So many months have passed and still a dream jolts me from a deep sleep: I enter an old church, the kind that for many years has been a receptacle for people’s tears, longings, and prayers. Past the church doors lies a courtyard, with beautiful trees, flowers, and a fountain. It is lush and warm and reminds me of my ancestors’ home in Spain. I am looking for my parents among the crowds gathered in the courtyard, but I cannot find them. I stop walking and look down at the outstretched palms of my hands, examining, staring closely at my fingertips as if seeing them for the first time. I begin to feel a pain that becomes so great I can feel it all the way to the tips of my fingers. Then I jolt awake.
In the most exquisite way, my fingertips carry the weight of my loss. Others may not readily see or recognize it, but it remains as alive as ever. When I was a little girl, my mother’s soft fleshy arms felt so comfortable that I would often rest against her and fall asleep. She was better than any pillow. My father’s tight hugs made me feel secure and loved. What struck me most when I learned that they had died was that I would never feel the tenderness and warmth of their skin. I miss their touch all the way to the ends of my fingers.
In my dream, my hands seem disconnected from my body, just as my loss seems not yet fully integrated into my being. The longing I feel in my outstretched arms continues to this day. Beneath the façade of looking well, my skin continues to feel what I so often miss, and will never have again.
Neglecting the Patient’s and Caregivers’ Needs
I write this story as a daughter who cared for her mother, who was diagnosed with Parkinson’s disease in 1988, and her father through times of great sorrow and anguish. I also share my story as a social worker and an educator of graduate social work students. Throughout my experience of caregiving for both of my parents, I became acutely aware of how much health care professionals can neglect family caregivers. In light of a devastating chronic illness, it seemed that it became easier for these professionals to narrow their focus on the neurological symptoms of my mother’s disease and look past the complex set of emotions she and her family were experiencing. In their myopia they lost sight of her as a whole person.
I do not think that these professionals—physicians, physical therapists, social workers, and others—failed to notice our feelings and multiple needs. They could sense my parents’ palpable emotions—loneliness, loss of independence, loss of privacy, sadness, fear, anger, and embarrassment. At the times when I raised these issues I did not find unsympathetic listeners. Rather I think that they too, paralleling our own feelings, felt helpless in light of such enormous complications of body, mind, and spirit. For her symptoms they felt they could prescribe a medication or some other treatment to alleviate her suffering, and they compartmentalized our feelings and needs as a way of trying to keep them under control.
These professionals underestimated their healing power. They did not seem to understand that listening to caregivers’ struggles and feelings can provide much needed relief. They could have helped us tremendously in other simple ways. They could have helped us anticipate what would happen as my mother’s illness progressed, what the symptoms would be, and what her day-to-day needs would be. Knowing how to respond would have helped alleviate some of the enormous stress of the unknown. They could have helped by pointing out what services existed, and what options we had at each stage of her illness. These gestures perhaps may seem too simple in light of such enormous needs and suffering, but not to inquire, not to delve beyond the neurological symptoms, not to help anticipate the course of my mother slowly losing her abilities that was worse.
No one knew better than my mother and my father that there was no cure. We did not expect miracles. Rather I as a daughter was left to my own resources as a professional social worker to seek out help, services, and advice with the little energy I often had. We could have received better care—the kind that does not compartmentalize a patient’s body and mind while also ignoring the caregivers.
An Acute Illness, Then a Chronic One
Our story in this country begins when we immigrated from Cuba in 1961. As is the case with most Cuban refugees, we came with no money, as Fidel Castro made sure that anyone who left would not have much to bring with them. We had just the clothes on our backs. I was seven years old and was allowed to bring one doll out of Cuba, but not before the military at the Cuban airport took off the doll’s head to make sure my parents were not hiding jewelry or money. My older brother at age 11 came to the United States a year earlier because Castro was threatening to remove children from their families and send them away to his own schools. My parents, faced with many losses of their family, homeland, language, and culture showed a resiliency and courage that many immigrants find within themselves. They threw themselves into work with fierce determination to make it in this new home. My mother went to work in a factory, and my father did what he knew best—he went into the printing business, working for a Spanish language newspaper.
Like most immigrants, they struggled and sweated and toiled long, hard hours for the right of freedom and the dream of education for their children. We faced those first few years with fortitude but with poverty as well. We were joined by two other “relatives,” who I referred to as my “aunt” and “grandmother,” although they were not blood relations. It was a way to economize and survive life in New York. This arrangement of the six of us living in a small one-bedroom apartment for over two years made my parents even more determined to make it in this country. Through 30 years they prospered in many ways, and eventually opened their own printing business and party goods store.
