Caregiver's Journal

     I want to think about something other than her.    

     I have trouble sleeping. I listen for her in the morning, watch for her walking home from the bus stop in the afternoon, make dinner and often entertain her with a movie in the evenings.  Sometimes I get up at night and listen at her door for breathing.
     I've got more constructive and satisfying things to do than this.
     What will I do when she's gone? Loss and gain. I will miss her playfulness, but gain my freedom.
     A life of show business: I am the assistant choreographer for another exit, stage-left.  My dad, my first husband, and now, my mom.
      I've spent weeks writing and reading and counseling and meditating and I have discovered some truths:
     *Grieving, even the anticipatory grieving that happens when you see the event coming, is hard work. Really hard.   All grief gets tied up together. The anticipation of losing someone brings up the loss of others. I've been thinking a lot about others I've loved who are gone.
     *She is an old woman who often reverts to sulking, sneaking like a 10-year-old, lying and weaving stories, taking things that don't belong to her, and who sometimes has tantrums.  I react poorly, becoming indignant and impatient.  And irritated.  She behaves like a child. Friends laugh when I tell them, "She gives away my stuff!" I might laugh, too, were it not so exhausting.  And my stuff.
     *I want her to admit all the things she did wrong with me and apologize.  Well now, if there was ever a ridiculous expectation, this is it. She never, in her whole life, admitted she was wrong about anything. Why would I think she could do that now?
     *I want to relinquish some of the responsibility for her care, but there is no one else who will do it. Despite the support I have collected, much falls on my shoulders and it weighs heavily.
     *I have a co-dependent relationship with my mother. I always do her bidding and she is very bossy and demanding.  Lately, I am resisting and pushing back. It's only taken 59 years. Creating a healthy distance was not allowed when I was a young woman. Perhaps I'll be successful now that I am old and have endured enough demands.
     I remember that I pleased my parents by making life fun. Playfulness, and the impression of playfulness, was central to all performance. It was hard, creative work to bring a show to life, requiring grueling rehearsals and preparation.
     I grew up riding on my parents' big personalities and identities.  Larger than life, television cameras, stage lights, big entrances, strutting.
     Imagine my father at every family or community event, comfortable and charming at the piano, his cigarette dangling from the edge of the keyboard, his smile big and playful and inviting.  My mother was often at the microphone singing. If you had been there, you would have seen that my dad and mother were the most spectacular people in the room. People gravitated to them and my parents thrived in the attention. I learned to tolerate that attention. Their grandiosity was my normal.
     My parents were more show-biz than high art, but always with the finest in performance quality. There was tremendous creativity. There was always a show or commercial jingle being worked. My parents were dramatic and clever and charismatic. My father's music and theatrics could bring an audience to tears. My mother's cleverness was always cause for admiration and adoration from others. People got involved to overcome their shyness or more often, just to be in the glow of the spotlight.
      What is Grace? Grace is being able to let a loved one's death be about his or her relationship to the Creator, and to let go of my lingering post or anticipatory sadness. Grace is seeing my mother as a colorful character. In the story of my life, she was interesting. She was daring. She had the ability to be extraordinarily fun. She had a big ego, was sassy and playful, and had mojo. I learned some of those behaviors.
      It's true that there was a lot of childhood trauma and confusion. She was not a protective mother to me. And instead of teaching self-sufficiency to her children, she taught them to perform, to play, to be dramatic.
     But it is also true that my life was full of enriching childhood experiences. I learned to paddle a canoe, ride a horse, tie mariner knots, march in cadence, dance, sing, use microphones properly, and make radio and television commercials. I studied fencing and martial arts and ancient languages. 
     I did not learn to cook or bake, apply make-up, dress appropriately, clean house, sew, or knit.  I did, however, learn to walk down stairs with a book on my head. I did learn how to survive on stage and break into song and dance on a cue.
     Is she self-centered? Most certainly.  Inappropriate? Definitely.  But my mother has rarely, if ever, been boring.
     Caring for my 90-year-old colorful character has challenge beyond age and the deterioration of the body.  There is the continued struggle to separate from her light and find my own.
     If I were 80, and were to write myself a letter, what would I tell myself as I turn 60? I'd say, "Your training and shaping are only part of who you are. Focus on what is uniquely yours and give that to the world. It is time."

