Honor Song

At the Natick Praying Indians Annual Harvest Moon Powwow, there was a special honor song in memory of another mother, her son, and my mother. Knowing there were only five of us completing the first path around the sacred circle reminded me that the journey of mom’s passing had often felt lonely. The strong presence of Janet Robinson and her amazing heart beside me, made it possible to find a rhythm based on communion rather than isolation. On the second round, the gathering energy of strong clear voices, the presence of children, and others who joined the procession freed my feet further to receive each beat of the drum.

As I moved around the circumference, I thought back to the day nearly four years ago when I had first come to this Powwow seeking a blessing I could not name. At five months into the journey with mom I had seriously doubted my ability to go the distance. The odds on the possibility of us healing a return to the original blessing that surrounded the circumstances of my birth, seemed slim.

On that long ago day, as Harry began to smudge me, tears had poured down my face. By the time the feather that signifies completion touched my shoulder, something had shifted. Already more certain, when Naticksqw’ – Chief Caring Hands, offered her welcome and blessing that day, I had closed my eyes. Her powerful words resonated in my chest, encouraging me to embrace a sureness about entering a covenant to assist in a ‘good death’ for mom. Returning home that day something felt noticeably different. I still didn’t have a single clue about how to accomplish my mission, yet I had faith that somehow I would.

In each pass around the circle I reconsidered the memories of everyday spent with mom. Some of the no longer useful more painful images, flowed out through my feet and deep into the earth. All that was possible has come to pass. I felt stronger and more certain about what may be useful going forward. I remembered the mission has been completed and the promise fulfilled. On the final verse, I thought of all the people I know who are in the last days now with their own mothers and offered prayers for them. Never have my feet felt more sure.

As the song and the drum still hung in the air, I felt flooded with honor and simply blessed. Each person came and offered something from their heart. Then it was Harry’s turn. Knowing the part he had played in the story, when the depth of compassion in his eyes met mine, and his arms offered comfort, a single sob broke loose and rang out into the sky.

I will long remember and treasure the sensation of my feet placed upon the earth with each heartbeat made of honor, and the amazing people who have borne witness to this journey.

And then there was great celebration and joy.

Another Harvest Moon Powwow with the Natick Praying Indians passes from this life to the next. To Cathy Kerr, Janet Robinson, the family of Chief Caring Hands, and all my beloveds who may soon this way of parental grief come; May their time be comforted by your touch, conversations made compassionate by your openness, hearts filled with your love, and suffering eased through your willingness to accept life’s great mystery. Chi Miigwetch.

She Who Brings the Dawn.

Lift Off to Re-entry

As the plane relinquished it’s contact with land, grief surrendered my body. Breathing the knowing that the physical evidence of death was far below on the ground created space to consider things from a less encumbered perspective. The pain filled heaviness that has plagued my body for months now lifted for a few glorious days of embrace and welcome of a fresh perspective. One that felt lighter and allowed consideration of the colors, shapes, and textures that form the many things that are good and certain about life at this time.

Of course, coming into the house after such a wonderful weekend of remembering what it feels like to be loved and cared for only to discover that Mom and Molly had not returned in my absence, made for a challenging re-entry. It only took twenty minutes to be reduced to sobbing like a broken desolate child. Once the sadness tank was again empty I picked myself up, headed out into the sunshine and mowed the lawn. Watching the unruly grass being buzzed back into order brought a parallel process to my emotions. Knowing that I had glimpsed the future made the present far more bearable.

A curious state continues. One in which, more often than not I am considering my life being governed by guidelines, or principles and less by rules, or restrictions. Initially this felt terrifying. It is now beginning to feel like something that is pretty exciting. More on that next week.

At the same time, as is often the case the past, present, and future often overlap. And so it happened that the day after my return, my cousin’s beautiful wife brought over an album filled with the incredible black and white images of mom and my day in the life photo shoot. That morning I spoke to a friend on the phone who said but you sound so much better and had a great time are you sure you should do this today? From a deep place, without a hint of hesitation I knew. The page is continuing to turn and before it lands completely on the next, I would rather pause here to re-consider once again what has been rather than be pulled back to this place from somewhere else.

