DO NOT GO GENTLE INTO
THAT GOOD NIGHT

Do not go gentle into that good night,
Old age should burn and rage at close of day;
Rage, rage against the dying of the light.

Though wise men at their end know dark is right,
Because their words had forked no lightning they
Do not go gentle into that good night.

Good men, the last wave by, crying how bright
Their frail deeds might have danced in a green bay,
Rage, rage against the dying of the light.

Wild men who caught and sang the sun in flight,
And learn, too late, they grieved it on its way,
Do not go gentle into that good night.

Grave men, near death, who see with blinding sight
Blind eyes could blaze like meteors and be gay,
Rage, rage against the dying of the light.

And you, my father, there on the sad height,
Curse, bless me now with your fierce tears, I pray.
Do not go gentle into that good night.
Rage, rage against the dying of the light.

Dylan Thomas

It’s amazing how you can read something many times in your life and read it so differently at one particular moment in that life. My mother was never an Intellectual. She was not a lover of writing and words. She was lively and funny, tenacious and feisty, stubborn and selfish at times. She loves music and painted when she was young.  She was many things, but never a poet. And yet, she has taken these words and made them jump off the printed page. The Hospice nurses tell me daily: “Your Mom is so determined. She’s so feisty.” One said, “I feel like I know what she was like when she was younger, because I see the determination in her eyes still. It touches me.”

“What!” I cry. What is she determined to do now?  “Rage, rage against the dying of the light.” She is raging. She is fighting with every breath to not go gentle. While it touches me, and I while I am humbled by her journey, I am shaken to the core. This has been THE worst week I have had so far in this journey toward death. My mother’s death. She has held on tenaciously to a life that all of us who are there to witness, know is futile, lonely, and at times (especially this week) horrific. She is in pain all of the time, but for the medications that keep her “pain free.” She can no longer stand for any significant time, on her own. She relies on others to change her “briefs” and wash her. She relies on them to hold the cup when she drinks the 2-5 ounces of Coke that she drinks each day. Some days she fiercely grabs the cup from my hands, as if to let me know that she can still do something on her own. She rages. My sister has a powerful photo of one of these moments, when Mom just wouldn’t let go of that cup. Both of us, and the nurses, know that we can’t leave it in her hands. She will spill it on herself and others will need to change her. Does she hold so tight to keep us there? Don’t leave me, she silently pleads, as she clings to that cup.    (Two years ago, though she needed help, my mother still danced ^^)

This week, as I said, has been particularly traumatic. On Friday I came to visit, as I do each day. However, as I came ’round the corner I heard many agitated voices coming from her room. A nurse came running out (running is alarming at a Hospice House). I rushed to the room and saw my mother, naked, surrounded by five nurses, all trying to hold her up and clean her. After weeks of not eating, she had requested a “roast beef sandwich.” They didn’t have that, so someone got her scrambled eggs. Her stomach, completely unaccustomed to food at this point, could not take it and she was violently ill. Part of me feels like I should not spare anyone who cares to read this, the precise details of all that transpired, but part of me still recognizes that this is for me and my sister (who I shared it with) alone. It was simply horrific.

In the end, I stripped to my bare feet, bra and rolled up jeans and took my mother into the shower with me.  It was shift change and staff was overwhelmed, so it was just me in the shower with her. One of the aids, who I have become very fond of, came in and carefully placed a towel on the shower floor, telling my mother gently, “I don’t want you to fall C.” as he left the room. He was so kind to not acknowledge my crazy appearance and to show my mother so much respect,  to avert his eyes, though he has “toiletted” her and carried her many times before. He’s a young guy who shows so much compassion, it moves me to tears often. So, I stood there in the shower washing my mother’s hair and her body. Asking her to let me clean places that she once cleaned on me, 48  years ago, and which I know she never intended for me to reciprocate. Like she no doubt did with me, I cradled her head and whispered over and over: “It’s ok, shhh, it’s ok.”  How horrifying it all must have been for her!  How degrading!  How scary and physically awful. That was all I could think, over and over as I washed her.

To add some humor to what is otherwise an entirely black event, with NO silver… as I stood there, I suddenly became aware that the water seemed to be very warm on my legs. On my legs?!! Yes, the towel, meant to keep my mom from falling, was blocking the drain. By the time I figured it out, the water had run out of the shower, out of her room and into the hall. I have little doubt that the Shift Change for this past Friday was discussed by every nurse on staff. I have heard it repeated countless times since then. The sound of people suddenly realizing there was water in the hall; me yelling for help because I could not let go of my Mom even for a minute; the Hispanic woman who cleans the rooms, saying all the things we were all saying: in Spanish. It was funny. I can’t lie: I had to laugh. Standing in the shower with my Mom as they all brought piles of towels and tried to ignore my semi-stripped presentation, it was funny.

