Another Wave of Grief in Dementiaville

Another wave of grief hit me about two weeks ago. Grief over losing Romeo to dementia. Grief again. It came out of nowhere, out of nothing. I was going about my days, with purpose and content, satisfied with life. Happy much of the time. Then, without warning, it hit. Another damn wave of grief.

The wave stayed for nearly the entire two weeks. It pounded me much of that time. I was at least tearful if not actually crying the whole time. Damn wave.

When a wave hits me, it begins with tears. Sometimes I have no idea why a wave hits, unannounced. Here's the typical scenario: I'm doing a chore around the house, or I'm driving, or I'm out and about doing errands or any number of unexciting, pleasant things. A wave can hit immediately after I've visited Romeo, but usually not. It prefers to get me when I'm not looking. Damn waves.

I usually don't know why I begin to cry. I don't automatically assume that I'm grieving for Romeo, just in case there's something else deserving of my tears. But there isn't. Things are going well in the other areas of my life. For as much sadness and grief I experience over Romeo, there is even more happiness and joy in my ordinary days. So I'm grieving for Romeo, for our lost life together. Damn waves of grief.

My grief then turns me toward thoughts of Romeo. I think of him every day, of course. When I'm not in grief, these thoughts have pleasant emotions attached to them. I'll recall something funny he said, or remember holding his hand on one of our walks, or think about one of the many times we went out for tea. In contrast, when I'm in grief, my thoughts of Romeo take a sad turn. The emotions with them wail their presence, and that, in turn, causes the floodgate to open, and there seems to be no end to my tears. And that is exactly how it is with this current wave.

Okay. So crying is one of my typical behaviors in grieving. Duh. My other dominant characteristic in grief behavior is that I become stuck energetically. There are toilets to be cleaned, floors to be vacuumed, a blog to write, a drum to be played, laundry to be done. Do I do any of it while I'm grieving? Hardly. Instead, I sit and stare at the wall. I sit and stare at the computer screen. I sit and stare at my latest art projects, at the dishes in the sink ready for the dishwasher, at the piles of paper on my desk, at the books on my nightstand waiting to be read. I do nothing else. I sit. I sit and stare. And oh yes, I drum. I can always bring myself to drum. But more about that in some other post (or not).

I'd like to think that during this time of blocked energy the grief processing is happening below the surface, where I can't quite sense it. And so I surrender to the grief and let myself sink as deeply as I need to sink.

Big Blue Eyes in Dementiaville

It's late afternoon. Romeo and I chit-chat. We are in his room. He is sitting up in bed, and I am in a chair borrowed from the ice cream parlor in the building (there is a shortage of chairs for visitors).

We sip on our usual drinks -- steamed soy milk with sugar-free hazelnut flavoring, light foam. Romeo asks for a cookie. I open the drawer in his nightstand that contains his goodie stash and choose two European-style biscuits covered with dark chocolate. I feed him a bite of cookie, then a drink of the soy milk. He can no longer feed himself or lift a drink to his mouth, so I do this for him. He happily munches the cookie and drinks the soy milk through a straw.

We talk about the weather, the food in the nursing home, his cold symptoms (a new development), what's going on with the people we know, the routines of everyday life. This time, it's a pleasant visit. He doesn't complain about situations that his dementia has imagined, twisted, or embellished. There are no stories for me to check on with his nurse or other staff members. He doesn't cry, he is not frustrated or agitated. He is relaxed, content, peaceful. This, in turn, makes me relaxed, content, peaceful. He is fine. And because he is fine, I am fine.

When Romeo finishes his cookies and soy milk, he asks to lie down. I clear his bed tray, move it back to its place against the wall, and go through the routine of adjusting his bed so he is lying down. I lean over and give him a kiss. I back away from him and say good-bye. He smiles and says, "I love you." I reply in kind, and we kiss again. I turn and head out of the room. Nearly to the door, I turn around and see him -- his eyes, bluer and larger than ever -- looking at me with such love and innocence and trust. I sigh, drinking in his essence -- this strong, unconditional love he offers to me freely -- and wonder if he can feel me giving the same to him.

Asking for Money in Dementiaville

Planned Parenthood, Foundation for International Community Assistance, Greater Yellowstone Coalition, Wildlife Conservation Society, The Trust for Public Land, Save Tibet, Doctors Without Borders, etc., etc., etc.

These are some of the organizations that Romeo gave money to when he was able to care for his own finances. There are about 40 other organizations that Romeo contributed to.

Throughout our time together, he trimmed the list down to only one organization. I won't say which. Just suffice it to say that all of the other organizations still send him requests for money. Every day I receive a stack of mail consisting almost entirely of requests from these various groups. Every day I go through the unusually large stack of mail that's delivered, every day resenting the fact that I must do this. Most days, there is only one or two pieces of mail for me (mostly bills) -- some days, not one envelope is for me.

Lately, however, I've noticed that this stack, the daily stack of mail that comes every day, which used to be about two inches high, has now dwindled to perhaps half an inch tall. That's good for the trees, the environment. It's good for me, too. I do tire of this daily reminder of Romeo's changed condition. Sometimes it's painful, the daily visions that come forth of Romeo and the joyful time he spent every day going through this stack and dutifully writing checks to each of these organizations. How he looked forward to the mail every day, and how he enjoyed donating his money to them. At other times, these memories bring a smile to me. Recently, though, they only make me yearn for the old days when Romeo was able to function normally, for the old days before dementia had a strong hold on him, for the old days when he lived here with me.

Part of me looks forward to the day when the daily mail brings no mail to him at all. When all the envelopes are addressed only to me. When the requests that come to Romeo from charities and humanitarian and environmental organizations no longer come in the mail. When they stop coming all together. And then there's the part of me that dreads the day.

Do You Know Who I Am?

I enter Romeo's room, once again not knowing what to expect. Again I pull a chair to his beside, make myself comfortable. He smiles, says hello.

I ask the burning question, the inevitable question. "Romeo, do you know who I am?"

He is amused. He chuckles. "You silly goose. Of course I do!" He laughs again.

I have to hear him say my name...just in case he thinks I'm someone else. I have to know for certain that he really, really, really knows who I am. Besides, I love the way he says my name. "Romeo, would you please say my name? You know how I love to hear you say my name."

He takes my hand in his, searches my eyes to make our connection deeper, and says, "Juliet, my beloved wife, the love of my lifetimes, I love you."

He continues. "Juliet, in our next lifetime, we must promise each other that we'll be together all our adult lives."

"Yes, and that we'll be healthy, no dementia."

"No dementia."

We remain still and silent for quite some time, each of us lost in our private thoughts of a life together, sans dementia.

Coming Out of the Fog in Dementiaville

Once again I walk into Romeo's room at the nursing home, pull a chair to his bedside. I catch his gaze, smile, hesitate to ask the question but forge ahead with it anyway.

"Do you know who I am?"

"You are Juliet, my wife."

Yes, yes, yes!!!

Romeo continues. "I know you are my wife, but I have no memories of us being together."

"It's okay, Romeo." I smile, my heart filled with love for him. "Is it okay if I hold your hand?"

He reaches out and takes my hand, squeezing it gently. He lets me kiss him. This is beautiful, and it is enough for now.