Life for a Patient Receiving Home Health Care 
An Excerpt from the work "In-Valid."

In-valid

She heard the awful jangle, knowing she had less than a minute left. She managed to ignore the other closer jangle earlier, hitting the alarm that rang hours ago. The newest jangle of the doorbell would be harder to ignore. 

“Joyce!” the home health aide called out as she rapped loudly on the bedroom door. 

'Go away,' Joyce wanted to scream. Instead, “yes” made its way from her dried mouth, parched from side effects of narcotics and from mouth-breathing since her sinuses were always stuffed from infections. ‘Go away, go away, go away,’ the words screamed in Joyce's mind as Becky walked into the room.  But, Joyce cannot say "Go Away!" -  she needs the Aide's help. 

“How are you?” Becky inquired, just like everyday of the past thousand afternoons. 

Joyce only managed a groan, wrestling with the covers as she tried to get repositioned in bed. Becky helped move Joyce's legs back onto the pillow where they didn't hurt as much, and helped to situate the blankets. Joyce considered telling the Aide to just get her lunch and go home, but Joyce knew she would need more help through the afternoon. And, Becky had already started her routine: pouring ice water into the glass at the bedside, dumping Joyce’s half-filled ashtray, picking up trash that hadn’t made it into the wastebasket. In minutes Becky was gone, taking last night's empty dish to the kitchen. 

More unintentional groans came as Joyce reached for her first cigarette of the day. As she lit one, Joyce’s hand shook, just as her legs shook now, everyday.  

And “the thoughts” were already underway. ‘What am I doing here? Will this never end? How do other people feel when they wake up?’ A quick image came of jumping out of bed at 6 am to get ready for a new day... but that was 20 years ago. ‘Yeah, right, I remember that,’ Joyce thought, her resentment clearly felt but unheard. She wondered if she could live until Christmas, or even if she wanted to try. Life was never supposed to be so painful that one would rather sleep than be awake. 

Becky’s return into the room forced Joyce to break away from the negative thoughts. 

“I have to get up,” Joyce’s euphemism for having to go to the bathroom, which in this case was just a potty chair at the bottom of the bed, the only privacy coming from a stack of boxes on one side of the potty. As Joyce clung with one hand on the walker, Becky helpfully lifted Joyce’s gown from the back while Joyce had already begun struggling with her underwear with her free hand. ‘The view of my rear must be grand,’ Joyce thought bitterly, sadly, as she pivoted once on her ‘good’ leg and half-fell onto the seat of the chair. The lid clanked against the metal as she adjusted her weight on the seat. ‘Back to two hundred pounds again! I’d been down to 150 just a few months ago.’ A few months can change everything. Life can be altered in a single day, a single hour, a single moment. 

“Can you help me up?” 

“You ready.” 

“Yeah." Joyce was already moving forward to grab one rail of the walker while Becky grasped the other rail. 

“One, two, three, up,” Becky intoned and like clockwork Joyce stood while Becky assisted, her arm under Joyce’s arm. This time the legs held, instead of trembling and shaking as they do intermittently but regularly enough to make her unsteady. Joyce usually “walked” from the potty chair to the upper part of the bed by putting one knee and both hands on the mattress, using her hands and arms like a chimpanzee. This not only relieved the back pain and spasms to some small degree, but made Joyce feel less like she would fall.  And, if she did, she’d likely fall forward, with head and face going into the mattress if her back seized into spasms. Becky remained nearby, moving the walker so it wasn’t in the way. Joyce pivoted, turned, twisting sideways and flopping to the mattress in one motion, following her usual pattern for returning to bed. Panting, she tried to calm her breathing, along with the pain, and the nausea from the pain, before moving again. 

“Ok.” Joyce put her right foot – the one that usually shook the worst – on the mattress while Becky held the foot flat against the bed to give stability for Joyce to push against.

Joyce’s weight was starting to make any movement harder.  But, when bedridden six years, it’s hard to exercise and prevent weight gain. ‘This is too hard,’ she thought for the millionth time. But there’s not much choice when one has to pee.  Every time Joyce had to get up and then return to bed, she had these same thoughts as she used one foot to help herself lift her bottom off the bed and move up to the center of the mattress. 

Becky and Joyce worked together quickly to get both jerking legs placed onto the thick stack of pillows at the bottom of the bed. Today her legs jerked less, unlike other days. Becky often joked about getting ‘combat pay’ when a jerking limb caught her in the belly, chest, or shoulder.  While it was something both women had come to live with, Joyce still couldn’t accept this impairment that robbed her of living normally.  Normal was no longer part of Joyce’s thinking.  Life can be altered in a single day, a single hour, a single moment. 

