Phone to my ear, I tread the floor from the couch to the dining table, mindlessly placing each foot heel-to-toe in the 12-inch parquet tiles as though on a balance beam. Dr. Chang gently explained the hospice intake process to me. As a palliative care doctor, she has prepared countless families for the transition of their loved ones to hospice.
What did you say?
Usually very organized and focused, I found it hard to understand what Dr. Chang was saying to me. I turned at the table and headed back toward the couch, repeating her statements back to her. Her words hit me as a jumbled mess with each sentence floating separately in my mind, untethered from the statements that came before or after. I wondered if this is the same confusion dementia patients feel when multiple ideas are presented in a single sitting.
“The provider you have selected, LifeCare Hospice, will arrange a time to visit Robert for an assessment.”
“They will determine if Robert meets the qualifications for hospice care. I have no doubt that he will.”
“Once admitted to hospice I will no longer be Robert’s primary care physician.”
“Robert’s care will be coordinated by the hospice doctor to whom he is assigned.”
“I will still be available to you and Robert for consultations, but Robert’s hospice doctor will be leading his care team.”
What I understood was “You are placing Robert on a fast-moving train. You will have no control over where the train is going.”
Gobbledygook
When we are emotionally unprepared to hear what is being said, our thought process fragments. We can’t seem to understand, even if what is being communicated is straightforward and clear.
The US Department of Health and Human Services defines hospice as “a comprehensive, holistic program of care and support for terminally ill patients and their families.” Hospice delivers palliative care for patients with six months or less to live.
Scheduling Robert’s hospice assessment provided some structure to my disjointed days. I function better with specific things to accomplish rather than floating in the ephemera of the undefined. Still, I had a hard time organizing myself. How do I prepare my mind and body for the last six months of my husband’s life? I can’t. I felt like I was floating beside myself, observing, unable to land.
Best intentions
My daughter, Maddie, and I had decided to hold off telling my son, Jackson, about their father’s referral to hospice until he arrived home for a visit. We didn’t want to derail him in the middle of semester finals at university. This news could wait. He would be home soon.
Three days later, I picked Jackson up at San Francisco International Airport (SFO). While he ate the burrito I’d brought him for the trip home, I shared the news of his father’s health and my decision to arrange for hospice rather than put Robert through the trauma of an endoscopy, a hospital stay, and any prescribed treatment protocols.
Remember this
What a bizarre way to learn of your father’s worsening illness and impending death: looking straight ahead at the rush of cars on a four-lane stretch of freeway while eating a burrito from your favorite taqueria. Jackson will remember this time differently than I will. Will a landmark or sensory aura somewhere between SFO and Sonoma County forever trigger a memory of that car ride for him? The sign on the hill in South San Francisco? The monolithic Sukyo Mahikari building that towers over the intersection when we hit the city on 19th Avenue? The smell of the car?
The next day Jackson, Maddie, and I met with our hospice intake nurse, Aditi Chandra, in the dining room of Gardenia Place. It was a brilliant Sunday morning, a mocking contrast to the heaviness of the day. We sat around the table, quietly answering Nurse Chandra’s questions.
Fatima (the charge nurse at Gardenia Place) shared her observations of Robert’s recent decline. She shared nothing I hadn’t already heard, but I looked at her curiously, again as though standing outside myself hearing the facts anew.
Yes, Robert was eating less. Indeed, he sometimes spits out his chewed food instead of swallowing it. Yes, he is sleeping more.
Why was this difficult to hear in that moment? Had I only intellectually understood that Robert was leaving us? Is this how it feels to know in my heart that my husband is dying? I felt disassociated from myself, like I couldn’t access the information and thought processes that get me through the day, every day. I felt I had been “blanked,” emptied.
This is going to hurt
I lifted my eyes up and was jolted back to my body and the present. Jackson was crying silently across the dining table, his hand resting limply on the felted grape-patterned tablecloth, tears slipping down his cheeks and collecting at the end of his nose. I was struck by the cruelty of this moment. Jackson was just 25 years old. This was not right. I wished that I could take his 6’ 3” frame in my arms and rock him like a child.
Maddie remained calm, addressing clarifying questions to Nurse Chandra with the clinical acumen of a trained nurse. But I could see the cracks around the edges of her face in her furrowed brow and the slight tic in her eyelids, the sheen in her deepset blue eyes. She struggled with this too.
Should I have shielded them from this moment?
It’s official
Nurse Chandra met with Robert, collected his vitals, and returned with her assessment. Robert would be admitted to hospice with a diagnosis of an undetermined GI bleed. Dementia is not a terminal diagnosis. Dementia patients die of a variety of maladies, largely opportunistic illnesses that take hold as their bodies weaken. In Robert’s case, as his hemoglobin declined his body would begin to shut down. We were assured this would not be painful for him.
As the children collected their thoughts, Fatima opened Robert’s care plan binder and turned to the page that details the monthly charge for hospice with Gardenia Place. She gingerly drew my attention to the relevant line in my contract. We would incur an additional charge of $1,000/month while Robert was in hospice care.
Medicare pays for hospice care for people over 65 (and is sometimes available for people with a terminal illness who are younger than 65). But the additional cost for hospice patients residing in care homes is not paid for by Medicare.
Fatima had done this before. It is her job to talk about money, but her eyes said more than a contract could ever communicate. She radiated sadness for me and for the kids. By nature a happy person, she gave me a hug and as I teared up, she did too. She held my forearms in silence. There are no words in these moments; only the grim, naked truth. She understands how hard it is to take in this transition to hospice and how families break a little in the process.
We knew this would happen
Maddie, Jackson, and I gathered our things. We found Robert in his room and hugged him goodbye. I felt numb, emotionally drawn. I’m sure the kids did too. We didn’t say a word. It was time to go home and regroup.
Managing the end of Robert’s life didn’t cross my mind when I was working feverishly to keep him alive and fretting endlessly about whether he was happy. A hospice diagnosis confirms our journey is ending. Entering hospice brings a finality to our struggles.
In one way, a hospice determination is a relief; the fatigue of a terminal illness can be debilitating to those of us left standing. My days were concerned with the repetitive tasks of keeping Robert’s body alive. I no longer experienced the joy of attentive reciprocity. My marriage was a lonely place to be.
But on the other hand, Robert’s hospice diagnosis was a despairing acquiescence to the inevitable; the end we’d hope to postpone as long as possible. Miracles happen, right? Why not for us?
Despite everything we know about terminal illnesses (that they are, in fact, terminal), the approach to the end is shocking when it comes – even when we are making the decision to go willingly down the path.
With great sorrow, I understood there would be no miracle.