The First Patient: A Hospice Worker’s Chronicle

By Jeanne Denney

A Hospice Worker’s first patient is often a very poignant experience. Mine was no exception. Nora was a fabulous initiator and is still my favorite patient. I decided to write about it. This story is 3x longer than a blog should be…but sometimes a good story is worth the read. Hope you find it so.

I got my first hospice patient about eight year ago. The first day I walked into her room she was sleeping. I sat in the chair across from her taking her in and scanning the environment. Woman with straight, gray unkempt hair. Broken, half-painted yellow nails. May have been a smoker. Dingy white semi-gloss paint on walls, florescent lights, pink bedspread, broken manual bed with chipped formica head and footboard. Name scrawled in marker on sticky tape over her head. Tiny bathroom with old fixtures, broken tiles and partially detached paper towel dispenser. I left after fifteen minutes.

The next time I came she was awake. “Hi Nora. I am a volunteer from Hospice. I came to talk with you for awhile. Is it ok if I visit you?” I had heard that she could be hostile. “Well, I have to talk to SOMEbody.” she said, as if it was about time I got there. She seemed to have been expecting me. “Get the book. Write this down….”

Beside Nora’s bed was a worn black composition book with scribbles in it and a pen. I was to pick it up and take dictation in it for her. “Write this down for the Journal News. Tell them that the bank was robbed last night and they had guns. They took everything….Wait….maybe this shouldn’t go to the Journal News yet…..no….keep this quiet.” she said dramatically. She had a commanding presence and a conspiratorial attitude. I wrote in the book dutifully, word for word and without argument like a scribe. There were lots of unconnected fragments connected with “…..”s.

Nora threw things across the room at the nurses, she cursed her roommate daily. She shouted incessantly to get in her bed if she was in the wheelchair. She shouted to get to the bathroom if she was in her bed. She was largely ignored and disliked because she was so difficult. Nurses and aides avoided her, the hospice social worker had long since written her and her troubled family off. Impossible. A few months before I met her she had crawled up in her bed and tried to hang herself on a cord coming from the light over her bed.

Nora had her reasons. She was in her mid-seventies, and after a lifetime of struggle with psychosis she was dying of breast cancer in a fairly dismal nursing home room. Her children did not come to see her. They had money problems, their own difficult lives and painful memories.

For some reason she tolerated me, and in the first few weeks of visits I hung on to any shard of sense I could find in the bewildering landscape of conversation. She rolled her eyes at the woman in the next bed. “Do you BELIEVE that they did this?!” “What did they do Nora?” “That they put her in the room with me.” She stopped and leaned over to me in a exaggerated whisper. “She killed my baby. How could they put a woman who killed my baby in here?….” I looked at the woman in the next bed. An old, non-descript woman. She looked like a protestant church lady sleeping with her mouth open. Fairly miserable. Nothing like a baby murderer.

I continued to take dictation and ask follow-up questions. “Write this down. ….The Mafia killed my daughter. They took out her vocal cords and put them in a little plastic bag and mailed them to me.…” Intrigue mixed with a certain number of facts that took me months to piece provisionally together. How many children did she have? Was it really true that her husband was involved in the Mafia? Wait, he had been Irish, were the Irish in the Mafia? Was her daughter alive? Did she really lose a baby? It was my introduction to the landscape of a psychotic patient. Tough first case for a new hospice volunteer.

I began to understand that Nora didn’t just have a mental illness. She did. But she also had fascinating gifts and faculties. It was a more complicated story. She seemed to be scanning the psyches of nurses, nursing home staff and the subterranean political landscape of the nursing home from her bed. She was jumbled and confused in trying to relay it to me, but it hung together a little differently than the Mafia stories. I began to get the sense that she was reading something more literally true in the landscape. “The one with the red hair and high heels came down and told them all off. She is trying to take the whole place over…. And that one with the blonde hair hates her….She wants to leave and take everyone with her.” She described people in the nursing home she could not possibly have seen from her bed.

