Sunday, September 16, 2012

25. Home Care: The Human Component

It wasn't Ann's favorite visit, the six-flight walk-up in the East Village, a shabby apartment with strange smells and no ventilation, but the elderly woman was diabetic and needed an injection of insulin every day, and as a Visiting Nurse she went wherever they assigned her.  Her patient was a Russian lady with little English, small, shrunken, but round, always wearing a nightgown fastened with a clasp, barefoot, with no bra, so that her ample breasts sagged down to her navel.  To communicate they used sign language and gestures, though the woman could manage a few words of English.  Also present, invariably, was a small dog, always silent, with matted yellowish hair, and cancer sores around its rear end: massive, cratered lumps draining smelly pus.  Ann thought the poor creature should be put out of its misery, but it was the old woman's only friend, rubbing against the woman's leg with affection.  Ann's work there was done quickly and she was glad to leave. 

As the visits multiplied, the woman referred at times to her son, but no son was ever present, though a door to another room was always shut.  Often, as she attended to the woman, Ann would hear the creaking of a door being slowly opened, and she had the eerie feeling that someone was watching her.  But when she finished and said good-bye to the woman, there was no one else there.

Finally, one day while Ann was preparing the injection, the mysterious door opened slightly and a man's head protruded.  He watched her, then slowly came out into the room.  Tall and fiftyish, with a dead look in his eyes, the man was wrapped from neck to toes in a sheet and nothing else: a living mummy.  Since this was obviously the son, Ann managed a faint greeting and asked him why he had wrapped himself in a sheet.

"Don't you see them?" he replied, gesturing toward the empty air around him.

"See what?"



"Yes, bubbles.  Bubbles everywhere.  Don't you see them?"

'Well, yes.  Yes, I guess so."

"In each bubble there is a tiny person.  If one of those bubbles touches my skin, it will burst, and that person will get inside my mind and tell me what to do.  I don't want that; the sheet protects me."

"Oh.  I see.  Yes, it protects you."

"I'm telling you this because I trust you.  I wouldn't tell just anyone."

"Of course not.  Thank you.  But I'll have to give your mother her injection, and then I'm off.  I have other patients to see."

Nervous and frightened, Ann did her business with the woman quickly, and got out.  The son was obviously delusional; she reported the incident, and a mobile crisis team sent a psychiatrist to interview the son, who refused to have anything to do with him and retreated back into his room.  When Ann went again to see the mother, the son remained in his room with the door tight shut; she never saw him again.  After that, Ann was reassigned to another area; her visits to the six-flight walk-up were over.  She heard that the woman had been hospitalized for further treatment, but what finally became of her, her son, and their dog she never knew.  This happened only too often in her work, but Ann, who was young and new to the game, wanted to help others, to heal them, no matter who they were or how they lived.  She knew already that her work would be full of surprises, and rarely the kind you enjoy.  But she stuck to it.

This is only one of many stories -- weird, sad, unsettling stories -- that my partner Bob and I have heard from the doctor, nurses, and therapists who have come to us.  When Bob returned from the hospital, he had a long list of vehement complaints: noisy talk from the hospital corridors, lights coming on in his room at five a.m., food he couldn't abide, an assertive woman therapist whom he referred to as the Gestapo.  And his bedsore wound, which was at a #2 stage when he went in, was at a #4 stage -- much larger -- when he came back.  We didn't need to be told that home care, if you can arrange it, is preferable by far.  So from then on our apartment -- only a four-flight walk-up -- has welcomed a doctor who actually prefers to make house calls, a series of Visiting Nurses, home care aides to see to Bob when I'm out or otherwise preoccupied, and for a limited time only, assorted therapists.

And what we haven't learned!  How a semi-electric hospital bed with an air-filled mattress relieves pressure on a bed wound.  How no two wounds are alike, and each heals at its own pace.  How protein is necessary for healing, so that the poor patient, in addition to meat and eggs, is urged to partake copiously of milkshakes and ice cream.  How saline solution cleans a wound, since almost nothing living can survive in it.  How vulnerable a patient can be: Ann has told us how, when she showed a male patient a photo of his wound, which he had never seen, he burst into tears.  How occasional delusions often accompany Parkinson's and other ailments and should not be cause for alarm.  How Medicare won't pay for treatment of incontinence or certain other conditions, but it will definitely pay for treatment of an open wound.  (Three cheers for the open wound!)  And how the wonders of modern technology can speed up healing.

The high-tech component of home care, and the contraptions it imposed on us, I shall tell about in a later post; here I want to focus on the human component.  The doctor, nurses, home care aides, and therapists have all been wonderfully helpful and supportive.  To be in the health care field, I find, requires diligence, patience, caring, and a sense of humor, and our team is amply supplied with them all.  When one sees patients in a hospital, at least the setting is predictable.  But if one sees them at home, one never knows at first what you may encounter.  Our doctor, nurses, and therapists have all have regaled us (if that is the word) with stories of their own adventures, as seen in Ann's account of the Russian lady and her sheet-wrapped son at the start of this post.  Here are some more:

Another nurse, let's call him Jim (all these names are fictional), was seeing a patient in an SRO (single room occupancy hotel) near Times Square.  The patient, being mentally unstable and prone to delusion, was on antipsychotic drugs.  One day Jim got a phone call from him reporting blood dripping down into his room from the ceiling.  Knowing his history, he informed a doctor, who agreed to go to the patient and adjust his medication.  When the doctor got there, he was stunned to see that blood was indeed dripping from the ceiling.  Further investigation revealed that a junkie in the room above had died while injecting heroin, and the syringe had fallen out, causing his blood to gush.

