The Grapes of Dementia

Romeo lying in bed. Me sitting on the floor, beside him. It's 8:00 in the evening and I'm visiting for the first time today.

Nothing to do but munch on some red grapes I brought from home. I pull one from the stem and toss it to Romeo, thinking he'll try to catch it in his mouth. But no, the thought doesn't occur to him. We giggle, and I pick up the grape that landed ungraciously near his call button, and try again.

This time I'm only a couple of inches away from his mouth. His eyes smile, and he opens his mouth like an eager baby bird waiting for a regurgitated dinner. I toss the grape in, and this time he "catches" it. Now it's his turn. I pull another grape, hand it to him, and he tosses it toward me. It's a foul ball, too far off field for me to catch in my hand, let alone with my mouth. No matter. I pull another and hand it to him. This time he feeds it to me.

We continue like this, taking turns "tossing" grapes to each other, for a few minutes until Romeo tires. He wants to sleep. I get up from the floor, dust myself off, and lean over his bed for a good-night kiss.

On the four-minute drive home, I am smiling and content. All is well. Grapes = abundance. Love = abundance. Dementia = abundance.

Behind Blue Eyes, or Divine Dementia

The following essay is about an "aha" moment I had in November 2008 while taking care of Romeo. It appeared in the July/August 2009 issue of Viha Connection: The World of Osho and has been edited for this blog.

At the left is an interpretation of what I saw "Behind Blue Eyes." Painting by me.

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Romeo is a sweet, sweet man. He is the kindest, gentlest, most loving person I have ever known. I would say that about him even if he weren't my husband. But there's something else you need to know about Romeo: he has dementia. Over the past three years we have witnessed a significant, progressive decline in Romeo's cognitive functions. It affects his thought processes, reasoning, memory, attention, language, and problem-solving capabilities, as well as his balance and motor skills. He requires frequent help and some supervision.

I could easily spend the entire day and evening helping Romeo, and I often have. While I am happy to be my husband's memory, his cook, waitress, driver, laundress, administrative assistant, psychologist, manicurist, IT specialist, physical therapist, nurse, social director, and pack mule, being his everything is not good for either of us. I simply cannot take care of all our needs, the both of us, and -- worse -- I can't seem to stop trying. My frustration level at times is over the top, and breakdowns happen too frequently for my comfort level.

One day Romeo's nearly constant requests for non-urgent help were getting to me. At his latest request, I paused, took a cleansing breath, and calmly looked into his eyes. Then it happened. I saw something I had never seen there before. In a nanosecond I took in his cinnamon-colored beard and hair, his reddish nose and cheeks, his blue eyes, but it wasn't Romeo looking back at me. Not at all.

What was looking back at me was the Divine, the indescribable Divine, saying hello and showing me that it -- that the DIVINE ITSELF -- is Romeo, that Romeo is the DIVINE ITSELF. Every cell in my body vibrated, jumped up and down in celebration of the yes-ness of it. Every molecule shouted excitedly, "Romeo is the Divine! Romeo is the Divine!" Yes, it is true that each one of us, everyone and everything in the world, is also that same Divine presence itself. I knew it. I experienced it. Without a doubt, it is true. Exhausted, I sat down and cried from the impact, and the totality, and the aha-ness of the moment.

Every day since then, I see, experience, and know in each of my cells that every request from Romeo -- every small or time-consuming request, every large request, every request he merely thinks -- is really a request from the Divine. Everything he asks is coming from the Divine. The Divine is asking me for help, and I am humbled and honored.

Later I realized that on a deep cellular level what I experienced was the Zen spirit that spiritual teacher Osho talked about in Zen: the path of paradox, Volume 1, Chapter 1. He said the Zen spirit:

transforms the ordinary into the extraordinary. It transforms the profane into the sacred. It drops the division between the world and the divine.

Indeed it does.

The Divine, the Ultimate, the Universe, God, Existence, revealed itself to me through Romeo that morning. And although there are still challenges in our daily lives, I am lighter in the knowing, in having experienced Romeo as the Divine. That revelation and its afterglow remain vivid, and every day I marvel at and am wildly grateful for this gift. Romeo is truly a sweet, sweet man. He is the kindest, gentlest, most loving person I have ever known, and divinely so.

