Last night, an “Urgent Request” came from Hospice House, that they were short staffed today, and beds were full– That someone was needed for the 8am-12pm shift today. I am still home recovering and had given up my shifts there for the next two weeks. Without thinking, I called and said, I’ll be there. As I looked at the calendar, I realized that I will be working on the 2nd anniversary of Mom’s death. The Social Worker asked kindly, “are you sure you want to do that?” I am. I can think of no more peaceful place to be, no better way to honor my mother, than to be there today for someone else who may need some support. Hospice gave me, my mother, my sister, and our family so much, two years ago. It is an honor and a personal blessing to return that today. So, I am re-sharing this post, in memory of my Mom– who lost her battle with Huntington’s Disease, two years ago today.
I wrote this post the morning my mother died, two years ago. I drove home, and couldn’t bring myself to go in my house… yet. I knew that when I stepped inside, the spell would be broken. The spell that was cast, sitting for more than 3 days beside my mother, as she died. I’d been called in two days before (after having been there for three full months, every day, and having spent the previous 24 hours beside her), and hadn’t left Hospice House. So that cold morning, two years ago, after having said goodbye to her, I wasn’t ready to go into my house and let her go. So I sat in my car and wrote this post. It was still dark out, very silent, and cold, that morning. Sitting there, I felt so many things and needed to put them in words. This post was written without edits or filters… it’s what was happening in those moments and hours just after losing my mother.
This morning, I woke at 4:30. Call that what you will, after reading this. I believe she is with me. This morning, I sat in my dark living room, the lights of our tree shining. She loved the Christmas tree. Loved it. I listened to Peter Gabriel, and held her close. I still grieve. I grieve all the things that were stolen from us. I grieve the life she lost to HD. I grieve that my children don’t remember the wonderfully funny, dynamic woman she once was. I grieve that she died so young, and missed so many things. I grieve that there are so many things I can never ask her, that I wish I had. I grieve what this disease will continue to take from me. I miss her. Still.
At 4:00 A.M., exactly, the nurse came into my mother’s room, again. I had a barely slept, tossing and turning, listening to Mom. I was dozing when she came in. I was frustrated to be disturbed again. Mom had begun moaning and I was trying to let her struggle, let her rage and just be there. However, they suggested lorazapam to calm her and I said yes. Then, I asked the nurse to leave and not return. I went over to hold Mom’s hand and it had grown cold. Despite her difficult breathing and horrible previous 48 hrs, her hands and feet had stayed so very hot. Burning up. Suddenly they were cold. She was now breathing quickly, moaning and staring off.
I pulled my computer over and put on one of her favorite songs: My Heart Will Go On. She and my daughter watched Titanic many times together, and the song always held meaning. It came out just when my grandmother, Mom’s mother, died and we all felt it was so lovely. Of course, over time it was over played and made silly at times, but in Mom’s dark room, holding her hand, it was beautiful. I felt my daughter there too, in the memory. I played Can You Feel the Love Tonight. And I kept holding her hand. I told her I was there, that it was ok to leave me, over and over. I said some of the very things she’d hated before: ”It will all be ok,” “We love you,” “K and I are here,” “Mea and Doby (her beloved pugs) are waiting for you, they’re going to lick your face over and over,” “Grandma and Bubbie are there, to hold you,” and, her breath began to slow; she stopped moaning.
I pulled up a picture of my sister’s dog, Lottie, who Mom loved and held the picture where she could conceivably see it. She was staring off, but I held it up none the less. I told her that I love her, that my sister and brother love her, that we all love her, and that I know she loves me. She smiled. Her mouth clearly turned up and she smiled, faintly. Her breathing grew slower and slower and I kept one hand on her heart and the other holding her hand, debating when to go wake my sister. As I got up, I sensed that I was feeling her last breath, and I walked to the other room to get my sister. When we got back to the bed, she was gone. She was so very still, her eyes still open.
My sister and I got into bed with her, as we have for weeks and weeks and we held her. We cried and held each other, but we held our mother hardest. We laid with her until we were done crying. Then, we sat on the bench beside her bed for a while… talking and thinking, sharing our thoughts, until we were ready to open the door and tell the staff.
Once we did, they called the funeral home and then brought in a bowl of lavender water. I put some special lavender oil in the water, that I’d been rubbing on her for weeks, that she liked. And then, two of the staff and I bathed her body. I washed her whole, small body down and removed the Angel necklace that I’d put on her 48 hrs ago. It was given to me by my aunts, out of love… something we each have and put on whenever one of us in the circle is in need. My aunts have all worn their angels for us this week, but I wanted my Mom to wear mine. I took it off her and back around my own neck.
When they came to take her, they covered her in the quilt that she got when she arrived. At the door, they stopped and we surrounded her small body. My sister and I held hands, my sister crying, I held her tightly, and reached a hand to touch our mother’s chest one last time. As I stood with one hand on my mother, and my other hand holding my sister’s, they rang a bell three times, slowly. We each touched Mom; I kissed her one last time and they took her away. I immediately wrote her name and a heart on a slip of paper, placed it in the Chris Moench prayer wheel, near the entrance and gave it a good spin.
I gathered my things and left Hospice House. It felt so strange to finally walk out. There in the parking lot, a thick layer of ice covered my entire car and it sparkled like a million diamonds. It was incredibly beautiful. When I turned my car on, Norah Jones’Don’t Know Why was playing. The lyrics to that song were on the first page of my manuscript, in it’s original version. I believe in symbols, in signs, in mystery… the diamonds, the 4:00 wake up (the exact time they called two days earlier), the song, they mean something to me. I drove home, but I wanted to sit here in my car, just a little longer. I put on Peter Gabriel’s I Grieve, watching the beautiful Christmas lights on my house, and ”Missing what’s gone… life carries on…. Love carries on.” Thank you Peter for singing to me again, on this morning when I am finally at Peace.
http://www.youtube.com/watch?v=fQ3wpjdYMqk “It was only one hour ago, it was all so different then. Nothing yet has really sunk in; looks like it always did… I grieve. It’s so hard to move on, still loving what’s gone, they say love carries on, and on, and on…”
What Doesn’t Kill You, Just Beats the Shit Out of You: https://talesfromthemotherland.me/2011/12/30/what-doesnt-kill-you-just-beats-the-shit-out-of-you/