Speaking of SROs, our doctor has told how he was once treating an elderly woman in an SRO on the Lower East Side.  She lived alone in a tiny room, was from Buenos Aires, spoke little English.  What was memorable about her was her homemade clothing: she wore a miniskirt created out of plastic bags, and a bra made of the same.  She too was a bit dilusional.  Finally she refused to let him in, fearing he wanted to collect the rent.  As so often in these cases, he never knew what finally became of her.
An aside on SROs:  There are two to three hundred SROs in New York City, often occupying a large building that once housed a hotel.   These multiple-tenant buildings range in quality from decent
facilities offering low-cost housing for the elderly and ill, to squalid ones sheltering addicts, prostitutes, AIDS victims, and the newly homeless.  It's the squalid ones that the name "SRO" usually evokes, suggesting something akin to the Bowery flophouses of another day, albeit much bigger: tiny ill-furnished rooms rented by the week or the month; halls reeking of marijuana and urine; shared bathrooms and kitchens, the bathrooms caked in dirt and often without hot water; and the prevalence of drugs and violence.  Among the tenants these days might be those newly fallen from the ranks of the middle class, but hoping to wiggle back in.

An afterthought to the preceding aside:  Hey, it just occurred to me that I once lived in an SRO, though that name wasn't applied to it.  Years ago, a refugee from graduate school, I had a small room with a single window facing another building in the Golden Eagle Hotel in North Beach, San Francisco.  It cost all of five dollars a week, was reasonably clean and quiet, mostly occupied by old men on Social Security, with a sprinkling of beatniks and some unclassifiables like myself.  Through the one window came a woman's voice from another building, constantly scolding her young son: "Bad boy!  Bad boy!"  Poor kid.  And sometimes, in the bathroom, I would be covered with soap and about to shower, when the water was cut off.  Have you ever stood naked, covered with fast-drying soap, waiting and waiting and waiting for a shower head to gush?  A unique experience, typical of an SRO.  Well, it finally did.  Gush, I mean.  But so far as I could tell, I was the only tenant making use of the shower.  As for my neighbors, I rarely saw them, but a friendly maid showed me one room full of thriving green plants, and told how several alcoholics kept their doors locked, accumulating a mess that she would one day have to cope with.  Ah, these memories of my distant and adventurous youth!

One morning Ann came to us an hour late and explained what had delayed her.  Going to a client in the West Village, a man in his late fifties suffering from liver failure, she found the door shut and locked, got no answer when she knocked, but heard noises inside that alarmed her.  With no super on hand, and no neighbor with a key, what to do?  She phoned the police, but when they came and saw the situation, they informed her that they don't break down doors, that's the Fire Department's job.  So
New York's Finest summoned the Fire Department, six of whose stalwarts soon arrived in full regalia, equipped with axes and a battering ram.  When they began battering the door, a faint cry was heard from inside: "Help ... Help ..." The door was finally forced, and in the apartment Ann found her patient, who had fallen, lying barely conscious in a pool of blood.  There was blood all over the apartment, marking his path as he crawled from the bedroom to the bathroom to the living room.  Another phone call brought the medics, and soon the patient was being rushed by ambulance to a hospital for emergency transfusions.  Too late; he died.  And his older partner, himself already hospitalized, died the same week.  A tragedy?  Maybe, but maybe not.  Since her patient's name was not on the lease, after the partner's death he might have been evicted and ended up, alone, in an SRO.  Maybe a happy ending after all.

These stories are hard to top, but one told us by another nurse, Carla, probably does just that.  Going with a second nurse to see a woman in her eighties who lived alone in the Village, she found the door open, the apartment dark, and the usual foul smell of a place that hadn't been properly cleaned for months.  The woman kept birds that were uncaged, and as Carla groped her way in through the darkness, they kept zooming past, alarmingly close to her head.  That and the smell put her companion to flight, but Carla pressed ahead, found a light switch, flicked it on.  There, sprawled on the floor, was her patient.  Immediately Carla tried to resuscitate her, but couldn't; the woman was dead.  Nestled between her thighs was a vibrator.  "Maybe she died of happiness," said Carla.

Here now is an incident in a more cheerful vein.  A nurse once came to us who, observing Bob's somewhat muted speech and having heard that singing is effective voice therapy, invited Bob to sing.  Without hesitation he came forth with "Somewhere over the rainbow."  The nurse joined in, then a therapist who happened to be present, and finally I myself: three generations, all of whom knew the words.  A vibrant quartet, and a good time was had by all, though our Haitian aide looked on with a slightly baffled look. 

The stories of the nurses -- told briefly, almost as asides, as they perform their duties -- are sometimes hilarious, often weird, usually sad.  All around us in this vast city, tucked away in dingy apartments and tiny ill-lit rooms, are elderly people without friends, without means, without hope.  Maybe they'll let a nurse in, maybe not.  Often, whether out of budget concerns or habit or pride, they insist they can make it on their own, won't hire a home care aide, fall, recover with the help of a therapist, fall again, and still refuse to hire an aide.  We encounter them at the tail end of their lives, have no idea what they were like in their heyday, perhaps surrounded by friends and family, perhaps pursuing a meaningful career, perhaps happy and fulfilled.  Who of us know how we will end?  Which brings to mind those much-quoted words of John Donne:  "Send not to know for whom the bell tolls; it tolls for thee."

Thought for the day:  Healing occurs where there is silence.

                                               © 2012  Clifford Browder