Archive | October 2018


“What do I do now?” I asked.

The hospice nurse gently explained the next steps she would take: contacting her hospice company and the owner of the care home to inform them of the death, waking up the caregivers to let them know as well. “And then we will need to contact” – she consulted her notes – “the Neptune Society. If you want to make that call, it’s your right. But I am happy to call them for you, if you prefer.” Yes, please. You do it. Thank you.

I sat down on the other bed and listened as she made the phone calls, offered the few pieces of information she needed and didn’t already have at her fingertips. When she finished the last call, the nurse told me it would be 60 to 90 minutes before they would come to collect her.

She asked if I wanted to remove Mom’s wedding rings from her finger. We had tried to do it earlier because her hands were starting to swell and the nurse was afraid we wouldn’t be able to get them off later, but it had proved too difficult and I was afraid of causing her distress. We were beyond that now, so I nodded. Would you do it, please? Thank you.

She carefully worked the engagement ring from Mom’s finger and handed it to me. I slipped it onto my middle finger, next to my sterling silver owl ring. The wedding band was still getting stuck at the knuckle and I told her to leave it. “In 55 years, she never took those rings off except to clean them. Maybe she would want to keep it on.”

The nurse then left the room to give me some time alone, to say goodbye. “Take as much time as you need,” she told me. “Just come and get me when you’re ready.” I stood beside Mom’s bed and told her everything that was in my heart, and I cried until I felt done crying for the moment. I said a blessing over her, the one that begins “May the wind carry your spirit gently…”

I went out to the dark living room and sat with the hospice nurse for a few minutes, but it felt wrong to leave Mom alone — even though I knew Mom wasn’t THERE anymore — so I went back into her bedroom. I sat on the other bed and just looked at her, so still. Her jaw structure looked odd, and I realized it was because we had removed her dentures. I kept thinking that I saw the sheet move, as if she were breathing… and it was unnerving enough that I had to go over and put my ear to her chest to listen for any signs of breath or a heartbeat. Silence, of course. A fly had gotten in when we opened the sliding door earlier, and it kept landing on her. After shooing it away several times, I finally pulled the sheet over her head. I stayed with her.

It was 2:45 a.m. before the mortuary people (a man and a woman) arrived. The gentleman told me that because she was being cremated, they had to remove the wedding ring. I nodded and looked away. A few moments later, he put the delicate white gold band into my palm.

When they had her wrapped up and loaded on the stretcher, the hospice nurse held out her hand to me. Holding hands, we walked behind the stretcher out onto the patio, past the garden and around the side of the house. The moon hung in the sky, round and nearly full, reflecting brightly on the clouds. I caught my breath at the beauty of it. I wondered if Mom was seeing it too.

The Final Chapter (Part 2)

“I see my end in sight,” she said.

It was Friday morning, a little before 10:00. She had been sleeping when I arrived back at the care home an hour or so earlier, and the new hospice nurse on duty told me that Mom  had thrown up twice and so the nurse had given her something for the nausea along with Ativan to slow her respiration. Her breathing was visibly slower and easier, and she seemed to be resting comfortably. The nurse had just finished giving me her update, and I sat down and pulled out my colored pencils and the picture I was working on, when Mom woke herself up coughing and then started to mumble. I went to her side, brushed her hair from her forehead and leaned over to give her a kiss. I couldn’t understand most of what she said, but she looked right into my eyes for a moment and her voice was clear when she said “I see my end in sight.” I knew that was a moment of lucidity, and I knew the time was short.

Mom’s  sister, Alice, had wanted to call and talk to her before we left the SNF but Mom was too weak. I worried aloud that Alice wouldn’t get another chance to talk to her. The nurse, a gentle Pakistani woman with kind eyes and a lovely accent, told me that hearing is one of the last senses to go and we should keep talking to Mom even after she stops being able to respond because she WILL hear us and be comforted by our voices. I texted my aunt about this, suggesting that I could put the phone on speaker and set it on her pillow. When Alice’s familiar voice said “Hi Dot, it’s Alice,” Mom opened her eyes and looked around. I could tell she was listening to everything Alice said and when her sister said “I love you,” Mom replied just above a whisper, “I love you, too.” With her voice breaking only a little, Alice opened her Bible and began to read from Corinthians 13, the verses that end with “And the greatest of these is love.” Mom drifted back to sleep as she read. It was beautiful and heartbreaking.

The last words my dad ever said to me, in a  phone conversation two weeks before he died, were “I love you, too, sweetie.” It wasn’t something he said to me very often, and I have cherished that memory. I was  grateful that Alice got to hear those words one last time from her big sister.