The "Year Ago" Game, or the Changes Wrought By Dementia

Five years ago, Romeo and I hadn't met. He was recovering from open heart surgery. I was in the process of deciding to dump my then-boyfriend. I took to sitting in the chaise lounge on the veranda, Juliet dumping a suitor, watching the leaves rustle on the shade trees that nearly reached to my second story, looking out over the park, the open space, the golf course beyond, watching the clouds pass, the birds chasing after them.

Four years ago, Romeo and I had been married for six months. What a joke! Seemed more like 600 years -- in the sense that it felt as if we had always been together. That summer we took many walks and hikes. Our favorite places to walk were the Boulder Creek path and all over Rocky Mountain National Park. We could walk for hours, and we did, hand in hand.

Three years ago, Romeo had been officially diagnosed with dementia for about nine months. We walked still, up and down the Creek path, all over Rocky Mountain National Park, and many other places.

Two years ago, I had been laid off from my job for seven months. The lay-off was a gift. That summer Romeo and I walked, although Romeo's strength was declining. We didn't walk as far. So we ramped up the frequency of our second-most favorite activity: visiting bookstores and tea shops. Coffee shops, to be exact. Romeo is British, and you can't take the tea out of him. We spent anywhere from one to three hours at a tea shop, talking and reading. That year, I read 62 books. We don't know how many Romeo read because he didn't track them.

One year ago, Romeo was able to walk around the block once, twice on a "good" day. That year, last year, Romeo had trouble concentrating on what he was reading. We stayed at the tea shops for 40 minutes max because of it. We spent most evenings last summer at home sipping on herbal iced tea and sitting together in the glider on the veranda. We were Romeo and Juliet, on our private balcony, watching the leaves rustle on the shade trees that reached to our second story, looking out over the park, the open space, the golf course beyond, watching the clouds pass, the birds chasing after them.

So far this year -- right now -- the glider sits idle, empty. No one is sitting in it. Romeo has been living at the nursing home, away from our home, for nearly a month. He will never return to sit with me in the glider. He won't be present on our private Romeo and Juliet balcony. He won't be watching the leaves rustle on the shade trees that reach to our second story. He won't be looking out over the park, the open space, the golf course beyond. He won't be watching the clouds pass, the birds chasing after them.

Despite all that, our glider will still be there, even if Romeo isn't. And the chaise lounge? It will still be there, and maybe I'll take it up again. But the glider? Will I sit in our glider this summer? Maybe...maybe not. This, however, is certain: even if I do sit in that glider, our glider, it will always be empty. I miss my Romeo. I am Juliet, alone again, waiting for Romeo to appear on our balcony. Longing for Romeo to appear on our balcony.

Open Letter to the Universe from a Caregiver

Dear Universe,

On behalf of the people throughout the world who live with dementia and the people who require help with daily living, as well as their caregivers and loved ones, this request comes from the heart of our hearts, from the center of the center of our beings.

We have been entrusted with the important and difficult task of taking care of a loved one. We work long, hard, intense hours, and we do it because our loved one needs us to, wants us to. We do it because in one way or another, you asked us to. This is by far the most difficult thing many of us have ever done, will ever do.

So please, help us. Help us to see clearly. Help us to remember that our intention in taking care of our loved ones is to make sure they are the ones who are comfortable, that they are the ones who need attention, that they are the ones who need understanding. And help us to remember that we are the ones who also need to be taken care of, that we are the ones who must be rejuvenated, that we are the ones who must love ourselves more than anyone else. And help us to remember that unconditional love goes a long way in caring for our loved ones, as well as ourselves.

Help us to remain the solid rock foundations that we are, to hold our ground and be ruthless when advocating for our loved ones, to be adept at navigating the steps that make up our days. Help us to see that the disease itself is what makes our loved ones sometimes act in ways they would never have done normally. Help us to be forgiving of our loved ones, to be forgiving of ourselves, and to be forgiving of others who do not understand our plight or the plight of our loved ones. Help us to breathe deeply and to know we are breathing in your love, the love that permeates the Universe.

