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.

Monday, March 29, 2010

Memorial 1.0

Back in the saddle, after taking a couple of days off.  Saturday was the memorial service - the first of two, as we will be having another one in Florida in May.  I was too wrung out to write on that day, and wanted to spend some time with friends and family who came in from out of town.  On Sunday, I slept - FINALLY.  I still woke up about every two hours, but I ended up sleeping most of the day.  No panic attacks, and I feel much better.

Today I had to hit the ground running, as I have two deadlines to meet by Thursday, and am running behind after two very unproductive weeks.  I still find it difficult to focus on business with so much still hanging over my head (thank you notes, sorting through Peggy's belongings, planning the Florida memorial), but I have to make a living.  Pity poor Brian, because nothing is going to get cleaned or cooked (at least by me) in this house until I get some serious work done.  I feel like I made some progress today, so at least I am headed in the right direction.

I would like to thank everyone who came to the meet and greet and/or attended Peggy's memorial on Saturday.  It was wonderful to be surrounded by so many people that Peggy loved who also loved her.  For those who could not make it, and in order to help myself remember it, I will re-count the events of the day:

I started my morning with - guess what - a Panic Attack.  I was in the process of getting ready to leave for the service when the toilet backed up.  I could not find the plunger to fix it, and the more I looked, the more  agitated I became.  By the time I did find the plunger and took care of the problem, I was hyperventilating. This lead to a 10 minute crying jag all over Brian.  After that, I was okay.  Good test of my water-proof mascara.

My greatest fear for the day was that I would not be able to make it through the memorial without having another attack.  Fortunately, I managed to keep it together - the morning meltdown was the only one I had that day.  (Of course, later in the day, I consumed a fair amount of alcohol, which tends to be conducive to relaxation.)

I had not been in the sanctuary of First United Methodist for many years.  It is my parents' church, but I have not attended a service there since I was in junior high school, and I don't remember it being so beautiful.  There were some gorgeous flower arrangements - including the one my mother picked out for our family (see photo above).  I was glad to see that many of them were colorful, very much in keeping with Peggy's spirit and personality.  Many people wore colored clothing, too, rather than mourning black - in honor of Peggy.

The service was meant to be a celebration of Peggy's life - it was simple, personal, and full of laughter as well as tears.  Mom did a fantastic job on the slide show of photos from Peggy's life, set to the tune of the old standard "Peg O' My Heart".  It was one of Grandma's favorites - it was the song that my grandfather used to sing to her, the one he always asked the band to play if they went dancing - it was "their song."  Brian played the piano - his own composition dedicated to Peggy.  Some members of the Harmony Central Chorus of Sweet Adelines sang two beautiful acapella numbers: "I'll Walk With God" and "From the First Hello".  Peggy was a charter member of the Des Moines Sweet Adelines, and it was a wonderful tribute to have them perform.

Pastor Barrie Tritle delivered a wonderful service - very upbeat and comforting.  I could tell that he really paid attention to the conversation he had with me and my mother.  He incorporated everything we asked for into the service, and added some lovely touches of his own.  Our dear friend Clive Elliott gave a wonderful eulogy, remembering Peggy through color and laughter.  Near the end of the service, we one of Peggy's favorite songs was played: "This Little Light of Mine."  It was a song she taught to all of her Sunday school classes (she taught Sunday school for more than 50 years), and we thought it was a perfect metaphor for what Peggy was - someone who added light to the world.  We all sang along, smiling through our tears.

A group of women from the church provided a luncheon for after the service - it wasn't fancy, but it was very kind of them to give up their time to prepare and serve the food.  I guess I've become cynical in my old age - we live in a world that has become so increasing disconnected and impersonal, I tend to be surprised by such small acts of human kindness.  How nice to be reminded that people can still be... well,  nice.

I was also very touched to see two of the staff from Home Instead - the respite care service who helped us care for Peggy before she was referred to hospice - who came to the church.  Home Instead is a fantastic company - my grandmother really loved all of the women who helped care for her in her final few weeks.  Even though their contract with us had come to an end, these sweet, compassionate ladies took the time to come and pay their respects. One of them - the wonderful Michelle - even came to the house last week with flowers, a cake, and a huge pan of lasagna. As Grandma would have said, "Honey, that's  another star in your crown."

Thank you to everyone who helped with the service, and those who attended.  Thank you to everyone who has sent cards and flowers, or brought food to my house (and to my mother's).  Thank you to everyone who has shared their memories of Peggy, either in letters, through e-mail, in person, and in the guest book for this blog.  Thank you for the love, friendship, and kindness you have given to our family - both to Peggy in her lifetime, and to us, in this time of sorrow.  The light of Peggy's presence is out now, but the light of her spirit shines on, in every life she touched - and I am sure that wherever she is now, she is still shining.  Thank you for helping us remember and celebrate her life.

Friday, March 26, 2010

Fallout

I am having panic attacks.   My chest feels tight, my heart pounds, I hyperventilate, I can't swallow, I get dizzy.  I feel an overwhelming sense of terror, although I couldn't say exactly what it is that frightens me.  Sometimes the attack lasts only a few minutes, sometimes for hours.  Once it takes hold, the panic is hard to shake.   I start to worry - not about what's causing the panic, but about about what's going on inside my body and how horrible I feel, which only seems to make it worse.