Course Correction

         I can remain in a state of perpetual anxiety, or I can look mortality in the face and admit I haven't got a clue about the afterlife or the mystery of crossing over to the other side. So, as always, I'll do the best I can; I release any need for perfection. 
         In the case of caring for my elderly mother as she considers her mortality, it is difficult being the daughter.
         My mother is small in stature but large in character. I would never imagine I am taller than she until I see a photo.
         Being the only daughter, and having a powerful mother, inevitably, I run into her overbearing nature. I also experience nearly all the responsibility for her care and find myself available, albeit not always willingly, to fulfill her demands. I do more than I need to, frequently neglecting my own interests and responsibilities.
         Eleven years ago, I witnessed my children's father, my friend and husband, as he left his body after his two-year struggle with cancer. I had thrown myself completely into his care. Dual blenders and tube feedings. I was there when he died and I remember that the room took on an energy, almost like electricity. Something indescribable, but definitely palpable. Not eerie, but mysterious.
         This year began with the medical care for my mother.  I find myself asking how do I prepare for her departure and how do I take care of myself so that I remain standing after she's gone. Among my thoughts is wondering if it is worth talking to someone about your grievances before they die. Since I've tried before, I may be setting myself up for disappointment twice. Based on my years of grieving for my own father, my children's father, and beloved friends, I might remember that there are likely to be things I wish I could have said. That's could. Not should.
         I consider this woman who drove me to ballet classes and insisted I learn to ride a horse. The woman who taught me song lyrics and read all the Nancy Drew mysteries to me in my childhood. My biggest grievances? She gives away my stuff, intrudes where she doesn't belong, takes over every situation if she can, lies to get what she wants, and loves being the center of attention. She is a formidable woman. And from her I learned to be competent; not because she was competent, but because she forced me to be. I did, however, learn confidence from watching her. She doesn't let anything stop her.
        Two things can simultaneously be true: My 90 year-old mother can drive me crazy AND I can admire her in spite of all her transgressions.
        If I take the stress of caregiving, and the inevitability of her passing, and add the mother-daughter relationship challenge, it becomes quite a rocky road. I haven't been employed in a year; finances are tight, and that adds stress to the mix. I have done all that I think can be done: doctors secured, papers in order, I've built a coalition and now have allies to assist me. We have a plan. The rest is up to God.
        Most of my life I've been taking care of somebody. I changed bandages on my dad when he was battling cancer. I was attentive to the medical needs of my in-laws for many years. Makes me think I attended nursing school, by direction of the Universe, just so I could help in an informed and skilled way.
        But recently, my caretaking and overdeveloped sense of responsibility reached a fevered pitch. I had been tripping down that very rocky road of frustration, anger, worry, resentment and it had gotten me nowhere . In fact, I was beginning to feel crazy.  I decided to trade my angst for peace. This was a conscious choice and I sensed it was the only choice that would leave me intact, even in the face of death. 
        My course correction started when I made a healthy choice to attend a yoga/meditation retreat for two days. Making the decision was the first step toward feeding my soul in the areas of my life that felt impoverished.
       The second step, which needs to be taken repeatedly, perhaps daily, perhaps hourly, is to stop wishing for things or people to be different. Let's work with what we've got, shall we? Perhaps revise my perspective to consider that people who don't see boundaries and cross them frequently provide me an opportunity to clearly define my boundaries and set up guard posts. I might view this as my training ground, my lesson.
       The questions I've begun to ask are: How much time of my life am I willing to not focus on the things in my life that matter to me? How much energy am I willing to put into thinking about anything other than my own creativity, my own spirituality, my own marriage? Is it possible, I'm just asking, to spend more time helping myself than helping others? Is it possible, I wonder, to let go of the frustration and resentment I carry around with me daily, and move forward with less heaviness and more optimism? Of course it's possible.
       My inner voice asks me to be clear in my values and to make my assertions positive. What is it that I want?
       OK. I want self-respect. I want to put myself first in terms of money, health, sanity, privacy, creativity, and control over my home. I want a healthy marriage that takes priority over the demands of others. I want to protect my happiness and sense of fulfillment. I want to conserve my energy for interests of my own. I want to have the tools to set limits on the inappropriate behaviors of others. I want the inner strength that causes me to pause before I am taken hostage by my emotions or by someone else's demands. 
       In meditation, I work on detachment. Not from love or caring, but from meeting the needs of others. Let them have their struggles. Let my struggles be mine.
       I am taking the time I need to get clear about my relationship with, and how I feel about the inevitable death of, my mother. Now is the time to focus on Spirit, to recognize and honor the mystery that is life. To be at peace with what is.