For the most part, Joyce had made adjustments to living in bed.  But, it isn’t an easy fate to accept.  Joyce found her thoughts often drifting to memories of living “normally” as she had just a short 6 years ago. Hope never quite dies, although Joyce thought less now about recovering from this situation and more about what adaptations she could use. This is what caught her thoughts again as Becky re-arranged the pillows under Joyce’s legs, trying patiently to place each one correctly so it would help lessen Joyce’s pain. Becky knew how much Joyce hurt and tried her very best to position pillows and blankets, yet knowing that pain often refuses to cooperate with the best intentions of aide, patient, or the most skillful doctor. 

Joyce understood how frustrating it was for Becky and other helpers who tried their best to get something arranged ‘just right,’ but how so very often nothing was ever ‘right.’ Today was a day like that. 

“Just leave it,” Joyce said, after the sixth or seventh time of Becky adjusting the pillows. Joyce knew her legs were just going to hurt, no matter how much Becky tried, and Joyce often sensed Becky’s irritation and frustration that ‘nothing ever helped.’ And, that made Joyce feel horrible. ‘What a burden I am,’ she thought. It would be just the first of many times today that statement would pop into her mind. 

“You sure?” Becky asked. “I could try again if you want me to.” 

“No, it’s okay,” Joyce replied, trying desperately to soften the tone of her voice. She wasn’t angry or frustrated with Becky, but with herself, with her body, angry that pain ruled her existence, and knowing that people often mistook her short, abrupt tone as meaning that Joyce was angry at them when she wasn’t at all.  Joyce hated what pain had made her become, hated how it stole any softness or sweetness she tried to infuse in her voice and twisted it to make any words seem curt and almost mean.  Most days, Becky seemed understanding.  But, Joyce dreaded the day when that understanding would no longer be granted.  Understanding is easily depleted and can easily become exhausted. 

Joyce has tried to explain, repeatedly, what it is like to feel so trapped, so powerless, in the face of unyielding physical problems.  Frustration, fear, despair, depression, helplessness, powerlessness all vie in almost-daily competition with hopefulness, wishes, dreams, perseverance, and productivity. Sometimes Joyce feels like a drill sergeant -- to herself -- pulling herself again and again from the negative feelings back to the positive ones, to once more try to continue living. Surviving. Most often, it feels no one understands.


After Becky left her company, Joyce had to get new workers.  Six o'clock came and went that evening.   Once again the evening Home Health Aide was not here on time.  Joyce could never trust if this Aide would come or not, unlike Becky who had always been prompt for her day shift.

"Hi, Mrs. Jackison, this is Joyce Beeling." 

"Hello," she replies, with a questioning tone. 

"Hi. Hmmm... Mary hasn't shown up yet." 

"She hasn't?" 

"No, she hasn't." 

"Well, I'll call her, see if I can find out where she is," Mrs. Jackison sighed. 

The next call from Joyce was to Jane's cell phone. "Jane, the aide hasn't come."
Jane make an irritable sigh. "All right!  I'll come over."  Jane's tone of voice clearly let it be known that she resented having to get into her car to drive the 20 minutes to Joyce's house.  It seemed like it was Joyce's "fault" - just because she needed to eat.

"Ok, thanks." 

Mrs. Jackison never did call back.  Joyce didn't really expect her to, though, based on past experiences with so many incompetent aides.  Some Aides started work, stayed a few days, but then one day never returned after their State-mandated 2-hour break.  Their story to the office was "a family emergency."  Those ones barely lasted a few weeks in the company. Other new hires showed up at Joyce's for one shift, and never returned, and the company never saw or heard from them again.  Some aides, although scheduled at Joyce's from noon to four in the afternoon and from six to eight in the evening, would choose on their own to cancel shifts, or just not show up. 

These were the workers that Joyce relied on for meals. She couldn't walk and stand long enough to get meals herself, even to make a microwave pre-packaged meal. These were the workers Joyce relied on to feed her, but many just never came. Sometimes Joyce would give them the few dollars needed to stop at a local fast food restaurant, and the person had promised to bring her a sandwich and a drink - but not only they didn't show up, but they quit the company without notice, and kept Joyce's money. 

