Fear of Abandonment in Dementiaville

Romeo lies in bed. He wrings his hands, furrows his brow.

"What's wrong, Romeo," I ask as I cup his hands in mine. Making physical contact with Romeo soothes him, and he stops the wringing and loosens his brow.

"I'm afraid."

"Of what, Romeo? What are you afraid of?" It's a gentle question, framed with soft intonations to help soothe him further.

I expect a long pause after my question as Romeo searched for the words to tell me. He often cannot think of the words to describe his thoughts, to name objects, to whisper endearments.

There is no hesitation now, however.

"I'm afraid you'll abandon me, that I'll never see you again."

His words are slow, deliberate, soft, to match his waning energy level. He does not look at me as he speaks, but then he seldom does. It's simply part of the disease.

I squeeze his hands as a gentle reminder that I'm still there, that I'm with him.

"I'll never abandon you, Romeo."

"Really?" His face brightens.

"Of course not. I visit you as much as I can."

"Juliet, it's been a long time since you've come to visit me."

"I was here yesterday, Romeo. And the day before that. And the day before that."

"Really?" His face brightens even more. A long time ago, when Romeo was first diagnosed with dementia, I made a vow to him that was probably more important than our wedding vows, and I repeated it to him now.

"Romeo, it's important that you know without a doubt -- ever -- that everything I say to you is true. I promise that I will always tell you the truth so you can know without thinking or questioning or wondering that you can rely on me."

"Oh, yes, now I remember you've told me that many times before."

I smile.

"Juliet, I am sorry that I forgot."

"Romeo, do not worry, and do not be sorry for anything. I know it's your disease and not really you thinking these things. I want you to let it go out of your mind, set it free, and know that even when I'm not here, I think about you. I don't want to abandon you. You're stuck with me."

I kiss his bearded cheek, and he smiles, loosens his hands from mine, closes his eyes, and is asleep within seconds.

Missing Romeo and Coffee Shops in Dementiaville

The past week or so has been hard on me. Well, okay, nearly my entire life with Romeo has been hard on me. The difficulties simply change. The newest development involves crying...again. And once again, I find myself trying to figure out what it's about this time around.

Sometimes I can associate a series of crying bouts with what's happening currently with Romeo's progression of dementia. Other times, it isn't so clear. Sometimes I never figure out what it is. I don't think it matters so much, really. What matters is that I don't hold it in, that I meet it head-on, that I let the crying come, and that I trust it will cleanse me. It always does.

Several times this past week I found myself in a bookstore having a hot drink, relaxing and actually reading a book, something I love to do but have done little of in the past year. I wanted the quiet time, alone, to be anonymous to people around me. I sought out the time and the place and the mood. I felt relaxed. What a concept -- me, relax? On purpose? Nice.

Toward the end of each of my coffee shop visits this week, I looked up, half expecting to see Romeo seated across from me, his nose buried in his latest reading treasure, the concentration and pleasure animating his features. But of course, Romeo wasn't there. He wasn't across the table from me. He's in a nursing home.

I thought about the nearly daily visits Romeo and I would make to bookstores and coffee shops. He enjoyed this so much, and I loved it because he did, because he was happy, and I loved to make him happy. It seemed to take so little to please him then. I gave him everything I could of what he wanted. I still do, often going out of my way. He can do so little for himself. I want to give him the world, the universe.

After each of my recent coffee shop visits, when it was time to go home, I would look at my empty cup, close my book, survey the other people in the coffee shop, and pack up my things. This happened with each coffee shop visit this week. After each visit, there were tears in my eyes. I stifled the urge for a full, blown-out good crying session. I drove home, still fighting that urge, holding it at bay until I arrived home safely, parked the car in the garage, waited in a daze for the garage door to close, and made my way into the protection of sanctuary, of home. Each time, I cried until there were no more tears, again.

You'd think that I'd want to stay away from bookstores and coffee shops, but I feel drawn to them now. It's bringing up stuff for me to clear. It doesn't look like I'll stop doing this, at least not until I'm done, whenever that will be.

Links for Caregivers

I've added a page of websites that contain helpful information about caregiving.

You'll find a way to Links for Caregivers on every page of Romeo and Juliet in Dementiaville.

It's on the right, in the Pages section, just beneath
About Me and View my complete profile

Or just click here:
Links for Caregivers

Technical Problems With Blogger

Technology makes it possible for people to gain control over everything, except over technology.

-- John Tudor

Dear Readers,

Wow, what a frustrating couple of days it's been. I've been working hard on some new posts, only to experience problems with publishing them to the site, while others have disappeared from the site completely. This, I understand now, is due to technical glitches on the Google Blogger side of the equation. My apologies, and theirs: Official Google Blog: Blogger is back

I ask for your understanding and patience as Google takes the necessary time to restore my posts.