A little later, when the nurse had stepped out of the room, I stood by Mom’s bed and told her that I know my dad is waiting for her in Heaven. “… and your brother Bill and your brother Tommy and your sister Shirley… and Fritz and Bob and Marilyn. They’re going to be so happy to see you again! I’ll bet they throw a big party to celebrate your arrival, with singing around the campfire.” She didn’t stir, but I trust she heard me.

I’d been feeling my dad and two of Mom’s brothers, Bill (the oldest) and Tom (the youngest), around her bed since she was at the SNF, even before we got the end stage diagnosis. Mom always said that Bill was “the best big brother in the world,” that he always looked after and protected his younger siblings, so of course he’d be looking after her now.  At random moments, while sitting beside her bed or making the arrangements for hospice, I’d see my Uncle Tom’s smiling face or just get the reassuring sense of his quiet strength. One night after I left the SNF in tears of anxiety, I got a clear mental picture of my dad dozing in a canvas camp chair beside her bed. The message was clear: Go home and get some rest. I’ll stay with her. I knew they would all stay with her through this transition and be waiting with open arms to welcome her into the next world.

That night I helped the hospice nurse give her a sponge bath and change her into a fresh diaper and a clean, soft t-shirt (cut down the back so we wouldn’t have to pull it over her head). The nurse was so careful and gentle, but Mom still kept murmuring “Ouch ouch ouch” whenever we moved her. At one point, when the nurse lifted her knees, Mom said loudly “Ouch! Stop it!” We smoothed lotion over her skin, and the nurse cleaned her mouth with a swab, and she was resting comfortably when I left to get a few hours of sleep.

(Later, I would realize that my mother’s last words were “Stop it!” and make half-hearted jokes to cover the hurt. I would remind myself that she didn’t need to tell me she loved me one last time because we had said that to each other many, many times during her last days and weeks. She knew that I knew. Later still, I would realize that she hadn’t even been aware of who was touching her when she reacted to it – she wasn’t telling ME to stop it. The last thing she said to me, to her daughter, was “You’re a good girl.” I can hold onto that.)

Saturday morning, she was visibly worse. Her breathing was once again labored, chest heaving with every breath, even though the oxygen had been turned up to 6 liters. She was non responsive, and the new nurse on duty told me that “she could go at any time now.” She asked if I wanted hospice to send a chaplain and I told her no, I’d ask for someone from her church to come. I emailed the pastor’s wife, who had come twice to visit Mom in the SNF, and she quickly responded: We’ll be there within the hour. I sat by Mom’s bed, praying that both my sister and the pastor would get here before it was too late, tears streaming silently down my cheeks.

They did arrive in time. My sister got there first, and I asked the nurse and the care home administrator (who had stopped in to check on things) to leave the room and give her some private time with Mom. Then the pastor arrived and prayed with her and read something from the Bible that talked about angels carrying us to Heaven on their wings. After the pastor and his wife left, my sister and I stayed by her bed for a long time, gently stroking her arms and talking to her about everyone who is waiting for her in Heaven.

The hospice nurse must have told the administrator that the time was close. The staff set up a bed for Mom’s roommate in the TV room, so that I could sleep on her bed and stay with my mom. My sister took a nap there, while I journaled and colored, and then we ordered some food delivered. I went home briefly to pack what I would need for overnight and feed my cats. Then I called an Uber to take my sister to her hotel, since she’d had a very long day on very little sleep.

I was sitting on the other bed, sipping some wine I’d brought in a Mason jar and contemplating whether I should try to get some sleep, when the nurse suddenly stood up and went to stand beside Mom. “It’s OK,” I  heard her say. “You can go.” I was instantly on alert, and I went to the other side of the bed and began gently stroking Mom’s arm and her forehead. “Your daughter is going to be fine,” the nurse continued. “Don’t you worry about her. There’s nothing you need to worry about now.” She nodded to me, and I started to talk.

I told her again about all the family who are waiting for her, about singing around the campfire again like they always loved to do… I reminded her what the pastor had said about angels carrying her on their wings to Heaven. “You’re not going to have to struggle or work to get there, Mom. They’re going to carry you on their wings. All you have to do is let them.” I told her that I love her so much and that I’m going to miss her, but I’m strong and I’m going to be fine — and I’m happy for her that she’ll be reunited with beloved family and won’t ever hurt again.

And while I was saying these things, she was breathing… and then, she wasn’t. It was so gentle and subtle, I might not even have noticed if the nurse hadn’t drawn my attention to it. I gave Mom one last kiss and told her to hug Dad for me when she sees him. At 11:46 p.m. on Saturday, September 22, her story came to an end.


The Final Chapter (part 1)

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.”

Last photo 9-20-18