Friday, December 21, 2012

The End of Hospice Care

There are a series of framed diplomas on one wall of my office. Tributes, mostly in Latin, punctuated only with the familiar names or universities. My father's graduation from college and law school at NYU and his admission to practice law in New York and New Jersey. Recognition from Columbia for my wife's successful completion of her studies. Undergraduate and law school degrees for me.

To the right of my desk there is a credenza. Framed and unframed photos litter the top. My daughter, no more than 7 or 8, in a multi colored race uniform, skis and body straining to make the perfect turn around the gate My son as a young boy, a head of blond hair cut with bangs that almost reach his eyes. Son and daughter's high school photos side by side. My wife with our son resting in her arms at the beach. A magazine cover with Mickey Mantle in full glory. Standing on the first tee with friends on several boys' golf trips. More Yankee memorabilia.

Near the window at the back of the office, there is a collage made by my wife, a drawing of my dad at work. Small newspaper clippings point to the unmistakeable conclusion that the subject of this piece practices real estate law.

There are no images, or references to my mom. I don't know why I never noticed that until today.

I escort the social worker into this room. We make the smallest of small talk while we wait for my sister to arrive. It is a slightly awkward conversation, in the way many are when you are discussing everything but what you intend to talk about.

There are 2 chairs across from my desk. My sister walks in and sits next to the social worker. We can begin our official conversation now. On the edge of my desk,  in front of the social worker, lies a single sheet of paper, a handwritten sentence punctuating an otherwise typed out form.

 My mom has been under hospice care for about 8 months now. One morning in April of this year she woke up and was unable to get out of bed. No matter the amount of effort of her caretaker, my mom's back pain prevented the movement needed to arise. That morning she traveled by ambulance to the emergency room.  The images taken revealed the extent of the problems. At 94, and suffering from severe dementia, my mom was not a candidate for any radical course of action. It was quickly decided that she would be medicated, as heavily as needed, to make her comfortable, for as long as she lasted.

Once back home, my mom's days were mostly spent in a stupor, a combination of drug and disease. It was at that time that hospice care commenced.

To receive this care it must first be determined by medical professionals that the patient is in a terminal state, meaning that the reasonable anticipation is that he or she has less than 6 months to live. And this seemed a logical conclusion as the effects of the drugs to dull my mom's senses and alleviate her discomfort would assuredly over a period of time lead to complications causing her demise.

Over the past 8 months, 2 hours a day, 6 days a week, an aide has arrived at my mom's apartment to assist her caretaker. No longer able to get to the bathroom, my mom's bathing and cleaning is done while she remains in bed. This task is not suited for one human being to undertake. Coupled with the dementia, my mom is now virtually, if not completely blind. Every touch comes as a surprise. When I am with her, I almost always stroke her head or have my hand on her arm or shoulder. But if the weather outside is in the least cold,  my first contact with her skin leads to her recoiling and letting out a small scream. This is multiplied many fold each time her personal hygiene is attended to. This past weekend one of her caretakers suffered bruising of her hand and arm as my mom fought against the unwanted intrusion.

Each transition from bed to wheelchair and back again is a signal for a problem. My mom's cries of " stop, you are killing me" seem to be a combination of reflexive action and actual discomfort. I am sure it is often difficult drawing the distinction . But, the unvarnished truth is that my mom is, in the context of her own universe, better than she was that day in April when she lay on the bed in the emergency room. The unrelenting anguish is no more. The worst of the medications are used only for the worst of moments.

These days, my visits with my mom are most often while she is in her wheelchair, set near the window in the living room, where the late afternoon sun provides soothing warmth. But even in the apartment, even with the rays of light bathing her, my mom is sometimes covered by a blanket and an overcoat.

When I appear at dinner time, the television in the kitchen is invariably on, often to the latest version of Family Feud. I am distracted by the show and try to see how well I can answer the questions. I am lousy at it.

My mom sits at the kitchen table, unaware of my presence when I arrive or that the family on the tv screen has just won, or lost, in their battle for the prize money. She does not know that there is food in front of her. When she eats she reminds me of a young bird or infant child. As the food comes close to her mouth, she opens up and swallows, having sensed that something was there for the taking

The social worker begins to explain to my sister and me why it was that my mom is being removed from hospice care. My sister and I understand that my mom may not be dying imminently but the decision seems so cruel. I tell of what a second pair of hands means to sustaining my mom. How impossible it is to expect one person to fully attend to her needs. How she was not only  blind but nearly deaf. It seemed wrong to take away not only the aide but the nurse who came once or twice a week to review and assess the state of my mom's well being. Or the music therapist, who on her weekly visit always seemed to find a part of my mom that was still alive. The video my son took of my mom's singing showing how she could finish the verses she was hearing and maybe sing the start of the next line or two, has moved many to tears.  I learn that the social worker was one of them.

We discuss options and possibilities. Jewish Family services, care for the blind. If my mom declines further, we can reapply and start with hospice anew. It all sounds very well meaning and sincere. But the piece of paper remains on my desk.

I stare at the form as it is handed to me. My signature is needed to confirm I am aware that the assistance my mom had been receiving is being taken away. I am now keenly aware that no images of my mom are in this room, no sign of her existence. I sign the form and hand it back to the social worker. She thanks me and tells my sister and me she will investigate all the options and get back to us as soon as she can. My mom's hospice care ends tomorrow.

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