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.

A Caregiver's Bill of Rights

When I first began to take care of my husband, Romeo, even before he was diagnosed with dementia, I didn't realize I was a caregiver. I thought that I was simply helping Romeo with things he could no longer handle himself. I didn't yet realize that his dementia would progress into something I wouldn't be able to help him with by myself, alone, at home.

No doubt about it. Caregiving is probably the most difficult job you'll ever have, the most difficult task you'll ever undertake. Yet, it is also in all probability the most rewarding. Whether or not you have come to the point of recognizing and labeling your caregiving role, you will discover that your job, this obligation you have undertaken, is best carried out with a "yes" attitude. By saying yes to being a caregiver to your loved one, you are equally importantly saying yes to doing all you can to take care of yourself. I reiterate: all caregivers are equally responsible for taking care of themselves.

I recently came across a Caregiver's Bill of Rights. It recognizes the humanity of a caregiver and gives permission for us to be fully human. Please know that you, as a caregiver, whether you are so new to caregiving that you don't yet know you're a caregiver, or whether you've been a caregiver for many years, are entitled to your own life, to acknowledge and fulfill your own needs. You are entitled to each of the rights detailed in these bullet points. Live your caregiving potential to its fullest and embrace these rights.

A Caregiver's Bill of Rights

I have the right . . .

• To take care of myself. This is not an act of selfishness. It will give me the capability of taking better care of my relative.

• To seek help from others even though my relatives may object. I recognize the limits of my own endurance and strength.

• To maintain facets of my own life that do not include the person I care for, just as I would if he or she were healthy. I know that I do everything that I reasonably can for this person, and I have the right to do something just for myself.

• To occasionally get angry, be depressed, and express other difficult feelings.

• To reject any attempts by my relatives (either conscious or unconscious) to manipulate me through guilt and/or depression.
  

• To receive consideration, affection, forgiveness, and acceptance for what I do from my loved one for as long as I offer these qualities in return.

• To take pride in what I am accomplishing and to applaud the courage it has sometimes taken to meet the needs of my relative.

• To protect my individuality and my right to make a life for myself that will sustain me in the time when my relative no longer needs my help.

• To expect and demand that as new strides are made in finding resources to aid physically and mentally impaired persons in our country, similar strides will be made toward aiding and supporting caregivers.

-- Author Unknown

The Caregiver as the Page of Swords

Make a proper investigation first.
-- Buddha

I hold the Rider-Waite Tarot Deck and ask, "What helpful information can I pass along to the caregivers reading my blog?" I shuffle the cards, cut the deck, run my left hand over the spread and intuitively pull the Page of Swords (also known as the Princess or Daughter of Swords).

The Page of Swords, I believe, describes in a nutshell the ideal caregiver . Each and every caregiver who does not have the qualities and attributes of the Page of Swords must, simply must, develop them -- and fast! -- to serve their loved one effectively, to give their very best, to make the loved one's difficult situation a little lighter.

Here is a sampling of what various sources say about the Page of Swords.

The Little White Book that came with the deck describes the Page of Swords:

A lithe, active figure holds a sword upright in both hands, while in the act of swift walking.

The Tarot Directory, by Annie Lionnet, spells out the message of the Page of Swords:

This card indicates that you will have to make some careful decisions that require clear thinking and level-headedness. It is important to keep a proper sense of perspective.

In Tarot for Life: Reading the Cards for Everyday Guidance and Growth, Paul Quinn says about the Page of Swords:

Keyword: Investigation
Being: Emotionally detached, intellectually engaged, intrigued, observant, inquisitive, skeptical.
Doing: Asking questions, grasping concepts, getting the facts, cutting through obstacles, holding your ground, striving for objectivity.

In Tarot for Yourself: A Workbook for Personal Transformation, the author, Mary K. Greer, describes the Page of Swords and asks urgent questions of us:

Seeks justice and truth. Cuts through depression and heavy, stormy thoughts. Takes risks with communications. Cuts through cloudy thought to get at the truth of the matter.

Questions to Answer:
What do you have to say? What fears must you face?

Sample Affirmation:
I face my fears and depressions and risk cutting through them.

I don't know what more I could possibly add to what these books reveal. I don't know of a more perfect card, or a more targeted message for a caregiver. Be an active and swiftly-moving caregiver. Keep your head about you when making decisions related to your loved one and always, always, serve their best interests. Do your homework. Be an advocate. Make friends with your fears and your moods. There will be plenty of them along the caregiver's path.

What a great opportunity we caregivers have -- to give the gift of caregiving, and to give it wholly and willingly from the deepest part of our hearts.