The final chapter of her story began on Tuesday, September 18, when the nurse practitioner came by mid-morning. “We need to talk,” she told me, motioning for me to follow her out of the room. My heart was in my mouth as I followed her into the lobby and sat down on one of the leather sofas. The lab results showed that my mother was no longer in stage IV chronic kidney disease — the illness had pushed her into end stage, which meant her kidneys were failing. The antibiotics had also failed to clear the pneumonia from her lungs. The NP told me that they could try IV antibiotics for the pneumonia, but it would mean keeping her at the SNF for 4-6 more days and she wouldn’t necessarily recommend that.
I shook my head. “No. I want her to go home.” We talked a bit more and agreed that the best plan was to send her home to her board and care home with palliative care. The rest of the day was spent talking to different people about hospice care options and getting things in place, so she could go home as soon as possible. I didn’t want to use the “H word” in front of her, so I talked about it as home health care. Every time I said something about going home, she would smile and say “Good!”
Whenever I needed to leave the bedside even for a few minutes, I would ask her if she needed anything before I stepped away. One time when I asked that, she replied “Nothing you can give me.” With a smile in my voice, I asked lightly, “What would you ask for if I could give it to you?” Her answer hit me like a punch in the ribs: “Freedom from pain.” I kissed her forehead and told her she was right that I can’t give that to her, but God can and we can pray for that.
Wednesday I signed the paperwork with the same hospice company that is caring for Mom’s roommate, and we arranged for a Thursday discharge. I don’t think she ate anything solid on Wednesday, but she did drink two Boost shakes over the course of several hours. I stayed with her until 10:00 p.m., to see that she was clean and comfortable before I reluctantly left to get some sleep. At that point I still thought she’d recover some ground once she got home to a safe, familiar environment. I thought we might be on a palliative plateau for weeks or months.
When I arrived at the SNF around 7:00 a.m. on Thursday, her breathing was so labored it frightened me. Her chest heaved with every breath and she had spasms of coughing that made her whole body shake. After one of these spasms, she looked at me and said grumpily, “This isn’t worth it.” She was too weak to try to eat, but she thought the orange juice looked good. I gave her two sips and she promptly vomited all over her pajama top. I pressed the call button, a CNA arrived to help get her cleaned up, and we gave her some water to rinse out her mouth. “My body doesn’t feel right,” she told me.
I found some worship music on Spotify, songs that Mom would recognize from church, and put my iPhone beside her pillow. I sat beside her bed crying silently and praying the same three-word prayer over and over: NOT YET, GOD. Overnight I’d gone from expecting that she would get better, at least temporarily, to frantically praying that we could get her home before she slipped away. I couldn’t let her die in that nursing home.
The transport arrived at 1:00 p.m. to take her home. I walked beside the stretcher to the ambulance, kissed her goodbye, and told her I loved her and would meet her at home. When they wheeled her in to her familiar room through the sliding glass door from the back porch, I was waiting for her. Mom was awake and coherent. “Do you recognize this room?” I asked her. “It looks a little familiar,” she murmured. Then her eyes fell on my dad’s picture in a frame on top of the bookcase and she smiled. “There’s Bob’s picture!” I squeezed her hand. You’re home now, Mom. Everything is going to be OK. She must have sensed that because, almost as soon as we got her into the newly delivered hospital bed, she seemed to relax and was breathing more easily.
The hospice worker who did the intake told me they would be providing 24/7 nursing “due to her change in condition.” The first nurse arrived around 5:00 p.m. to take the night shift, and I was able to go home to feed my cats (and myself) and call my sister, who had arranged a week off work and booked an early morning flight on Saturday. Then I went back to sit with Mom. She was awake when I got back because she’d thrown up again and the caregivers had to get her cleaned up and change her nightgown, but she soon dozed off again. The nurse had given her a low dose of morphine (“comparable to taking Tylenol with codeine,” he told me) for her pain, which made her drowsy.
I decided around 10:30 p.m. to head home and get some sleep, so that I could spend more time with her when she was awake. She’d been sleeping peacefully most of the evening, but a coughing fit woke her briefly. I moved to her side, squeezing her hand and kissing her forehead. She looked into my eyes and smiled weakly. “Good girl,” she whispered. “You’re a good girl.”