Contact Improv

          My relationship to the world is a contact improvisation. 

          How I use a space is affected by my level of comfort with physical interaction. This is why I frequently misjudge doorways and inadvertently hit my hip bones or shoulders on door frames. And why I often find myself in an opposing trajectory of oncoming pedestrians and inevitably imagine I am engaged in a square dance. "Do Si Do" I'll call out as our shoulders pass each other and we circle back to back.

          It is why I preferred Twister and Hop Scotch and jump rope, as a child, to board games which bored me silly.

          I carried and maneuvered furniture last week using my body's structure as  scaffold and support. It was something I learned to do at University when we'd carry, drag, and lean into other dancers, testing our strength and our trust.

          The body is all about energy.  The way that I hold myself tight or clench my jaw is a visible manifestation of trying to brace myself against fear and vulnerability. Conversely, freedom of movement speaks of comfort with self.

          My movement energy comes in dance form, usually, and sometimes as poses. Mountain pose feels grounded to me. A serpentine spine reminds me to remain fluid through strength. Dancing with children is one of the best aerobic thrills I can think of.

          What does it mean to self-soothe?  It means calming the body's reactive tensions. To do this, one needs to know what level of activity or passivity allows the body to let go.. It could mean breathing deeply and attending to one's spirit with kindness. An easy sway. A soft waltz.

           I love periods of solitude when I can enjoy the magnificent quiet of the house. I've begun to chant, to om, and to sing. At first the sound of my own voice breaking the silence startled me. Then it emboldened me.

           It is a remarkable and sometimes difficult thing to keep one's own counsel. It is empowering to hear one's own voice verbalize the problem, and it is humbling to ask the Power out there to send signs of guidance.  Sometimes, your inner voice will tell you what you need to do.

            It is possible to follow an inclination or hunch in the same way we did in dance classes, following the impulse to move according to what feels like it might work. Moving with and within my environment tests my impromptu choreography; and asks me to go with my gut instincts.

            When I am outdoors, in the weather, noticing nature, I am drawn to the forms in flight.  The local geese fly in patterns or at the least, in pairs, synchronized with each other in graceful approaches. Hawks returning after winter utilize my backyard power poles as perches. They glide in circles around my air space and make precise and focused landings. I notice the delicate steps deer take and delight in watching them trot tenderly on lean legs, even as they cause trouble by eating foliage in front yards.

            We chose to build a house in a small town rather than a big city or a rural outpost. I suppose we wanted the opportunity to create a network, an ideal neighborhood, a physical space that was easy to navigate.

            A big city might have more opportunity for change, but a small town can have more potential for community, and consequently, more need for conformity. It's a reasonable trade-off. Besides, we like visitation by deer, hawks, hummingbirds, bees, and neighborhood cats.

            A small town also has space for privacy without necessary isolation. There are people moving in the space with you and you can have as much contact as you want if you're willing to interact.  There was a time when my primary interactions with other beings were conversations with coyotes, snakes, scorpions, and owls. Now I walk down the street and people say, Hello. Sometimes this takes me by surprise and, as I respond in kind, I feel uplifted just to have a moment when I realize I am a member of humanity.

