The Wrap on Nursing Homes, Care for the Elderly and Respect

I have not posted for a while because I’ve been in the middle of my own transition into the “eldercare” world and have been occupied with the many detailed tasks it involves. In a months’ time, my partner and I will move to an independent living community in Maine.  It is the first step away from our lives as single-family home owners in a town near Boston, and toward life in a retirement community.  We’re making this move in our mid 60’s and early 70’s because we want to do so while we still have the physical strength and mental fortitude to carry it off.  Our observations of other aging couples have taught us that we don’t want to leave this move too late and therefore, by default, shift the burden of making and carrying out such decisions to our loved ones.

Ideally, we would be moving to a CCRC. Continuing care retirement communities (CCRCs) have accommodations for independent living, assisted living, and nursing home care, offering residents a “continuum of care.”  A CCRC would ensure that the transition from one level of care to the next, as necessary, would be relatively smooth.  However, our financial situation does not make this option possible.  So, we will take this first step, and hope for the best (that we will have acceptable and feasible choices open to us) as we age and our health and strength decline.

I want to wrap up my “exposé” on nursing homes, eldercare and respect by touching briefly on four topics:

  • Rehabilitation, Respite and Long-term Care
  • Advocacy
  • Home Care and Hospice
  • The Top One Percent

Respite, Rehabilitation and Long-term Care

Not everyone is aware that most nursing homes offer at least three different kinds of care:

  • Respite – a brief stay of a week to several weeks offered to a patient so that his or her primary caregiver, usually a family member, can have a respite from caregiving responsibilities. The patient plans to return home though there is always the possibility that a respite stay may turn into long-term care.  For reference see: http://www.aplaceformom.com/respite-care
  • Rehabilitation – a transitional stay in a nursing home for patients who have been discharged from a hospital and need physical and/or occupational therapy before they are able to return home. The duration is usually relatively short.
  • Long-term care – a “permanent” stay, when the patient is not expected to recover enough to return home, and will need ongoing nursing care.

Different durations of nursing home stays are funded differently.  Often respite care is privately funded, rehabilitation is funded by Medicare, and long-term care, especially for those without private resources, is funded through Medicaid.

In most nursing homes, different types of patients share the same rooms, floors and common spaces.  This can present problems, particularly for those receiving respite or rehabilitation services.  Some fear that if they do not maintain their current daily living skill level or achieve the goals set for rehabilitation, they may end up becoming long-term care patients.  Because they are distributed throughout the nursing homes’ population, they do not interact regularly with others who share their skill level and a sort of lethargy and hopelessness may set in.  For long-term care residents, who see respite and rehab patients come and go frequently, continuity and stability are sacrificed, and confusion can contribute to mental decline. I can’t imagine a solution for these problems without an enormous infusion of funding, and that is inconceivable in the present political and social climate.

Advocacy

It goes without saying that a nursing home patient who has an active, attentive, external advocate will receive a much better level of service than one who doesn’t.  If a friend or family member visits on a frequent, though preferably unpredictable, basis, and interacts with the nursing staff concerning the quality of care the patient is receiving, the quality will improve.  It is essential that the advocate attend care planning meetings on a regular basis, and respectfully speak up about concerns

This is not an easy role to play.  Firstly, most families would prefer to care for their elderly relatives at home and they may feel guilty about being unable to do so.  Often all adults in the household work full-time and can’t afford to quit jobs and stay at home with a parent who requires care or supervision. Sometimes the layout of the home makes it impossible for a disabled person to live there without expensive accommodations. Once the decision is made to place a parent in a nursing home, it is often difficult to find one near work or home.  Transportation may be a barrier.  The “out-of-sight-out-of-mind” syndrome also comes into play.  As time passes, it is easy slip into a less frequent visit pattern. Sometimes it is difficult to visit mom and see her in soiled clothing, staring vacantly into space, losing weight, and perhaps angry with her children for having placed her in a nursing home.

It is very important to rise above all these obstacles and emotions and be disciplined about visiting and advocating.  It is the only way your loved one will receive acceptable care.  I speak from experience.  I was a guardian for a developmentally disabled, mentally ill woman who lived in a variety of nursing homes for the last 10 years of her life.  Also, my mother in law spent her final two years in nursing home care.  I drove hundreds of miles and spent countless hours in visits, meetings and phone conversations.  I moved my disabled friend twice because neglect threatened her life.  I played the advocate role, as arduous and uncomfortable as it was at times, because I believed that they both deserved care that reflected respect for their dignity as human beings.