And as we go about our day, please wipe away our tears and vanquish our frustrations. Remind us of the honor we have in caring for our loved ones. Help us to know, to know within each cell of our bodies, that whenever we respond to a request from our loved ones, each time we help them tie a shoe or button a shirt or pick up a fork, help us to see that we are actually serving you, the Universe, that our loved ones are the Universe, just like we are the Universe. We are serving the Universe.

Finally, help us know that we would do it all over again in a heartbeat, from the heart of our hearts, from the center of the center of our beings. We would do it again.

The Aftermath of the Retreat, or How Dementia Can Really Mess Things Up

There was something horribly wrong surrounding Romeo. I sensed it just before I entered his room at the nursing home, in the hall before I ever saw him. All that day, I had been at a retreat in the mountains above Boulder and hadn't been able to come to see him until well after his dinner time.

To help Romeo remember that I wouldn't be able to see him until late on retreat day, to prepare him for my delayed visit, we worked together for a week before the retreat. I drilled him on what was likely to be my arrival time that evening. This technique had worked before. It was the only one that did anymore. That is, until now.

I entered his room, the partially drawn curtain between Romeo and his roommate allowing a view only of Romeo's feet and legs. He was tucked under the covers, seemingly in bed for the night, much earlier than usual. As I came closer, I saw that the bed had been lowered so it sat about six inches off the floor. A mat had been placed on the floor beside the bed. This is the typical evening arrangement, precautions to prevent any injury if Romeo happened to fall out of bed during the night.

He saw me come to the side of his bed. And he glared at me. Glared at me. Daggers shot from his eyes, heading my way, hundreds of tiny daggers. I took the hit. I took all of them. And I took them gladly because I knew, without a word having been spoken from either of us, that Romeo had forgotten that today I would be late. He did not remember that I would be in the mountains and not be able to see him until later in the day, much later.

The daggers pierced my skin, traveled to my heart, my stomach, my lungs, my throat. No part of my body escaped injury. The wounds hurt; I was in great pain. But I also knew that Romeo's wounds hurt more, that his pain was much greater. His pain manufactured and then launched the daggers that attacked me. His pain was the wound and hurt of abandonment. He thought I had left him that day. He thought I was gone for good, would never come back. He was frightened and angry, and this pain had been simmering in him all day. He was a pressure cooker of loneliness and fear, and it was now time for him to blow and for me to clean up the mess.

We sat together as his hurt and pain and fear and my hurt and pain and fear became acquainted, until we all were simply one happy family of hurt, pain, fear, loneliness, abandonment. We sat, my hand holding his, each of us crying like abandoned kittens, each of us forgiving the other, forgiving ourselves, forgiving Romeo's dementia, forgiving the Universe. Until finally, finally, finally...until finally, we laughed.

The Boys Visit Romeo in the Nursing Home

Romeo forgot that my grandchildren, Justin (11 years old) and Jason (6 years old), were coming to visit him in the nursing home, so he was happily surprised to see them. Lack of memory sometimes has advantages. In Romeo's world, there is often no anticipation of an event, no inkling that a pleasant experience is about to happen. When it catches him by surprise like this visit did, his experience is that much sweeter.

The exuberance of children, no matter the event, can permeate an entire area. No doubt, Justin and Jason were excited to see Romeo, and the entire nursing home knew it. Romeo and the boys became instant celebrities as the residents, visitors, and staff focused their attention on them. They walked into the building and down the hall, unknowingly spreading their joy as a fairy sprinkles her magic dust. Everyone they passed burst into a colorful balloon bouquet of joy, their faces floating in the airiness created by the boys' presence.

We brought Romeo gifts: two new pairs of linen pants, a bar of dark chocolate, steamed soy milk, and an oatmeal raisin cookie. These days his wants are simple, yet the pleasure he receives from them is disproportionately immense. The pants are tucked away, waiting their turn to be laundered and worn. The chocolate and milk and cookie have been consumed. Only the joy remains.