Within months of their planned retirement my father suffered a sudden, major heart attack, and underwent quadruple bypass surgery. This threw my family and me into a life-and-death emergency, and we pooled our resources to get the best care for my father. After his surgery, he became a model patient. With the same fierce determination he had always shown, he lost excess weight, started to exercise daily, gave up rice and beans, and attended nutrition classes. He would lecture me about nutrition, a role reversal that I found fascinating. He took his perseverance and his work ethic and channeled it into his health, because he wanted to enjoy the rest of his life, to travel with my mother as much as they could, and to fully enjoy being grandparents to my brother’s three children.
In the midst of his recovery, my mother was diagnosed with Parkinson’s disease.
Parkinson’s is a neurological disease, one of many movement disorders, which slowly progresses as the brain’s nerve cells degenerate, causing the body to lose its capacity for muscular control. This not only affects walking, balance, and large and small muscle movements, but it can also affect bowel movement, urination, and swallowing, among other functions. While most people retain normal intellect, the illness can lead to dementia. About one in every 250 people over age 40 and about one in every 100 people over age 65 will develop Parkinson’s. Despite years of research there is no cure. Numerous medications are available, but they all have side effects, which can be quite severe, and as the disease progresses the medications lose their effectiveness.1
My mother, a strong, healthy woman who had been full of life and known for her kindness and her embrace of a positive spirit, was first diagnosed at age 62. Since she never developed one of the telltale symptoms, a tremor, we later realized that she probably had the illness sometime before the actual diagnosis. At first, the medications the doctors prescribed seemed to greatly improve her ability to move about more easily. Slowly, however, the medications lost some of their effectiveness and my mother’s disease began to encroach upon her. As she moved with greater hesitancy for fear of falling, a common occurrence, her world began to shrink. She began to sit and watch television and read more often, and started doing less around the house. She stayed at home more because her muscles might give out on her and she would suddenly have to sit down. Her bladder became affected, so she took increasingly longer in the bathroom because of difficulty urinating. All of these problems made it more complicated to go out and do the simplest of things.
As is typical with the medications available for Parkinson’s, the side effects increase as the disease progresses. My mother, who had always placed high importance on proper public demeanor, began to suffer from dyskenesias (involuntary bodily movements). The dyskensias, which could last several hours, caused her to twitch and shake and twist her head. She would experience nausea and eventually vomit, all publicly displayed for people’s stares. She would fall off chairs in public, and as we would struggle to pick her up, a mass of “dead weight,” I feared the strain would kill my father. She would call herself “un payaso” (“a clown”) and try to laugh about it, which only made me want to cry for her, for my father who was so sad, and for myself who felt so helpless.
Until the summer of 1997, when my mother was 71 years old, nine years after the initial diagnosis, my parents managed in their own home. They prized independent living. My mother, who was so attached to her home, did not want any changes in her daily routine. But in September 1997, she deteriorated quite rapidly and began to fall frequently. She became practically wheelchair-bound. We placed her in a nursing home to give her intense rehabilitation following a particularly bad fall and to give my father respite. We also wondered if a good nursing home was a viable alternative at this point.
I, as a social worker and a daughter, had done my homework and thoroughly researched available nursing homes. She went to one that was quite new, modern, clean, bright, and made attempts to be a cheery place. The state reports rated it quite high. But nothing prepared us for the daily experience of a nursing home. It was Halloween time when she was first admitted, so the appropriate ghosts and goblins were displayed in their bright orange and black colors. At first I walked in a daze in the corridors thinking how ironic it was that my parents’ party goods store used to sell these very same ornaments. For all the cheeriness that the Halloween goblins tried to provide as they twirled around hanging from the ceiling, what really seeped in was the sadness and loneliness of the patients and their families, even though the staff made every attempt to make it seem like a normal, nice place to live. They had the usual activities of singing, arts and crafts, and even dancing. But the empty, sad stares of the patients too far gone in their minds to know what happy tune might be playing became unbearable.
The nursing home was a nightmare.
Outside of her safe and familiar home environment, my mother sank into depression, being surrounded by much older patients with advanced Alzheimer’s disease and other dementias. One of the staff psychiatrists evaluated my mother to see if medication could alleviate her depression. The psychiatrist, who did not bother to call her physician or her family, happened to arrive at a time when my mother was having multiple dyskenesias. Seemingly mistaking the symptoms, the doctor prescribed anti-anxiety medication, which only worsened my mother’s depression. Once her neurologist took her off the anti-anxiety pills, I called the psychiatrist to have her explain why she prescribed the medication and to see if she had bothered to thoroughly assess my mother’s situation or even read her chart before giving her more pills. The psychiatrist, obviously greatly angered by my questioning her judgment, simply said I was not a physician and therefore she could not explain her medical reasoning to me. I realized how little control we had over my mother’s care in the nursing home, and wondered about the feasibility of this plan.