Mom and I had talked for some time about having someone witness on film a typical day in the life we lived together. Unfortunately, although many people offered to help their availability existed in a future I was certain had already passed. Fortunately for us Chelsea had stepped up. She spent the better part of a day, two weeks before her wedding and one week to the day before my mother’s death, photographing us. Mom was aware of what was happening. The morning Chelsea arrived she said, “I feel silly, but I know this will help after I’m gone. Who cares what people think. I won’t be here to have to see them. I say do it for you.”

Watching the entire slide show for the first time, with Chelsea next to me, I was reminded of the strength and love of, for, and with my mother. The sheer effort of will that she summoned to prepare for the arrival of her grandchildren later that day to see Cirque du Soleil, when she was so obviously weak and tired is exactly that which I need now.

I share some of these images with you here. Not to re-visit sadness, but in the hopes of fostering new visions of strength, love, determination and life. May the slowness of the everyday bring you to a place of peaceful recognition about what is good in all our lives.

Gratitude and love to Chelsea Levine – witness to our life, and creator of the photographs you are about to see. The photos chosen are excerpted from the over 400 images that Chelsea produced. Special thanks to Lynne Rome, my mother’s dear friend, who joined us for lunch. The music is Gabriel’s Oboe, excerpted from The Mission.

Musings of an Unintended Caregiver

Please join me in welcoming IJ Woods, guest blogging this week from Conscious Departures. I think he is amazing and hope you do too.
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10 Things You Can Do Today to Challenge Your Views on Dying – Notes to Myself

Today – chose one or all, of the below Continue reading

A Caregiver’s Path to Spring

Yes folks, the rumors ARE true. Vernon’s dogged determination over the entire two years I have been here, has finally paid off. The application process for licensure (Mass LICSW) has begun in earnest. It wasn’t that I didn’t think it was a good idea. It just didn’t seem that a Social Work job was a credible option for a calendar filled 24/7 with caregiver demands. Even the Care.com jobs that have paid for Pilates, and Sculling related fees in the past are forced to take a back-seat to increasing home-focused care needs.

Yet after unearthing the strengths (Either Way Time Passes), that I am still trying to upload, I began to consider all the skill sets that inform my reality. Cataloguing the kinds of projects I enjoy doing for others, and will spontaneously drop previously scheduled chores for, has led to a renewed interest in and focus on work from home opportunities that may improve the quality of this small measure of life. The truth is I am curious about who professional me has become through all these transformations and learnings.

In the afternoons, all my charges seem to have higher needs, as in, “You aren’t serious. Are you telling me that the laundry is MORE important than a walk?” or “Oh, I thought you were doing something but you’re only on the computer writing your blog. Did you pay the water bill yet?” Yet on March 1rst, perhaps sensing the importance of my decision to set the timer for one hour and close the door to the office, both Molly and Thunder laid down by mom and they all had a nap. Not once for an entire hour did a living soul push open the door, left slightly ajar in case of emergency.

I am surprised how much I enjoy remembering developmental stages and factors that influence behavior. Of course, there were some things, such as having an opportunity to reconsider which defense mechanisms I currently use, that were not as much fun. Time passed quickly until the last five minutes, which were torture, but only because I had been sipping tea the entire time and have an aging bladder. When the bell dinged and the door opened, three heads came up, and I was immediately rewarded with delicious moments in the falling snow, celebrated by hilarious furry friends whose antics were delightful.

Not all the sessions are quite so easy, yet I have remained steadfast in my (so far) good-natured insistence that unless someone is bleeding, choking, or in need of serious medical attention I will attend to everything when the particular days studies are complete. I have made my way through the DSM-IV-TR (fourth edition, text revision) section  - UGH – and begin Pharmacology today. In truth, I have begun to look forward to each session being accompanied by the syncopated rhythms of nail clacking, slipper shuffling, and choruses of “I think Molly might need to go out.”

All of this renewed focus has reinforced my strong desire to live more consistently. For example, I say that I value the fact that each person in my life who has crossed my path has been important and yet I spent way too much time reading useless facts about teeth restoration I can’t afford instead of finding them and making amends.