Later, having dinner with Romeo seated at a table with other residents, the entire room was abuzz with their presence, all three of them. Romeo, the proud grandparent, and Justin and Jason, the innocent reminders that life, no matter where you are in it, no matter where in the world you are, no matter what age you are, and no matter what your present mood, life...well...life is sweet.

Flying With Dementia

I gather Romeo into my arms, like La Pieta, the Madonna cradling her crucified son. Romeo, however, is very much alive, so we slowly lift off from the mountaintop, our eyes pointed toward the edge of the metaverse. I only need to think a direction, and we head that way.

We travel quickly, silently, effortlessly, safely. The twilight night lights of Boulder recede and give way to the night lights of the Milky Way. We watch the sun rise on the other side of the globe as it sets here. And we think, "Up, let's continue up, toward nothingness."

Soon our bodies fade, first becoming a heavy indigo fog, then a transparent violet mist, and it's no longer clear who is cradling who. Our new mist-like bodies of light blink on and off, but not simultaneously and not completely. We twinkle. We are glitter, strewn about like bird seed.

The stars, the planets, cold dark matter -- all greet us, and each lets us pass, and each catapults us faster and faster toward our destination. But there is much space to cover, and it will take a long time to get there...wherever "there" is.

Finally, far from everything, in the space between space, we are alone. With no light visible except our own twinkling energy bodies, and with only the other to see and sense and touch, we begin our slow dance. We are smoke from every campfire ever lit and flames from every forest fire that ever burned. Our energies undulate randomly, unceasingly, completely. We burn with the passion of every new love since the beginning of time and give birth to new universes never conceived previously. We play and create. Play and create. Play and love.

Time to return. We are prompted by a force beyond ourselves. A cosmic tap on the shoulders. Time to come back. I open my eyes and see Romeo lying in his bed in the nursing home. It's now dark outside. We really flew away, and we really returned. It was not my imagination. We really flew away. Rather, we flew into and through and with each other. We locked eyes with our situation, with Romeo's dementia, and flew. We saw everything, and love took over. We, Romeo and his Juliet, simply rode along, flew along on this joyous ride of love.

Weeding and Reading in Dementiaville

There was a wall of books that occupied our living room. It was more of a library than a living room, really. We liked it that way. But then last autumn, after revamping a space that I now use as an art studio, we were hit by a decluttering bug.

Or shall I say that I, Juliet Archer, caught the decluttering bug. It spread through the entire condo...well, except for the three tall bookshelves in the study that I haven't touched yet. By the time the pesky virus had run its course, we had donated more than 600 books to our local library. In the library biz, this process of clearing out books that have outlived their usefulness is called "weeding." Yep, we probably could have opened a bookstore with all those weeded tomes.

And yep, Romeo and I share a love for books. The Robinson Crusoe from his childhood is on the shelf commiserating with my childhood copy of Honey Bunch: Just a Little Girl. His Treasure Island is the buddy for my The Trolley Car Family. But that's where the differences end. In our separate adulthoods, we read many of the same books. After we met and compared what we had and hadn't read, we each caught up to the other, reading the books that the other insisted we needed to. And we were right.

When we were a new couple, my days were occupied with working from home. Romeo, being the retired gentleman with time to spare, would venture into Boulder and hit the tea shops, library, and bookstores. He often would come home with a new book to share. Duh. One summer afternoon during our first year together, he arrived home, bubbling and gushing and nearly jumping up and down for joy. He was particularly excited about a new book he purchased, The Translucent Revolution: How People Just Like You Are Waking Up and Changing the World, by Arjuna Ardagh. Romeo was right. It's a great book.

Although many books have passed between us the entire time we've been together, two years later, it was my privilege to return the favor with another book by Arjuna Ardagh, Awakening Into Oneness: the Power of Blessing in the Evolution of Consciousness. "It's what we've been waiting for all our lives," I told him. "This is it. It's finally here. It's time." He gobbled up the book as quickly as I did and told me, "You're right." Duh. It launched us onto the spiritual path we've been on ever since. That path showed both of us the truth around Romeo's dementia. It has shown us how to meet it head on, how to live with it in our faces every day -- and now, every moment of every day -- and how to love every minute of it. That dementia hanging around Romeo simply IS. It's there. So we acknowledge it and what can come of it. We sit with it. We let it be. Because of this, the two of us have had numerous awakened moments. Romeo, my awakened love.

