Caregivers
Jim Phynn
BuxMont Unitarian Universalist Fellowship
August 12, 2007

My father and his twin sister could not have been any more different.  Of their parents’ eight children, he was the tallest; she was the shortest.  He was the skinniest.  She was, well, not the skinniest.

At some point in their childhood, their sibling rivalry apparently had a dispute where, if one of them said that they liked something, the other one had to hate it.  This is why my father didn’t like chocolate or cheese.  When we learned of this dispute, we would tease my father that it was a good thing Ruthie didn’t declare that she liked air.

Of the twins, my Auntie Ruthie was always the sickly one.  She had polio as a child and was plagued with numerous diseases throughout her life.  She successfully fought back breast cancer in the late 80’s and early 90’s.  The breast cancer came back in 2002 and she passed away in October, 2003.

My father, on the other hand, was probably the healthiest of all of the brothers and sisters.  Before the year 2005, the worst disease he had ever had, was hypothyroidism.  In 2005, he fell ill with a neurological disorder that affected his mobility.  My mother, my sister, and I watched him progress from walking with a cane, to needing a walker, to not being able to stand up without help, and then, ultimately, to not being able to stand up at all.  In May of this year, two years and four months after he first fell ill, he lost his battle with this disease.

Both my Auntie Ruthie and my dad had one thing in common:  as they learned that they had contracted something that would ultimately take their lives, they were surrounded by loved ones.  In the case of my Auntie Ruthie, her sons Mark and Joel took turns caring for her and tending to her needs when she could no longer care for herself.  In the case of my dad, my mother was his primary caregiver.  My sister and I lent her as much support as we could.

My father was in and out of numerous hospitals, rehabilitation facilities, nursing homes, and ultimately, a hospice.  With the exception of four days in a nursing home approximately two weeks before he died, each nursing home was just a temporary place to stay, while he tried to work himself back to the strength he needed in order to come home.  At times, we got the feeling that my mom wanted him in the house more than he cared for it.

I distinctly remember his first stint in a rehab facility after he fell ill.  I arrived about a half hour ahead of my mother, and it was dinner time, so I wheeled him down to the center’s cafeteria, put a bib on him, and started to feed him.

This was about the same time as when my older son was starting to eat solid foods himself.  And I had gotten into the habit of making faces with a gaping mouth, in an attempt to encourage him to eat.

Without even thinking about it, I found myself making the same faces that I did with my baby, with my father.  When I realized what I was doing, I immediately stopped and apologized.  He brushed me off, half-laughingly.  Only I wasn’t laughing.

I quickly learned the truth to an old Jewish saying.  “When the parent feeds the child, everyone laughs.  When the child feeds the parent, everyone cries.” 

There is never a shortage of tears when someone, for any reason, reaches a point where they must have someone else -- be it a life partner, child, friend, or nurse -- tend to their every physical need. 

In the late 80’s or early 90’s, New York City playwright Jonathan Larson accompanied an HIV-positive friend to a support group for people coping with the Acquired Immune Deficiency Syndrome, or AIDS. 

He later recounted that what struck him most vividly about this experience, was that, although the people had come to varying degrees of acceptance of the fact that they had this deadly disease, it was not a fear of death that motivated them the most.  It was the fear of the loss of dignity.  This experience became one of the many moving songs in his Broadway show, Rent.

“Will I lose my dignity?  Will someone care?  Will I wake tomorrow from this nightmare?”

We, as Unitarian Universalists covenant to affirm and promote the inherent worth and dignity of all persons.  Nowhere is this more important -- and, by extension, more difficult to do -- than when someone’s body or mind has been so ravaged by disease or injury, that they have no dignity left.

How do you uphold the inherent worth and dignity of a person who was once perfectly self-sufficient, when they now need assistance with such simple tasks as feeding themselves and going to the bathroom?  If they are no longer capable of reaching the bathroom, where is the dignity in having a spouse or a child change your diaper?  Some people might argue that it’s easier to allow a stranger to do it, than a friend or loved one.  While that may be true, it takes a certain amount of courage to recognize that this is something needed, and not all people are up to the task.

One time I was in a crowded doctor’s office, when a man started to become impatient about the delays in getting to see his doctor.  He seemed agitated, almost angry, when he insisted on seeing the doctor as soon as he could.  The receptionist asked him what was so important that he had to be taken ahead of all of the other people in the waiting room.  (I was wondering this myself, actually before she asked him.)  He said that every day at 12:30 he goes to have lunch with his wife, who was in late-stage Alzheimer’s disease.