Homecare and Hospice

Homecare – See http://nextstepincare.org/uploads/File/Guides/Home_Care/Guide/Home_Care.pdf

Hospice – “Formally speaking, hospice care is that which can be provided to patients with a life expectancy of six months or less. Rather than seeking a cure, hospice care aims to make their remaining time…as comfortable and as meaningful as possible. This may mean pain relief and nursing care, but also includes emotional support and help with everyday tasks…the needs of family, friends, and caregivers are also taken into account.” Center for Hospice Care, Southeast Connecticut

My experience with homecare and hospice is limited.  My friend Dorothy signed up for both shortly before her death.  The intake process was time-consuming and complicated, the scheduling and set up for care slow, and from Dorothy’s end, confusing and disorganized. The in-home caregivers were invariably kind and well-meaning, but they did not always have a nuanced understanding of the problems and needs of the elderly and dying, and they did not relieve the burden on Dorothy’s family very much.  Coordinators responsible for handling applications and adhering to government funding regulations juggle competing priorities and needs, accounting for delays that can be very frustrating for family caregivers.  I believe that the quality of both homecare and hospice varies dramatically from one region or location to another, regardless of income level.  My sister, who enrolled with homecare and hospice in Nova Scotia when my father was dying, experienced some of the same problems as Dorothy’s family in Massachusetts.  In our family’s case, however, the counseling and emotional support available to us during my father’s death was superb.

Despite these caveats homecare is, for many, a step forward in eldercare, enabling them to live somewhat independently in familiar surroundings, to have a measure of control over their lives, and, thus, to preserve their dignity. For those who wish to die at home, hospice is a welcome alternative to a hospital.

The Top One Percent

On a cloudy day in early April I went to visit a friend in a CCRC in a wealthy suburb of Boston.  My friend was in the “skilled nursing facility” on the premises – the name commonly used for newer, “upscale” nursing homes affiliated with CCRCs.  While I waited for his daughter to join us for the visit I decided to take a cursory tour of the other eldercare options on the premises.  Besides independent homes, the community also included several large independent living apartment complexes with a “clubhouse” for central services like meals and programs, as well as an assisted living complex.  I merely stepped into the lobbies of the apartment clubhouse and the assisted living building.  It was like stepping into another world.  A resort atmosphere prevailed in both.  Dining rooms were “high-end” restaurants with cafés or bars nearby. The fixtures and furniture were luxurious. The receptionist was professional and welcoming.  The residents all looked healthy, fit, active and happy – from a cursory glance.

The skilled nursing facility where my friend was undergoing rehabilitation after a hospital stay was also extremely well appointed.  Granted, the facility had just opened, so everything was new and fresh.  The staff-to-patient ratio appeared high.  The staff we encountered were respectful and professional.  My friend, though obviously ill and tired, was alert, dressed cleanly and appropriately in his own clothes, and oriented to his surroundings.  His private room was spacious and attractively decorated.  The art was of surprisingly good quality.  We went from his room into a quiet and well-furnished lobby where we had a conversation that I will remember forever, as my friend died a few months later.

I came away from that visit – that cursory glance – wishing that every nursing home were just like this one.  I do not know how my friend paid for his stay at the skilled nursing facility.  It’s quite possible it was covered by Medicare, but though a gentle, kind, and humble man, my friend was wealthy.  His family had the resources, influence and “know-how” to get the very best care for him.  Would that you and I – indeed everyone – could get the same kind of care for those we love, and for ourselves.

 

 

Nursing Homes:  The Proposed Budget’s Medicaid Cuts

On Tuesday morning, I awoke to an email announcement from the Democratic Senatorial Campaign Committee that the budget President Trump proposes calls for $800 billion in Medicaid cuts. In other news reporting I’ve read that the actual Medicaid cuts will total more than $1.4 trillion.  Both numbers are, for me, incalculably large.  I can only vaguely imagine what such cuts will mean for the biggest category of recipients of Medicaid funding – the nursing homes I have been writing about for several months.

Many of us will find it difficult to see how these proposed Medicaid cuts would affect our lives.  We are not among the wealthiest One Percent, nor are we living below the so-called poverty level.  We are not yet very elderly, or poor or disabled. In the moment, we feel somewhat secure.  We have our modest retirement savings, our mortgage-free home, and (if we have been really careful) a small amount of long-term care insurance.  Our health insurance benefits are covered by Medicare and a supplement program that we purchase at what we consider a reasonable price through our former employer, or perhaps through AARP (American Association of Retired Persons).  Though we are part of the dwindling middle class, we should be safe, at least for the time being.  Cuts in Medicaid won’t affect us, right?

Consider this true story – one that is close to home for me as it describes what happened to my mother and father-in-law, Ruth and Roger, at the end of their lives.

