By Barbara Lee - New Windsor, New York, USA - Ordinary Time/All Saints 2011
Not only creativeness and enjoyment are meaningful. If there is a meaning in life at all, then there must be a meaning in suffering. --Victor Frankl
It is one of November's last days. The light is wintry and Thanksgiving has come and gone. I have entered a colorless hospital room. On one side of a thin polyester curtain is my 85-year-old mother. I consider her as she lies in the bed, groaning over and over again in pain. Across the room sits a rumpled man, and beyond him a view of the austere Hudson River. A fog hangs above the water and a lone tanker bears southward. Its hull is exposed as it rides high above the river, buoyant and light after delivering its cargo.
I lean to one side to unobtrusively peer over to the left of the man's side of the curtain. How willingly we receive imposed conventions. The most modest of us easily accept that a thin ratty piece of rayon affords privacy.
The patient I see is a wrinkled and wizened old woman. I guess she is his grandmother. Blue tired eyes glitter against an unhealthy, yellow skin tone. But she is alert and lively. “Is that your mother?” she asks. “She was in so much pain all night.”
I look back at Mom, alarmed. What is wrong with her?
All seems flat -- one of those hospital moments when time hangs suspended. Like a game changer moment, as when the ball thrown to the hoop in the final ten seconds just hangs until...whoosh.
The air seems sucked out of us. The November light, the cold air, my senses.... All seem flattened and dulled.
When my mother was first whisked from my home by ambulance to the ER, my initial thought was that it was a bleeding ulcer. All those meds she was taking, I thought, scornfully. Whenever I had her with me, I would take her pills from the dispenser that organized her meds according to a.m. and p.m. dosage. But it never failed that she would be overheard in the middle of the night, fumbling for more from the medicine cabinet in my kitchen. Eventually I took to hiding everything -- aspirin, even vitamins. Babyproofing, I would say to myself, eyes rolling.
And now I am looking at her, trying not to show any anger, wondering if she had snuck again into the medicine cabinet. Had she found something? Anything? Had that brought this on? That rush of blood in the bathroom toilet?
She had called my sister and me into the living room, her voice low and cautious. "Eva? Barbara?" At first I tuned her out. I had become used to ignoring the frequent summonses by both my elderly parents. Then I heard the smallest note of alarm. When I reached her, I could see the paste in her skin, her wan frailty. Eva helped her to her room. Then we saw the blood.
Shortly after, the ambulance arrived. "You go," I told Eva. I just had no more energy.
And now I am looking at her. Soon, the doctors agree about the ulcerated stomach. I am relieved, sensing it is not life threatening.
Just a week earlier, Dad had been rushed to the hospital. Mom, suddenly on her own in their new independent living facility in Tuxedo, New York, was adjusting to their new quarters.
I was the one beginning to fray at the seams.
About two years before that, I got caught up in a new kind of struggle that felt like wrestling my parents to the mat -- my fun-loving, usually rational, always independent-minded parents.
Shockingly and suddenly they had become not only frail but an ordeal. In a tiny wrinkle in time, both of them were having trouble keeping their legs under them. The earth they stood on seemed a slippery, uneasy ground. And, finally, a quicksand they fought.
These were the same two people who, a few years earlier, had traversed the Via Veneto and the Villa Borghese with my husband and grown kids. Yes, they had complained about bad backs and various aches but they had had little trouble negotiating the Colosseum. My mother had even climbed the papal sanctuary next to the Basilica of Saint John Lateran. The wooden staircase there, reputedly brought to Rome in the Fourth Century, is believed to be the very one climbed by Jesus on the day He was sentenced to death. I remember being annoyed at Mom. "You are too old!" I had exclaimed. This annoyed her.
Years ago they had left their home in suburban New Jersey and moved to a beach in Maryland. They were delighted with ocean side retirement, while we, the abandoned children, stayed north raising our own kids and working.