My father reacted to placing my mother in a nursing home and her growing depression not by finding respite, but rather by spending endless hours by my mother’s side trying to take care of her, cheer her up, and provide companionship. In anguish and loneliness, at night he would sob to me on the phone. I would then sob to my husband. My father, who had always been strong, who used to help everyone in the family, who I had never seen cry, now felt unspeakable losses, and I could find little consolation to offer him.
On a Sunday late in the fall I went to the nursing home and found my father waiting outside the cafeteria for my mother to finish lunch. He was sitting in the bright, modern waiting room quietly crying about my mother’s condition. My mother came out from the lunchroom in her wheelchair and started to cry. She was just too sad. She missed her home too much. She missed her life. Then I started to cry because I could not find words to console them. I too was beyond words. It was then that we realized this arrangement made no sense. We could not spend the rest of our lives crying in a nursing home. My mother was not better, and my father had gotten no respite. So we took my mother home, with the knowledge that we would hire all the aides that were needed to care for her.
Bringing my mother home meant having to move my parents away from their beloved apartment and the small community in New Jersey where they had lived for over 20 years. They had a small one-bedroom apartment in a two-story building they owned, which was directly above the business they once owned. This apartment was now unsuitable, as it had a long flight of stairs and was too small to house the several live-in aides we would need. After considering various options, we settled on a two-bedroom, two-bathroom apartment in a building where several family members lived. It was larger, wheelchair-accessible, and closer to her doctors, which was important because transporting her had become increasingly difficult. The other family members nearby could provide ongoing support.
While the move was rationally thought through, it was a great loss, particularly for my father. After my parents retired my father had stayed very active in the community—he had a network of friends, business owners, and associations he belonged to—which gave him a sense of belonging, connection, and purpose beyond his role as a caregiver. Moving from that community touched on his cumulative feelings of being uprooted, which stemmed back to Cuba. For the first time in their marriage my parents faced a paradoxical situation. What was best for my father—`to stay in his apartment, in his community—was not best for my mother.
As I went through my mother’s closet to pack her clothes it was like reviewing her life. I found a pocketbook she brought with her from Cuba, the pretty dress she wore to my brother’s wedding, all the dresses my father bought her at holiday times, and her pretty, soft, feminine nightgowns. She would never wear these clothes again. Her outerwear had been reduced to easy-to-pull-up pants, which would fit over diapers, and lace-up shoes, which would not fall off during bouts of dyskenesias. There would be little use for a pocketbook since my mother was confined to a wheelchair and could not do much for herself any more.
I wanted my mother to help me, by telling me what I should pack and move, and what I should give away. It was my futile attempt to help her be active and involved. She helped some, until sadness overwhelmed her and she went to another room, leaving the decisions to me. That evening the mourning I felt for my mother struck me particularly deeply. I realized I was losing my mother as I knew her and that I would never have her back again.
That night the lectures I had given to my social work students about “ambiguous loss” became profoundly real to me. I felt conflicted about being in such deep mourning despite the fact that my mother was still alive. I felt guilty for grieving, for I felt I should be thankful that she was still with us. However, the essence of my mother and our relationship was gone. Not only had our roles been reversed, but she was slowly slipping away before my eyes. She was less spontaneous with conversations and could not sustain them for long. All the while she was fully aware of what was happening to her. As Pauline Boss states in her book, Ambiguous Loss: Learning to Live with Unresolved Grief, this is an “unclear loss.” She describes how people in my mother’s state are “there” yet “not there,” physically present but psychologically absent. Such losses, she says, often lead families to experience “frozen grief.”2 Another author describes this experience as an “ongoing funeral.”3 I felt like I was always burying aspects of my mother and our relationship while she was still alive and I was still taking care of her.
During this period I finally convinced my father to seek help. He was drowning in his depression. My parents had always shared a close relationship and had been each other’s confidantes and best friends. But the progression of my mother’s illness made it impossible for her to help my father in decision making, and she could no longer listen to his many stories because of growing dementia. My father felt he was losing his life partner. He told me that he had slowly accepted her physical limitations but what he missed most about her was her personality. “Se está apagando,” he would say. (“She is fading.”)