I find that cats help - our cat Gatsby is a cuddle bug, and he will sit in your lap and let you pet him until the end of time.  After a few minutes of stroking his soft, silky fur, feeling the warmth of his body, and listening to the steady, reassuring hum of his purr, I start to feel a little better.  Listening to music is also soothing.  There's a light classical station on our digital cable that we call the Puppy Channel.  When Chauncey was a puppy, if we had to leave the house, we would kennel him and leave the television tuned to this station.  It seemed to keep him calm.  Although he's way past the kennel stage, we still turn the Puppy Channel on for him when we go out - it keeps him from chewing up the furniture.  Although I am in no danger of masticating an armchair, the Puppy Channel seems to help me, too.

Crying also helps - the release of emotion seems to help loosen the vise around my chest, and I can breathe again.  Unfortunately, I sometimes find it hard to turn on the waterworks, especially when I am alone.  Writing also helps - it gives me a focus that distracts me and helps lessen the virulence of the symptoms.  But when it gets really bad, the only truly effective remedy seems to be Brian. His touch, and his gentle presence, is healing.   I fall apart - and he puts me back together again.  Unfortunately, he's  not always here to handle the reassembly, particularly during the work day, but I'm not about to ask him to stay home with me, in case I fall apart.  I know I just need to suck it up and deal with it, but it is not easy.

I can't say exactly what triggers an attack.  Sometimes it hits me upon waking, before my conscious mind has formed a coherent thought.  Sometimes, it just happens.  On Wednesday, I was planning to go out and run some errands in preparation for Brian's birthday.  Every time I started to walk out the door, the panic would set in, and I just couldn't do it.  I was afraid to drive the car - I just knew I wasn't in control.  I don't know whether it was leaving the house alone, or the unconscious realization that, for the first time in months, I could leave the house without having to worry about leaving Peggy.  Maybe it was a little moment of agoraphobia, because I hadn't left the house in more than a week and the idea of venturing out into the world again triggered my flight response.  I eventually managed to get out later that evening, when I went with my mother to meet with the minister who is officiating at Peggy's memorial.  I'm not sure I could have made it there on my own.

Yesterday afternoon, I was trying to deal with some details for the program for Peggy's memorial.  The digital image that the funeral home had scanned was poorly done, and I was Photoshopping it to make it look better.  The draft of the program arrived via e-mail, and it needed work, too.  I was also trying to get confirmation on the group of singers from Sweet Adelines, whom we had asked to perform at the service, and get that information added to the program.  None of these were huge things, and none of them outside the scope of my experience.  As a theatre producer, I often deal with booking and scheduling issues.  I have some desktop publishing skills, so working on the program design and tweaking a photo is not a challenge.  Yet suddenly, I became overwhelmed by all of the details. The panic set in, and stayed with me until Brian got home.  He walked in the door and I burst into tears. After that, I felt better.

Sometimes it's a conversation that triggers it.  I seem to be perfectly fine talking about everything that has happened with my family or close friends.  When I start to talk about it to someone I don't know so well, that hysterical feeling starts to creep in and take over.   Maybe it's because all of this has happened in this very tiny bubble, within the confines of my home, and very few people know all the details.  Bursting that bubble and revealing those details - and my pain - to the wider world makes it seem more real.  Inexorable.  Final.  Ironically, I seem to have no problem disclosing any of it here, in this virtual world.  In person, it's much more difficult.  I'm hoping that talking about it here will help me to conquer the problem.

You have to understand - this kind of emotional turmoil is not normal for me, which makes it all the more alarming.  I suppose I must be suffering from post traumatic stress - everything that has happened is finally catching up with me.  The not-sleeping thing doesn't help, either, and I know my hormones are out of whack.  The attacks are exhausting - and I have already been stretched to the limit of my physical, emotional, and mental reserves.  Suffice it to say, I am a mess.  I suppose I could go to the doctor and get a prescription for Xanax or some other medication that would help chill me out, but I have never been big on prescription drugs.  However, there have been times over the last few days that I wish I had rescued a couple of Peggy's Lorazepam pills before Toni dumped them in the kitty litter.

The emptiness in the house is palpable - especially after Brian leaves in the morning.  I still find myself listening for sounds from Peggy's room.  Sometimes I imagine I can still hear her.  On an intellectual level, I know it's just my mind conjuring up familiar sensations, blurring the line between memory and reality.  On an emotional level, it wrecks me.  It's hard to come to terms with knowing I will never hear those sounds again, that she is completely, unequivocally Gone.

Brian thinks the panic comes with feeling out of control.  He's probably right.  I am a fairly controlled person - calm in a crisis, able to manage stressful situations without blowing up or falling apart.  I don't often loose my temper - I get cranky, but I don't have tantrums.  I tend to hold things in until some inevitable point where I can no longer contain the emotions, and then I explode, but not often in public.  I'm cool in a crisis - and this is my problem.

"There's something edifying for you in identifying a problem, finding a solution to it, and rolling up your sleeves to fix it," Brian reminded me, as we sipped our morning coffee.  "But now the crisis is over, and there's nothing for you to fix.  You can't fix death."

I know this is true.  I also know that taking care of Peggy has been a huge part of my everyday existence.  Now that she is gone, there is a huge void in my life, and I don't quite know yet how I am going to fill that emptiness.  I know that I will figure it out eventually, but the sheer magnitude of the change is almost paralyzing to my psyche.  Right now, all I can do is try and cope.