From the beginning of our life together, Romeo and I have read out loud to each other. His soft, British-accented voice would lull me to sleep each time he read. As it became more difficult for him to read aloud, I became the sole reader. I read children's books to him. Our favorites were Wynken, Blynken, and Nod and The Night Before Christmas. We read Love, Freedom, Aloneness: the Koan of Relationships and Being in Love: How to Love With Awareness and Relate Without Fear, by Osho; How to See Yourself As You Really Are, by His Holiness the Dalai Lama; and many more, too many more to mention.

For us, reading out loud is more than me reading and Romeo listening. It's an opportunity for us to discuss what we're reading. We stop whenever one of us wants to, when there's a question for the other -- what do you think about this point, or I don't think that's true and here's why, or ...but what about...? Our discussions sometimes go on for an hour or more. Funny how the dementia does not keep Romeo from these discussions. He is so very present, without any signs of a foggy brain. He is right there, in the thick of an intellectual or spiritual idea, dishing out his usual wise and witty views and takes on the topic. Romeo, my illuminated sage.

These days I choose books to read aloud to Romeo not only by subject matter but by how easy they are to read aloud. We're currently reading The Fifth Agreement: a Practical Guide to Self-Mastery, by Don Miguel Ruiz and Don Jose Ruiz. It was a Christmas gift from a friend. I started reading it to Romeo while he was in the hospital nearly three weeks ago, after the fall, as he suffered from a psychotic type of anxiety. The sound of my voice helped to soothe him, and I read to him even while he slept. Since he's now on the other side of that anxiety, we can once again talk about what we've read. And talk we do. We've always been able to talk to each other about everything, and we do. EVERYTHING. As it looks now, we should be able to finish reading the book in the next few days, barring any lengthy discussions.

Next up is a book of erotic myths and legends. We read a few stories from this book last winter, and we plan to read another story or two and then move on to another book. These erotica myths and legends are stories that go deep into passion, into meaningful love, but can still raise an eyebrow or two. They contain some of the unexpected but on a higher level and it's handled with more class and grace than what's usually touted as erotica. These stories are worthy of a Romeo and Juliet. And, if I may add, Romeo and I haven't had any discussions while reading these stories. It's just plain heart-thumping fun.

The past two nights, I've read to Romeo as he lies in bed, ready for a good night's sleep. I hold his hand and read. His eyes are closed, he looks comfy tucked into his bed, snug and warm. Peaceful, content. Free from fogginess, confusion, frustration. No real need to speak. Soon, he is breathing the slow, measured breath of sleep. Romeo, my enlightened angel.

I gently close the book, withdraw my hand from his, kiss him, pack up his dirty laundry for another midnight run of the washer and dryer, turn out the light, kiss him again, and leave the building. One of the last visitors to leave (again), I get in the car and point it to the east. Four minutes later, I'm home. Setting his laundry bag on top of the washing machine, I marvel at how I have been gifted with Romeo's awakened, illuminated, enlightened presence. And then I turn on the washing machine, add detergent and fabric softener, remove his dirty clothes from the laundry bag, check the pockets for who knows what, and toss the clothes into the washer.

Hmmm. Oh, boy. Do you see where this had led? I truly did not see this coming until now. Yes, I marvel at how I have been gifted with Romeo's awakened, illuminated, enlightened presence. Please excuse me, but it looks like the famous Zen saying is really, really true. No doubt about it. After enlightenment, the laundry.

With that, I'm off to bed.

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?

Feeling Dementia

I've often heard that when a family member has dementia, everyone in the family has dementia. Not quite true. Being Romeo's caregiver, I often find that if I think like I don't know how to function in the world (how to sit down in a chair, how to get in a car, how to walk down the stairs)...if in my mind I go through each step to complete a task and then verbalize each step to Romeo one by one, each small step of the way, then maybe he'll be able to do it.