Roger was an aircraft engineer for most of his career.  He worked for well-known aircraft companies and enjoyed a middle class income. He and Ruth, a homemaker, had two children, Christopher and Susan.  When Roger retired they moved to a lovely Maine town, purchased a small “Cape” house and remodeled it themselves, surrounding it with a beautiful yard where Ruth cultivated her gardening skills.  They had a quiet life, participating in community gatherings, volunteer activities and the church. Roger continued to work part time well into his eighties repairing screens at a nearby hardware store.  It gave them a little extra income to supplement his pension and their Social Security.  They did not live extravagantly, seldom traveled, economized on everything, and saved their money. They had, perhaps, 20 years of comfortable retirement before dementia set in for Ruth and Roger’s health began to decline rapidly.

When their daughter and son stepped in to make decisions for their healthcare, Roger was in a rehab facility after a long hospitalization and Ruth was placed in respite care since it was unsafe for her to continue living alone in their home.  Christopher and his wife were already caring for his wife’s mother in their own home and Susan was working full time and owned a house with several flights of stairs.  Neither had the ability to bring Ruth and Roger home to live with them.  Roger died soon after Ruth was permanently placed in “residential care” at a privately funded eldercare facility.  Chris and Susan sold the parents’ home, netting about $250,000 in profits.  These resources, plus Ruth’s and Roger’s modest savings, were dedicated to covering the cost of Ruth’s care.  The facility offered good nursing; the atmosphere was compassionate and respectful; and Ruth ultimately settled in and felt comfortable and at home.

Within little more than two years the resources from the sale of Ruth’s and Roger’s home as well as their savings were exhausted.  The facility notified Chris and Susan that Ruth must be moved elsewhere immediately.  Susan and I began a long and tortuous search for a nursing home placement near our home in Massachusetts, while Chris undertook the gargantuan feat of completing the extensive paperwork to document her qualification for Medicaid funding.  Ruth was 90 years old and destitute.  She had no income other than her meager Social Security check.

It took many months to find a nursing home that would admit her.  Barriers to admission included: her lack of private funding; her residence outside Massachusetts; the unusual circumstance of transferring her from a nursing facility rather than a hospital; and finally, the possibility that she was too high functioning to qualify for nursing home care.  I remember arguing with many admissions directors that while Ruth may be able to complete most ADL (Activities of Daily Living) tasks in her “residential” placement, the moment this victim of dementia moved from a familiar setting to a new one these skills would deteriorate rapidly and she would immediately qualify for nursing care.  Finally, an admissions officer offered us an opening.  Ruth’s Medicaid funding was approved, and we moved her to a nursing facility near us where we could visit her several times a week, advocate for her care and offer her family support, though, by then, she hardly knew who we were.  My predictions had been accurate, the move from one facility to another in her delicate mental state caused her great emotional distress and her ADL skills went downhill drastically.

I don’t know what we would have done had it not been for Medicaid, and for the nursing home that was willing to accept her as a Medicaid patient without any private funds. Ruth lived another two years, steadily declining, receiving the kind of mediocre care I have described in previous articles, despite our active advocacy and intervention.

This story had a far better outcome than we can expect in the future for similar “middle class” families if the President’s budget cuts to Medicaid are adopted and the Affordable Care Act is dismantled. Will there be nursing homes to care for our parents or for us at the end of our lives?  With their funding drastically cut, how many will go out of business, leaving only privately funded facilities for the wealthiest?  Will we regard the social safety net of Medicaid with such indifference, or even scorn, when it is no longer there to catch us as we fall from our precarious middle class tight rope?

Nursing Homes: Clothing and Incontinence

Some problems seem absolutely intractable.  Two such closely related problems in nursing homes are incontinence and care of patient clothing.

Appearance is, for many of us, closely associated with our sense of personal dignity.  Some control over how we look and what we wear seems vital to maintaining a sense of identity, of personhood, particularly in American culture.  Situations in which people are forced to wear clothing they have not chosen (e.g., prisons, hospitals) make them feel objectified and de-humanized.

My mother-in-law was a fastidious person.  Over the years, as she aged, she cultivated a tailored, simple, neat and soft style in her dress, both at home and in public.  She had few clothes, but they were of moderately good quality, always clean and well pressed.  Her attire expressed her identity and her sense of self-worth.  Before she died at the age of 92 she spent two years in a nursing home.  I believe that part of her rapid deterioration there was due to her inability to take pride in or have control over her appearance.

While patients are encouraged to bring and wear their personal clothing (each piece labeled with their name) to the nursing facility, this attempt to make them feel more “at home” breaks down very quickly.  Nursing home laundries are notorious for losing or destroying clothing, partly due to the pervasive problem of patient incontinence.