I've just read what I've written, and I'm disgusted at my weakness.  Whine, whine, whine.  I am going to post this anyway, in case someone who reads this is in a similar place.  This is by way of saying: Okay, this sucks, but it is not unusual, and it will pass. I am not the first person to experience this kind of physical response to an emotional upheaval.  I know I am not alone in what I am going through.  And neither are you.

Time to go find a cat and listen to the Puppy Channel.

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.

Wednesday, March 24, 2010

Back to the Beginning

Many people have asked me how it happened that I ended up taking care of my grandmother at the end of her life.  I suppose it is a reflection of our society, where busy lifestyles, lack of time, lack of space, and financial considerations often force families to leave to others the primary care of their elderly relatives.  It's a difficult choice to put your beloved parent or grandparent in a nursing home.  Sometimes it's the best possible choice, both for you and for them.  Sometimes it's the only choice you can make.  Our family chose differently, but I cannot shine a halo over our heads and say that makes us better than anyone who chooses differently.  I do own my choice - I believe that, although it was one of the hardest things I have ever done, allowing Peggy to die at home with us was the right thing to do.

I think I can say that my relationship with Peggy is atypical of the usual grandmother/granddaughter relationship.  The reason for this dates back to the beginning - or rather to my beginning.  My father was a test pilot for the Air Force.  I never knew him because he was killed in an accident about five month before I was born.  He was my mother's high school sweetheart.  They had only been married about six months when he died, and she was stunned by the loss.

The way Peggy always told the story, when I was born, the doctor suggested that it would be good for my mother to go back to work (she was a teacher) as soon as possible. He felt that if she had nothing to do but stay home and take care of me, she would wallow in her loss and feel isolated and depressed.  In those days single parenthood was not as common as it is today, and my grandparents, with their strong traditional, Midwestern values, thought it would be better for me to grow up with two parents.  They offered to adopt me.  My mother wouldn't allow that, of course, so in the end, they decided to share me.

My mother and I lived with my grandparents for the first two years of my life.  Mom went back to work, and Peggy took a year off from her job (she was a secretary/bookkeeper at Younkers, a large department store in downtown Des Moines) to take care of me.  For the first year of my life, I spent more time with Grandma than I did with anyone.  Of course, I have no memory of this.  But I do know that, from the beginning, both of my grandparents regarded me more like a daughter than a granddaughter, and I had a unique bond with both of them.

When I was about two, my mother and I moved to a little apartment about two miles from my grandparents' house.  Although I was with my mother all week, I spent many weekends at Grandma's house.  I didn't know this at the time, but one of the reasons for this was that Mom had started dating.  When I was four, she re-married.  He was a teacher, divorced and sharing custody of his two children, and we moved to his house in West Des Moines, a suburb about 10 miles across town.

My relationship with my step-father has never exactly been warm and fuzzy.  I have never been quite sure why this is so.  Our interaction over the years ranges along the spectrum between cordiality and controlled hostility, depending on what is going on at the time.  We just never quite warmed up to each other.  Maybe he saw me as an inconvenience, something that stood in the way of his relationship with my mother.  Maybe he recognized that the bond I had developed with my grandparents was never going to be superseded by an outsider. Maybe he just didn't like me.  It really doesn't matter.  That's another bundle of baggage and I'm not going to open it up here.  Suffice it to say, it quickly became clear that he would not be taking on the role of "Daddy."  I have always thought of my grandfather as my true Father.

After my mother re-married, I continued to spend at least one night of every weekend with my grandparents.  Those weekends were absolutely the happiest times of my childhood.  When my grandparents retired, they became "snow birds", spending the winters in Florida.  The months without them were torture for me - long distance phone calls were expensive, and although I did get to spend an occasional vacation with them in Florida, it was never enough.

Grandpa suffered from asthma and emphysema.  As he grew older, he found it harder to breathe, particularly during the harsh Iowa winters, so when I was about 10, he and Grandma sold their house in Des Moines and moved to Fort Myers Beach, Florida.  After they moved, I began spending summers with them on the beach, and did so until the year I graduated from high school, sometimes bringing a friend from Des Moines along with me for part of the summer.

In August of 1989, when my grandfather was hospitalized, and eventually diagnosed with mesothelioma, the doctors told him he had six months to live. I was between theatre jobs, having just finished a season at a theatre in Buffalo, NY, so I packed up my belongings and went to Florida.  After Grandpa was well enough to leave the hospital, I stayed with them for a month or so, helping out as much as I could.  Finally, Grandpa said, "I'm not going to let you sit here and watch me die - go live your life."  Although I was loathe to leave, I took his advice and moved up to Orlando.  It was a good compromise, as there was a creative community there where I could get work, but it was also close enough that it wouldn't take me long to get back to Fort Myers if something happened.

Over the next few months, I made many trips back, as Grandpa was in and out of the hospital many times.  The last time I saw him was about two weeks before he died.  I was in the middle of stage managing a production of Midsummer Night's Dream in Orlando,  but I found someone to cover for me for a couple of performances and rushed down to see him, because the doctors were telling us that "this was it" - the only time in my career I've ever skipped out on a performance.  While I was there, Grandpa started to feel a little better, even getting out of bed to take short walks around the hospital corridors.  It was on one of these walks that I knew he was preparing to leave us.

