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Archive for January, 2010

“Go away…asshole.” These were the first words I heard from Norma Jean, about 3 minutes after we met. She wasn’t too happy about my attempt to lift her foot in order to stretch her leg. And so I stepped back, waited a few seconds, then sat down next to her and offered to put some cream on her hand. That she could accept.

Her husband had hired me because a few months earlier she had simply stopped walking. Now she was in a wheelchair, newly in a nursing home, her whole life changed. At that first session her husband told me he was very concerned about her walking. He asked me to massage her legs.

I got the sense that he was hoping that the massage would help her walk again. Massage is good for many things, but it can’t make an Alzheimer’s patient remember how her legs are supposed to carry her from place to place. Because that’s what I suspected was happening: she had simply forgotten how to walk. Or had lost the will to try.

At the time, Norma Jean was in a stage of Alzheimer’s that, in some ways, seems to be the worst stage of the disease. The person knows there is something dramatically wrong with her, but cannot understand what it is. This causes a great deal of anxiety and often leads to hostility.

She would often repeat the phrase “I’m sick” several times during each session. If she felt that no one was listening, she would say it louder and louder. Her aide, her husband and I would try to validate her feelings and explain that we were there to help her. Most of the time our words provided little comfort.

During this stage of her illness, Norma Jean still showed flashes of creativity and a sense of humor. When she wasn’t feeling agitated she would often laugh and try to joke around. One day, after a round of repeating “I’m sick” about twenty times, she sighed and exclaimed, “I wish I was Normal Jean.”

As her disease progressed, she stopped saying “I’m sick.” She continued to verbalize her thoughts, memories and experiences in ways that were usually incomprehensible to me. Sometimes she would ask for constant validation, asking “Do you like me?” over and over again. It was during that stage of her illness that I had the most fun with her. As I assured her over and over again that not only did I like her, but I loved her, she would frequently say those words to me. Even if someone has no idea who you are, it still feels wonderful to have her look into your eyes, smile, and exclaim, “I love you!”

It is three years since I first started working with Norma Jean, and although she is now “sicker” according to objective measurements of disease progression, this disease process has taken away her ability to know that something is wrong with her.

During our sessions she says very little and her affect is tranquil, untroubled. Sometimes she sleeps the entire time; other times she opens her eyes and smiles at me, sometimes she even laughs. Every once in awhile I still get to hear “I love you.” Although the farther away she goes, the harder it is for those who love her, at least in her experience the progression of the disease has brought her some peace.

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I would be the first person to admit that it is very strange to work at a hospice. To spend all day in that kind of high-intensity environment, full of emotions, tragedy, and drama, and then to go home and walk the dog and cook dinner can feel surreal.

Over the course of the workday I still have to perform the routine tasks that anyone does: checking my email, managing my calendar and patient load, filling out paperwork, and returning phone calls. There are also personal things I need to do over the course of the day like anyone else: call my husband, have a cup of tea, go to the bathroom.

In the hospice environment these mundane realities sometimes compete with my primary objective, which is to provide massage therapy to patients and their families.

One day I had four patients to see, and there were a lot of visitors on the unit. One family crammed more than ten people into the room of a patient who wasn’t even conscious, and they kept coming and going all day long. Although I try to make sure that family members also have the chance to get massage, if I tried to see that entire family I wouldn’t have time for anyone else. How would I decide which members of this family would get massage?

As a workflow management issue this would be critical, and initially I chose to avoid the issue. I saw a woman from a different family standing outside her father’s door, clearly shaken up. I offered her a massage and brought her into our meditation room. Lo and behold, a woman from the giant family was sitting in the room, so I promised her the next massage, hoping the floodgates were not about to open. Experience has shown me that, once I start providing massage for one member of a large family, the momentum builds and it can be very difficult to tear myself away.

I gave the first woman, D, her massage. When I finished, the other woman, F, was engaged in conversation with three of her family members. I was starting to get hungry and thirsty, so I made myself a cup of tea and began to fantasize about the muffin I had in my bag. Suddenly F was ready, so I put the tea on the table and got to work. When we finished, she said she thought her sister would like a massage. Thinking of my muffin, I said, “I need to take a five-minute break. Why don’t you get your sister and bring her here then?” She agreed and I snuck off to the staff lounge.

At an office job, taking a snack break isn’t such a big deal. At this job, it feels a little bit selfish: how could I be thinking of a muffin and tea while these people are suffering so much? But I can, and I do, because at the end of the day it’s still a day at work and I am just a worker who needs to take breaks.

As the day progressed, I only saw a few other members of that family. But then a woman from another family, the sister of a 58-year-old patient who I knew was very close to dying, asked for massage for her niece, nephew, and brother-in-law. I agreed, but started worrying about how late it was getting and asking myself: when was I going to be able to have lunch?

L, the patient’s husband, went first. He had never had a massage before, and I was genuinely glad to be able to help his neck stop hurting. Her son, B, came next. I had seen him by his mother’s bedside and he told me that he was feeling numb (emotionally, not physically). The massage seemed to comfort him. His sister, K, the patient’s daughter, came into my room and sat down in the massage chair. It was after 1 p.m. I had just started massaging her shoulders when a knock sounded at the door. I opened it up and L. was there. “I think there’s a problem,” he said. K went hurrying down the hall.

I went to the nurses’ station to get some more information. “Did that patient just die?” I asked. “Yes,” I was told. Okay then, I thought, I can go have lunch now.

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