On Death, Duty & Dysphoria

On March 17, 2010 my beloved 89-year old grandmother was referred for hospice care. Her dearest wish was die at home surrounded by those who love her. Because she has been living with me for the past few years,
this meant that she would die in my house. On March 21, she got her wish.

I started this blog because I discovered that writing about the situation helped me to process the tide of new
information and swirling emotions that comes with being a hospice caregiver. By documenting my journey,
I hoped it would help me to cope with everything that happened in the days to come. It has.
I continue it now, both as a tribute her remarkable life, and as a means of coming to terms with her loss.

Everyone handles the death of a loved one a little differently. If you are dealing with a similar situation,
or if you are one of the many adult children or grandchildren faced (as I have been) with making end-of-life care choices
for an elderly relative, I hope these posts will help provide some perspective. Perhaps, in some small way,
my experiences will help you cope during your own journey.

Thursday, March 25, 2010

Robin Hood

Because today is Brian's birthday, I think it is only appropriate that I should dedicate today's post to him.  Brian has been an important part of Peggy's life - and mine - for many years.  She loved him like a son, and he treated her like a queen.

Brian is, in so many ways, an exceptional person.  (Obviously, I am extremely biased, but this is my story.)  Brian began his career as a professional actor, working at several well-known regional theatres and Shakespeare Festivals, where he developed a life-long love for the Bard.  He is a terrific actor, and a born teacher.  This makes him a fantastic director - he can make good actors better, and can coax exceptional performances out of the most inexperienced performers, as long as they are willing to work.  He is also a brilliant musician and composer - he can play about any instrument he picks up, and has written some of the most beautiful music I have ever heard.  He is visionary - idealistic, a big quixotic, and passionate.  He is sometimes temperamental, and always a perfectionist - he sets a very high standard, and has little patience for those who do not take the work as seriously as he does.  He is a romantic - he loves nature, poetry, and music, and looks for (and appreciates) beauty in everything he sees.  He is also one of the kindest, most compassionate and caring men I have ever known.  He is a good man with a good heart and generous spirit. All in all, I think he's pretty wonderful, and I am grateful every day to have him in my life.

When I first met Brian in the spring of 1992, he was traveling all over the state of Iowa as a teaching artist, doing Shakespeare workshops in the schools.  I had recently moved back to Des Moines from Orlando - after three years of doing primarily children's theatre, I was ready for a change.  I thought the change would be graduate school. But Brian had this crazy idea about starting an outdoor Shakespeare Festival in Iowa, beginning with with a small conservatory, or Shakespeare "camp" for high school students, to help train a new generation of actors.  Shakespeare is also one of my great passions, and the idea of building something like that from the ground up was too tempting to resist, so Brian and I became partners.  Almost immediately, we also became great friends.

Our Shakespeare project folded in 1996 - I'll spare you all the gory details, but suffice it to say, it involved a hundred year flood, a lack of funding, and being just a little too far ahead of our time.  There's a lot of Shakespeare production going on in Iowa these days, but in the mid-1990's, aside from a few college and community theatre productions, we were the only company going that was dedicated to Shakespeare, and certainly the only company hiring professional actors from all over the country to perform and to teach young actors.  Alas, we were never able to bring to fruition Brian's beautiful, crazy dream of building a functioning replica of Shakespeare's Globe Theatre on the Iowa prairie.  ( If we ever win the lottery, we might still try it.)

Shutting down the project was a horrible ordeal - it's heart-wrenching to have to give up on a dream - and Brian and I were out of contact for several years after it folded.  We re-connected in 1999 (quite by accident - a chance meeting in the grocery store) and discovered that the bonds of the friendship had not been broken - just singed a little around the edges.  So we started having coffee and an occasional lunch together, just to chat and maybe achieve some sort of closure.  But the theatre bug is insidious - once it bites you, the infectious desire to do shows is with you for life.  Once Brian and I started talking, the fever was upon us, and we became business partners again, focusing our efforts of trying to create original work this time, with a little Shakespeare thrown in now and again to feed the craving.  Somewhere in there, it dawned on us that what we had together transcended both our friendship and our creative relationship - that it was, in fact, love.  Eventually, he moved in with me - and, because she was living with me, with Peggy.

Peggy was crazy about Brian from the moment she met him.  To the best of our recollection, I introduced them in the summer of '92, when my mom brought Peggy up from Florida for her annual summer visit.  At the time, Brian was sporting a page-boy haircut  and a Van Dyke - mustache, thin beard, cropped at the chin, and a soul patch.  Peggy thought he looked exactly like Errol Flynn in the classic 1938 film, The Adventures of Robin Hood.  When Peggy came up with a nickname for someone, it usually stuck.  To her, Brian was, always and ever,  "Robin Hood".

