A Caregiver's Daisy Chain of Grief

All summer she scattered the daisy leaves;
they only mocked her as they fell.
She said: "The daisy but deceives;
'he loves me not,'
'he loves me will,'
One story no two daisies tell."
Ah, foolish heart, which waits and grieves
Under the daisy's mocking spell.

-- Helen Hunt Jackson, the Sign of the Daisy

Another day of letting grief go. It came unbidden, on its own. It filled my day, spilling over into the evening. My emotional faucet opened, and it flowed throughout the daylight, twilight, and dark. My personal river of tears, shedding grief. Pure grief. Then, as quickly as the faucet opened, it closed.

I still don't know what it is specifically I'm crying about. Certainly it's about losing Romeo to dementia, bit by bit. Certainly it's about us not being able to live our lives together. Certainly it's about saying good-bye. He loves me not -- how could he leave me like this? He loves me will -- he is such a sweet, gentle man to leave me quietly, slowly.

As the daisy (or day's eye) opens and closes with the sun, so my faucet of grief opens and closes like the kitchen tap. When it's running open, my tears could seemingly fill buckets. When it shuts off, I am dried up, empty, and wonder how much more is beneath the surface. While I want all of it to come out, I also wonder when or how I'll be able to live a "normal" life again.

Like many young girls, I plucked the petals off of daisies and asked those two questions incessantly: He loves me? He loves me not? Usually the daisies proclaimed that he loves me, even when there was no "he" involved whatsoever. Were those young girl "he-less" times foreshadowing my now? Maybe...maybe not. It hardly matters, really. I simply need to let it all out, however long that may take.

A Caregiver's Birthday Gift

Romeo was in bed when I arrived this afternoon. He was awake, lying quietly, his bright and alert eyes scanning the room. He smiled when he saw me.

"Hello, my Love," I said, leaning over to hug him. "Would you like to get up?" He nodded, and I asked him to press his call button.

As we waited for assistance, I said to Romeo, "Sweetheart, you wanted me to remind you of something today."

"Oh, what?"

"You wanted me to remind you that today is my birthday."

"Today is your birthday?"

"Yes."

"Happy birthday, my dear." And he reached out to hold my hand.

Just then, one of the certified nursing assistants (CNAs) came to get Romeo out of bed and into his wheelchair. As he was standing, just before moving to his wheelchair, he asked me to come closer to him, to stand in front of him. I held his arms and moved closer as the CNA let go of him and backed away.

Romeo said to me, "Come here." He put his arms around me, and I held and steadied him as he worked to maintain his balance. He, arms clasped around me, pulled me closer into him. I could feel his heart beat, sending loving energy to my heart. We stood in that embrace for several minutes. I soaked it in, gave it back to him, circulated it, and put my entire body into steadying him whenever he seemed off balance.

But mostly, I soaked it in. Romeo is seldom in a standing position for any length of time. I hug him while he sits in his wheelchair. I don't remember the last time we embraced while standing, while on equal ground. This afternoon's hug will remain in my memory, the memory of my cells, for a long, long time. By now he has forgotten all about it. For me, it's the best birthday gift he's ever given me.

Romance in Dementiaville

I have found the paradox,
that if you love until it hurts,
there can be no more hurt,
only more love.
-- Mother Teresa

Romeo says that he thinks about me often during the day. Of course, I think of him throughout my day as well. But it feels sooooo good to hear him say that he thinks about how soft my skin is, how he loves to gaze into my eyes, how he loves the sound of my voice as I read aloud to him, how he loves my feminine energy and openness and vulnerability.

That Romeo can and does think of me when I'm not with him is a juicy raspberry to dementia. He remembers something, someone, me! He is clear about our love. He is secure in it. He is present in it.

On the flip side, we have both been hurt by our love. It hurts that Romeo is in a nursing home, without me. It hurts that I am out in the world, without him. He is afraid of what the dementia of his future will do to him. I am, too.

Because we love, Romeo and I, we hurt. Because we hurt, and because that hurt becomes so painful that it's hard to bear, it transforms into love. Romeo and I give each other love, we receive one another's love, and we both magnify the love we feel. We breathe it in and then magnify it out into the world. We stand on firm, fertile ground, rooted deeply into our beings, and we love each other, we love hurt, we love love. Not to love is unthinkable, painful. Being love is all we can do, and it is enough. More than enough. We cannot bear too much hurt, but there is no such thing as too much love.

A Caregiver Cries

When you are sorrowful
look again in your heart,
and you shall see that in truth
you are weeping for that
which has been your delight.
-- Kahlil Gibran

I began to cry yesterday morning. I simply started crying yesterday morning and didn't stop until 3:00 a.m. today.

I don't know why, don't know the cause of my tearfulness, although it probably had something to do with the grieving process, my grieving process in losing Romeo to dementia. I'm grieving the loss of my husband to dementia, grieving the loss of his presence at home, grieving the loss of the future we had anticipated before dementia, grieving for his pain and suffering, grieving for the love of my lifetimes.

Nothing in particular sparked my tears. Nothing in general sparked my tears. They simply came, flowing strongly, loudly. No thoughts, just tears.

I let them flow. I sat cross-legged on the couch with a box of tissues, and I cried. I moved to the dining room table, and I cried. I got up and moved to the desk in the study, and I cried. I jumped onto the bed and hugged the pillows, and I cried. I sat cross-legged in the comfy, overstuffed chair in the study, and I cried. I went to visit Romeo in the nursing home (probably not a wise move), and I cried. I came home and sat cross-legged on the couch with a box of tissues and started the cycle again. Nothing to do but let it out. It kept coming. I soaked in my spa tub and cried into the lavender aromatherapy bath. The tears kept coming, my sobs matching the rhythm of the water spouting from the jets.

Finally, in the wee hours of the morning, as quickly as it started, it stopped. There were no more tears. They were gone. I was quiet for the first time that day. And I felt better. I finally felt better. The sadness and grief were gone...for now.

Tired and spent, with nothing more to give, I crawled into bed, under the comforting pressure of the blanket and the soft sheets. I ran my hands through my hair, massaged my face, neck, and head. I thought of my sweet Romeo and wondered what we could have been thinking to stage such a difficult life as this for ourselves. And then exhausted, body pulled into a fetal position, I slept the long and dreamless sleep of a newborn baby. Held, cradled, showered with unconditional motherly love, I slept soundly for five hours then woke refreshed to a new day.

Feeding Time in Dementiaville - Part 2

Romeo complained today again about not being able to feed himself. He says he can't put food on his fork or spoon and lift it to his mouth.

"Someone has to feed me all the time now," he tells me. He is fine with this. He almost seems to be proud that someone must feed him now.

A few minutes later and I am able to slip away to talk to his nurse about this. In Romeo's private brand of dementia, once he stops performing an action (like tying his shoes), he loses the ability to do it ever again within a matter of weeks.

I visited Romeo at dinnertime last night, and I watched as he fed himself until he was full. Although I'm sure that Romeo can still feed himself and does, I am a ball bouncing back and forth between Romeo in Dementiaville and his nurse sitting at the desk.

"No, no," she says. "He tells us that he can't feed himself, but he can. I tell him that he can do it, and we leave him be. He feeds himself fine. He makes a little bit of a mess, but that's okay."

And I agree. We help him by doing whatever is necessary so he can keep his remaining skill as long as possible. Romeo's ability to feed himself will go away soon enough, even with this prodding.

Feeding Time in Dementiaville - Part 1