Nursing Homes: Money, Money, Money

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When Dorothy began to consider the possibility of spending her final days in a nursing home she asked me and her son, Robert, to gather information about the cost of such care.  She hoped to leave an inheritance to her children so wanted to choose a care option that would meet her needs but not eat up all her resources. Because my friend had worked extremely hard, managed her finances carefully and lived frugally all her life, her income was above the poverty level. She had enough resources to qualify as a “private pay” patient in a nursing home, meaning that her care would not be subsidized in any way by Medicaid, the federal and state health insurance program for low income individuals.

She was convinced from the outset that care facilities in the Boston area would be more expensive than those further from the city, and of course the information we gathered confirmed that suspicion.  What was shocking, however, was not the differences in price from one location to another or the specific types of care the different facilities offered, but rather, the total monthly cost for a semi-private room, regardless of locale or care.  In and near Boston, the price per day ranged from $410-$490, or $12,300-$14,700 a month.  Further afield, in the neighboring states of Maine and Vermont, the range was $260-$333 a day, or $7,800-$9,900 a month – a difference of almost $5,000 a month for the same basic, and perhaps even marginally, better care.

Assuming that Dorothy’s physical decline was serious enough for her to qualify for admittance to a nursing home, she was looking at the possibility of spending between $93,600 and $176,000 a year for care as long as she lived.  Her modest savings that she wanted to pass on to her children would severely, and very quickly, diminish.  Her children tried to convince her that it was most important for her to get the care she needed and deserved, and that she should not be guided by thoughts of their future, but she could not put these concerns from her mind.

For the poor and destitute, the financial decision to enter a nursing facility is, perhaps, a little easier.  A nursing home will take almost the entire Social Security income of an impoverished individual and supplement that with Medicaid funding.  I do not know the prices for “Medicaid” beds in nursing homes (that’s rather difficult for a lay person to find out, and my intent here is to speak from personal experience and to focus on the situations with which I am intimately familiar), but we can assume that the state and federal governments pay significantly less per bed than private paying patients.  This means that private payers are subsidizing Medicaid patients not only through their lifelong payments to Medicare and Social Security but also through the payments they make for their own care (upwards of $176,000 a year).  This should not trouble a socialist like me, or a liberal like Dorothy, but somehow, as part of the larger eldercare picture, it does seem a little disconcerting.

When Dorothy agreed to a week of respite care in a nearby nursing facility she paid approximately $400 a day, or $2800 for seven days.  For that amount she received a bed in a semi-private room; three meals a day; assistance getting in and out of bed, bathing, dressing, and going to the toilet; medication dispensing; laundry service; a few physical therapy sessions and consultation with an admitting doctor/gerontologist.  This may not seem like an outrageous amount of money to pay for such services, but consider that the meals were meager and of very poor nutritional quality; the assistance was infrequent, always slow in coming and often performed in a grudging and brusque manner; her medication regime was uncomplicated; and she did not use the laundry service because she had been warned that unlabeled clothing would be lost.  Important information that she or her family communicated to one shift of caregivers would not be passed on or remembered by subsequent shifts.  Once she had to wait for more than an hour to be taken to the bathroom despite repeated “calls” for an aide.  “It was very painful,” she said.  In other words, she received “custodial” care*, in no way customized or responsive to her needs or wishes. Dorothy’s conclusion, at the end of her week of “respite” in a nursing home was that she had not gotten her money’s worth.

Why does it cost so much to provide this kind of custodial care? The consumer is, of course, paying not just for the care but for the “overhead” of capital expenditures, building maintenance, employee salary, training and benefits, certification costs, advertising, record maintenance, reporting, etc.  And, of course, all these expenses are higher closer to metropolitan areas.

I do not believe I would (and Dorothy might not) so much mind the expense, if it were to purchase the type of atmosphere that takes into consideration the trials of aging; an ambiance that generously dispenses kindness, attentiveness, gentleness and compassion; a tone of respect for the humanness of those of advanced age, the sick and the dying.  But that is not what one is buying when one checks into most nursing homes.

*Custodial care is non-medical assistance with the activities of daily life (such as bathing, eating, dressing, using the toilet) for someone who’s unable to fully perform those activities without help.

Next Post     Nursing Homes:  The Caregivers

Teenager in a Nursing Home

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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

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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.

The Anatomy of Respect

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The previous two posts have illustrated what I believe is integral to respect.  The giver of respect must truly listen to or see the perspective and experience of the other and make an honest effort to understand that perspective.  The receiver of respect comes away with a sense of having been heard, understood and accepted.  Agreement is not necessarily part of this experience, though it often occurs.