We were walking through the hospital, Grandpa trying to hold the back of his hospital gown closed so as not to "flash" anyone his behind, and me, rolling the wheeled stand with the IV bottle that was connected to his arm.  The conversation went something like this:

Grandpa: "Now I've told your mother" (meaning Peggy)  "that she is not to move back to Des Moines after I'm gone.  She is perfectly capable of taking care of herself, and I don't want her to be a burden to any of you."

Me:  Don't worry about Grandma.  We'll take care of her.

Grandpa:  "I know you will, when the time comes, but the time is not now.  Right now she would just be a nuisance, sticking her nose into everyone's business all the time, and that's not fair to you.  So I made her promise, and I want you to know that in case you have to remind her of that promise."

I never did have to remind her.  Grandma kept that promise she made to Grandpa - she did not move back to Iowa until we asked her to do so, more than 10 years after Grandpa died.  All the time she was with us, her greatest worry was that she was too much of a burden for us.  Even at the end, she always tried to be as little trouble as possible.

So that is a bit of history, by way of explaining how closely my life has always been entwined with my grandmother's, and why I feel that taking care of her was, naturally (at least partly), my responsibility.  She took care of me at the beginning of my life.   It is only right and fitting that I should have chosen to take care of Peggy at the end of hers.  I loved her.   I owed her.   And, I believe, I have done right by her.

Tuesday, March 23, 2010

Where Do We Go From Here

I am still locked in what I have come to regard as the Caregiver's Sleep Cycle - I can't seem to sleep for more than a couple of hours without waking up.  Whether it's an external noise or internal alarm that wakes me, it always happens with a shock, a rush of adrenalin, sometimes an audible gasp.  I lie there, disoriented, my heart pounding, wondering, What's happened?  What have I forgotten? What do I need to do?  Even after I remember that there's nothing - no sounds of distress, no medication schedule forgotten, nothing I need to do that can't wait until morning - the initial jolt from waking is so severe, it sometimes takes hours for me to get back to sleep.

Yesterday, I spoke to a friend who had (also with the help of hospice) provided end-of-life care at home for her sister, who passed away after a long and courageous battle with cancer.  Although her ordeal ended nearly a month ago, my friend says she is still not sleeping well.  While I take some comfort in knowing that there is someone else who understands EXACTLY what I'm going through when I say I cannot sleep, I'm also thinking Dear God, another MONTH of not sleeping - will this EVER be OVER?


The last two days have been filled with busy work on the memorial service - writing the obituary notices that will run both in our local paper and in Florida, going through boxes of photos and old photo albums to select pictures for a slide show to run at the memorial, downloading songs that were Peggy's favorites.  The activity seems to be helping my mother keep it together - the distraction, combined with looking at images of Grandma in happier, healthier days, is taking (at least temporarily) the edge off her grief.


I have my moments of temporary insanity.  I can generally talk to one of my friends, or one of Peggy's friends, about her death without getting emotional.  But this morning when I called to make an appointment with my hair stylist and explained I needed to get a haircut before my Grandmother's memorial service Saturday, I got all choked up.  Ridiculous.  The tears seem to come at the oddest times, but they rarely last more than a few moments.  I'm still waiting for the gut-wrenching breakdown that is surely ahead.

I have not yet been able to read her last letter to me, but I am wearing a ring she left me - the diamond anniversary band my grandfather gave her to replace the inexpensive plain band she had worn when they first married.  I have fairly simple tastes and it's a little too much "bling" for me to wear every day, but I'm not quite ready to relinquish it to the safe deposit box just yet. Right now, it feels like a sort of talisman, as if wearing something that meant so much to her keeps her close.  I wear it on my right hand, along with another family talisman - the wedding band that belonged to my father, who died before I was born.  If Peggy really did go to Heaven, I wonder if she met him there, and what that conversation was like - hopefully, he wouldn't have to shout at her, or write on an erasable board.

When I started this journal, I had no idea how long it would continue.  I guess I was thinking (a little naively) that the end of my grandmother's life would not come quite so soon.  Now that it has, I have been thinking a lot about how to continue.  I believe I need to continue - there's something very therapeutic about spilling one's guts in a semi-controlled fashion.  So from here on what I plan to do, as a means of writing my way through the grieving process, is backtrack a bit and try to explain how I got here.  I'd also like to answer some of the questions I have been asked by a number of people in the last few weeks, including the most common one: Why did I feel compelled to take on this responsibility?

One of the things I did not fully realize is that we were providing end-of-life care for Peggy, long before we knew (or were willing to accept) that we were doing it.  In a way, this was a blessing, because the span of time between our knowing that  she was actually dying and the time she passed was relatively short. If someone had told us months ago that she was dying, and we had spent all that time waiting for the end, I don't know if I would have had the strength to endure it.  But we were protected, both by our ignorance of Peggy's true condition (something I also feel compelled to explain) and our hope that she could still, somehow, get better.

In addition to writing about the end of her life, I'd  like to continue sharing my great memories of Peggy - and there are many.  I am also going to create another page for this blog - Peggy in Her Own Words - and share some of the stories she left for us in the wonderful Grandma journal from my bookshelf.  Peggy touched many lives when she was in this world - that in itself, is also a story.  Now that her physical presence has departed, I think the best possible way honor her memory is to help her to continue to touch the lives of others by sharing her story.  I hope that you will join me for this new stage of my journey as I look back in order to move forward.