He went to see a psychiatrist, who I had first talked to and given some brief history. My father needed medication for his depressive signs (lack of sleep, appetite, loss of interest in many things) but more than anything he needed to be listened to. In conjunction with the medication his psychiatrist provided, I wanted my father to see a psychotherapist I had found, who I thought would be good for him, and who could listen to and help him express his sadness and loss. The anti-depressant did relieve some of the outward symptoms, but when the psychiatrist did not return his calls, or would see him for only ten minutes, my father decided not to seek further help. He later promised me he would go with me to see the therapist. We never made it to that visit.
Bringing on the End
My parents’ wedding picture, a simple photograph, conveys the strong bond of love and care between them. My mother, with a shy smile in her simple but beautiful dress at the age of 18, looks youthful but mature beyond her years. She had already endured the deaths of her two parents and two brothers and had spent too much of her youth in hospitals caring for those she loved. My father, 23, so young and handsome in his suit, stands by her side, right behind her, as if guarding her. Nothing about the photograph indicates a wedding: she is not wearing a bridal gown; there are no flowers; there is no cake. They had none of these luxuries when they married. What they had was a great love and a deep commitment to each other, which sustained them through 52 years of marriage.
For my parents’ 40th wedding anniversary we had this photograph refinished and placed in an antique frame, and gave it as a gift at the surprise party we held for them. This picture, as it stood in the middle of their two closed caskets at their funeral, reminded us of the strong love and care that brought them together and kept them together at the moment of their chosen death. People at the funeral commented on how right it seemed that their caskets were together, side-by-side, as they themselves had always been in their life.
It was the strong bond and caring that made my father, in a careful, deliberate way, kill my mother and himself, although it is clear that she agreed to it. That fall Sunday afternoon she had been alert and strong enough to understand what he was going to do and did not try to stop him. He had acquired a gun for this purpose, covered her face with a towel, and shot her three times. The medical examiner at the morgue, who I went to personally see two months after their death, used words like “caring” and “compassion” to describe the manner in which he killed her, words that don’t usually belong to such a violent act.
After shooting her, he positioned himself by the window of their 11th floor apartment, sat on the ledge, and shot himself once inside the mouth, the shot propelling his 11-story fall. He landed underneath some bushes, away from nearby parked cars. He chose the particular window well, for if he used any other his body would have landed on someone’s car or the parking lot driveway. My father was a man of details, a man who always helped others and never wanted to be a burden. He even carefully orchestrated how to get the two aides out of the apartment during the few precious minutes he needed. He did not want to make it seem that anyone else had been an accomplice.
It is much too easy to judge such actions from a comfortable distance, draw conclusions about motives, and perhaps coat words with professional language. Having read the 20 letters he left behind, the ending seems an act of love, an act of courage, an act of care.
In the book, Facing the Extreme: Moral Life in the Concentration Camps, Tzvetan Todorov chronicles the lives of people in concentration camps whose caring for one another often led them to choose to die together. He describes a mother, clutching her five-month-old baby who was going to be sent to the gas chamber, who chooses to die with him. He writes about a Dutch woman, whose husband was selected to die, who takes his arm and walks with him to their deaths. A man kills his brother, he notes, to prevent his going to the gas chamber. As Todorov states, these people “preferred to take control of their destiny, rather than submit to it passively.” In the Warsaw ghetto, he writes, it was “sometimes necessary to kill people precisely because one cared about them.”4
My father’s letters, which he had been writing for several months, provide a window into his thinking and emotions. He tells of the immense sadness he felt, watching my mother slowly deteriorate and suffer through endless bouts of twitching and shaking, with the gradual loss of the ability to swallow. My mother, who had always braved difficulties with fortitude and faith in God, would tell us that she was fine, but her eyes betrayed her unspeakable sadness. The last day I saw her, two days before their death, I had taken her to the doctor. As I hugged her, kissed her, and told her how much I loved her (for there was nothing else I felt I could offer), she looked me straight in the eye and said she loved me and to not worry about her. “I’ll be okay,” she said. She denied that she felt sad when I asked her, but after her death one of the aides told me that in the last two months she often said that she wanted to die, that she was tired of suffering. My mother had been one of the strong forces in my family; she was not someone who wanted to burden others with her needs and her grief.
My father had been planning this act for over a year which, while recognizing how violent it was, he felt was the only expedient means accessible to him. He would have chosen a quieter way, a physician-assisted suicide, perhaps, but he would have had to include me in the planning as he relied on me for their access to medical care. Once he knew my mother was not a candidate for the available surgeries that might alleviate some of the symptoms, he felt he needed to help relieve her of her misery. He and I often talked about her probable future—a slow deterioration resulting in the loss of her physical functions, all the while she would be sufficiently alert to know what was happening to her. He explained to me in our multiple daily talks and in the letters that he left behind that he was afraid the stress would bring on another heart attack, perhaps this time fatal. He worried about how my mother would fare in his absence, for even if they no longer slept in the same room, the evening aide told me that my mother endlessly called out my father’s name at night when she was in pain or emotional distress.