This realization unfortunately, led to finding a memorial page for an old friend in Toronto who was tragically lost to a weather related small plane accident. Amazingly, an overwhelming sense of sadness created an opportunity to reconnect with Dena and Linda, who in another life twenty-three years ago, were my twin sisters-in-law. Hearing about the strong successful women they have become, and seeing pictures of the beautiful lives they have created, and nurtured has been a lovely homecoming to long ago discarded parts.

In preparation for rowing season, after a month’s hiatus following the virtual rowing challenge, a commitment to three sessions on the erg add a palpable sense of renewed vitality. It feels great to have a focus again amidst the chaotic, often unstructured, unpredictable high demand world of end of life caregiving.

Inspiration comes everyday, in tiny ways. Re-collecting dropped threads of friends reminds that time is short, and incredibly worth paying attention to. Periods of exhaustion and high frustration are interspersed with laughter and great conversation with mom. Some days, just when I think we are in danger of losing all this hard-won grace, there is a surprise, like a middle of the day phone call from my beloved. New adventures and discoveries await. There are neighbors and friends who care and evidence all around, within and without – the light is returning and growing stronger.

Life Views Via Death’s Dynamic Portal

Mom continues to resign from life. Each day I watch as she moves herself back a step further from the world, through decisions about no longer engaging in the wonder that is life’s constant change. She refuses technology that would keep her connected to her grandchildren, or allow her to watch the progression of a pregnancy of a loved one who lives far away.  She chooses to eat the same food profiles that are comfortable and familiar despite advancements in health or science. She has lost interest in current movies, trends, topics of the day, and voices her opinions based on a static loop of ancient information. In short, she has dug in her heels and is not budging on the idea of leaving a world that IS kind of carved in stone. The irony is, that all of this contributes to her ever diminishing happiness, and sense of isolation.

Please do not misunderstand, I admire her tenacity, and honor the right to make these choices. I get that these are memories and things that bring her comfort. Some of the recurring loops, may even be the result of TIA’s and Dementia. While I understand the power of the warm feeling that will always be present when I hear Earth, Wind, and Fire’s Fantasy, or think of Nancy Wasserman while eating Oreo cookies, I do not pretend to know what she feels like being 90, having lost so much physically, mentally, emotionally, and spiritually, or  feel it has all gone by in the blink of an eye.

The irony is, that everyday as her witness convinces me more of wanting to embrace the limitations of aging that surely come, but with a new kind of positiveness. She inspires me to continue the exploration of ways I can keep my body flexible, my energy flowing, my mind, heart, and spirit open to all that life has to offer. I certainly have real concerns about our children, the earth, humanity, and general state of the world yet this in no way diminishes my desire to see what happens next. I believe in a world that has the capacity to  become more human not less, by learning from mis-takes, evolving and adapting.

While mom is my greatest teacher, I am also inspired by elders like Maya Angelou, Tommy George, and the legacy of Floyd Red Crow Westerman, who not only continue(d) to challenge themselves to learn, grow, become more open, tolerant, flexible, loving, kind, but are (were) willing to risk sharing their discoveries about aging with us rather than hiding away.

Somedays I feel sad that to continue to live the life of my dreams means, leaving her behind on some levels, to wallow in bemoaning a world that no longer exists. Continuing to abandon the misnomer of traitorous and ungrateful daughter requires daily diligence, and renaming the knowing that comes EXACTLY because of her particular way of being on this earth as she prepares to leave. It is precisely the fact that she has offered this gift, that forces me to look for ways to take steps forward toward creating a future of dying for myself, that I hope will be different from hers.

I enjoy the challenge of young people with radically different backgrounds and ideas from mine being part of my circle. Nothing makes me happier than knowing they have brought enriching new discoveries of music, poetry, struggles, technologies, and ideas while I have offered some small comfort or mentoring in exchange. While I can’t say for sure yet what the particulars of that path will look like, I do expect to work in partnership with people who hold similar values about positiveness and the worth of all human beings, in an inclusive multicultural environment that includes, opportunities for writing, teaching, public speaking, travel, physical activities, mentoring, learning, laughter, fun, friends, family, and love.

