Terminal Lucidity. Well, that doesn’t sound very promising does it? But that’s what The Rally is, that moment, or those moments when, very close to death, a loved one becomes radically clear, able to speak whole, meaningful sentences within the context of a conversation or situation. But she was doing so well! I tearfully exclaimed to staff after my mother’s death. Hugging me, as we all cried, The Rally, they said.
So it happened with my mother. It seemed she was in a real period of upswing. I wasn’t thinking impending death, and I was encouraged, not alarmed. I thought, Wow! Mom is rallying! In retrospect, it is ironic. I thought Mom’s new vitality had to do with her nutrition, perhaps, or the gabapentin finally working. Maybe these two factors are also true. This was in August, and I even made a note of how well she was doing in the communal book I left in her room, a book I had started as she entered end-stage dementia, having suffered her second fall that marked the end of her mobility. The ups and downs continued, but Mom never stopped trying. Such was her will to live. My mother enjoyed being alive.
Over the weeks after Mom’s second fall I was repeatedly told end-stage goes the fastest, faster than any of the other stages. It’s as though the brain’s deterioration accelerates, and the cascading effects of the death of brain cells take hold. I knew my mother was fading more quickly now than in earlier stages of her dementia journey. She was losing her ability to swallow and was now on pureed foods. Her life was becoming more of a management as my mother was ever-closer to death. I pushed very hard for hospice care. I called my mother’s two best friends. “I’m hoping to get her through summer, but you better come as soon as you can.” One friend came in March, another in May. The visits were a treasure to my mother, and the photos testify to her recognition of, and pure joy to be with, her two dearest friends.
I always knew my mother was still very present. I never underestimated her awareness of herself and her situation. Mom knew, every step of the way. She knew when she couldn’t speak coherently, sometimes scolding herself. She knew when she lost bowel and bladder control. She knew when she’d spilled food down her knit top. She knew who I was, always. She was aware of herself until the end, that awareness trapped within her, but making itself clear in many ways; the big smiles whenever she saw me, the waves to me, the love of my dog, the kisses hello and goodbye. Communication is not all about language.
After months of struggle, getting through the ups of the downs that were within her overall, fast downward slide, we had an evening together like none other. Mom had gotten through most of the summer. I had changed my schedule over the past six months of her life to be sure I would be with her 2-4 times a week to feed her dinner, take her for a walk off the Memory Care unit around the building where we could look out large cathedral windows at the gardens, or sit on the porch if weather was inclement, and when it wasn’t, go for a long summer’s walk outdoors in the half-country environs. It wasn’t perfect. Some evenings Mom was crabby. Some evenings she was tired. As we got deeper into the summer, Mom waned. The hardest part was simply not knowing, exactly, when the end would come.
One particular evening was so nice I called Mom’s best friend on Monday, August 14, saying my mother might make it to her 86th birthday, near the end of September, and that we should plan to visit her. “I’ll make a carrot cake.” It was one of Mom’s favorites. I imagined her delight as I spooned the milk-laden mush of pureed cake into her mouth. “Mmm!” she could still say about any dessert. On the evening of August 13, I wrote in the notebook:
Mom is doing amazingly well.
I asked for a CD player & one was gotten
for her. Notes from hospice mention
music therapy. She is getting massage.
Tonight [the Care Assistant] said even her last shower
was delightful. Her mood remains good,
she talks a little. One aide tonight told me
how Mom even fed herself recently. She’s some-
thing else! ♥ -L
And only the week before, on August 6, I had written:
This book is now home with me.
Saw Mom tonight w/out puppies—
She was in great spirits, talkative, and
sometimes quite clear. After supper, we
sat on the porch for a bit, then I walked
her around outside to see the garden on the
on the patio. She became sad when I was going
to leave, truly—her face changed & she teared
up. I said I’d stay longer & watch TV with
her in the [Memory Care] living room. She said, quite
clearly, exactly this: “Ok. I like it when you
come.” I stayed a bit & Mom was fine
to have me leave then when it was time. ♥
P.S. We sang [on the porch] “I’ll Fly Away,” & Mom said,
“I know that one. I like it.” She was so sweet tonight.