The last day I spent with my parents remains seared in my mind, for it captures so many of the struggles we had all endured. The drive back to their apartment after the doctor’s visit feels as vivid as if it happened yesterday. It was an uncommonly hot and humid fall day, and at noontime we got stuck in one of those maddening Manhattan traffic jams, which lasted over an hour. Sitting in the front seat of the car, my mother began a bout of dyskinesia, and her movements became more spastic than usual. Unable to control her muscles she grabbed the car’s steering wheel and transmission stick. She slowly slid down the seat and wound up with her head and torso on the seat cushion. Her legs pushed up into the air, crushing against the windshield while her blouse bunched up at her neck so that her brassiere was exposed for everyone at the many traffic lights we stopped to gawk at. As I tried to get her tight grip off the wheel, the aide sitting in the back tried to pull her up and hold her so she wouldn’t slip again—a futile task. I tried to calm down my father who was sitting in the back, agitated, feeling helpless. I have looked back at this endless car ride many times after my parents’ death and realized that if my father needed one more maddening moment in which to feel utterly helpless and hopeless, this car ride probably solidified his conviction to end their suffering. This was exactly 48 hours before he ended their lives.
I left my mother that day in her special electric chair at home with her legs dangling up in the air, her face showing inexpressible grief. In contrast, as my father walked me to my car, he had a serene smile on his face, which I thought was odd on such a despairing day. As I drove away, by impulse I stopped to give him some cherry flavored Life Savers I had in my pocket for my mother’s cough. It was my last act of love, and my last moment in their life. I so wanted to turn all that misery around and make it better for them. All I could do was give my mother my Life Savers.
It was also in an unbearable car ride 48 hours later that I discovered what had happened to my parents. That fateful Sunday I had gone shopping for my mother, who needed additional supplies for her growing incontinence. As I drove back home with my friend, I called my husband to tell him we were running late. When my cousin answered our house phone I knew something was wrong. My husband got on the line and told me my mother “is no longer with us.” He didn’t want to tell me further details, afraid I would not be able to calmly negotiate the long drive back home. Shaken and stunned, I got off the phone and told my friend that my mother had died. As I sat and thought about it, I shared with her that somehow I knew my father had killed her and then killed himself. I even knew it was with a gun. My father had never owned a gun, was against guns, and yet knowing his determination in life I knew this would have been his way, for it was quick and sure. There was no reason for my mother to die—she was the picture of health, except for the Parkinson’s. My father had ended their suffering as a sign of his courage and love. I too got stuck in maddening traffic that night for two hours, luckily with a dear friend, who helped me begin mourning what had just occurred.
Siempre en mi Corazón
At their funeral services I, along with my brother, husband, cousins, and nephew, formed the group of 12 pallbearers. I could not bear having paid strangers carry my parents’ bodies to their final destinations. I had carried my mother’s body in life, when she could no longer hold herself up. I had carried, as much as I could, my father’s sadness. I wanted to carry them in their death.
On their gravestones, we had the words “Siempre en mi Corazón” (“Always in my Heart”) engraved. This was my mother’s favorite song. They had danced to it at their 40th anniversary and we played it at their funeral. It begins to capture the unity, love, and care they formed early in life which carried them together until their death.
I want to acknowledge that I could not have cared for my parents if it had not been for the tremendous support I received from my dear friends. I want to particularly thank my husband Ernesto Loperena, who held me through these difficult years, cried with me, helped me to carry my mother numerous times, and has always been there with his understanding and love. Thank you also to Pat Hoy for helping me to free up my voice and find the way to write this story.
Excerpted from: Always on Call: When Illness Turns Families into Caregivers, Carol Levine, editor (New York: United Hospital Fund, 2000). Reprinted with permission. For more information, visit the United Hospital Fund website at http://www.uhfnyc.org/
Endnotes
1 Merck Research Laboratories. 1997. The Merck manual of medical information. Whitehouse Station, New Jersey.
2 Boss P. 1999. Ambiguous loss: Learning to live with unresolved grief. Cambridge: Harvard University Press.
3 Kapust L. 1982, Summer. Living with dementia: The ongoing funeral. Social Work in Health Care 7(4):79-91.
4 Todorov T. 1996. Facing the extreme: Moral life in the concentration camps. New York: Henry Holt & Co.