The receptionist asked him why it was so important, if she didn’t even know who he is.  There was no sarcasm in her voice as she asked it; she just didn’t understand.  I’ll never forget his response:  “Because I still know who she is.  And I don’t want to lose that.”

The receptionist excused herself and in no time, the man was being called to go back and see the doctor. 

I don’t envy people who spend tremendous resources -- emotional, physical, and financial -- to act as a caregiver.  Nancy Reagan did it for more than a decade, watching her husband, the former president of the United States, gradually forget everyone around him, everything he had ever done, and then forget himself. 

Former Supreme Court Justice Sandra Day O’Connor retired from a powerful position in order to tend to her husband, who had recently been diagnosed with Alzheimer’s.  There is a cynic in me that wonders if any of her male colleagues would have done the same thing.

Alzheimer’s Disease has captured the national consciousness like no other neurological disorder has.  High profile celebrities such as Ronald Reagan and actor Charlton Heston publicly announced that they had been diagnosed with the disease.  Fifteen years ago there was an episode of the drama Picket Fences, where the son of the mayor tearfully put a gun to his father’s head, unable to bear watching his father descend any further into the nightmare that is this disease.  More recently, a running theme of the first two seasons of Gray’s Anatomy was the title character caring for her mother as she fought with Alzheimer’s.

Alzheimer’s is the most common form of dementia.  Many people dread hearing this as their diagnosis, since there is no known cure, and the time between onset and death is often ten years.  That is a long time, filled with uncertainty, resentment, anger, fear, and anxiety from that comes from all of the literature about this very well-known (but little understood) disease.

One of my favorite movies when I was a child, was the movie Pride of the Yankees, with Gary Cooper.  This movie chronicled the life of Lou Gehrig, who, after he retired from baseball, was diagnosed with Amyotrophic Lateral Sclerosis, or ALS.  It is commonly referred to as “Lou Gehrig’s Disease.”  Whatever you call this neurological disorder, it is not a form of dementia, but instead it affects the ability of the patient to move; ultimately, the patient loses the ability to eat and even breathe.

I remember watching that movie with my father.  There is one scene in the movie where Gary Cooper, playing the athlete in the early stages of the disease, falls over and doesn’t understand why.  My father, as his neurological disorder started to overtake his body, recalled this scene with great fear, hoping that something similar would not happen to him.  This fear of falling was a constant fact of the last two years of his life.  Every time he stood up, he would cry out from this fear of falling.

I couldn’t bear to hear those cries for the few hours per week that I was in the house with him.  This, probably more often than anything else, is what caused my mother to lose her patience with him. 

One thing that is true about all neurological disorders, be it Alzheimer’s Disease, ALS, Multiple Sclerosis, Parkinson’s or the scores of other, similarly debilitating diseases, is that the patient often lashes out in anger.  Since they can’t necessarily lash out at the disease itself, they may yell or scream at the people who are there.  More often than not, it is the caregivers.  The people who are there to see to it that their needs are being met.  It is an unenviable position.  Reminding yourself that the anger isn’t really directed at you can only take you so far.

About six months before my father died, I was visiting my parents with my family, and my sister had also taken her family to the house at the same time.  One of my nephews was running around the house, doing what toddlers generally do, and my father yelled at him.  I don’t remember what Ben had done, and I’m not sure it mattered.  This was a textbook example of one of these angry outbursts that people with neurological disorders are prone to doing.  My brother-in-law responded with equal vitriol.  His exact words were, “Why don’t you learn how to act like a human being?”

My mother and my sister didn’t need to hear that.  I took Jeff aside and I said to him, “I’m not defending my father here, but you were way out of line.”   To say that the tension in my parent’s home -- the house I grew up in -- was high, is an understatement. 

It wasn’t long after that, that my father ended up in a hospital again, after which he was transferred to a nursing home for rehabilitation. 

I don’t envy the people who work in a nursing home.  When someone first gets admitted to the home, the nurses will inevitably be informed -- sometimes angrily -- that “I want to go home.”  The nurse will then be forced into the unpleasant choice of instilling a hope of going home that may or may not be realistic, or responding with some variation on “This is your home now.”

Some people might accept the fact that, for their own safety and health, they need to be in a nursing home, but few people actually *want* to live in one.