For various reasons, many nursing home patients are incontinent.  Those who do not suffer from lack of control physically, may do so psychologically.  Some have lost sensation and are unable to determine when they need to eliminate. Many are completely dependent upon nursing assistants (NAs) to help them with toileting. Since the NAs are burdened with heavy patient care loads, the patient may have to wait for very long periods of time between trips to the bathroom.  After numerous frustrating attempts to maintain continence, many simply give up, relinquish this relic of their dignity and succumb to incontinence.  At the end of the day, or perhaps several times during the day, patients’ soiled clothing is removed and tossed in a laundry hamper, where it may sit for hours or even days before being collected for laundering.  No matter how hot the water, how strong the detergent, the odor never really washes out.  Inevitably, clothing breaks down quickly and the patient’s wardrobe becomes gradually smaller. [An aside: some families, like mine, frustrated with inadequate clothing care in the nursing home, resolve to collect their loved one’s soiled clothing several times a week and launder it at home.  Smaller, less powerful washers and dryers are even less effective in removing offending odors and many families give up after just a few attempts.]

Dwindling patient wardrobes are also due to lack of care in returning clothing to the proper rooms.  When I visited my mother-in-law, she was often dressed in ill-fitting clothing that was not her own.  A peek into her closet would show that perhaps half of the items there had someone else’s name on them, and many of her favorite pieces had disappeared permanently.  The clothing was poorly hung or stuffed, unfolded, in drawers.  Though I have been able to understand the nature of many operational problems in nursing homes, I have not been able to figure out why clearly labeled clothing does not make it into the correct patient’s closet.  I speculate that lack of care or concern, low job performance standards, and a failure to understand the importance of appearance for one’s physical and psychological well-being might be some causes of the problem.  There is so much work to do in a nursing home. Caring for the appearance of a patient may be quite low on the priority scale.

Is the problem really intractable?  With a different mindset – one of honoring dignity and expressing respect – would it be possible to recognize the importance of answering call bells quickly, taking patients promptly to the bathroom, soaking soiled laundry immediately, hanging clean clothing neatly on appropriate hangers, folding items carefully, reading name tags and returning clothes to their owners. Would it be possible, with such a mindset,  to dress patients in their own clothing, comb their hair, and wheel them out into their world as their best and most respectable selves?

 

 

[I came across the following post on a blog about the meaning of words.  It provides a relevant perspective on the meanings of dignity and respect in care-giving relationships with the elderly.]

Dignity is honorableness, a quality of the person being elevated.  Respect is a viewpoint, a quality of the person doing the elevating.

It is helpful to look at the etymology of these words, because their meanings reflect their history. Dignity it comes from the Latin noun dignus, “worth”, and is related to other valuing words such as dignitarydaintydeigndisdain, and indignation.³ Respect comes from the Latin verb respicere, literally “look back at”, and is related to other viewing words such as spectatorspectacles, and inspect.

I agree that there is considerable overlap between the two terms, dignity and respect, yet they do often be seem to be used together. One context that is fairly common and topical in the UK at the moment is in the treatment of patients – and particularly elderly patients – in hospital.

In that particular context, I tend to think of dignity as referring to the manner in which they are ‘physically’ treated or handled, e.g. handling them in a private cubicle with curtains properly drawn, treating their physical body with respect and privacy as far as possible even when having to help them dress/undress or having to help with private and/or intimate functions.

On the other side, I think of respect as ‘dignity’ for their ‘inner person’, for their wishes and desires: listening to what they want and to their preferences, and responding to them, even if you cannot meet their wishes or they are inappropriate for medical reasons – not just doing what you think is necessary and ignoring what they are saying. Give them at least a moment of time, rather than ignore them completely.

–Trevor D

http://english.stackexchange.com/users/43980/trevord

 

 

Dignity and Respect

 

I want to take a short break from what at least one of my readers has called “depressing” reflections on nursing home conditions to dwell briefly on the suggestion that Harry Lewis made in response to my introduction many weeks ago:

Sometime you can parse the relation of respect to dignity. There is actually rather a lot of talk about DISrespect these days, so much so that the word has been turned into a verb. This thought is rather fuzzy in my mind, but it seems that people would be more likely to be treated with respect if they acted with dignity, and dignity is today considered inauthentic, like using the dessert spoon while eating the entree.

After some reading and reflection, I have come to consider dignity as an inherent quality of all human beings, what I will call “inherent dignity.”  Respect, on the other hand, is a sentiment demonstrated through certain behaviors offered in response to perceived inherent dignity.  Respect may also be earned by “worthy”, or as Harry would perhaps say, “dignified” behavior.

The notion of inherent dignity is, I think at root, a religious one.  For example, Daniel Groody writes in “Globalization, Spirituality and Justice”, p.109:

Catholic social teaching believes that human beings, created in the image and likeness of God (Genesis 1:26-27), have by their very existence an inherent value, worth, and distinction. This means that God is present in every person, regardless of his or her race, nation, sex, origin, orientation, culture, or economic standing. Catholic Social Teaching asserts that all human beings must see within every person both a reflection of God and a mirror of themselves, and must honour  and respect this dignity as a divine gift.