When I dare to look forward to my potential future at 90 and beyond, once past the fears about the unpredictability of human flesh, finances, or care, I see blazing bright eyes in a face that is still curious, compassionate, and interested in life. I hope I will approach my final journey with the same pragmatic enthusiasm that I have for travel now. There are bound to be discomforts, delays, inconveniences, along with treasures, discoveries, new understandings, and ultimately greater peace.

Until whatever is coming next arrives, thank you for being such patient and loving companions along the way. Blessed be.

International Intrigue and Outreach

For the month of January I used an inexpensive paid Stumbleupon application to steer potential visitors to my blog and tracked the results. Some information, like the fact that the highest usage age category of Stumblers is 17-25 years old, was expected. Other stats for instance; there were six hundred travelers from 69 countries outside North America who spent between 4 seconds and 22 minutes viewing this site, were surprising. There were visitors from every single continent and countries that have always sparked my imagination.

The top three categories searched by viewers were Self Improvement, Women’s Issues, and Quotes. Of the 890 women that visited the site 50% clicked like, as did 33% of the 680 men. All of this, has brought a burning curiosity to my homebound mind, that has nothing to do with numbers of blog subscriptions.

First, I am hugely grateful for the opportunity to think about something other than the latest evidence of continuing daily decline in my beloved ‘girls’.  AND I DO want to improve the relevancy of this blog, so that it is inspiringly authentic about end of life care-giving issues.

I would love to hear from you. I wonder about who you are and what your lives are like. I am curious to know what you DO find on the internet that furthers your self discovery and understanding about the world. I wonder if some of you are housebound like I am, and use the internet as a way to feel connected to something larger than your own troubles. How do you experience care-giving, either as a provider or recipient of care? What nourishes your ability to stay present, and do all that is required without losing yourselves in the process?

It occurs to me that I would like to start an international dialogue about promoting living and dying fully with awareness, dignity, and peace. I hope anyone who stops by, whether a regular reader or guest, will feel free to share an insight or two about themselves, or an experience they have had in an effort to promote human understanding about this birth life death life continuum. Although I am looking for shared participation rather than opinions/philosophies, all are welcome. Whoever you are and wherever you find yourself today, may you uncover peace and blessings in your journey.

Baking for Death and Other House-guests

For fifty-five years, death has lived side by side with us in this house. In my earliest memories it lurked behind stories never told, about grandparents stolen by the Holocaust. By the time my brother and I were eleven and thirteen, the unwelcome guest took on a more ominous shadowy presence when our father experienced his first heart attack. It seeped out of our closets, growing steadily through each successive medical crisis, and subsequent intervention.

Eventually, hanging ever present in the air, death sprinkled fine particles of  fear, dread, and an occasional note of good fortune, onto birthday cakes, and inserted itself in special occasions. It held a place at the breakfast table with my parents every morning for the next sixteen years, until dad finally succumbed at the age of sixty-four.

During the years after, while we continued building our lives, for a moment or two, death graciously relinquished the position of seemingly permanent residence it held in our family home. It seemed through marriages, the birth of grandchildren, life’s ups, downs, and a few very close calls (9/11, breast cancer, a pancreatic tumor) we all breathed a little easier. It would visit once in awhile through the devastating loss of a beloved friend, family member, or neighbor, but always left of it’s own accord each time grief began to ease.

Over the course of  the year I moved home, we began to face the unimaginable about mom’s best friend since kindergarten – Ruthie. It was at that time, that death began slowly reinstating itself. While at Ruth’s graveside, the tombstone with the name Zwecher was clearly visible over my mom’s left shoulder. It was a haunting literal image, during mom’s MOST devastating time of loss. Death followed us back home that day, and has once again become a constant presence in our house.

Only this time, our house-guest seems to have matured. It is certainly still demanding of our attention, but in a far less obtrusive and destructive way. No longer a harbinger of something awful, or hurtful, it is now more of a guide towards a great mystery. Perhaps we have grown more comfortable with each other over time. Daily, mom and I speak openly about the presence, or, what she has come to call “the inevitable”.

