Memory Loss and Home

Romeo can't remember anything about the home we shared for nearly five years. That's okay. I didn't expect he would. Our five years together is a recent time -- and much of Romeo's recollection of it is gone.

In fact, Romeo can no longer remember anything about any home he's lived in, except for the house he grew up in. Those memories, however, are quite foggy as well. He caught a glimpse of the living room in that home and nothing else. However, with some thought Romeo was able to conjure the emotion of happiness, being a happy child growing up in that home. He remembers being secure and happy.

During our brief conversation about home, Romeo did not mention home as sanctuary, home as haven. No, Romeo is not a homebody. He is a wanderer, a traveler. He has no home, no place. He is not tied to any one place. Romeo has all homes, all places. And the only home he remembers is the one where he has spent the most time, the place where he began his life. That's all that's left, and that is enough for him. He's happy with those memories. Wherever Romeo finds happiness these days is a precious place, whenever Romeo finds happiness these days is a precious time.

A Caregiver Lives Here Alone

In the past week or two, four or five people have said to me, "You just referred to your home as 'our house.' Who else lives there with you? Your parents? Do you have children at home?"

Oh . . . I hadn't thought about needing to change this simple wording. In chit-chatty conversations I'll casually mention our house, our home. But now there is no more we or our when it comes to our living arrangements. Romeo lives in a nearby nursing home, and I live in my home without him.

I'll work on remembering this, changing this speech pattern.

But now I wonder . . . what else must be changed? Romeo recorded the voice mail greeting on our house phone (oops, I mean my house phone). I think I'll keep it there. After all, people can still leave him messages on it. Also, many of my friends have commented on how much they love to hear his voice, his British accent on the greeting. I love it, too. It is rather sexy . . . except . . . I no longer need to call him at home because he doesn't live there anymore. I live in my home, alone.

A Caregiver's Organic Changes at Home

"Romeo, things at home are changing slowly, organically since you don't live there with me anymore."

"What?"

"I mean that for starters, I've taken over the closet, since you don't need much space there anymore."

"Oh."

"I'm taking back the study, slowly moving my files and papers back into the big desk there. I had given you the study back in December 2006 and set up a small work area for me in the living room -- remember?"

"Oh."

"When you moved in with me in September 2005, we moved things around, combined two households into one, at my place."

"Oh, yes."

"Now I'm slowly moving things back to how they were before I knew you. I'm not making a conscious effort to do it. It's just sorta happening on its own. Because...well...because you're not there anymore."

He wipes away the tear running down my cheek.

"That's okay," he says. "I'm not here either."

"You're not? Where are you?"

"I don't know. Out there somewhere in the ethers."

A Caregiver Alone At Home

Romeo now requires care 24/7. He won't be coming home. Somehow I knew that 16 days ago when I summoned the paramedics to help get him out of the house, to take him to the hospital. Romeo wouldn't move toward the door. I tried for an hour. He couldn't move for me. His dementia was in high gear, distracting him, walking him in circles.

The paramedics (six of them, I think) stood at the bedside, asking him questions, checking his vitals. As they carried him out of the room, my soul whispered to Romeo's spirit, "Do you know that you are leaving here for good?" I wanted him to notice every detail of this home of ours, this place where we have lived together since we met.

I bought this condo when I was divorced in 2003, intending it to be my swingin' single bachelorette place. Less than two years later, Romeo moved in. We had known each other for several weeks and spent every night but one together. We were married a few months later. We lived here together for a total of four years and eight months. A pittance in calendar time, yet eons in spirit time.

Today I asked Romeo if he remembered anything about home. He said he saw flashes of a room or two. He did not remember our bedroom. I prompted him. "The headboard is against a wall painted smokey purple. The rest of the room is a muted sage green. The bed is metal, antique gray/white, with grapevines hanging from the crosspieces surrounding us overhead."

"Oh, yes." It was coming back to him, but that's all he could remember. No matter. What really matters is that we are still together, still hanging out together, still talking about everything together. Being together, wherever we are, is being home.

Even so, now I am alone at home. Romeo will never be here with me again...never.

And I wonder...will there come a time when Romeo doesn't remember his Juliet? Maybe. And if that day comes, will I truly, really be alone at home? Am I really alone at home now?

Away From Home With Dementia

We're all just walking each other home.

-- Ram Dass

Romeo wants to go out for tea, out for dinner, out to a movie, out for a walk, out for a drive, just out. Out, out, out. But most of all, Romeo wants to come home. And he wants to come home...NOW.

Who can blame him? He's in a strange place, with strange people, strange food, a strange bed. He's in a nursing home that's only a four-minute drive from home, and yet he's thousands of miles from the stone and stucco and shingle building with the archway entry, the place we call home.

Two nights ago, Romeo cried as I prepared to leave him for the night. He wants to come home with me. It tore my heart out. I want him to come home with me, too. But not like this. Not when it takes two people to move him from wheelchair to bed and back, to run him through physical therapy, to help him take a shower, to help him do anything. His medical needs complicate the situation further. Quite simply, it takes a team to take care of him.

I got on my knees at the side of his wheelchair, our eyes at the same level. I held his hands and kissed them as his tears fell on my hands. In the most steady and soothing voice I could summon, I was able to say, "Romeo, more than anything I want you to come home with me." I could have cried for days just then, but somehow an inner strength urged me on. "You must stay here, my Love, until you get stronger. I love you so much that I want you to stay here and keep working with the physical therapists every day, every day, until you get stronger, until it's safe for you to be home." He stopped crying as he considered this.

"Romeo, you know how strong our love is, how tightly we're bonded. You know that most of your spirit is at home with me every night anyway. I feel you there. And do you know that most of my spirit is here with you even when I'm not physically here?" Yes, yes, he agreed. He felt it. We both became silent, content, peaceful. We kissed and held each other and parted for the night.

No, we don't know when Romeo will be able to come home. And today, feeding the not knowing, stoking the doubt, we nearly finished filling out the 26-page application to Medicaid for Romeo's long-term care, should we get to that point.

Will Romeo be able to come home, ever? We simply don't know. But we both know, without a doubt in our minds, that we are quite literally with each other constantly, wherever either of us happens to be. It has always been like this, and it will always be like this. One day we'll know whether Romeo can come home, but perhaps it isn't so important to know. Perhaps it's more important to know that our home, our sanctuary, is within us and there really is no such thing as being away from home, wherever we are.