We brought my father home from Mt. Sinai Hospital on Friday morning. We were glad to leave the 10th floor oncology unit with its 24-hour florescent lighting, ever-beeping noises, and sometimes inadequate nursing care. There were, however, two nurses who gave my father such empathic and attentive care that I cry just thinking about them. His doctor is also an amazing human being and doctor (and he responds quickly to text messages).
The idea of Hospice was first suggested to us by the social worker at Mt. Sinai, who was also lovely and helpful. My sister went home that night and spoke with a man in her apartment building who is a hospice worker with Visiting Nurses/Hospice. She was very moved by his description of his work and shared with me what she found out.
I learned that hospice emphasizes palliative rather than curative treatment; quality rather than quantity of life. The dying are comforted. Professional medical care is given for symptom relief. The patient and family are both included in the care plan and emotional, spiritual and practical support is offered.
We weren’t sure at first if my father should go back to his apartment in Brooklyn Heights or into a hospital hospice. Last Tuesday I visited Calvary Hospital, a hospice hospital located inside Lutheran Hospital in Sunset Park. With a large facility in the Bronx and this 25-bed unit in Brooklyn, Calvary is considered one of the best hospice hospitals around.
Still, I concluded (and my sister and stepmother agreed) that it might be better to bring him home and use Calvary’s home hospice services. A hospital/hospice was certainly a possibility in the future, but for now it would be best for him to be home with his things, his books, his huge collection of classical and jazz music, his beautiful view of the Manhattan skyline, his cat Rajah, his family and friends.
It was a bumpy ride down the FDR in the ambulance Friday morning. Talking to the EMT guy was distracting; I was nervous about how my father would feel at home. He was very disoriented and not altogether sure where we were taking him. He grimaced in pain when the van hit pot holes and bumps but overall he was in a peaceful mood.
Once home we knew we’d made the right decision. The hospital bed was already set up and made in corner of the living room and all the other furniture had been cleared away to make room for a hospital table, oxygen machines and all kinds of miscellanous supplies. The room, with its four huge windows facing the East River and the Manhattan skyline, was suffused with sunlight and fresh air. The cat, a Bengali, looked on warily but eventually jumped onto my father’s bed, which my father seemed to enjoy.
With the help of a friend, we’d hired, sight unseen, a 24-hour caregiver. From the moment I walked in the door I knew she was heaven sent. Her ability to throw herself into the situation at hand was incredible. It made all of us feel safe that she was there as we were not going to meet the Calvary health care aide, who will come four hours a day, until after the weekend.
Coming home to hospice is a lot like coming home with a newborn from the hospital. I remember the terror and exhaustion. Yikes, what do we do now? Who left us alone with this baby. We’re not ready for THIS.
In the early afternoon, a social worker and nurse from Calvary came to speak with us. Their hardcore talk about health care proxy’s, do not resuscitate forms, and realities of the dying process was hard to hear. But I felt they were knowledgeable and empathic. Most importantly, they outlined all the resources that Calvary has to offer, gave us their 24-hour nursing line and made me feel like we had a good team of people helping us (not at home but out there somewhere).
Importantly, the nurse discussed my father’s pain medications and instructed me in how to administer them.
While we spoke with the team, Hepcat talked to my dad and held his hand. They talked about his Suburu and the fender bender I was in three weeks ago; my father told him about his old blue Austin Healey and even the existence of his Living Will.
My father’s expressive speech is impaired by all of this so it is hard to understand him. But at times he is lucid and cognizant.
Friday evening was hard. Hospice requires the acceptance of what is really going on. You are looking the end of life in the face day and night. It is deeply sad and denial is virtually impossible. It is bracing and humane all at the same time.
Most of hospice care falls on the family members and/or a hired caregiver. I worried at first if we’d be able to turn him over frequently, remake the bed with him in it (and he absolutely hates to be moved) and care for him in the way he needs to be cared for.
Day two was much better even though there were plenty of difficult moments. My father slept for much of the afternoon. He asked for water frequently which I gave to him through a straw. Lydia, the caregiver made an incredible homemade soup that filled the apartment with the most delicious smells of cooking onions, carrots, cabbage, and beef.
I was able to nap while he napped. I stretched out on the living room sofa and looked at my father’s esoteric philosophy and photography books: all evidence of his brilliant and creative mind.
There is no shame in dying and he is teaching us how. It’s the most heartbreaking thing in the world to see. But necessary. Some people die fast, in an instant. For others it is more slow. Either way, it is something we must face and embrace.
We can’t run away. None of us can.