When I’d gotten Mom dressed again and we’d put her back into bed, I just climbed right in with her, as I do each day. I lay under the covers and held her tight. I rocked her and sang to her. A (new) group of three women who had no idea that all of this had just happened, but who come to sing for the patients, came in and sang three songs for her. I requested “500 Miles” and they sang it so beautifully. They smiled when I sang along with the harmonies and my mother drifted to sleep. Out of all that hell, there was such beauty in those moments of music and lying beside her.

Today however, the raging continued. The dark ugliness of this end was amplified. My mother has been unable to cry for several years now. We understand that it is common in Huntington’s Disease patients, but I can’t deny that it stumps me over and over. Times when I’m sure she will, or should tear up, she doesn’t.  Her eyes remain dry, whatever the circumstances. When I arrived today, I was already feeling a little guilty because I had not gone yesterday. My sister came up from Seattle, so I took the day to get things done and see a movie with the kids last night.  However, when we got home from the movie, there was a message from one of the nurses there, letting me know that my mother had wanted to talk to me, the nurse was holding the phone to her ear. Hearing her faint whisper, no words, was heart breaking.

So today, I arrived and the nurses stopped me before I went in. “We just wanted to let you know that she seems very upset today.” They informed me.  “Yes, she’s been more upset the past few days,” I told them. “But today, she’s been crying for quite some time.” One nurse added.  I stopped cold. “I’m sure there’s something wrong with her eyes. She doesn’t cry, I haven’t seen her cry in at least four years,” I explained. “It looks like crying.”  They told me a volunteer was sitting with her. When I came in, her eyes went right to me and she let me know, silently, that she was glad I was there. Politely, I thanked the volunteer and asked her to go. As soon as I sat on the bed, my mother’s eyes filled with tears and her mouth began to tremble. She cried for most of the four hours I was there. She stared at me and implored me to understand, but I know that I am only stabbing at that “Good night.”  I am throwing darts in the dark, trying to find meaning in that which alludes me.

Of course I have thought of all the obvious things. I have asked her: “Are you scared (yes)? Are you angry?  Are you sad?  Are you worried? Can you please tell me what you are feeling Mom?” “Trouble, Trouble me. Disturb me with all your cares and your worries, Trouble me, On the days when you feel spent… Speak to me, When your silence is my greatest fear.” (10,000 Maniacs) She just trembled. Is she afraid to burden me, or is she unsure what it is?  A friend, who I reconnected with at my 30th High School reunion this summer, sent me a powerful book called Final Gifts, by two Hospice nurses. It is deeply moving and speaks to the communications of the dying. Yet, my mother’s message is still unclear. In the past week she has said “I can’t live like this one more minute,” and yet still she rages. When the nurses offered her a sedative, to calm her today, and explained that it “will make you sleepy. You will not feel like eating or drinking, so it may cause a more rapid decline,” she just stared at me.

When the nurse left, I told Mom more clearly what that meant. I told her that I understood if she wanted this to be over (as she has said so many times now), and if sleep would be more peaceful. I assured her that I was strong enough and would be ok, even if she leaves me. I know she heard me. She held my hand, she did not let go, and then she told me “I don’t want that.” “You don’t want to sleep? You don’t want to be calmed?” “No.”  I lay on her chest for a moment to hug her, and she hugged me back. That is another thing that is hard for her to do, but she rages… and she hugs you until you need to pull away. So, she was not given a medication to calm her. And when I had to leave, and she became more upset again, I wanted that lovely blue pill. I really did. Maybe I’m not as strong as I thought I was? Because, frankly, this is unbearable.

I remind myself each day that she is the one suffering; that this is her journey. It has been transformative to be on it with her, but I am exhausted. My friends bring meals and drop off treats. They call and ask what they can do. But I am tired of even telling anyone. I could not do it without them, but I am also tired of trying to speak when tears seem to flow so easily. I have inherited the tears my mother can’t cry?  I am so grateful when my friends and I can just laugh as we always have and I can escape this for a little while. It doesn’t really leave me, not when I’m asleep and not during the day… but those exquisite moments when I can laugh and just move through it a little, are such a relief.  To watch someone you love wither away and yet still fight: still demand that she hold her own cup, or tell the singers (a different group) that their music is depressing (it is!) or that she wants a roast beef sandwich, not scrambled eggs… My mother rages. My mother will not go gentle.

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