             If I were to create an ideal neighborhood for my body's need for balance, I would imagine a scene very similar to my fantasy of Heaven. Enough peace and quiet for solitude, a library for reading. Healthy food and clean water available. Plenty of girlfriends to play and talk with. Plants and trees, stepping stones and bird baths to attract all variety of wildlife except rodents. Raptors, which would help with rodent control, would be especially welcome any time.

            An ideal community would include worthy newspapers delivered to the door. Trash and recycling picked up for me. Neighbors who are pleasant and happy. Theaters available and easy accessibility. Public transportation and bicycle paths. Some diversity to enliven spontaneous conversation and encourage interesting friendships.

             Deaf culture would be a part of that diversity and be a welcome addition to community. Learning to sign was a life-changer. Sign language communicates a depth of feeling through movement and expression.  This makes me love the language and the people who use it.

             An ideal home and neighborhood would prune the family tree, removing any toxic branches, making the trunk and roots more solid and healthy. The support network would be a family created by choice,  including close friends who contribute humor and camaraderie.  The family of choice would be multi-generational made up of maturians who can offer perspective as well as young folk who bring energy and fresh skills.

            Contact improvisation is not limited to dancers, nor does it require music. It does, however, by its nature, require full participation. It accepts the reality that interaction with environment, neighbors, wildlife, even furniture and doorways, does not have to look pretty. Nor does it have to work all the time comfortably. Sometimes participants drop each other or trip over another's feet. Sometimes things get awkward and everyone has to stop, regroup and start again.

             Unless our time is up, we usually have the chance to try again at balance, mutual support, navigation, release, and even trust.

On Aging

               One of the effects of having a nonagenarian living in the house, is looking at one's own mortality. Now that my mother is 90, I am even more aware of my own sands of time.  Questions persist regarding: purpose, retirement, bucket lists, health and vitality, romance.

              I am going to be 60 this year and I don't know how I feel about that. I was hoping to celebrate something older than I, something timeless. So, my beloved will take me to see Shakespeare's Henry V.

                My girlfriends want various things in retirement. Large houses of women living together. (My first thought....how many bathrooms?)  Cabana boys to cool us with palm fronds. More than one girlfriend wants to retire abroad. An old gal living in Paris. Personally, I think I want comfort and community.

                I try to honestly evaluate the prospects for my retirement.  I fitted my house with comfort for the body, and exercise equipment. I wonder where I'll place the investment of my time and creative energy for the next decade.  I am hopeful for work with purpose and meaning.
                 I have a recurring conversation with my young niece with whom I enjoy sharing dance stories. We understand the emotional and physical effects music has on us.    
               "There were elderly people in my yoga class."
               "How old is elderly?
               "45-60."
               "That's my age group. I refuse to be elderly.  I heard one woman say she planned to be a Maturian.  I like that. "

                I almost decked the first kid who offered me a Senior Discount.

                My kids said, "Mom, take the discount."

                Of course I'll take the discount, but how dare he think me a Senior?  I was indignant.
                A wise woman discount? A Maturian discount? Yes, that's better.

                Obscure experiences, completely out of context, and not in any particular order, pop into my mind without reason.   They seem to have happened a very long time ago. Some examples:

                I assisted a doctor in sewing up a woman who had been mauled by 3 pit-bulls when she went out jogging.  In my twenties, I almost had an affair with a lion tamer.  I bet on horses and greyhounds and always lost.
                One birthday, when I ran the ranch, after I spent the night in a hammock, I woke up to an owl staring down at me. 
                 I studied Flamenco in Spain, African with an African Dance Co., Tap in Hollywood, Ballet with the Milwaukee Ballet, Modern dance with the prima ballerina of the Metropolitan Opera Ballet.

