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.

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.