Joyce had no family living nearby, so she had to rely on friends to come when Aides never showed up.  For days or weeks sometimes, Joyce had to call her friend, Jane.  While Jane bitched and sighed and huffed and puffed, most times she came through, but often it was several hours after Joyce had called.  By that time, it was three to five hours after Joyce was to have eaten, and three to four hours after she'd already taken her medicines. By the time a meal was made and brought to her, her stomach was torn up by the assorted prescription meds that needed to be taken on a schedule, but also with food to prevent bad side effects. And, there were times Jane was so frustrated and angry about having to change her plans that she would threaten to "not come back!" 

Always the Home Care Agency would claim ignorance about why their worker had not returned or had not called off.  The company always promised to find new help as soon as they could.  Everyday was limbo.  Every new worker caused Joyce to panic: Would the person like her; would they stay; would they return? Would Jane refuse to help the next time?

Joyce learned quickly to not complain 'too' loudly or 'too' strongly to the company about the Aides - whether it was about no-shows, or how some Aides arrived but wanted to sit the whole shift.  The one time Joyce tried to stand up for her rights as a patient, the company sent a letter saying they were giving her a 30-day termination notice. Their reason? "We cannot meet your needs properly."  The termination would have been fine, except that Welfare only contracted with two agencies out of the 80-some listed in the yellow pages as offering coverage in Joyce's area.  No, complaining was futile.  Complaining only made the Agency's Director of Nursing upset, and if the Director became upset she might try again to terminate services.  No, complaining took the risk of losing the little help Joyce had. 

Yet, sometimes the "help" was far, far less than desired. Home health aides often went to the other end of the house for almost an hour, claiming they were "doing the dishes." But, it only took a couple minutes to wash the 3 dishes and 2 pieces of silverware Joyce used each day.  Often, Aides were caught gabbing on their cell phone in another room, or reading a romance novel, all the while Joyce was waiting for the person to come back to her room to help her. One time, Joyce found the aide sitting at the table, doodling on paper. "Fuck, fuck, fuck," the aide had written across the paper repeatedly, in between graphic doodles. 

Other aides were more vocal about their frustrations and chose to argue about every single thing they were asked to do, including getting food or cold water from the fridge.  Some aides were demeaning; others used humiliation as their usual communication; others could be quite abusive. But, other than talking to the aide or reporting the person to their company, there was no other recourse for the patient.

After numerous calls to social service agencies, Joyce learned there is no patient advocate for persons aged 21 to 64 who receive home care (those over 65 years old have an advocate because their home care services are delivered by a different program with the State).  Joyce also found that there is no national advocacy group for consumers of home care services. A patient can complain to Medicare if the company is a "Medicare approved agency," but nothing will be done unless a company is breaking federal rules -- even if the complaints are legitimate and are "founded." Things like aides not being on-time or not showing up are company infractions, but do not rise to the level of breaking a federal mandate. Even abusive communication wasn't treated as important enough for anyone to take action against an Aide.  For those things, there was no resolution unless the company tightened their policies with their own employees.  But... companies are just as desperate to keep workers, as are the patients who need the workers. So, far too often, patients were just stuck with "who ever they can get."


For a patient to be stuck with "who ever they can get" is often a frustrating and demeaning experience. In order just to eat and have water, a patient must accept poor attitudes, from incompetent workers who cannot read or follow verbal directions, and sometimes from Aides who are using drugs or are thieves.  And, if there is not outright verbal and physical abuse, then there are the incidents of demeaning, humiliating or angry communication from the workers. 

Some days, Joyce dreads hearing the awful jangle of the doorbell -- as much as she dreads not hearing it.  The question of will the worker show up today translates to "will I at least get food and water today?"  The feeling of powerlessness and helplessness is reinforced when workers don't regard the patient's needs whatsoever. 

And, ongoing is the feeling that one is simply a "burden" -- and that no one wants to be saddled taking care of a "burden."  Feeling like one is a burden just intensifies the patient's sense of powerlessness and feeling as though they are nothing but an object and totally -- 

-- in-valid. *

* This is what a "day in the life" is like for a person still living at home and who must rely on low-paid and mostly untrained home care workers.  Under-paid, with no benefits, no sick days or vacation time offered, the workers who get these jobs are often uneducated and disinterested, resentful of having to work, who have little to no work ethics, and simply disappear from their employer whenever they choose.  Patients who need their help are simply at the mercy of these workers.

Rachel Giarrizzo wrote a story about what it is like to live in a nursing home.  There are a lot of similarities to home care in Ms. Giarrizzo's story,  A Patient's Perspective (of nursing home care).

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