Acting on the thread of instinct one day I took a risk. “Nora you are psychic. You have a gift”. She looked at me strangely. The alchemical transmutation of the word psychotic to psychic had an instant effect. She probably had never had this experience acknowledged as anything other than illness. She almost seemed to sit up a little more straight in her bed. “You THINK so?” “I think that you see and hear a lot that other people don’t. It isn’t easy in a place like this, is it?” It struck me what a very challenging environment this was for her to be dying in, and how vulnerable she was to the floating hostility, suffering and fear through which she was freely roaming and giving report. What could it hurt to acknowledge that?

As time went on and our relationship grew, Nora became bed bound and began to tell me more and more about her life. She spoke in fewer fragments and what she said made more and more sense in the world of factual awareness. The book started to become less important. She described the house and the town she lived in accurately. She told me about her marriage and her children and relatives (“Boy did that one have cleavage!”). She waited for me to come, holding her stories until I arrived. She called me a different name every time I came, but I knew that she knew me. I brought her an old tape player and some tapes with music: Patsy Cline and Hank Williams. I brought her mints and chocolate, which she loved. Large-print books. I contacted a daughter and asked if she could get some pictures and a few things from home to help her remember who she was and had been in this life. She brought an afghan and some pictures with her sister and actually stayed for a short visit.

One day when I visited Nora had regressed again into dark fantasy that I associated with emotions that were stronger than what she could bear. She had had a particularly bad night: “They had me gagged and tied me up all night in the basement…” “Who had you tied in the basement Nora?” “The Mafia. They just let me out at 4 a.m….They were torturing me. They may be under the bed still…look.” I looked dutifully, listened to it all and finally said as I was leaving, “You know, you need to find some better company. Why are you hanging out with people like this?” She looked at me in a kind of confused way. “Well…I mean…why don’t you call in some better friends?”

Nora was Catholic. And she was angry at the church and with God. We had been able to talk about that. But an elderly, straight-talking Dominican sister had also started to visit her. Between her visits and mine she had softened around the idea of divine grace. What it meant to call in some better friends was not so clear, but that she might need to ask for spiritual help when she went into these dark waters was something that she could begin to hang on to. Nora understood prayer. I suggested that she pray for help when she got scared. She must have been willing to entertain the idea.

A few days later when I came to see Nora she had been waiting for me. I had barely gotten into the room when she said “You won’t BELIEVE who was here last night.” “Who was here Nora?” “St. Michael….Do you believe that….And you won’t believe what he told me.” “Well….what did he tell you?” “He said ‘Take everything in your mind and throw it away just like you are pushing everything off of this nightstand.’ Do you believe that?”

I did believe it. Wise advice for the dying. Nora stayed in a state of disbelief at her strong experience of St. Michael for some time. She was confused because from her point of view this was the wrong saint. It was supposed to have been St. Christopher. We mused over that more than once.”But it is the wrong saint…” “But that is perfect Nora.” “Why?” “Because St. Michael is a warrior saint, and you are a warrior.” “Really?! You think so?” She was dumbstruck by the idea that a saint would identify her as one of her own, or maybe it was that I saw this as logical. Clearly the woman I met a few months before was a warrior raging against insanity, if not her own then that of the place she had been deposited, the insanity of abandonment or illness, or the insanity of the world, or some other insanity that could not be accounted for. It was a clear turning point.

One night after I put the kids to bed I went to see Nora on a vague impulse. She saw me in the hall, gasped, looked as if she was seeing a ghost and began to shout “Are you alive?!! You are alive!! You are alive!! You are alive!! Oh my God, you haven’t died!” I came into the room to see her half out of her gown and with a wild, disheveled look. She took my hand, kissed it repeatedly and continued. “Oh my God, you are alive….I thought you had died.” Sobbing. Joy tears. Hand kissing. Nora was dramatic, but it was still a sincerely intimate moment. I am not sure what I represented for her at that moment. It would appear that I had become a living embodiment of heart for her, and she was terrified that this heart or some last connection to hope had died. Still, it was strange to hear that someone cared so deeply for my existence and my death, even if it was a dying psychotic patient who didn’t really know my name. She cried in disbelief, at the same time clutching her heart. “I have been having chest pains all night. Oh my god, I thought you had died.”