               I danced on a cruise ship, on short notice. Thank goodness I had a piece ready.  I was 16 and later that evening, my father was freaking out when he couldn't find me. He imagined that I had fallen overboard. I was being a teenager, downstairs where the music was, flirting with the ensign. 
               Like most young girls, mojo came naturally.  I'll tell you what, as a Maturian, it takes work to keep it. 
               I do love the benefit to romance enjoyed at this age.  I love the realistic expectations and not getting bent out of shape when the other person turns out to be human.  I can look like Carol Burnett's washer woman with my sneakers and baggy clothes, and he still loves me. We appreciate each other's best qualities and try not to make too much of our worst.

                How to keep romance alive considering the 300 miles between us and calendar visits on intermittent weekends?  It's a challenge. While we're apart, we send each other 15 second phone videos,  or discuss various subject matter about the latest thing we've read, maybe send a link to an interesting TED talk, or send a joke. Just to keep us connected. I occasionally change his ring tone to Motown favorites. When he's here, it's nice to have help around the house.  He keeps the fire stoked so that we can curl up on the couch together and stay warm.  And there is pillow talk, that quiet sharing at the end of the day, made sacred by proximity, much more personal than phone calls.

               Another benefit of this age is not having to prove myself to myself. I know of what I am capable.  I know my strengths and weaknesses, my likes and dislikes.  And as long as I do my personal best in the world, I can let go of outcomes, let go of self-doubt.

              It is true that the body has limitations. But it is also true that with years of practice I can say, "No". I can reject ideas that don't work for me.
              So, perhaps I like this age. I like the history, including the revised versions that accompany retrospect. I like my self-image and the forgiveness, the slower tempo, the gift of insight and perspective, a certain personal comfort that come with 59 years of living.
              There are a lot of myths around aging in our culture. I don't have to believe them.

Countdown to Retirement

It seems that not long ago, my beloved and I were counting down from five years. I made a 60-month calendar with anticipated milestones that we might reach as we approach a day we can both be home, enjoying our lives together.

Suddenly, my brain's extensive music file has selected a Motown 45 which drops down onto the turn-table of my internal juke box: Diana Ross and the Supremes are singing,"Someday, we'll be together; yes we will."

Time, as it tends to do in retrospect, went by quickly during those first twelve months, and here we are, in January, at four years and counting...The important thing is not just to survive it. Not just to make the best of it. No, my intention is to thrive in the face of challenge. I dare myself to make it work. I double dare me.

I will journal our efforts to make a four-year separation something we will look back on with humor and with appreciation. Surely, there are other marriages which face similar challenges. Perhaps I will hear from other women with suggestions on how they withstand such trials.

I read that many marriages have endured lengthy separations. Consider Napoleon and Josephine. The day after their wedding, he left for battle. Hey, my husband left the day after our wedding too. What did Josephine do all those months he was away? She created a life for herself.

Marriage has to be one of the most difficult, yet rewarding, relationships that exist. It is to my benefit to do my best to keep the romance alive.

Did I say, "romance"? What does romance look like at nearly 60 years of life and 6 degrees of winter chill? It takes a tone of playfulness.

She:"Would you object if I wear socks to bed?"

He: "No, it's fine."

She "How do you feel about mittens?"

He: (a moment of silence)

He: "What about your cold nose?"

She: "A ski mask?"

First Winter

The first winter, in our new house, in a new town,  is a brisk, chilled, powder-white outdoors.  Inside, it is warm and cozy, with a kitchen that perpetually smells of good things to eat.  The kitchen, that true heart of the home,  beats steadily with a circulation of aromas signifying health and satiety.  Roasts in the oven, stews on the stove-top, hearty bread.  

January will be here soon. Janus was the Roman god, with two faces, who could look back upon the past while simultaneously looking toward the future. And so, it is not uncommon to look over our shoulders at the landscape of our past year, remembering the seeds we sowed in spring, the harvest of autumn, and the reflections of deep winter.  Did we create? Did we love? Did we give the world our best? And what, then, of our future? Will we worry ourselves and borrow trouble from tomorrow? Instead, let us put our best foot forward, every day, one step at a time.