Not always. I have been known to quickly grab a chair to put under him as he lowers himself into thin air. We have spent 20+ minutes at a time trying to get him into the car. Once, descending three stairs to leave a restaurant, we became so tangled up together, as if we were teenagers playing a game of Twister, that Romeo summoned the wait staff to help. Thank goodness his mind was present, as my brain was occupied going through the details of how to talk him down.

We don't know why Romeo has dementia. His doctors tell us that his dementia is not due to frontal lobe epilepsy, or Alzheimer's disease, or his ever having had a stroke. During the last three and a half years, we have witnessed a significant, progressive decline in Romeo's cognitive functions. Dementia involves not only memory, but thought processes, reasoning, attention, language, and problem solving capabilities, as well as balance and motor skills. These days, Romeo requires nearly constant help and a whole lot of supervision.

At this point, Romeo exhibits all the signs of moderate dementia and most of the signs of severe dementia. If you're interested in knowing more, check out the Epigee Dementia page.

I've often asked Romeo what dementia looks and feels like to him. He has difficulty describing it. I can't imagine it, as most people can't imagine it...not really. But I was determined to find out what dementia feels like. I wanted to find out what Romeo experiences, what he lives with every moment. My search for an answer came in the form of this short video:

Family Caregiving and the Virtual Dementia Tour

What do you think? Would you like to live with dementia, with such limiting and disturbing distortions? Are you willing to experience virtual dementia, just for a few minutes? The thought that Romeo (and thousands of others) sees the world like this through the lens of dementia -- stumbles through life like this -- every moment of every day -- well, it nearly made me physically ill. I could barely finish watching the video. How could I live if I had dementia? I don't know how people with dementia wake up every morning and face the daylight simply to do it all over again, to know that it will only go down from here.

Understanding what Romeo sees, what he hears, what he perceives in his dementia has changed how I feel about him. I love him still -- no more and no less than before. But now there's something else. Now there's something that wasn't there before. Or maybe it was there all the time and I just noticed it. Or maybe I noticed it but forgot. How to describe it?

It envelopes me and overwhelms me, inspires and enlightens me. It permeates every cell in my body and carries me to the edge of knowing. I am in admiration, marvel, reverence. This man, Romeo, wanders through dementia with strength and bravery. He meets everything in life head on-- even his dementia. This Romeo is the radiance of the sun itself, the radiance of the lamp and the beacon. Illuminating himself, he soaks up the light and energy and reflects it back to everyone -- living or not. No exceptions. He is divinity itself, pure and graceful. I am in awe and wonder. How does one begin to thank the Universe, the Metaverse, for as rare a gift as that?

A Caregiver Plays in the Tub

Ahhh...tonight I'm sunk deep in the jetted tub. The gentle glow of candlelight combined with the spicy, balsamic scent of frankincense bubble bath sedates the stray thoughts traveling across my awareness. They are transformed into a silent movie -- a black and white, curiously melodramatic spectacle, a surreal oddity that could well be from another universe.

Those certainly aren't my thoughts, are they? I watch as they float away, upward with the flame of the candle, upward and eastward, back to North Africa where the essence of the frankincense resin, smelling slightly of conifer, returns to the Boswellia tree that weeped it as tears.

Frankincense...it's my sedative of choice. Everything is okay.

The Wrong Caregiver

One day not long ago, after an especially frustrating day taking care of Romeo, I told him that he chose the wrong person to be his caregiver. "I'm terrible at it," I admitted in defeat.

"You're a great caregiver!"

"No, I'm not."

"Look," he said, "if the situation were reversed -- if you, my beloved Juliet, were the one with dementia and I, Romeo, were your caregiver . . . well, quite frankly, you'd be dead by now."

He was serious. He was also correct. What a pair we are.

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.

The Eternal Embrace of Memory Loss

The Story

This skeleton couple, locked in what's been called an "eternal embrace" are the Romeo and Juliet of the Stone Age. Could they be the Romeo and Juliet of Dementiaville? Could they be Alan and Karen Wright -- in a previous life, perhaps?