Monday, March 22, 2010

The Phantom Step

Monday morning.  I have decided to take another day off from work, as I'm not quite able to switch my focus from what has been my world over the last several days.  Too much to remember, process, and understand.  I also need to rest, as I am bone weary.  I should have tried to sleep late this morning, but yesterday, not thinking clearly, I told the rep from Recover Care - the company that leased us the hospital bed - that it was okay to come and pick it up between 8 and 10 this morning.  I should have told them to wait and come in the afternoon, but I guess my thought was just to get the thing out of here as quickly as possible so I wouldn't have to look at it anymore.

So here I am, still in my pajamas, drinking coffee and trying to stay awake.  By the time the bed removal is complete, I'll probably be so hopped up on caffeine that I won't be able to go back to sleep. Not that I slept all that well in the first place - my mind is not yet used to the idea that I no longer have to reserve a level of consciousness in readiness for an emergency distress call from Grandma's room.  Perhaps if I recount what happened yesterday, it will force my subconscious to a higher level of acceptance.  So here goes:

Our hospice nurse Toni had recommended giving Peggy doses of medication at two hour intervals, taking a break during the night with a 4 hour interval dose.  Since Brian is a morning person and I am a night owl, he went to sleep about 10.  At 1 a.m., I did my last dose of the night.  Peggy was still unresponsive, and still moaning with every breath, although she seemed a little more quiet than she had earlier in the day.   When I finished dispensing the meds, I prepped the syringes with the next dose for Brian, who had set the alarm for 5.  As I was hoping to be able to sleep until 7, I went downstairs and crashed on the couch, where the sounds of Peggy's constant, whimpered breathing could not reach me.

Ever the light sleeper, I did wake up at 5, and listened to Brian's footsteps going up and down the hall, waiting for him to call out if something had changed.  He didn't, and when I heard him go back into our room and shut the door,  I settled down to try and sleep a little longer.  Chauncey woke me at about 6:45, ringing the little bell that hangs on the inside front door - his signal that he needs to go out.  As we do not have a fenced yard and live on a busy street, this means taking him out on a leash.  Sometimes I cheat a little by standing on our enclosed from porch and hooking him up to a 25-foot retractable lead, so I can stay in my pajamas.

After taking Chauncey out, I went upstairs to our room.  Brian was in bed, but awake, so I crawled in with him and we reviewed what was likely to be the "game plan" for the day - 2 hour meds, visit from hospice, mom coming over, laundry, trip to the grocery store, etc.  Brian said he had stayed with Grandma for a few minutes after he gave her the dose at 5, and said he thought nothing much had changed from the previous day. I got up and prepared the syringes, then went to Grandma's room.  Still groggy from all my broken sleep, I  had already squirted the Lorzepam into her mouth when I realized that the room was utterly silent.  That she was utterly silent.  Motionless.

I touched her forehead.  It was still warm, but her hands were already cold.  Still clutching the syringe with the blue morphine, I walked slowly to the top of the stairs and called to Brian, who was down making coffee.

"Honey?"  My voice sounded alien to my ears.   I know he heard the strangeness, because there was a long pause. His voice was different, too, when he answered, as though he knew what was coming.

"Yes?"

"I don't think she's breathing."

In a moment, he was up the stairs to accompany me back to the room.  He bent over her, looking, listening.  When he looked back at me, he didn't have to say a word to tell me what I already knew was true.  He just reached over and took me into his arms.  I couldn't cry yet.  I was numb.  "I'm not ready to fall apart yet, " I told him.  "I can't."

After a few moments, when he knew it was okay to let me go, Brian went back to Grandma and kissed her on the forehead.  "Bye, Peggy. We love you."  I kissed her, too, but I couldn't say anything.  Her skin against my lips was still warm.

I took a deep breath.  Time to get busy.

My first call was to Hospice.  When I was certain that Toni was on her way, I phoned my mother.

"She's gone, Mom."  My voice cracked on the words.  She said she would be right over, and I could hear that she had already started to cry.

I decided I was not quite ready to make more phone calls, so I sent a text to my brother in Denver and sister in California.  Since it was even earlier in the morning there and they were probably still asleep, I didn't want to bother them.  There was nothing they do could from where they were.  I sent another text to Suzie and Linda, two of Peggy's dearest friends in Florida.  They had been calling us daily to see how she was doing, and as it was an hour later there, I thought it was all right to disturb them.

Then Toni was there. I explained to her what had happened - more calmly than I thought possible - and we went upstairs.   Grandma's mouth was open slightly, and I could see that the inside of her lips and tongue were tinted blue - damn that blue food coloring!  Her skin, too, was beginning to take on a blue cast.  It took only a few moments for Toni to give her confirmation.   It was over.

Still numb, all I could do was stand there, nodding.   Chauncey came trotting in, squeezing past Toni to get his front paws on the bed and his nose near Grandma's face.  He sniffed, then pulled his nose back for a moment, then sniffed again, as if what he had smelled the first time was unusual.  He licked her on the cheek twice, then waited.

"Grandma's gone, Buddy.  Come down, now."  Reluctantly, he took his paws off the bed.  Heart-breaking. At that point, I lost it.  I ran out of the room, to the waiting arms of Brian and wept uncontrollably.

When I had pulled myself together a little, Toni was there to offer me a reassuring hug.  "It's okay, she said.  You did everything right.  I'll take care of her now."