Those were the days of active retirement. "We are so busy!" Mom exclaimed when I questioned why they had not simply stayed north in their comfortable bedroom community near Manhattan. She missed her grandchildren greatly and sometimes resented my dad for having taken her to Maryland. But garden clubs, book clubs, golf games, cocktail parties, volunteering at the hospital, and days at the beach kept loneliness to a minimum. On top of this, my parents had a great group of new friends, and some old friends who had moved down there as well. I would encounter some of them at Sunday Mass when visiting my parents. "Oh, you are Barbara!" they would say. "And you have a brother in Vermont, and a sister in Connecticut?" "Yes," I would say, and I live in the same town as my other brother, Peter, and his family. "Oh, four!" many would say.
All the children and grandchildren visited. We frequently took our vacations together, visiting Mom and Dad at the same time. Eventually those great gatherings stopped as sports and other summer interests occupied the lives of the grandchildren.
One summer, though, my siblings and I noticed a change.
My Aunt Barbara once said, "Every year after eighty is like ten years." I don't know if that is true, but at turning eighty, my dad changed greatly. With each subsequent visit, the change was more noticeable until there were verifiable clues that would be collected during each trip. Clue one: the house lacked a neat touch. Mom had macular degeneration; she was not noticing dirt and grime in the bathrooms and under furniture. Clue two: the garden and yard started to look overgrown and untended. Clue three: food was spoiling in the fridge. Clue four: unpaid bills were showing up in Dad’s mail. Clue five: Dad would stare into space at times as a vacant almost quizzical look flashed in his eyes. Clue six: Mom seemed strangely childish about certain things in a way it was hard to put my finger on, but it was noticeable.
In addition, both my parents had terrible backs and I began to see they were too reliant on the vicodin they were being prescribed. That coupled with the wine they liked to enjoy each evening scared me. My siblings and I imagined a frightful scenario: an innocent trip out to dinner ending in tragedy, either for our parents or for someone else's family.
Following these visits, my siblings and I became convinced Mom and Dad could no longer live in their home. Although it wasn't easy, we convinced them to move back north and to live with me.
It was all so unscripted, and it was a nightmare, especially at the beginning. Each day, Dad would vow to get in his Mercedes and drive back to Maryland. Half the time Mom argued, "No, Ed, that's impossible," and half the time she agreed, wanting to return home as well. This, combined with having two strong-willed women in one house, made for days that severely tested all of us.
Losing their independence was horrible for Mom and Dad. They were pained, too, that they had not planned well for this stage of their life. My dad had been a financial planner, and although he had purchased long term care insurance twenty years earlier, he had done nothing to really prepare for his own final years. In fact his long term care insurance was limited and provided no in-home care.
My siblings and I began to argue about what our parents should be doing, where they should be going. I wanted them with me; my siblings wanted them in a facility. Complicating matters, my parents' house was saddled with a reverse mortgage that required them to live in the house in order not to go into default. Furthermore, an ominous real estate market worried us terribly about the prospects for a sale.
The stress of all this was so great that I quit my job. And finally, in a pique of anger, I sent my parents packing to my brother's home for what turned into a several months' stay.
Eventually, my parents were moved into an adult living facility that did not satisfy their comprehensive needs. Recognizing this, I set out to find a proper assisted living facility that would qualify for the care plan my dad had paid for long before. My mother and I set to work, examining different options. A facility near where we lived had all the qualifications of nicer ones we visited, but my mother objected to the ambience -- people sitting outside in plastic chairs, smoking; small rooms; rustic decor. In fact, it was more than adequate, but she turned her nose up at it. We decided on a place in Rhinebeck, even though it was nearly an hour from my home. It offered a continuum of care, meaning there was a beautiful assisted living component attached to a well-equipped and staffed nursing home. This seemed better to us than a facility in Monsey, New York, which my mom preferred aesthetically, because of Dad's dementia, carotid arteries, and fifteen-year-old quadruple bypass. At the Rhinebeck facility, if he were to get very sick, he would be just a walk down the hall from Mom.