Apart from a creationist or religious belief, the notion that, as human beings, we share the same “essence” encourages us to believe in the worth and value of others as we believe in our own worth and value.

There is little about an elderly man or woman in a nursing home that would elicit a natural response of respect. Most are physically ravaged by age and illness, possibly scarred or handicapped, stooped, and weak; many are angry or resentful about their condition, tired, lonely, and hungry. Under these circumstances, some are incapable of acting with dignity. Whether we recognize these individuals as children of God or simply as fellow human beings, determines whether we acknowledge their inherent dignity and respond with respect.

As a society, I think we have come to value “productivity” in all its forms as the highest possible good, the most valued human quality.  Those who are not “productive” for whatever reason—age, mental or physical disability, social or financial disadvantage—are considered of less value and are regarded as less deserving of respect. This, I believe, is why we allow the oldest members of our communities to live in conditions that, when we come face to face with them, appall us and make us afraid of our own end-of-life circumstances.

If you were to ask an elderly person, faced with entering a nursing home what he or she fears most, I believe (and research has shown) that the answer would amount to the inability to make one’s own decisions or the loss of control – control of one’s body, of one’s surroundings, of one’s schedule.  It is extremely difficult to maintain a sense of personal dignity, and therefore an expectation that one deserves respect under these conditions.  Some elders do so.  They are the ones we consider dignified; the ones we admire and hope to emulate.  The ones we may respect.  But the others?

The way we treat the elderly, indeed, the way we treat all those who are more vulnerable than we imagine ourselves to be, says a great deal about who we are as a society.

For this reason, I am writing about the “depressing” conditions in nursing homes.

Nursing Homes: Food and Feeding

 

Visit a loved one in a nursing home at noontime on any given weekday and again during the weekend and you will see two completely different scenes.

On a Wednesday, for instance, patients who are mobile, with walkers or in wheelchairs, are gathered in a large dining room, which is bustling with activity.  They are grouped around tables of various sizes, usually according to their ability to interact socially.  Aides move attentively from table to table encouraging patients to eat, assisting some who need specific prompts and, in some cases, feeding those who are unable to feed themselves.  Various levels of occupational therapy are apparent.  The atmosphere is as bright, cheerful and upbeat as the staffing level and décor will allow.

By contrast, on Sunday patients are in wheelchairs in the hallways, in small “activity” rooms on their floors, or in their own rooms.  Very few staff members are in sight.  A TV, unwatched by anyone, is droning in the background.  The patients can be divided, with a few exceptions, into one of two categories—those who can feed themselves and those who cannot.

Those who can open their meal offerings independently, lift the thermal covers from their plates and teacups, insert straws in their beverages, tear open packets of sugar or butter, and easily lift utensils to their mouths vigorously consume their meals.  These are, invariably, the most mentally alert and least physically handicapped patients.

Scattered among them are others sitting quietly, sometimes slumped in their chairs, in front of unopened trays and untouched meals.  They seem to be uninterested in the food, not hungry, not even aware that it is mealtime.  Some of these are the very same patients, who, with prompts or assistance during the week, have eaten reasonably substantial meals.  Without that kind of attention, they are simply unable to eat on their own.  The pared back weekend staff try to assist as best they can as they move from patient to patient, offering a few spoonfuls here or a little coaxing there, but there isn’t time for everyone to be fed a full meal.  Inevitably, when the kitchen aide responsible for collecting trays at the end of lunchtime makes his rounds, many untouched or barely touched trays return to the kitchen and the food goes into the trash.  My friend Dorothy told me that, during her rehab stay in one nursing home, it broke her heart to see some of her fellow patients sit limply before their trays unable to eat their meals.

Nursing homes employ nutritionists to ensure that patients receive a balanced, healthy diet – in theory.  But the practicality of preparing hundreds of standardized meals three times a day for people with multiple dietary needs makes it extremely difficult to serve fresh, attractive, appetizing food.  Nursing home food, like much hospital food, is usually bland or tasteless and unattractive.  Vegetables are invariably overcooked and fresh fruit is scarce.  Bread is of the “Wonder” variety.   Desserts consist mostly of Jell-O, apple sauce, vanilla ice cream or packaged puddings because they are easy to put quickly on trays, can be eaten without teeth and cleaned up quickly.  Meats are often, of necessity, ground.  Especially if the patient is unable to remember the announced menu, it may be impossible to tell what one is eating.  Even a healthy, alert and strong elder would find it difficult to maintain a balanced, nutritious diet in a nursing home.  Dorothy, who at the time of her respite stay was a vegetarian and who was having difficulty swallowing, found it extremely difficult to piece together a meal that would not leave her feeling hungry. And she had her wits about her and was able, with assistance, to fill out the menu request forms.