This is not, as they say, “rocket science”.  I’m not stating anything here that hasn’t been taught, expounded, written, preached and sung countless times by more articulate and wiser voices than mine.  But because the examples I’ve given are so ordinary, so prosaic, so simple, I hope they might awaken in you some memories about times and places in which you have been moved to offer, or blessed to receive, signs of respect as well. I believe we could enrich one another’s comprehension of respect by sharing some of those incidents with each other.  Thereby, we might understand that respecting one another, at this time in our history and this place in our world, is not some Herculean task that demands a great leader, prophet or seer, to show us the way, but the stuff of our everyday lives, nearer to us than our own shadows, perhaps.

The other side of the coin of respect is fear.  Perhaps that will seem like too strong a word to describe feelings that often are labeled or expressed as dismissal, discomfort, embarrassment or indifference.  But I have always found that fear comes into the equation in some way for me.  Do I feel safe or unsafe in some very subtle way?  Am I afraid that I will be even slightly diminished?

With the above reflections in mind, I invite you to post some descriptions of your own experiences with respect/disrespect and the conclusions you have drawn from them.  Please keep in mind the guidelines I established in the introduction.  Please also feel free to comment on anything I have written.  I look forward to reading what you will bring to this conversation.

 

Respect: Accidental

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Sometimes an act of respect simply happens, without either party involved noticing or consciously identifying it as such at the time, though usually one, or both, come away feeling good about the interaction.

During my work life as an executive assistant at Radcliffe College and Harvard University, I served a total of six deans, a president, and a vice president. I plan to write more about executive assistants and respect in future posts, but the incident I’m describing today occurred toward the end of my career and happened at the school of engineering.

The workday of an executive assistant is full of a long string of interruptions; sometimes the interruptions are themselves interrupted. Priority projects are extremely difficult to complete.  Anything that needs focus, concentration, and quiet must usually be done before or after work hours, when co-workers and bosses are not in the office.  I and my fellow EAs at the school of engineering, as we were wont to call ourselves, came up with a tentative plan to claim some “quiet time” for ourselves during the workday by closing our doors from time to time so that we could concentrate on tasks that needed, well, concentration.

At the suggestion of another EA that we ask our bosses if this plan were acceptable to them,  I looked for an appropriate time to speak with the dean I was then supporting, who happened to be new in his role.  From my perspective, the conversation did not go well.  He seemed, shall I say, resistant to the idea.  Up until then, he been very understanding and supportive of my work needs, so I was disappointed and a bit surprised by his reaction.  I felt deflated by the end of the conversation, and he seemed annoyed.

I was in the EA business for a long time and considered myself very adaptable, resourceful and tough. I tried to start each new day fresh and cheerful, so when the dean came into the office the next day, we exchanged a “good morning” and asked each other how we were.  I said my usual, “Fine.”  A few moments later he returned to my desk and said, “Tell me more about your need for quiet time.”  My heart smiled.  I thanked him for asking and described how difficult it was to get things done with many interruptions, however legitimate they might be.  He described his feeling that it was important for the dean’s office, and the dean, to have an “open door policy” and to be available throughout business hours to faculty, students and anyone who might need us.  I expressed my understanding and agreement and explained that I thought simply closing the door part way might encourage those who were headed toward the office to think again about the importance of their errand and whether it might wait until another time.  We didn’t “settle” on a policy, but by the end of the conversation, we better understood each other.  I respected him even more than I had previously, especially for his courage, sensitivity, and generosity in continuing a conversation that had gone badly the previous day.  I felt heard, and because I felt heard, I felt respected.

Respect: Intentional

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I don’t intend for these blog entries to be merely “personal,” but I thought I might begin with a couple of personal anecdotes that demonstrate my own experience of feeling respected.  The first is an example of what I will call “intentional” respect.

As I mentioned in the introductory post, I retired a year ago.  The precipitating reason for my retirement was chronic pain that had been growing gradually worse over a three-year period.  I’d undergone a number of diagnostic tests. No cause could be identified, and my primary care physicians were stymied. I was frustrated with the medical system and anxious about possible reasons for the pain.  Often when I attempted to talk about “my pain” to friends and professionals alike, eyes would glaze over and the subject would be changed.  Most people were not uncaring; they just didn’t have any idea how I felt or how to help me.

After months of painstakingly working the healthcare system, I was referred to a pain clinic near Boston, MA where I was given a choice of two clinicians, a woman and a man.  I chose the woman, imagining that she would better understand me.  She did not, unfortunately, have an opening for over a month, so I reluctantly agreed to see the man, a pain psychologist, who had an opening the following week.

