After Caregiving, the Laundry

I wrote this article for CARE Connections, a publication of Boulder County Aging Services, which gives Information and Inspiration for Caregivers. It appeared in the March/April 2011 issue.

For four years, I’ve been caregiver to my husband, Romeo, who suffers from dementia. And I’ve recently realized that my job as caregiver is temporary. One day my caregiving responsibilities will be over. One day Romeo will no longer need a caregiver. And this means that one day I’ll return to a “normal” life.

I have contemplated this new life sans caregiving. What will it be like? Will I spend my days falling into a black hole, right behind my husband? Or will my life be fuller, richer, than it ever was before, more than I ever imagined it could ever be?

Essentially, of course, the only difference between my current caregiving life and my future life without caregiving is that after caregiving, the only person I’ll need to take care of is me. And I’m used to that, right? After all, I’ve done a pretty good job of taking care of me while taking care of Romeo. Or so I am told. But is that really the only difference? Just because someone else takes over the caregiving role, or just because there is no physical body, no emotional body for me to take care of, does that mean anything? Will my caregiving mode suddenly switch off? Or will it be more of a gradual fading out?

When you’re a caregiver, your life is centered on caregiving, and only that. Caregiving becomes everything. You eat, drink, sleep, and breathe caregiving. Your every thought is about the person you’re taking care of, your loved one. Your eyes are on alert, always looking – is your loved one is safe, asleep, does he need something, is he somewhere he shouldn’t be?

When my caregiving days are over, what will I eat, drink, sleep, and breathe if it’s not taking care of my husband? What will I think of when I don’t have to think about my husband? What will my eyes see when I don’t have to watch for the obstacles that can hurt my husband, when I don’t have to see that he is awake or asleep, when I don’t need to know whether he needs something, when it isn’t relevant for me to see his whereabouts because he’s no longer here for me to watch?

Indeed, caregiving consumes one. It becomes your identity. Sometimes it feels that I am thought of as “that poor woman whose husband has dementia.” They recognize the self-imposed tunnel vision I’ve activated in order to take care of Romeo. I’ve given my life to taking care of Romeo.

Throughout each day while taking care of my husband, I become an extension of him. Because I know him so well, and because I care deeply about his happiness and comfort, I anticipate his words, thoughts, feelings, and desires. I play the game of “if I were in Romeo’s shoes, what would I want right now?” Perhaps this habit of mine, a way of being, really, is over the top. Some have told me I indulge my husband. And why not? There is so little he can control, so little he can do. You bet I’m going to do everything in my power to get him what he wants.

What will I do when my days of indulging him are through? Where will my enjoyment be directed then? At this point, there are more questions than answers.

As my husband’s caregiver, I live in his shadow. It seems that the attention of strangers, as well as friends and acquaintances, goes to Romeo first and then to me second, if at all. Their comments and inquiries are directed toward and about my husband. “How is Romeo doing?” they ask, anticipating an answer that’s as debilitating as his disease. Of course, I don’t mind their inquiries. On the contrary, I welcome them. Life right now is about Romeo. Completely. Every day that someone asks about Romeo, I make sure to mention it to him. Much of the time, he has no idea who the person is. He’ll ask, and I’ll tell him where he knows that person from. He’ll nod his head and smile. He enjoys being asked after. He is happy, at least for a short while, and any amount of happiness I can give him helps him tremendously.

What will people ask me when I no longer take care of Romeo? And, of more concern, what will I answer? What will life be like when my caregiving days are over?

The first answer that pops into my mind is that – wow – I’ll be able to go back to my old life. I’ll be able to go back to work. I can also get back to working on my art, my writing, and I can spend more time on my other passions, more time with family and friends. I’ll have the flexibility to go where I want and do what I want...just like before Romeo was diagnosed with dementia.

In short – and this may be no surprise to you – I realize that my life after caregiving will be no different from my life before caregiving. The only thing that will change, really, is my point of view. In “before caregiving,” I focused on me. In “during caregiving,” I focus on Romeo. In “after caregiving,” once again I can focus on me.

Ahhh, and here’s the nugget: my life as a caregiver (thus far) has changed me. It’s made me more understanding, more sensitive, sharper. It’s been a sort of painful yet blissful time that came with deep insights and that revealed my inner depths and affected my outer reality. It moved me beyond my usual perception of myself. Just like in the old Zen proverb, “After enlightenment, the laundry,” my future life will be “After caregiving, the laundry.” One reality does not shatter the other. One reality does not start when the other stops. While caregiving has changed me forever, I still need to do the laundry.

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.