How can this be good enough for our elderly?  How can this be acceptable when families or the government pay extremely high costs for nursing home care?  Is this an unsolvable financial and organizational problem?  Am I whining about something trivial when larger issues loom in eldercare?  A contributing factor in the rapid physical decline of elders who are admitted to long-term care in nursing homes is, I believe, poor diet and insufficient nourishment.  Some are slowly starving to death.

Nursing Homes: The Caregivers

 

Who works in nursing homes?  Who are the primary caregivers for elderly patients there?

I offer a reminder that my purpose in writing about nursing homes in the context of my theme of respect for the elderly is not to provide research or statistical analysis on those living or working there but to share my observations from the last 25 years in mostly urban New England settings.  I welcome your nuanced perspectives on the stories I tell and the impressions I offer.

Nursing homes employ a multiplicity of people:  administrators, Registered Nurses (RNs) who serve as nursing supervisors, attending or resident physicians, dietitians, cooks, occupational and physical therapists, psychologists and psychiatrists, activity directors, janitorial and laundry staff, buildings and grounds workers, AND those who provide direct care for the patients – Certified Nursing Assistants (CNAs), or Nursing Assistants (NAs), as they are commonly called.  I am unclear of the difference between these two categories except that one is certified by an accredited training program and the other is apparently not.  The combined job description for CNAs and NAs, as outlined on salary.com, states:

Under the supervision of a Registered Nurse, performs various direct patient care activities in a nursing home environment. Assists patients in dressing or undressing, bathing, or eating. Collects non-invasive body fluid specimens or gathers vital signs but does not start or administer intravenous fluids. Aids physicians and nursing staff members with procedures if needed. May serve and collect food trays, provide for between-meal nourishment, and clean, sterilize, store and prepare other supplies. Documents patient interactions as needed. Requires a high school diploma and certification from an accredited nursing assistant program. Familiar with standard concepts, practices, and procedures within a particular field. Relies on limited experience and judgment to plan and accomplish goals. Performs a variety of tasks. Works under general supervision. A certain degree of creativity and latitude is required. Typically reports to a registered nurse or manager.[1]

And who are the CNAs and NAs? In Northeast urban areas, many are immigrants, often from Caribbean or Latin American countries, predominantly women in early middle age. English is their second language.  I am less knowledgeable about nursing homes in rural settings, but I suspect that the direct caregivers are much like those in the facility in my hometown in Nova Scotia where I worked as a teen: local women (very few men) who elected to pursue technical CNA training in order to be able to work near home for various reasons.  And in Nova Scotia today new immigrants, from a diversity of countries, make up a large sector of nursing home caregivers.

Because English is often the second language of nursing home caregivers, language barriers often contribute to the quality of care provided to patients. I have observed NAs and patients who were extremely frustrated with one another due to language barriers.  It’s hard to describe feelings, both physical and emotional, to a caregiver from another culture who does not speak your language well.  It’s hard to hear instructions or expressions of concern from a caregiver when you may be hard of hearing or unable to decipher an accent.

CNAs and NAs are among the lowest paid employees in our country.  Still, after doing a little research, I’ll have to admit that the information I found suggests that they are not as badly paid as I suspected.  The median annual salary for a CNA in the USA (as of March 31, 2017) is $25,840; for an NA (though no certification is required) it is $28,644.  The hourly wage is between $14-15. In the Boston area the median annual salary is $29,134.[2]  Salaries vary widely depending on a number of factors including the location and size of the facility and education and experience of the aide.  Nursing Assistants in Massachusetts make about $3 per hour above the minimum wage.

The CNAs or NAs are the people who matter most to nursing home patients; they are the employees who are directly responsible for the quality of care that the patients receive.  As caregivers, they interact with their patients multiple times a day, and those patients rely on them for the most basic needs: cleanliness and toileting, food, and movement from place to place.

Nursing Assistants are on the front line day in and day out. They have an extremely difficult and physically demanding job, spending long hours standing, walking, bending, lifting, pushing and carrying.  The conditions in which they work are often “unpleasant.” Incontinence is a common condition for nursing home patients, and the odors are off-putting and even nauseating. How many of us have wondered how baristas at Starbucks get the smell of coffee out of their clothes and nostrils?  Need I say more.

And patients can be difficult.  The elderly can be demanding, angry and even physically, verbally and psychologically abusive to their caregivers.  Sometimes this is due to long-standing personality faults and at other times to the onset of dementia. I have seen patients scream at their caregivers, physically resist care or strike out at aides.  For Nursing Assistants to go home with a black eye at the end of shift is not uncommon.

I fully expect that none of this information will be surprising to the reader.  However, some of the effects of these circumstances may not be so obvious. Repetitive, physically draining, often unpleasant tasks, done day in and day out, for low wages would place a strain on any worker.  And yet, these caregivers are entrusted with the physical and emotional well being of frail, sick, often confused elderly.  How much geriatric psychology are they taught in their CNA programs?  What moral support is offered to them to deal with the daily stress of their jobs?  Do they feel valued?  How do they know that they are doing something vitally important for our society?