I imagined I would be invited to join a therapy group where, with other chronic pain sufferers, I would describe my struggles with pain, and we would support one another with understanding, sympathy and suggestions for various pain management strategies. Instead, I entered a one-on-one therapy relationship.  At our first meeting, my doctor asked me to describe what had brought me to the clinic.  I gave a succinct description of the pain, the various tests I had undergone, the various specialists I’d seen, and how I had been referred to him.  He took a deep breath and said, “That’s an impressive description.”  Strange, but I felt immediately recognized and validated.  He briefly described the theory of pain management that he and his colleagues embraced and what we would cover in our sessions, and gave me the names of two books, asking me to choose one and read it in between our meetings.  I immediately bought both books and started reading them simultaneously.  I was going to get this right!  I desperately wanted this therapy to work.

He had seen my desperation but wasn’t thrown off balance by it and didn’t judge me.  He accepted my desperation, and gradually taught me to accept it too – it, my pain and much more.  I quickly learned that he was less interested in what went on in the days between sessions and more interested in what happened during the sessions themselves.  My “reporting in” behavior was kindly humored and accepted, but somewhere in the midst of a session, he would ask me to stop, breathe, and identify what I was feeling at that moment.  That’s where the windows into healing occurred – in those “present moments” when I simply told him about my feelings and he listened – listened to me, as I had never been listened to before in my life – with intensity, concentration, acceptance, and respect.  I was allowed to be who I actually was in that moment without any judgement or commentary.  At the end of each session he would remind me that I should sit quietly in my car before driving away and continue the noticing.

Over the six months of therapy I read both books and took copious notes.  I took baby steps into the practice of mindfulness and began to understand how my life experiences had resulted in the repetitive stress that had produced my pain.  I began to treat my body more gently and to listen to it and my mind/heart more carefully.  Yes, this story has a happy ending.  I am not pain free, but I now recognize the pain that I struggled against as a “gift”; the pain that was once the center of my life is now on the periphery.  I am feeling healthier, more alive, and more aware of myself, others, and the world around me.

And one of the keys to my healing was the experience of being truly respected.

With All Due Respect – Introduction

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My name is Moriah Freeman.  I’m a retired executive assistant who worked at Harvard University in Cambridge, MA for 25 years.  Since my retirement nearly a year ago, I have spent much time reflecting on my career, my life and responsibilities outside of work, my relationships, the American society in which I live, and my beliefs about what is true, good, loving and just.

In all my reflections, the theme of “respect” has come up repeatedly.  I have decided to start a blog as a way of sharing some of my thoughts about respect and of inviting conversation about this topic.   I think respect is key and integral to life in community – and we all live in at least one community, our families.  Many of us live in several.

I will describe some of the situations in which I have experienced both respect and disrespect and some in which I have observed respectful and disrespectful actions and attitudes toward others.  I’d like, also, to share my reflections on how I believe disrespect has arisen in that situation and how respect might be expressed – what it might look like.

I acknowledge that my perspective is limited by a number of factors: my race, age, economic status, family and social background, education, life experience and belief system.  That’s why I hope to encourage a conversation about respect.  I’m very interested in your perspectives.

I’d like to establish several guidelines for participation in this conversation:

  1. No obscenities, swearing or disrespectful language.
  2. Contributions should be limited to 500 words per entry.
  3. Briefly describe your background when submitting a contribution.
  4. Write about your perspective, and refrain from criticizing that of another contributor.

I will request that you edit posts that do not meet these guidelines. If you do not do so, I will delete the post.

Some of the topics I hope to introduce include the following:

  • What being respected does for a person
  • Learning to walk in another’s shoes, or at least to watch the other walk
  • Respect for the aging and elderly
  • Respect for homeless persons and understanding the “system” of housing the poor
  • When just one person cares and respects
  • Respect for the religious beliefs of others
  • Respect for those who serve and, in particular, those who serve us
  • Respect for animals
  • Respect for the earth
  • Respect in the long run – long-term relationships
  • Respectful endings

Most of the incidents I will describe and discuss are true and involve real people.  In each case I will ask the person or persons involved before writing about them.  In some cases I will involve them in writing the post; most often I will not use their real names.

This is not a “political blog,” but in present-day American society, it would be silly to imagine that political opinions will not enter into our discussion.  My hope is that, as we write, we will try to explain clearly our points of view and how they have arisen and been formulated, and that we will not resort to vilifying those who disagree with us.

I want to thank one of the most respectful people I know, Professor Harry Lewis, of Harvard University, for suggesting the title of this blog. I served as executive assistant to Professor Lewis for six months while he was interim dean of the Harvard John A. Paulson School of Engineering and Applied Sciences.  

I believe the ideas we will share with each other have great value.  Let us be gentle with one another.