When we made the deposit, I lamented to the director about how few places in New York State offered the continuum of care his facility provided, and about the fact that even fewer possessed the licenses that Dad's insurance would cover. The man explained that because of different legal structures, states such as Florida, Ohio, New Jersey and Pennsylvania are more advanced when it comes to these facilities. His own was a Baptist operation. Baptists run several similar facilities, with good reputations, in various states.
A week before Mom and I signed on with the Rhinebeck facility, my dad had been rushed to the hospital because he was passing many blood clots in his urine. From their apartment in Tuxedo, he was rushed to the emergency room at Good Samaritan, the local hospital.
In the hospital room with my mother, I think of all my mom's symptoms and all of the symptoms Dad was experiencing. He is in the same hospital, above us on the fifth floor.
Against this tableau, a pretty young nurse darts in and out of the hospital room. In the hallway, doctors and orderlies rush to and fro.
"Barbara." I am suddenly aware of my mother's voice, as she wearily explains she has hardly slept, although they had given her morphine. A tube running from her nose into her stomach drains the blood that had accumulated there.
A nurse appears abruptly, waving a Do Not Resuscitate order at me. “Did you get the call? Did you? You have to sign this right away! I need -- the hospital needs -- this document!”
I look at it, look up at her, and ask, “Why? Why are you telling me I must sign it?”
The night before a different nurse had called, and told me to bring in one of Mom’s meds along with a signed DNR. I put aside all thoughts of the DNR and searched for the prescription, which had run out. I reordered more.
This other nurse in the room is insistent. "You have to sign the DNR!" she said, crisply.
I read it and turn to my mother and say, “Mom, if you have an operation and you fail, which could happen during a routine operation, this says Do Not Resuscitate. Is that what you want? I don’t know if I agree with that. Do you agree with it?” She looks confused but thinks about it and a resolve sparks in her. Her expression is wan but alert: “No.”
I had her papers at home, including a living will. It specified I was the medical agent, the person to make decisions in these situations, and it further specified that Mom and Dad wanted no extraordinary means. In the abstract, when these papers are reviewed and signed, "no extraordinary means" usually represents one thing: a somewhat idealized end of life condition. Plausibly, a parent is beyond cognition, and a machine is the sole thing between that parent and the Last Things.
But here I am, in the here and now, with my mom. She had lived a long life. The plans she and dad had made in order to avoid an artificially prolonged life strike me as academic under the circumstance. She is an elderly but otherwise healthy person who has suddenly been presented with extreme pain.
I am learning that “otherwise healthy,” when dealing with the elderly, is a murky area. Mom is in chronic pain. She has stenosis of the spine, and she has a history of stomach ailments, including ulcerative colitis and diverticulitis.
Still, she and Dad are together, very much in love and eager to see their expected great grandson, my son's son, who is arriving in February. For that occasion, Mom already has purchased a little baby hat.
So, a DNR seems wrong. Contemplating this, I turn to the nurse as she reenters the room and I ask, "Is this given to everyone? I mean, do I have to sign this?” She looks confused and answers "no."
Faced with another unanticipated decision, I refused the DNR. Rightly or wrongly, I can't say.
In two days, it was over. My mother did not make it. What I thought was a bleeding ulcer was a perforated colon, and she was poisoned by the septicemia that overwhelmed her system.
As she progressively grew worse, two floors above her, my dad was ignorant of the depressing scene below. Finally, we accepted the inevitable. Mom was dying. Dad was wheeled in to her bedside for her last moments. The room was full with all of her children, her brother, and his son.
The pain in each person projected out across and between every point in the room: an osmosis of dread.
Dad held her hand and cried over and over again, "Oh, how awful; oh, how awful."
Even the nurses hurried about and muffled sobs.
I had prayed and prayed for her survival, but it was not to be. Within the week, her funeral and burial were a fait accompli.
And there was still Dad.
He's with me and my siblings and I still struggle over the idea of putting him into a home.