We are asking some of the most vulnerable, resource poor, strained individuals in our communities to offer gentle, intimate and consistent care for our beloved elderly family members.  We fail to provide them with the educational, psychological and financial tools to do so.  Do we wonder why the quality of elder care is not excellent?  While the reasons for poor quality care are complex and cannot be reduced to one simple formula, I believe, they reflect our loss of respect for age and for human dignity – our loss of compassion for others and our avoidance of the reality of our own aging and death.

[1]  http://www1.salary.com/Certified-Nursing-Assistant-Salary.html

[2] http://www1.salary.com/Certified-Nursing-Assistant-Nursing-Home-salary.html

I began my relationship with the elderly in nursing homes when I was 15 years old.  My first summer job was as an “aide” in the local home in my small community in Nova Scotia. A nursing aide job was just about the only summer employment available for a teenage girl in our village. Absolutely no training or prior experience was required; all training was offered on the job by fellow aides and the nursing supervisor (remember, this was in the late 1960s). The job didn’t pay well, but it was better than the allowance I received from my parents.  The biggest perk was that an aide was required to wear a white uniform dress, white pantyhose and white shoes.  It was fun to get new clothes and to feel official, grown up and important, at least for the first hour or so on the job.

It was very hard work.  Shifts were eight hours with one meal break.  Nurses or LPNs (Licensed Practical Nurses) dispensed the medications, but the aides did everything else, usually working in efficient teams to visit a long list of patients during each shift. I was on my feet 3-4 hours at a time in the early morning, moving from room to room with my cart of clean linens, basin, soap and cream and helping to bath, toilet, and dress the patients. While one aide would move the patient onto his or her side, the other would wash the back, bottom and limbs and prepare fresh sheets.  Then we would roll the patient to the other side to straighten out the linen and wash the front side of the body.  Some patients had bedsores, and the treatment for these was primitive and painful.  During and after morning rounds, breakfast would be delivered and sometimes we would feed patients.  Because there was no dining room in the home, patients ate in their rooms or hallways, and those who were mobile were dressed and placed in wheel or stationary chairs.  In the afternoon, all of this happened in reverse. Once rounds were completed we aides (some of us very young), would be required to update and sign each patient’s chart making observations about his or her physical and mental condition.

I enjoyed working alongside some of my fellow aides, and some supervisors I admired, but there were others with whom I dreaded being paired, not because they were shirkers—we all worked hard—but because of their attitude toward and treatment of the patients.  Some aides were physically gentle and emotionally solicitous. Others were rough, abrupt and, well, the euphemism would be “disrespectful.”  Most of the aides were older and had been doing this work for a long time.  Some were hardened to the suffering they had observed.  Others were perennially tender.

From my recent experience of nursing homes in the northeastern United States, not a great deal has changed in 50 years.  Yes, all aides are now required to have some degree of formal training and there are unions to advocate for them.  More government and other oversight is exercised; rating systems provide information on the quality of care; a variety of ancillary services and programs are offered; and formal care plans are required.  But the patient’s experience is similar to those who were under my care in the late 1960s.  The work is still physically exhausting and often extremely unpleasant for the aides; and the daily routine is nearly identical in most of the dozen or so nursing homes that I have encountered over the last 25 years.  Of course, there is one huge difference.  The cost for this care has increased exponentially.

Enormous challenges exist on all sides:  for individual caregivers and for eldercare institutions, for families who place their loved ones in nursing homes, for the patients themselves, and not least of all for the health insurers who cover the costs for this care.  It’s a complex, interdependent, often inefficient, and, in many instances, inhumane system.  And it is permeated by issues of respect and disrespect.  I’m not a professional, and there are many who have analyzed and advocated for improvements in the system.  It’s not good enough yet.

Upcoming posts on this topic:

  • The Nursing Home Staff
  • Food and Feeding
  • Personal Care, Clothing and Incontinence
  • Rehabilitation and Long-term Care
  • Advocacy and Families
  • Dementia
  • Home Care and Hospice

Respect: The Elderly and End of Life Care

One of my original motivations for launching this blog was the recent experience of my friend, Dorothy, with today’s healthcare “system.” To introduce the topics of respect and disrespect for the elderly in nursing homes and in the homecare system, and, in particular, for those nearing the end of their lives, I would like to share a little about Dorothy and my relationship with her in the year preceding her death.

I first met Dorothy at church about 15 years ago. After she moved away to an independent living community in a nearby state, we stayed in touch through occasional letters and emails, and I would visit her a couple of times a year.  Last year she moved back to a nearby town to live in the first-floor apartment of her son, Robert’s, double-decker home because she could no longer manage on her own. She died the day before her 98th birthday in December 2016.