Recently, after posting the blog about mom’s new health developments, I began to give thought not just to the event, in some unspecified esoteric way, but to the details to be negotiated before, during, and after the time when she is no longer here. Mom has told me that she wants ‘deli’, and from scratch, ‘home made Bethie baking’ (because she knows the act of creating these delicacies will help anchor me), and a celebration back at the house. We have filled out the form for her military service commemorative plaque, and placed it with the documents that will be needed in the moments immediately after she is gone. Beyond that, she has asked me to give thought to what I want to have happen, because as she put’s it “let’s face it, I won’t be there. It’s more about what you and Mike need to heal”

After months of an extensive search I recently landed on the song we will either sing, or play, that will anchor the ritual of mom’s passing. Now hear me dear readers, there was an immediate sense of relief and happiness, yes HAPPINESS to have found this. It is a beautiful piece by Jennifer Berezan called “Fall Down as The Rain”. The first time I played it for my mother she cried. Then she told me two things, first – “it is beautiful and very comforting”, and  then – “I am not sure people will get it”. Even as I write this I smile again, and remember reassuring her to give them more credit. All of which leads me to the reason for such happiness and the point of this particular post.

Everyday there is another phone call or message, that reminds us that our particular herd continues to thin. And while these stories are often sad, they are also quite beautiful and quite simply, most often stories about love, courage, grace, and dignity.

On the way home from Pilates yesterday, while singing along to this song I did burst in to tears and sob for the few minutes that it took to get to the bottom of Bacon street. I was thinking about all the people I was missing in that moment. As the light turned green I thought of my sister LaDonna and called her to share a laugh. Our conversation yielded the belief that if I stand on a foundation of this song today, it will already be familiar and comforting when the time comes.

I arrived home nostalgic, and definitively happy. Mom and I shared lunch and then began looking through her small green file box of ancient recipes on faded smudged index cards. As I read the recipes to her, she recounted stories of events where each one had been served. I asked her if she could pick two today which ones would she want me to bake. She looked very young and sparkly as she selected an apple cake (from someone in her family), and poppy seed cookies (that her cousin Sylvia always made).

After a quick ingredients check, I called my ever ready special baking buddy – Hailey  who was more than happy to experiment with me. While waiting for her to finish lunch, I peeled and sliced the apples, and found a memory of my grandmother.

As a child I had watched in wonderment the first time I saw her peel an entire apple in one long continuous peel. This is now something I do, with precision and care exactly as she did, without a second thought. I was smiling along to the very satisfying sound that is particular to slicing good apples into thin arcs. Tossing them in a bowl with a ridiculously decadent amount of good cinnamon and sugar, brought me immense joy.

As Hailey was putting the finishing touches on our masterpiece, we talked about a time in her future when she will be baking for her own family, or friends. She wondered how she will remember the recipes. I told her that she could copy the recipes, or if we are very lucky she will be able to email or call me, and we will share a memory about the first time we made this particular cake. And I could feel death there, right behind me whispering in my ear, “that is, if you are still here”, but this time it was like sharing a small joke with a life long companion that fortunately, is not needed by my young friend, just yet.

Mom dozed while Hailey and I chatted between projects before beginning the delicate poppyseed cookies. Mom said the kitchen smelled delicious, but we were making too much noise. I loved watching Hailey, who with a sense of high ceremony, meticulously dipped the glass in cinnamon and sugar to carefully press the cookies thin.

The cake was apple luxurious, with a hint of ‘nana’. The cookies perfectly thin and crisp. By that time, Hailey’s mom Erin, had joined us. The air was filled with a sense of celebration, as it often is in the presence of such company.  I sat on the red ottoman watching mom’s face as she sampled our efforts. I was filled with gratitude for Hailey, bent in concentration over her slice of apple cake. In the background, I heard the distinct sound of our other guest, the one we all try hard to ignore. It was a gentle voice, singing softly, that come to think of it, sounded a lot like Jennifer Berezan*.

*check out Jennifer Berezan’s work at edgeofwonder.com