I am seeing a therapist who tells me that family tensions when dealing with elderly parents are not uncommon at all.
I talk to him about many things, including, more recently, my faith.
He is an atheist and fears organized religion and we have friendly debates about things like the Tea Party. To him religion is only "Tea Party." I retort with musings about what a second Great Awakening might portend for our angry, sullen, debt-ridden society.
I also I discuss these things with my daughter who offers, "Mom, Karl Rahner says we might be living purgatory now!"
Well, that's reassuring, I suppose. I haven't been able to find that direct attribution, though I did learn that Father Rahner had an emotionally trying relationship, in his later years, with a woman some call his "girlfriend." It appears he was in love with her, although there is no evidence he broke his vows. Her name was Luise Rinser. She was a writer who had once been imprisoned by the Nazis.
The journey is hard for all of us -- for some of us, it is much harder than for most. I think of another Holocaust survivor, Victor Frankl, who wrote movingly in 1946 in Man's Search for Meaning:
An active life serves the purpose of giving man the opportunity to realize values in creative work, while a passive life of enjoyment affords him the opportunity to obtain fulfillment in beauty, art, or nature. But there is also purpose in life which is almost barren of both creation and enjoyment and which admits of but one possibility of high moral behavior: namely, in man's attitude to his existence, an existence restricted by external forces. A creative life and a life of enjoyment are banned to him. But not only creativeness and enjoyment are meaningful. If there is a meaning in life at all, then there must be a meaning in suffering. Suffering is an ineradicable part of life, even as fate and death. Without suffering and death human life cannot be complete.
To say that I have lived these last two years immersed in a fountain of spirituality would be a lie. I have never experienced a period of greater spiritual dryness. Prayer has been difficult, if not at times impossible. Mass has been avoided more often then not and I am pretty sure various confessors I go to know exactly who I am and tire of my repetition.
There is this, though. Recently, on a Sunday, I raced out of the house to visit my therapist. Normally we meet at 5:30 in the evening, but this time I stopped and lingered in front of the church right around the corner from him, where there is a 5:30 Mass. I phoned him and we postponed my appointment.
I walked in just as the priest was starting his homily. The passage he alluded to, from the Gospel I had missed, was one I knew well:
After He had fed the people, Jesus made the disciples get into a boat and precede Him to the other side.... After doing so, He went up on the mountain by himself to pray.... Meanwhile the boat, already a few miles offshore, was being tossed about by the waves, for the wind was against it.
During the fourth watch of the night, He came toward them walking on the sea. When the disciples saw Him walking on the water, they were terrified....
At once Jesus spoke to them, “Take courage, it is I; do not be afraid.”
Peter said to him in reply, “Lord, if it is you, command me to come to you on the water.”
He said, “Come." Peter got out of the boat and began to walk on the water toward Jesus.
But when he saw how strong the wind was he became frightened; and, beginning to sink, he cried out, “Lord, save me!” Immediately Jesus stretched out his hand and caught Peter, and said to him, “O you of little faith, why did you doubt?”
After they got into the boat, the wind died down. Those who were in the boat did him homage, saying, “Truly, you are the Son of God” (Matthew 14:22-33).
Father proceeded to explain that when we lose faith, we sink. But we must have the courage to persevere and so not lose faith.
I don't know why I chose to walk into that Mass at that time. I just know that the passage, and the priest, and his message were just right.
I left with renewed courage. I don't know what will happen with my dad. His congestive heart failure is leading him to more frequent and acute bouts of angina. The other day I committed to having him stay half of the week in a facility five minutes from my home. I don't know if I am doing the right things. I will try to follow my conscience and be fair to my siblings who grieve, too, and who want to have their say about how best to care for the father they love.
I'd like to find new kinds of work and purpose in life, the kind that Frankl says comes from creativity.
But for now I remain in that more vague, murky place, knowing something of what Frankl meant when he talked about a restricted existence. And I hope it is helping to complete me.