And how do you tend to every need of one resident of a nursing home, when you’ve got fifteen to thirty other residents who also need your attention?  It’s almost too much for the staff of a nursing home to handle. 

Nursing homes can also be a rapid drain on the finances of their residents and their families.  My Great Aunt Gertrude was quite wealthy.  My mother was her favorite niece, and her will stipulated that my mother would receive a fairly substantial percentage of her net worth.  She lived in a nursing home for approximately the last two years of her life.  I was thirteen years old when she died, and there was almost nothing left of her estate for my mom, or any other family member, to inherit.

Two industries have arisen from the combined needs of preserving some modicum of financial independence and the lack of a desire to actually live in a nursing home: long-term care insurance and home health care.

The origins of long-term care insurance are fairly noble, and, to be fair, much like many other forms of insurance that we have today.  Specifically, as the AIDS epidemic started to take hold in the United States and people reasonably felt that they could not afford the treatment they needed, the suicide rate among AIDS patients skyrocketed.  Additional study into this revealed that many of these patients did so to prevent their loved ones from spending too much money just on caring for them.  Long-term care insurance effectively was intended to pick up where health insurance leaves off (which is to say, at the point where no additional treatment can improve the patient’s condition) but ends where life insurance picks up (in other words, the death of the patient). 

Unfortunately, as is true with all aspects of insurance, there are often large numbers of stipulations and provisos that must be adhered to in order to claim benefits.  Between waiting periods, provisions that are based upon actuarial life expectancy projections, partial reimbursement for needed services, high premiums, and certain tax considerations, the intent behind the insurance is not often consistent with the reality of the administration of the insurance.

With home health care, a skilled health-care provider (usually a nurse, but not always) comes to the home of the patient and provides the individual treatment the patient needs, on an as-needed basis.  This type of care both keeps the patient in his or her own home for as long as possible, while at the same time, offering the patient the one-on-one type of care they would not receive in a nursing home.

One of the biggest negatives to having a home health care provider, is, ironically, that many types of long-term care insurance will not reimburse for these costs.  Perhaps it is because the patients live longer when under the care of a home health care provider.

In a recent ruling, the United States Supreme Court declared that home health care workers are effectively no different from any other hired help within the home, and, therefore, are exempt from existing laws regarding overtime pay.  In other words, if you are a resident of a state that does not specifically have a law that makes a distinction between home health care workers and, say, a maid or a gardner, there is no legal distinction between the two, and, therefore, the worker is not entitled to overtime pay.  New Jersey is one such state that makes no distinction.  Pennsylvania does.

This legal decision was a setback for advocates of home health care.  Like many Supreme Court decisions that do not specifically declare an existing law unconstitutional, it is also an opportunity.  If enough people are not happy with the net result of the ruling, the solution is a change to the laws that led to the decision in the first place.  Petition the states to pass laws that do make that distinction.

It is often a cliche to hear someone, for any reason, declare “I don’t have time to get sick.”   For the caregiver who dedicates nearly every waking moment to ensure that their loved ones are as comfortable as possible, this cliche is magnified not only by the lack of time, but also by the fact that, if they were to get sick, they could pass on the illness to the other person.

On several occasions since the onset of my father’s illness, he ended up back in the hospital for various treatments, after which he would be confined to a nursing home for the purposes of rehabilitation until he was strong enough to return home.  One such occasion was the November before he died.   Unlike previous stints in a nursing home, this time, my mother would occasionally bring him home for a few hours, with either my help or my sister’s help.  Knowing that he would not be ready to come home on a full-time basis in time for Thanksgiving, we planned on bringing him home early in the afternoon that day, watch some football, and have an early dinner with the entire family.

The Monday before Thanksgiving, those plans fell apart when my mother herself got sick.  She spent Thanksgiving day in the hospital, being treated for pneumonia.  In the end, my sister and I still brought my father home from the nursing home.  We prepared the dinner my mom had planned on cooking, and brought her some turkey and trimmings in the hospital after we brought dad back to the nursing home.

I don’t know if my mom’s bout of pneumonia was something she fought off due the stress of caring for my father while he was in the house, only to hit her after he was out of the house, or if that was a coincidence, but people who use the cliche of not having time to get sick, often do get sick when they finally do have the time to do so.  We would have had to put my father in a nursing home, if my mom had gotten sick while he was still in the house.