I was still in my pajamas, so Toni suggested that I go take a hot shower, where I could relax and have a good cry.  It sounded like good advice, and I thought I might be able to be out and dressed by the time my mother got there.  I took some clothes to the downstairs bathroom, as I wanted to give Toni access to the upstairs one for whatever she needed to do for Grandma.  I turned the water up as hot as I could stand it, and stood there, willing myself to let go.  Cascades of water, but no more tears.

My mother had arrived while I was in the shower.  I found her weeping at the dining room table, and went over and hugged her.

"I couldn't go upstairs, alone," she said.  "Would you come with me?"  Of course I would.  I understood her reluctance.

I have always been a little squeamish about death.  I have never been able to pick up a dead bird, or a mouse, or any other animal.  In 8th grade science class, I abstained from dissecting the frog - I watched and filled out the worksheet while the boy who was my lab partner did the actual cutting.  I always try to look away when I see road kill on the highway.  One of my greatest dreads has always been going to funerals or visitations where the deceased is in an open coffin.  It is all I can stomach just to go and look at the person - which I always feel compelled to do, out of respect for the family - but I can never bring myself to touch that cold, painted shell.

In November of 2008, when my cat Petruchio died, at the ripe old age of 15, I decided to have him cremated.  Sadly, he passed away while Brian and I were on a business trip.  The emergency vet who attended him had wrapped his body in a sheet, which my mother (who been with him when he died) placed in a bag and kept in her garage until we returned.  I loved Petruchio dearly, but I was terrified of looking at him - I couldn't open the bag, or even pick it up.  Brian had to do that for me.

When we arrived at the office of our vet, who was handling the cremation, Brian coaxed me to take one last look at my sweet Petruchio.  The bag was sitting was in the trunk of the car, and I let Brian pull the sheet aside, just enough to uncover Petruchio's face.  His body was curled up as if he was sleeping. It was all I could do do bring myself to touch his fur one last time.  I was glad I did that, but it wasn't easy. Perhaps if I had actually been there when he died, had been able to feel the warmth of him before he grew stiff and cold, it would have been easier.

Even though I had not been present at the moment Peggy died, I had no fear of her now.  I had touched her so many times in the last few days, knowing each time she was that much closer to leaving us. Her body was just a container.  Now that was empty, and she was in a better place. There was nothing to be afraid of.  Still, it wasn't hard for me to comprehend my mother's fear.

Toni came downstairs, then.  She told us Grandma was all prepared, and that she would call the funeral home as soon as we were ready.  We asked her what we needed to do now.  "Not a thing," she said.  "I'll take care of everything.  That's why I'm here."  She pulled out her phone and began making calls.

Mom and I went upstairs.  Brian, who was in the spare bedroom that serves as a music room and his office, came out to give Mom a hug, and I went down the hall to Grandma.  Toni - bless her - had managed to get the blue dye off her lips.  She looked peaceful, but blank, almost weightless somehow - the essence of the person we knew as Peggy had floated away.  I touched her forehead again.   My mom stood in the doorway, crying.  "She's cold, now," I said.

"I can't touch her."

"You don't have to, Mommy.  She's not there, anymore.  She's with Grandpa, now."  I hoped that was true.  I know that's where Peggy believed she was going.

I don't know how long we stood there in the room.  Time was irrelevant.  Finally we went downstairs and told Toni it was all right to call the funeral home to come and get Peggy.  My phone chimed - a text message from Peggy's friend Suzie: "How appropriate that Jesus would come for her on his day, Sunday," she wrote.  For Peggy, a Sunday school teacher for more than 50 years, it was appropriate.  Someone (probably Brian) also remembered that it was the first day of spring.  That, too, seemed appropriate.  The season of her decline had come with the winter, and now it was over.

The next hour passed in a blur.  Toni helped us complete the final paperwork she needed to close Peggy's case.  We watched as she dumped the last of the Lorazepam tablets into a sandwich bag full of cat litter, then poured the remainder of the blue morphine over the top.  (This evidently is the correct way to dispose of medication, something I did not know.)  Our cat Stella jumped up, sniffing and pawing at the bag, wondering what this familiar substance was doing, of all places, on the dining room table.

Peggy's wish was to be cremated. We had pre-paid for her "death care" arrangements some time ago, as we had done with my step-father's mother, who passed away two years ago.  We found that having some of the details taken care of in advance made it much easier on the family - not so many decisions to have to make at a time when you're not thinking clearly.  The funeral home had provided us with a pamphlet to provide information for the obituary notice and the memorial arrangements, so we filled in the blanks until their crew arrived.

As we were going over details of her life, I suddenly remembered.  About 5 years ago, when my niece Sophia was born, Mom had given Peggy a book that was a "Grandma Journal" - a book with mostly blank pages containing little prompts, like "Where were you born?  What games did you like to play as a child?  How did you meet Grandpa?  Tell me about your wedding," and so on.  Peggy had filled the book with her memories, and we put it on the bookshelf in our living room.  I had forgotten all about it, but I knew right where it was.

We flipped through the pages, trying to decipher Peggy's handwriting (which had never been neat).  It was almost as if she was there talking to us.  There were stories in there that neither my mom and I had ever heard before.  What a wonderful gift, to find new remembrances of her life, after she was gone.  One that I didn't know was that she had been born at home, in her mother's parlor.  So she left the world as she came into - at home with her family - a nice symmetry, that.