My beloved's visits home are always a race against the calendar.  There is a list of tasks, the requisite and hopeful efforts to be reacquainted, the discussions of intentions and plans and dreams. And at some point, there is a realization that it will soon be over. He will depart toward tyrannies of the urgent, his work in the world, and I will resume my work, my care-giving, my offering, whatever that may be.

My thoughts, this New Year's Eve, turn toward being here now, appreciating the warmth of a fire. I think about marriage and my commitment to working side-by-side even when we're apart.

My role in parenthood is always changing. My adult children share their time with me. I have decided warm greetings and fond farewells, small courtesies, and sincere attention to their stories are my personal best at this stage.

As this year comes to a close, I release any attachments I have to clutter, mental and otherwise.  My intention is to celebrate the simple pleasures, opportunities, and possibilities of my future. 
Bring it on!

Janus looking to the future and the past.

Make peace with yesterday and let it go. Move forward today with confidence and appreciation for the strength you've gained.

A Cold November Morning

First Year.  We asked for four seasons.

We arrived in Spring to Nevada, the most mountainous state in the contiguous U.S., to an area near rivers and lakes.  I traded rattle-snakes and vultures for deer and hawks. I put plants into the ground and was pleasantly surprised that they flourished. I watched weeds grow and spread. We built trellises for honeysuckle.

In summer, we walked the streets downtown, microbrews in our cups, and listened to free jazz concerts. I traded 113 degree summers for a slight increase in humidity and comfortable nights.  I traded swamp coolers for air-conditioning.

By the time October arrived, Carson City was engaged in the fun of Halloween. New homes in the sub-division decorated their front yards.  I hadn't seen trick-or-treaters for decades; this year they came in droves. My favorites were the little lady bug, the bumblebee, and the superheroes.

Now is the beginning of winter and the maple tree, my barometer of seasonal change which I view from my office window, has lost all its leaves and the cold wind has ripped the protective covering from the tender bark. The local deer will be looking for that when food is scarce.

The rainwater clings to the chin of my gargoyle rainspout.  Gargoyles make me smile; what can I say. My rainspout is a token of appreciation for the gargoyles I saw at Notre Dame.  The ground here is covered with powdered sugar. My boots make tracks.  While not as cold as the Wisconsin winters I spent my childhood surviving, there is still some relearning about how much damage frozen water can do. We had our first shattered water pipe, an abrupt lesson on battening down the hatches in preparation for the cold.  Christmas gifts are leaning toward snow-shovels and long underwear.

You know how your computer or phone automatically updates to the most current and appropriate version of your apps? Reminds me of the Buddhist philosophy of impermanence; nothing stays the same. I've updated my life: Gave up my shot-gun for hand-gun. Work-boots for mud-boots. Dirt roads for asphalt. Caliche and sand for sidewalks. Scorpions for ground-squirrels.  People ask where
I'm from and I tell them I just left 30 years in the middle of nowhere. It was an amazing ride, but I'm glad to be making my life easier on my body, a gesture of self-empowerment.

In the desert, I hunkered down into this time of year with soups and stews, warm bread, wood fires, and good books. In this season of life and of year, I feel less like a hibernating bear and more like a witness. Observe, notice, appreciate.

That said, I think a I'll make a pot of chili and some corn bread.

ADVICE CORNER

Ways to beat the winter doldrums, seasonal affect disorder, and other cold-weather melancholia:

1. Put on some Billy Holiday or Bessie Smith and sing the Blues.

2. Tap dance.

3. Learn some good jokes and tell them while you're waiting in long shopping lines.

4. Get cozy in the kitchen. Put a stew in the crockpot, a casserole in the oven.

5. Buy some flower bulbs (Narcissus are nice) and place in a bowl of rocks and water. Set inside your kitchen or near a window. Watch the roots and green shoots get a jump-start springtime.

6. Practice self-kindness. Get a massage. Go for a walk. Curl up with a cup of tea and a good book.