Romeo has said repeatedly that the next time around, he wants us to be born on the same day and year so we can spend our entire lives together. He has planned the details. We will know each other from birth but not be related. He wants to be the man again next time and wants me to be the woman. We will be married young, no children. We will live on the water, the Mediterranean. It will be the Golden Age, and we will have no problems or difficulties to deal with. There will most certainly be no dementia.

The power, the strength, the bond of love transcends physical life. We know this. In the year after our wedding, people would ask me how long we'd been married. "Six months," I'd say, feeling as if I were lying. It had not been six months at all. We've really been married for 6,000 years. Yes, that many years -- in the good sense. We've always been together, always. And we always will be, always. We know this for certain. Dementia can do nothing at all to change that.

Slow Improvement in Dementiaville

Do The Gratitude Dance with us because . . .

Since the first few days after the fall, Romeo's condition has been improving. Slowly, the psychotic anxiety, hallucinations, and muscle spasms have all dissipated. We are grateful. Remnants of them remain so that he operates now at a lower baseline. It's too soon to tell exactly where, for now, the bottom is located.

One week after his fall, Romeo was discharged from the hospital and transferred to a skilled nursing facility (nursing home) four minutes from home. We are grateful. He is receiving physical therapy, occupational therapy, and memory therapy. He is becoming stronger, slowly. We are grateful.

So let's dance The Gratitude Dance again, because we, all of us, can smile, laugh, wiggle, and dance. We are HERE!!! Now, shake it!

The Fall and What Happened After, or Dementia Unleashed

Funny how one fall, one slip on the bathroom floor can change a life, two lives. After it happened nine days ago, life downshifted drastically in short yet powerful spurts. His physical fall was matched by a mental fall, and he lost ground quickly. Within one day, my husband, Romeo, went from having dementia to having DEMENTIA. He lost the ability to feed himself, and his sweet disposition morphed into one of psychotic anxiety and restlessness.

In the hospital now, he fusses with his blankets, tears off his hospital gown, picks at his clothes. He is ripe with innocent hallucinations. He grasps at the air, peels bananas that aren’t there, asks me to pull the needles out of his legs. I go along with it all, especially making sure he knows that I removed all the needles. He tells me that one of our favorite tea shops is closing (not that I know of). I tell him we can find another, and he is satisfied and falls asleep smiling. At last he is quiet and content and I can take a break from being with him in his dementia.

A short time later, he wakes up, and anxiousness kicks in. He is flailing about like a baby, arms and hands and head moving in short, jerky motions, hands grabbing at my hair and necklace. He squeezes my hands so hard (how can he have such physical strength?) that I must remove my rings to head off an injury. He reaches for me, misses, unintentionally grabs and bumps and punches me. He has a tight hold on my right thumb, and it HURTS! I ask him gently to let go of my thumb. He squeezes it tighter, not understanding. Still coaxing him to release my thumb, I try to pull it out of his hand. This only makes him squeeze harder. Finally, I manage to pull my thumb out of his hand – and he jerks and grasps the bed, as if he were falling and my nearly broken thumb was his only lifeline. I speak softly in his ear and hold him tenderly, oblivious to the swollen thumb and to the bruises forming on my arms.

The muscle spasms in Romeo’s legs begin at 6:00pm, slowly at first. By 6:30, they are becoming more frequent, more pronounced, more uncomfortable for him. Finally, an order comes through for the pharmacy and we anticipate relief. It doesn’t come. We ask the nurse to page Romeo’s doctor. No reply. Page again. The spasms come every 30-50 seconds, and they are so strong and painful that Romeo’s back arches during each attack. Still no doctor. The nurse says that the doctor is busy in the emergency room with some admissions. I get a brilliant idea and share it with the nurse. I tell her that we’ll take Romeo to the emergency room so he can see a doctor. Shortly after that, the doctor showed up.

Two and a half hours after the start of Romeo’s muscle spasm ordeal, the doctor gave him a small dose of morphine. Thankfully, it relaxed his muscles and he went into a peaceful sleep. On the other hand, I – I who had been crying all day – cried some more. I cried all night and well into the next morning. That day, Romeo and I crawled through the deepest, darkest jungle without a map or chart. We encountered monsters and demons. But still we crawled. It may be a very long time before we can stand up again. Yet, we crawl.