The people from the funeral home arrived then.  We filled out some paperwork with the director while Brian escorted her associates up to Peggy's room.  (Later he tells me that he found our cat Sweetie sleeping on the bed at Grandma's feet, keeping her body company before its final journey.)  We closed the pocket doors that separate the living room from the front foyer so Chauncey would not be underfoot when they brought her downstairs.  A few minutes later they asked us if we wanted to see her one last time.

She was lying on a gurney at the bottom of the stairs, covered with a thick, brightly colored quilt I know she would have loved if she had seen it.  Only her face was  exposed, and I bent to kiss her forehead one last time.  "Bye, Grammy."  Her skin was like ice.  So cold.  I don't know if I said that aloud.

"And all was as cold as any stone, " quoted Brian, and I couldn't help but smile.  I, too, had been thinking of that very same speech from Shakespeare's Henry V that describes the death of Falstaff.  Neither Mom nor I could bear to watch them cover up her face and take her away, so Brian stood sentinel for that final departure.  I busied myself with holding onto Chauncey's collar, although it wasn't really necessary.

Toni's responsibilities were ending, too, but she lingered for a few more minutes, making sure that we were all right and could cope without her help, giving us all one last reassuring hug before taking her leave.  Again, I am so grateful to Hospice - Toni made what might have been a very difficult and traumatic process a gentle, easy transition.  She took care of the details, so we could focus on letting Grandma go.

The rest of the day is a bit hazy.  My mother and I made phone calls to friends and family, or answered calls from those who were checking in to see how Peggy was fairing.  By now, I was able to say, "She's gone," in a clear even, tone.  The only time my voice broke was in response to an expression of grief coming from the person on the other end of the line, as if their emotion served as an ignition for my own.  After about an hour of listening to the same conversations over and over, Brian escaped to run some errands.  I couldn't blame him for wanting to get away.

I worked a little on the blog, and posted a notice and Peggy's photo on Facebook, but I wasn't able to write more than a few short lines.  Too soon for that.  We talked about plans for the memorial service.  Grandma's friend Grace came over with her son and brought us some brownies.  Grace was Peggy's oldest friend - they were the same age and had known each other since they were 5 years old.  When Peggy moved back, they had a standing date every Thursday to play cards.  As Peggy's health began to fail, these senior play dates grew more an more infrequent; Grace, too, had been having some health problems, and it was hard for either of them to leave their houses.  Grace was devastated at not being able to say goodbye to Peggy, but we all tried to focus on sharing good memories, and by the time she left, I think we all felt a little better.

When Brian returned, my mother went home.  After that, I tried to sleep a little, but I'd had too much coffee and I couldn't relax. I tried to watch television, but I couldn't tell you what was on.  A neighbor came and brought a begonia.  Our puppy au pair Chris took Chauncey out for a while. We threw some leftover pasta into the microwave for dinner, as I still didn't feeling like cooking.  I fixed a very small portion for myself, but couldn't even finish that.

"I don't know what to do," I said to Brian.  All day long I'd been wandering around, going into a room  and wondering what I went in there for, not being able to sit still or keep a clear thought in my head.  "I can't seem to wrap my head around making the transition from the life we have had here with her, to the life we'll have without her."

"Did you ever walk up a flight of stairs, and when you get to the top, you think there's one more step than there is? So you step up, but there's nothing there?"

He's right.  That's exactly where I am.  All day, despite everything that has happened, my mind flickers with thoughts that have become such an ingrained part of my daily existence that they come unbidden:  I should go up and check on her.  Is it time for the medication?  Will she want me to fix her something for dinner?  What does she need?  Almost the same instant, I realize those things aren't necessary, anymore.  I hit that phantom step at the top of the stairs.  It jolts me, and I stumble.

The hospital bed is gone now, leaving an empty space that seems larger than its geometry.  The door to the room is closed, as I'm not ready quite ready to face what comes next: the packing and distribution of the last vestiges of her worldly possessions.  Not not, not yet.  And certainly, not alone.

Brian would have called in at work and stayed home with me today, but I told him he didn't have to.  There's really not much that he can do.  I'm still not ready to fall apart.  Nevertheless, after he left this morning, I had a momentary surge of panic.  I wasn't sure I could stand to be here all alone.  Then Chauncey was there to give me a reassuring nudge and a lick, reminding me that I was not, in fact, alone.  For today, I'll be all right.

Sunday, March 21, 2010

Exit

This morning, my beloved grandmother Margaret "Peggy" Monk passed away peacefully in her sleep.  If there is such a thing as Heaven, I know that is where she has gone, and I am sure that she found my grandfather waiting for her.  I will miss her terribly, but I am comforted to know that now she is at peace.

Saturday, March 20, 2010

Fading to Blue

A quiet day.  My mother arrived around 9 with muffins and cinnamon rolls - in our family, junk food has always been a remedy for a crisis.  I told her about Grandma's condition with the awful moaning, and about how she had recognized Chauncey, and Mom started to cry.  She couldn't bring herself to go upstairs yet, so she busied herself with shoveling the snow from our front walk.  Before she had finished, our hospice nurse Toni was here.  She immediately went upstairs to make Grandma more comfortable.  When Mom came back inside, she was able to go up for a little while - I think having Toni there made her feel less frightened of what she was going to find.