After her return to the area, my interactions with Dorothy became more frequent, both because she was nearer and because I was retired and had time to visit friends.  She cared deeply about others, me included, and we became close over the last months of her life.  She was an exceptional person; her intelligent mind was very clear and sharp to almost the very end, and she had very definite ideas about how she wanted to live and die.  We talked openly and freely about those ideas. At some point during the last year I wrote her a letter expressing my desire to share her journey towards death.  She did not, immediately, acknowledge or respond to that request, but I felt invited into her journey by the regular interactions I had with her and her son.

This is what I wrote a month after she died.

Dorothy pushed me away close to the end of her life.  At the end, she wanted around her only those she thought she could legitimately consider caregivers:  Robert, his wife, the hospice care aides.  She was reduced to needing physical care and to being unable to give anything.  She considered me a friend to whom she needed to give something of herself and she had nothing left to give.  If I would show up to see her, she would feel “called forth” from her depleted state and obligated to offer some “energy of giving” that she no longer possessed – even if it were only a look or a smile or a word.  She resented that obligation and wanted to be freed from it.  She wanted me not to show up.

Somehow understanding this, the gift I gave her at the end was “not to show up”. I stayed away out of respect for her desire and need. 

Of course, what she didn’t know, couldn’t understand, from the perspective of her personal life- experience of taking a great deal of responsibility for the care and wellbeing of others, was that I didn’t need or want any kind of care from her – not a word or a look or a touch.  I simply wanted to be present, silent, still.  I wanted to sit there, nearby, loving and respecting her.

In the last months of her life, Dorothy listened a great deal to me; to stories about the events and people in my life.  She seemed interested, almost fascinated in a simple, direct way.  There was sincerity and clarity to our conversations.  Because she was deaf and dependent on two hearing aids, I would speak slightly slower than normal; clearly and distinctly.  That demanded that I choose words carefully and with economy.  She did the same because her energy was lagging.  Conversations were not long.  I listened a great deal to stories of what was happening to her physically as she became weaker – stories about her interactions with the healthcare system and her frustrations about it.  She was kind and generous to individuals, for whom she tried to find excuses for inefficient or ineffective service, but she was a thorough critic of the system that she felt was under-serving her and other elderly and dying persons.  We talked about the possibility of writing something about the failures of the “system” and how it affects those like her. She was shocked by what she was experiencing and seeing and wished there were something she could do to effect change.

She also told me stories about her children and her love and concern for them; and stories about her life, her difficult times, and her relationship with her beloved husband.  What she offered me in those conversations seemed like precious jewels that I knew, as I was receiving them, I would cherish forever. 

Dorothy was not always “good.”  Sometimes she was stubborn, demanding, picky, judgmental, and critical.  Because she was so intelligent, a highly-educated scientist, she could see through much of the dissembling and patronizing that she encountered in doctors and healthcare professionals around issues of aging, illness and death.  Dorothy had always been strong and self-sufficient. To the end of her life she had a very strong will.  She was not perfect, but she was always intense and honest.

I realize now that I did want something from Dorothy.  I wanted her to give me the gift of sharing her dying.  It was a gift she could not give, and I accept that.  Though to me, at this point in my life, it seems a very important gift, perhaps the most important.  I wanted to be Dorothy’s student.  She had been a role model for me in life; I wanted her to be that in death as well.

Dorothy experienced two nursing home stays in the last six months of her life—one in a “rehab” unit after a hospitalization and another in respite care while her son was trying to arrange for more extensive homecare.  Both stays were deeply disturbing to her.  She felt more fortunate than her fellow patients because she was mentally competent and could advocate for herself.  By contrast, many others, she felt, were severely under-served.  The homecare that her son worked diligently to set up was spotty and didn’t fully meet his or her needs or expectations.  In future posts, I will describe some of the specific situations she encountered in the nursing homes, in particular.

There is much current public discussion and writing about end-of-life medical care, how it has evolved and whether it serves well the people who need it.  Two books are important contributions to this discussion:  Being Mortal, by Atul Gawande and Modern Death: How Medicine Changed the End of Life, by Haider Warraich.  A TED talk, “What Really Matters at the End of Life,” by BJ Miller also provides a fresh and insightful perspective:  https://www.ted.com/talks/bj_miller_what_really_matters_at_the_end_of_life

The voice I hope to add to a discussion about end-of-life care and respect is one of personal experience:  my years of interaction with the nursing home system in the northeast as guardian for a patient who lived in several “homes”; the experience of my mother-in-law who lived and died in a nursing home; the treatment my father received under hospice in Canada; Dorothy’s experience.  As I ponder their situations I feel that respect is the crux of the matter.  The system we have put in place, as a society, to care for our elderly, reflects a deep disrespect for the very people it was created to serve.

The next post will say more on this topic.