There’s an adage about caregivers that goes something like this: a caregiver needs to take care of the caregiver or she/he won’t be of much use to the patient. Easier said than done. How does one control for stress?
After midnight I was awakened by a stabbing pain in my left eye. I knew what it was: HSV-1 (Herpes Simplex Virus-1) blisters on my cornea, triggered by emotional stress. I’d first received the DX when my parents were seriously ill. The condition requires immediate treatment with a refrigerated anti-viral medication that pharmacies don’t always have on hand. My ophthalmologist was in D.C. I called his number and left a message, explaining that I couldn’t drive in to see him and asking him to call in the RX to a pharmacy in Reston. I knew I had to treat my eye before I could return to the hospice to see John.
How would you react if a hospice nurse told you that you have to move your loved one out of the inpatient hospice?
My jaw dropped. “What are you talking about?” I asked. My husband was dying. Of course, he was alert and eating well. He had been given an injection by the doctor who said it would enable John to be alert for 3 – 4 days. He called it the “honeymoon period” after which John would sleep until the end. I was furious with the male nurse for speaking in front of John who was, indeed, alert. I was also anxious and confused.
Can you imagine participating in a wine-tasting after you are admitted to an inpatient hospice?
After clearing it with the doctor, John’s brother Dick asked John if he’d like to taste some good red wine. John nodded “Yes.” Dick said he would bring it in the next day. On Wednesday, the hospice staff, with John’s smiling encouragement transferred him to a lounge chair. Dick wheeled him outside to the gazebo. It was a lovely spring day. Neighbors Jack and Kathy arrived and joined us in the gazebo where the five of us enjoyed some very good red wine. John consumed 4-5 ounces after which he napped for a while.
What might you do after your partner is taken to a hospice?
As soon as I cancelled the caregivers scheduled to take care of John at home, I started calling our friends. I told them that John had been taken to hospice. They started arriving, singly and in pairs, to say goodbye to John. Several who lived in the neighborhood told John they would see him again, and they did. “He knows exactly what’s going on,” Marilyn said. “I’ll tell you later.” She told me that when she went back in to see John she told him that she and others would look out for me and that he shouldn’t worry. She said that tears had run down his cheeks. A month earlier, John had called her, worried about how I was going to cope.
Many of us forget important dates once in a while. Can you imagine forgetting your second wedding anniversary?
It was our friend Marilyn who caught me by surprise when she arrived at the hospice to see John. “I reminisced with John about your lovely wedding two years ago today,” she said. OMG! I had forgotten. And now that she reminded me, I was momentarily shocked. Had we been married just two years? It felt longer. We had crammed in a lot of living together but the reality was, not nearly enough. We had so many plans for years ahead of us.
What do you think “honeymoon” means in a hospice?
The morning after John was admitted as an inpatient, the hospice doctor tweaked John’s medication. “This will allow him to be wakeful and responsive,” the doctor said. “We call this the honeymoon, which might last two or three days after which John will start sleeping until the end.”
What amenities, if any, would you expect to find in a hospice facility?
The hospice director came in and introduced herself to John and me. She explained that the facility, which had once been a school, long since converted to a hospice, had just 15 beds. Nurses and volunteers came in and introduced themselves, saying to let them know if there was anything they could do for John or for me. I listened, knowing there was nothing anyone could do now, except to keep John comfortable. That afternoon a volunteer asked if we would like a cup of tea, a slice of cake. “Yes,” we both said. I followed her out into the hallway. There was a linen-covered cart with a china tea service and a chocolate cake. I took a slice of cake to John while a volunteer carried tea and cake in for me. Late in the afternoon, after John had dinner, which he ate every bit of, I drove home in a state of disbelief. The whole day seemed surreal.
Have you ever been in an inpatient hospice? What would you expect to find?
I was heartened to find the one-story hospice facility surrounded by leafy green trees in a residential neighborhood in Arlington, Virginia. It looked nothing like a hospital. Whew! After parking I walked in and was greeted by someone who told me where I would find John, who had been transported earlier by an ambulance-like vehicle. Walking past a commodious, light-filled, well-appointed living room with high ceilings, I entered a wide, somewhat dark windowless corridor. On my right was a doorway over which I saw #2. I walked in, following a draped passageway, to find John with a window view. He was sitting up in bed. lying against a number of pillows. He smiled as I walked toward him. He looked wonderful, his face bathed in natural light. How can someone who is terminally ill look so good?
If you have scheduled ‘round-the-clock caregivers, what do you do when they are no longer needed, not because of death but because the patient has been moved to an inpatient hospice facility?
First, I paid the initial caregiver for a full day and thanked her for showing up. Because of her caring presence I was sure my blood pressure had dropped. I then called the other caregivers I had scheduled to take care of John, explaining why I had to cancel. They were, to a one, gracious and sympathetic.