The emotional, physical, and financial toll that friends, family members, and loved ones take on -- at least semi-willingly -- when someone falls ill, is often too much for one person to bear.   On countless occasions, my mom, my sister, and/or I would ask ourselves “how much longer will this go on?”  I can only wonder whether or not my father asked himself the same question. 

My father was a proud man and never liked to let anyone know how he felt.  As a result, none of us ever truly asked him that question.  The closest we would come was with our attempts to reassure him that his fears would not come to pass.  He did not fear dying so much as he feared falling.  If someone would brush his feet while he was sitting in his recliner, he would scream loudly, sometimes frighteningly.  We would ask him if he was in pain, and he would say no.  This screaming was simply because the unexpected had happened and it triggered an additional fear.

Ten days before my father died, I brushed his feet accidentally, and he didn’t jump.  I knew then, that his time was almost up.

The day after I brushed his feet, he was back in the hospital with pneumonia.  Additional tests revealed that some of the food he had recently eaten, had ended up in his lungs instead of his stomach.  We tried to get him to eat some liquified foods, but, by the end of the week, it was clear that there was nothing else that could be done.

My father spent the last four days of his life in a hospice, with some of the most caring and attentive people you can imagine.  They honored the stipulation in his living will, which stated that he did not want a feeding tube.   His last three days were spent in a deep sleep, just shy of what would medically be classified as a coma. 

My mother, my sister and her husband, my father’s brother and his daughter (my cousin), and my wife and I maintained a bedside vigil for the better part of those three days.  (We didn’t want any of our children to be there for their own protection, and had to work around child care and babysitting). 

During those three days, we shared stories, laughed and cried, wondering what, if anything, my father could hear.  I kind of half-hope that he heard of the different occasions we fooled him into eating chocolate despite the childhood argument he had had with his twin sister. 

My Uncle Lenny and my cousin Lori went home to New York at about 9 am on May 17, 2007.  My mother and my sister left the hospice about an hour later to allow the people who had installed a chairlift on the stairway of my parents’ house, to remove it.  I went to work that day.

My father died at twelve minutes after twelve that day.  The only person in his room at the time, was the hospice chaplain.  I believe that he didn’t want any of us to actually see him die. 

My mother is showing some classic signs of what is commonly referred to as “survivor’s guilt.”  What could or should she have done differently?  Although the autopsy results were by and large inconclusive, she points to two things that she insisted on, which, if she were to go back in time, she would do differently.  The first is a pneumonia shot that he had, two months before he first took ill.  The second was the decision to stop giving him a drug designed for multiple sclerosis patients the January before he died.

With regard to the pneumonia shot, there is no way of knowing whether that caused his disease in the first place, and with regard to the MS drug, it was questionable whether it ever worked.

I worry for my mother, who now does have the time to get sick.  I pointed out to her, accurately, that Dana Reeve discovered that she had lung cancer (and later died of the disease) after her husband finally succumbed to the injuries he sustained he fell off of a horse and was paralyzed from the neck down.  At the funeral of Lady Bird Johnson last month, Nancy Reagan looked quite frail, and I question whether she is experiencing a letdown from her own caregiving experience.

My mother is doing fairly well.  She doesn’t put up too much resistance to me or my sister when we insist that she spend time with us.  She can now dedicate more time to the running of the child care that she owns.  And she reports that she still occasionally yells at my father over something or other.  As I speak these words, she is going on her first vacation since before my father got sick. 

How do we uphold the inherent worth and dignity of all people?  There is no single, correct answer, but here are some possible answers:

1.      Listen to what people have to say.  Don’t draw attention to aspects of their lives that don’t hold much dignity, but rather engage them in ways that do.

2.      Offer support for the caregivers.  Remind them that they, like the people they’re caring for, deserve respect and have an inherent worth and dignity over and above the act of caring for someone else.

3.      When it comes to that point, don’t be afraid to allow people to die on their own terms.  There is no shame in saying goodbye. 

To harken back to the questions posed by the AIDS patients in the musical Rent:

“Will I lose my dignity?”  That is something you can define for yourself.  You don’t have to if you don’t want to.

“Will someone care?”  For Unitarian Universalists, that’s an easy one.  We believe in equity and compassion for all persons.  We promote the goal of world community with peace, liberty, and justice for all.  And we respect the interdependent web of existence of which we are all a part.  The short answer is ‘yes.’

“Will I wake tomorrow from this nightmare?”  That’s not an answerable question, but you can redefine what is happening to you as something other than a nightmare.  Let your caregivers help you in all three of these goals.