Peggy knew that Brian and I were meant to be together long before we did.  She told me once that, even in the days we were just "good friends", she saw something in the way Brian and I treated each other that reminded her of what she had with my grandfather, and she prayed that we would someday figure that out, and end up together.  To her, "Robin Hood" was already a member of our family.  When Brian's mother passed away some years ago, Peggy was happy to serve as his surrogate mother, trying to fill, in some small way, the void left in him from that loss.

Brian was absolutely wonderful with Peggy - unfailingly kind, helpful, and caring.  Although she could be, at times, exasperating, his patience with her (while not inexhaustible) sometimes exceeded my own.  He always went out of his way to bring her tiny treasures, to listen in her stories, to fix things she had broken, and to soothe her when she was unhappy or upset.  He brought her coffee in the mornings, and always took the time to give her a hug, a gentle squeeze, or a peck on the cheek, whenever he saw her.  In a thousand ways, in word and in deed, he let her know that he loved her - not as an obligation, because he loved me and she was my grandmother, but of his own volition.  Peggy knew this, and adored him.

From the time Peggy moved in with me until she started slowing down, one contribution she insisted on making to the household was taking care of the kitchen.  Although I was doing most of the cooking, she was happy to take care of the dishes, scrub the stove and countertops, even clean the science projects out of our refrigerator.  I love to cook but I hate cleaning the kitchen, so I was happy to have her help, as long as she felt well enough.  She took the duty very seriously - she became quite angry if you put your own dishes in the dishwasher - it was robbing her of her "job".  She used to whistle, hum, or even sing as she worked - deaf as she was, she was always in tune, but always a little on the loud side, because she couldn't hear herself.  Her kitchen cleaning song was usually a speeded-up version of the Hawaiian song Pearlie Shells - she had heard it once on a trip to the islands, and although I don't think she never knew all the words, that never stopped her from performing a rousing rendition.  In keeping with the "Robin Hood" theme, Brian took to calling her "Maid Marian" - they always signed their notes and cards this way, down to the tags on their Christmas gifts.

As Peggy found it increasingly harder to be self-sufficient and mobile, Brian stepped up to accommodate her growing needs, installing rails in the bathroom and on her bed to help her get up and down more easily, taking little walks with her (either outside, or up and down the hall in our house), bringing her meals when she didn't feel like coming to the table, and helping her with whatever she asked him to do.  As she grew weaker, demanding more and more time and care, Brian was there, and Peggy was always profusely grateful for every little thing he did.    For myself, I can say honestly, that without Brian's help and unflagging love and support, I do not know that I would have been able to take care of Peggy in the final phase of her life.  For that, I will always be profusely, and profoundly, grateful.

One morning, about a week before Peggy died, I was awakened early one morning to the sound of her calling plaintively, "Robin Hood! Robin Hood!"  From her bed, she had seen the light go on in the bathroom and knew he was awake.  Still not quite awake myself, I stayed in bed and listened to their conversation - or rather to her conversation.  She was so loud, you couldn't help but hear her.  She'd had a bad dream - that my mother and I had taken her to a nursing home and left her there to die.  It upset her so much she had not slept the rest of the night, but she waited until someone was awake to share her fears.

"Robin Hood," she wailed, "please don't let them put me in a nursing home!  I don't want to die around a bunch of strangers - I want to die here, with you, and Lisa, and Doggie.  Please, Robin Hood - you have it in your power - please tell them not to send me away!  Please, Robin Hood, promise me, please, please! Promise!"

Of course, he did promise - that promise had already been made, by all of us.  But she needed to hear it, and she needed to hear it from him, because she trusted him to tell her the truth.  Once he had promised, she was, finally, able to go back to sleep.

Even as she became more housebound, Peggy loved to do crafts.  For Christmas one year I got her a card-making kit with bits of paper, ribbons, buttons, and stickers, and she began making her own cards.  After that every occasion always demanded a hand-made card from Peggy.  When she ran out of materials, we would buy more kits, or she would raid the supplies in my craft room (which she had pretty much commandeered as her own the moment she moved in).  She also started re-cycling old  cards, cutting out pictures and bits of writing and pasting them into new creations.  At one time, nearly everyone in our family, and many of our friends, were saving their cards for Peggy.  The cards she made were not always the most elegant of creations, but they were homemade, heartfelt, and always 100% Peggy.

One of the very last cards that Peggy made was a birthday card for Brian.  There's a sweet little drawing of a puppy on the cover, cut from some other, older incarnation.  Inside, along with other pasted bits of poetry, Bible verses, and little notes telling Brian how much she loved him, and thanking him for everything he did for her, was one simple, handwritten line:  "Be my son." When he showed it to me, I cried, as I have not cried in days.

So on this day, I give thanks for the life and love of our wonderful, darling "Robin Hood" - thank you for helping to fill my grandmother's last years - and especially, her final days - with love and kindness.  Thank you for your strength, your compassion, your wise counsel, and your patience.  And thank you for taking such excellent care of all of us.  You are truly extraordinary, and I am so lucky to share a life with you.  I Love You More Than Anything.

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