I wasn’t thinking Rally in terms of Death. Though I’d been saying for months Mom likely wouldn’t last the summer, and I really believed that, intuited it, I had also begun to think she might get to winter—possibly another Christmas. I didn’t recognize any of this as terminal lucidity. How could I? She was otherwise “fine,” though of course she was not. The Rally never occurred to me. Mom had rallied her entire life. I was used to her coming back from all the worst of things she’d already gone through. I was ready and not ready for my mother to die. I held to impossible hope in spite of my instinct that told me the time was very near. And there sat all the uncertainty of it all. When would my mother die? I didn’t know.
As it happened, on the morning of Tuesday, August 15, after such a lovely visit only two days earlier, my mother had a fever of nearly 101 F, “plus congestion,” I wrote, “And the ‘rattle’ I am so familiar with…” The “death rattle.” I made sure to see her that day.
I went out twice today…this afternoon for a
couple hours, with Gracie (& Mom loved
seeing her) & then again tonight. I put the
radio to the classical station & stroked her
forehead. I miss brushing & drying her
hair—so much changed after that 2nd fall—
My poor mom. Things could have been so
different for her. As it is her pulse is still
129 and her oxygen is 85 (bad). I read
THE NEXT PLACE to her, told her I loved her
& how I so enjoyed all the good times we had.
(Mom’s last words were her reply, “I love you, too.”
And when I came back w/coffee saying “Hi Mom, it’s
Leigh,” how her sweet smile spread wide.)
I told her if she decided to go it would
be okay & that everything is o.k.
I kissed her goodbye & told her “Ill
see you later, Mom—” & “I’ll come back
tomorrow.”
I’m so tired.
For two more days my mother rallied. On Wednesday she even sat up in bed to eat a little yogurt. On Thursday, she didn’t eat or sit up. By Friday, August 18, notice came from staff that my mother was actively dying. I dropped everything to be with her as much as I could, also taking care, as best I could, to go home and sleep as much and as well as possible.
Mom died on Saturday, August 19. I spent the last seven hours of her life with her, providing support by way of touch and reassurance, brushing her hair, as I knew how much she loved to have her hair brushed. I talked with her about little things, the chickadee on the windowsill, the new puppy I’d just gotten, sang songs she liked, recited the Serenity Prayer, thanked her for all the gifts she’d given me, little things, and books. It was a profound experience for me, at first feeling a little scary—how to help my mother die?—but as I entered into it, it was transformative. I felt myself bonding all the more deeply with my mother. In one moment, I understood the mother-daughter connection existed beyond space and time as it struck me that I was alone with my mother when I was born, and I was alone with my mother as she died. It was a precious experience that I continue to view as a gift.
…Her breath became light
& infrequent.—1 breath about every 10
seconds. This included a few vocalizations
That did not seem distressed, like moaning.
A few times I thought it was over, but not
quite. She would gasp, take a deep breath,
& then pause again. The last breath was
uneventful. I wasn’t sure. I waited 10 seconds.
20. 30. One minute. “Oh, okay,” I said.
“Bye, Mom. I’ll see you later.” I kissed
her forehead & closed her eyes.
I don’t know what miracles align to cause the absolute lucidity that can occur when a loved one with dementia is so near to death. Is this the Magic of The Universe, one last, clear message or two? A kind of divine gift some might call God-given? Wherever it came from, it remains a blessing for me to have had my mother so clearly express herself and share her feelings with me, especially when she had, for months, lost this verbal ability.
If I was duped by my mother’s terminal lucidity, as though it were some cruel trick to get my hopes up, I don’t feel robbed by it. Quite the contrary. It was a great gift to me, and it remains a cherished part of my journey with my mother that, so close to the end of her life, she was able to effectively communicate with me through language.