What happened that night is not too clear, whether she was having an angina attack or some other large crisis of the heart. Maybe it didn’t matter. I reported it to the nurses who called the doctor. The hospice doctor came, listened to her heart without comment, looked quizzically at me and said he thought she was ok. She settled. I stroked her head until she went into an exhausted sleep. Then I left.

St. Michael continued to be seen by Nora consistently to her death as her behavior continued to normalize. That is, of course, if you considered seeing and talking to saints to be normal. To the physician who prescribed her medicine this was likely just another delusion, but to me it was different. Nora began to face and grieve the truth of her children’s abandonment as part of her return to presence. She made friends with her new roommate. They talked. She almost remembered people’s names, or close enough. The nurses and aids began to like her and would spend time painting her nails. More people in hospice began to interact with her. She became a hospice success story. “Isn’t it great that we finally got her medication adjusted correctly?” they said at team meeting. A few friends visited. She was not uncommonly joyful and full of newfound longing for life. “I just want to take a sled and go down the hills with the kids. I want to do everything! I want to make love and eat chocolate!” I kept bringing chocolate.

It was a morning in March when I got a call from the volunteer coordinator that something upsetting had happened to Nora. She had had a stroke and been unconscious in her bed for some time before she was found. She was immediately taken to the hospital. She never regained consciousness.

It was a stroke of sweet synchronicity that the day Nora went to the hospital a friend of mine made a spontaneous gift to me of a CD of Coleman Barks reading Rumi. It was a day or so before I listened to it. She had died by then. When I came to these lines while driving the car, I sobbed:

“…..What use now the crown?
You have become the sun…..”

It was an impersonal sob. Her death was much like a birth, a liberation, a culmination, a success, a triumph, a long process, a victory. Something I had lived with her through and, through her, some crazy transformation of my own. Maybe I was feeling something like she did the night I walked in on her possible heart attack. “You are alive! You are alive! Oh, thank God you are alive!” Thank God you are through it. Though what the “it” was, was not clear.
______________________________________________________________________

Of course I went to the wake. Her oldest daughter met me in a business suit and proudly showed me her funerary display. Nora’s casket looked strangely alone amid the large floral sprays with the word “Mother” sprawled in script across them. Perhaps she was now, finally, manageable for them, quiet, contained and at a safe distance. This was complicated grief. There were probably 15 or 20 people there talking casually, laughing. No one looked particularly bereaved.

You left this humiliating shelf,
This disorienting desert
Where we’re given wrong directions…..

I reflected on the fact it had probably been difficult for her daughters to get this together in the few days since Nora died. It couldn’t have been easy to have a psychotic mother. I sat and prayed for her and for them.

I have heard that near the end
You were eyes looking at soul.
No looking now.
You live inside the soul.

I had the vague sense of Nora’s outrage that they put the effort in now after forgetting about her. It felt like she was jumping around in my head shouting: “Can you believe it? Can you believe it? And after all this time that they never even sent me a card or brought me a flower? NOW they are worried about what I look like? NOW they show up?” Or maybe this image was one of my own projections. I talked with it just the same either way. “It is ok Nora. It is ok.” I told her. “They are doing what they know how do for you.”

I wondered what they were going to do with the black composition notebook when they cleaned out her room. I wondered if they, like the nursing home staff, would think that the person who transcribed the paranoid fragments onto paper in an unfamiliar hand was deranged. I knelt and prayed for her as I looked at her face with the makeup and her hair done.

You’re the strange autumn rose
That led the winter wind in
By withering.

I thought about how much she would have enjoyed someone doing her hair and makeup. She looked different. Like someone who had a life I didn’t know. Wherever she was, I knew we were friends. And I was happy for her.

No bother of talking.
Flowing silence and sweet sleep
Beside the Friend

Jeanne Denney is a therapist and hospice worker in Rockland County, NY and the author of The Effects of Compassionate Presence on the Dying. She directs the Rockland Institute for Mind/Body Education and Kairos, an organization for helping professionals. (See http://www.rocklandmindbody.com)

If you are interested in subscribing to this blog, contributing to the Kairos Network or participating in a process of “Planning on Dying” contact jeannedenney@gmail.com.