

Mall People lunch elsewhere on Monday, Tuesday, Wednesday, and Friday. Sandwiches are distributed at St. Elizabeth’s at noon Monday through Friday. The Salvation Army serves a warm meal daily at 11am. Fr. Woody at Holy Ghost has hot soup available all day.

Most of my patients live in subsidized low-income apartments at Halcyon House on the corner of the Mall at Arapahoe Street. One of Colorado’s success stories of de-institutionalization is twenty-four-year-old Steve Summers, born with cerebral palsy, who has his own apartment and works at Tattered Cover Bookstore Downtown. Steve’s apartment is sparsely furnished to accommodate his mobility needs. He walks with elbow crutch canes and is quite mobile. A fireman’s pole from ceiling to floor is positioned next to his mattress on the floor. He rises from the mattress to standing by pulling up the pole with his arms. Each morning a caregiver visits for four hours; helping him shower and dress for work, preparing meals, grocery shopping, housekeeping, and laundry. I visit monthly to do a health and wellness check. Last month he showed me scabs on both elbows and a cut on his knee.

Ouch, Steve, what happened? He rarely falls and is a pro getting up and down curbs, on and off buses and walking on a sidewalk alongside others.

I was coming out of Halcyon and one of those little yip-yip dogs was off leash. Just as I stepped out, he ran in front of me. His owner was chasing him so fast she’s the one who knocked me down.

Stella, Steve’s eighty-one-year-old neighbor is currently receiving blood thinner injections for ten days. That gives me time to make a quick stop on the Mall to say hello to everyone. Steve has become Stella’s adopted grandson. Sometimes Steve’s girlfriend shares an evening meal or watches a movie on CD with them.

Street People of 16TH Street Mall are a community. A tight knit neighborhood of friends who treat one another with dignity. Everyone helps each other. They have little and give much. I’m ashamed for the times I’ve referred to Halcyon House as Hell House. It’s not the upper rent district and like all aging buildings maintenance is often long overdue. But it’s home.

This isn’t the first time I’ve made home care visits in this area. While working at National Jewish Hospital in 1990 I was recruited to volunteer at Stout Street homeless clinic on Saturdays. In 1989 Mother Theresa of Calcutta visited Denver and announced she was sending her Daughters of Charity to Denver to assist with the AIDs crisis.

I have a gift for you…. I will give you my sisters and I hope that, together, we are going to do something beautiful for God, stated Mother Theresa’s announcement to the Rocky Mountain News.

The first group of Sisters moved into Seton House in January 1990. It had been renovated from a Catholic high school to a residence for the sisters and hospice care for AIDS patients. One summer Saturday the Clinic received a call from Seton house.

Mother Superior wonders if one of the volunteers might be free to sit with a hospice patient. I was more than happy to help. We’d seen most of the drop-ins at the clinic and I didn’t mind walking the two blocks to Seton House. Mother met me at the door.

Thank you. I’m glad you were able to come. You’ll be doing something beautiful today. Jack has no one. He has pneumocystis pneumonia and is in the early stages of dying. His parents have abandoned him, and his partner Pat is grieving and unwell. They live at Halcyon House. Jack is all alone.

In those early years when AIDS was a curse the Sisters carried on, holding the dying in their loving care. What did Jack see when he closed his eyes at the end? Sister’s beautiful smiling face. I only made that one visit. 1990 was the first year I started home healthcare nursing and spent the rest of my life in homes everywhere.

2 Becoming A Road Warrior

Oh! The Places You’ll Go

—Dr. Suess

WHEN MY WORK REQUIRED OUT-OF-STATE TRAVEL, beginning in 2001, adventure also became my life. Jobs fill your pockets, but adventures fill your soul. Travel is in my DNA. I easily settled into the life of a woman business traveler for fifteen years. I think of travel as an occupation that requires a sense of humor, a lot of flexibility and a positive attitude. Travelers who survive are the ones who design travel routines that keep them healthy, happy, and sane. I didn’t just survive—I bloomed. I credit it to a few habits that worked.

I was loyal to one airline and enrolled in that airline’s frequent flier mileage rewards program. For many flights if the primary airline doesn’t fly to a particular city they partner with another airline as a code share. Every flight I reserved a specific seat assignment – mid-cabin, Row 17 or 18, window seat on the left side, if traveling West; window seat on the right side, if traveling East. Guaranteed best scenic view from 35,000 feet. Being in a window seat necessitated carrying a 12-pack of pocket Kleenex. Middle seat passengers, at least those who always seemed to sit next to me, without fail, coughed, and sneezed on me and wiped their dripping noses on their sleeve-- year-round; allergies, flu, common colds. To get to the lavatory, I learned to somewhat gracefully climb over passengers B and C who were engrossed in a movie, sleeping on their tray table, or writing a year-end earnings report. What to say about the lavatory? I had nightmares about being locked in or sucked down and out to the wild blue yonder.

I never signed up for airline brand credit cards that gave miles for purchases. Travelers who earned miles other than by flying, were looked upon as traitors. I learned to sleep anywhere anytime—upright in a chair, on a couch in a hotel lobby, against an exit window or snoozing on my tray table. Sleeping on the floor in the gate area is far preferable to snaking around those miserable metal arms on bench seats. Pillows on planes were still available without cost. Imagine that! I was fine with a rolled-up jacket or sweater. Poofy neck pillows were fashionable but rarely worn by business travelers. I invested in a good pair of noise-reduction headphones and carried a six-outlet power strip in my briefcase. Yes, it’s true that airport terminals were notorious for a scarcity of power outlets. The lucky person locating a wall outlet became a best friend to five others.

I learned the hard way that carry-on bags will be checked to your destination (against your will) IF you don’t follow the requirements— 22x14x9," whether soft-sided athletic bag or roller bag with telescoping handle. I kept a wallet with identification and emergency info, boarding pass, and cell phone in a cross-body bag instead of a purse. A 5x7 inch lined spiral notepad went with me everywhere, ready at an instant to document something that caught my eye. All those somethings came to be this book.

As a person who hates