<– Mom, just three months ago, with her frozen stare.

Last night I went to visit my Mom. It had been nearly a week because I was in Chicago through the weekend and this week she has been resting each time I’ve gone by or called. So Thursday night I decided to over around 4:45 and wake her if she was resting. Dinner is at 6:00 so I figured it would be the best option.  When I arrived her side of the room was dark. I turned on the light over her bed and her eyes sprang open. “Oh, hi!” She said softly. Her eyes smiled, but her face changed little. Honestly, it was a shock for me. She has lost so much weight in just a week, her cheeks hollow, her body sunken, that I was taken aback.

I knew that she has been refusing food, sometimes for days, other times eating only very small portions. The nurses have tried to encourage her to take something in, offering ice-cream floats, things she likes, but my mother has turned most of it away. I sat on the edge of the bed and  she said very quietly, “I’m glad you’re here.”  I had to lean in and have her repeat it, her voice was so frail. I tried talking to her, asking her questions about her arm (the cast just came off) and how she’s doing but she only stared at me, nodding occasionally.

<– My sister, my mother and I on Mother’s Day, two years ago.

My Mom has always taken pride in having manicured nails, since she stopped biting them (to absolute nubs!) when I was in high school. I have taken her for a manicure/pedicure every 4-6 wks for the past three years now. The lovely woman who does them for her actually called last week to ask where she’s been. When I told her Mom is in hospice and nearing the end, she offered to come to the nursing home and do them there. Such kindness is so meaningful. Yesterday, as I held her hands I noticed that her fingernails have gotten very long and were dirty. I got out her nail kit and clipped them all down low. She watched me as I filed them all smooth and then rubbed lotion on her hands. She dosed as I worked, or watched me and worried (no doubt) that I would cut her, as I have in the past. My sister is much better at nails and Mom and I both know that.

When her nails were cut and filed I sat next to her for a few minutes. I took a photo off the wall that I framed for her two years ago. It is a picture of her with four of her seven grandchildren, at Little Man’s Bar Mitzvah two and a half years ago. Mom is standing down at Marine park, her face frozen in the strained smile she had then. My niece C is holding Grammie’s arm tightly and the others surround her lovingly.  She looks so happy on that sunny day. She attended the event with no walker and while she had problems with managing the day, she was able to be there.  I held up a photo of  my grandmother (her Mom who also died of Huntington’s) and grandfather. “I love this picture of Grandma” I said. “Me too,” she added.  I then brought over a photo of her beloved dog Mea, from the window sill and she reached out and stroked the image. “You remember Mea, don’t you Mom?” Without hesitation, she responded “I sure do.” I left both photos on her nightstand so she can see them better.  (Waiting for a ^^ manicure before my sister’s wedding)

This was the first visit I’ve had with her where she did not get up at all. Her bed is now at its lowest position to avoid falls, with a matt on the floor. It is hard to sit and visit.  After several minutes of just balancing on the edge of the bed, I crawled carefully over Mom and cuddled up next to her in bed. Mom moved her good arm up and pulled me in close, holding me like I held my own kids when they were little and needed a good cuddle. I needed that cuddle and she needed to give it. We lay there for more than an hour just holding each other and listening to the sounds of the nursing home, the sound of her oxygen machine and the TV.

<–  (At Principessa’s h.s graduation, 2008)

Mom’s roommate watches endless hours of The Waltons and Little House on the Prairie on the Hallmark channel. The Waltons is often on when I’m there and has become the background to most of our visits. When I was a kid my family watched the show each Thursday night. (I may be wrong here, but I would put money on the fact that it aired on Thursdays.) I am certain that I’ve seen every episode of The Waltons at least once, and yes, I’m bragging about that.  I still love to call out to my family the iconic “Goodnight MaryEllen; Goodnight Jim Bob; Goodnight Daddy; Goodnight Grandad… Goodnight John Boy;” though my kids have never seen a single episode. So lying there with Mom it was somehow even more comforting to hear John Boy and the voices of Mama and Daddy last night.  Growing up, their home seemed so warm and safe and last night the Waltons soothed me as I lay on my mother’s chest and listened to her labored breathing.

Before I left, Mom turned down dinner, refused all food again. The Aid brought her the iced coke she requested and I held it for her. When I said, “Here, I’ll hold it. You can’t really hold your cup anymore,”  Mom took the plastic cup from me and balanced it precariously on her chest, taking tenuous sips from the straw. She was putting me in my place, letting me know that she’s not gone yet. She isn’t gone yet. She is trapped in there, slowly leaving me. Each time I visit her now I struggle with the knowledge that she is in fact leaving. I’ve said so many times that this is endless, that it would be a blessing to not see her suffer anymore, but still I dread that day and what I will feel. What I will do.  For so long I have been clinical about all of this and managed my feelings; I’ve held them at bay. Now, they overwhelm me and I it’s hard to be there and not just cry puddles.    (On our deck, with her grandson J a couple of summers ago  ^^)

<— (Halloween with Principess, Middle Man and Little Man, 1998, before it all changed.)

The nurses know that it’s coming too. They talk to me more tenderly, they check in on our visits. “Do you need anything Dawn? Carole?”   When it’s time to leave, I try to get out quickly. I dash past the nurses desk before they can ask, “How did it go?”  I can’t answer them; I avoid their eyes. The minute I try to speak I choke and dissolve in the tears I’ve held back. I can see their surprise (she’s the composed one, the one in charge), their compassion, and it makes me cry even more… More puddles.

Driving home last night, I could not stop the tears. They overwhelmed me and I had to pull over for a moment, afraid I might make a mistake driving, but desperate to get home. Each song that came up on my iPod seemed to bring new waves of loss. These aren’t just soppy songs either: The Cranberries’ Zombie, The Fray, Eddie Vedder. When I pulled into my driveway, Dust in the Wind by Kansas came on (I kid you not) and I turned off the car and cried until I couldn’t any more. It was random, but some days the Universe and iPod have you by the balls. (Symbolically of course.) I sat in my car, a safe and comforting place, by the glow of a beautiful fool moon and I cried more than I’ve cried in a very, very long time.  It seems to be happening a lot more often lately, when I’m with my Mom, or after I leave her… as I say this very long goodbye to my mother. “I close my eyes, only for a moment and the moment’s gone.”

I don’t want to talk about it; it’s just too hard.  So I write it here. I write it so that I can move through it. I write it and don’t think about who will read it or what they will think. I write is so I am not alone in it. I write it so I won’t have to say it aloud and risk the mess, the puddles that follow me right now. “Just a drop of water in an endless sea… Dust in the Wind.”  I deflect people’s questions, their good intentions, my friends’ empathy; I pull it together by day and lose it with Mom and The Waltons. (<– A favorite from three summers ago. Setting sun, on our deck and Mom’s smile.)

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