I cannot say often enough how grateful I am for the support we are getting from the hospice people.  When Toni came downstairs after taking care of Grandma, she sat down and told us everything she did for her (she even managed to get the blue morphine stain off of the corner of Peggy's mouth), and everything her medical professional eyes had noticed.  The most alarming thing she saw was that Peggy's right foot and toenails were starting to turn blue - a sign that her circulation is shutting down.  "Don't be surprised," Toni said, "if the blue color starts creeping up her limbs to the rest of her body."  Oh joy - something new to look forward to experiencing.

Toni reassured us that we were doing all the right things for Grandma and said that we were taking good care of her.  She told me not to beat myself up about oversleeping on the meds this morning, because it's human, and understandable, given how exhausting all of this is.  On an intellectual level, I know that - on an emotional level, it helped to hear someone else say it.  Toni also said that I should start dispensing the meds every two hours now as late as I can, but for overnight, it would be okay to take a 4 or 5 hour sleep break.

My mom shared with Toni some of the pictures of Grandma she has been gathering on her laptop to put into some sort of slide show for the memorial service.  She said she wanted to show Toni what Peggy was like in better days - how happy and full of life she used to be - but I think Mom needed the reminder of those days as much as she wanted to share them.  We started to swap stories about Grandma - what a sore loser she was when you played cards with her, how she used to bake dozens of cookies to share with her friends every Christmas, how she taught water aerobics until she was nearly 80 - happy memories. We also pulled up my blog, and Toni said it was a very healthy thing for me to do - a good coping mechanism.

I was surprised that Toni stayed so long.  She had taken care of Grandma's needs, and yet she patiently sat and listened to all of our stories, and looked at our photos with genuine, sincere interest.  She never once looked at her watch, or gave off any signals that she was bored or that we were wasting her time.  She even took the time to pay attention to Chauncey when he pestered her to notice him.  I couldn't believe how incredibly kind she was, and then I realized that this is what she does.  She is not only here to help take care of Peggy, she is also here to help take care of all of us.  That's the beautiful gift of hospice.

After Toni left, we began the transition to the schedule of dispensing the meds every two hours.  I set the alarm on my cell phone to remind me when the next dose is due.  In between doses, Mom and I started talking about Peggy's memorial service - actually services, as her friends in Florida (where she lived for more than 30 years) would like to have one there, too.  As Peggy's will specifies that she wants her ashes to be scattered in the same place as my grandfather's were 20 years ago, we will need to make a trip to Florida, anyway, and it would be nice to connect with all of the people who knew and loved her there.

I find it hard to wrap my brain around the idea of the memorial service.  It is taking all of my strength just to process and handle what is going on now.  Even though I know it is imminent, I just can't jump that far ahead yet.  What I did do, however, is create a guest book page on this blog (the "Remembering Peggy" link in the right page bar below her photo) so we could invite friends and family to share their memories of her there.  It gives me some comfort to think that I can transform what began as a diary of her death into a celebration of her life.

Brian came home an hour early - evidently they did not need him as long as anticipated, so I sent my mother home.  Even though she's not here at night,  she has not been sleeping much either.  I gave Grandma another dose of medication, and took the two hour window between 3 and 5 to take a much-needed nap.  It was especially quiet in the house, as I had called our "puppy au pair", Chris, to take Chauncey for a long walk.

Chris is this tall, genial German guy who makes his living as a professional pet care specialist.  He sounds a little like Arnold Schwarzenegger, but his English is excellent, and he is one of those people who has a genuine connection with animals.   We first hired Chris about three years ago to come and take care of our menagerie of pets when we were going out of town for to do a theatre residency.  We often take Chauncey along with us when we travel, but we couldn't on this occasion. We also needed someone to administer twice daily insulin injections to our diabetic cat Petruchio.  Although Peggy was staying in the house while we were gone and could handle feedings and taking Chauncey out in the yard for potty breaks, she couldn't handle the injections, and she couldn't give Chauncey the amount of exercise his high energy disposition requires to keep him from chewing up the furniture.  Enter Chris.

All of the pets get along well with Chris - even Gatsby, who usually hides when strangers come into the house, will present himself to be petted when Chris comes over.   Chauncey absolutely adores Chris - he can hardly contain his enthusiasm long enough for Chris to put the leash on to walk him.  Chris refers to him, affectionately, in his thick German accent, as "Monster."  We not only use Chris whenever we go out of town and need pet care, we also have a standing "play date" set once a week for Chris to take Chauncey on a long (we're talking hours long) walk.  It's an indulgence, but we don't always have time during the week to give Chauncey that kind of concentrated exercise, and it isn't that expensive.  Another plus is that Chris often takes him out with one or two of his other clients' dogs, so Chauncey gets some regular doggy-socialization, which I think is good for him.

I am writing about Chris because I was reminded of that first time he came to take care of our pets.  I had asked him to also check on Peggy whenever he came over, because she was somewhat nervous about being left alone in the house for several days.  When we returned we discovered that, not only had she managed - even with her limited hearing - to pry his entire life story out of him (something she did with nearly everyone she met), she also conned Chris into vacuuming the downstairs floor of our house.  She had decided to surprise us by cleaning the house while we were away, but our vacuum was too heavy for her to maneuver, so she asked Chris to help her.

When I heard about this, I was mortified - we hired Chris to take care of the pets - and nothing more.  I paid him extra and told him if she ever asked him again, to just say no.  I made Peggy swear that she would never ask him to do anything that didn't have to do with the animals.  Cleaning the litter box - fine. Cleaning the dust off the ceiling fans - off limits.  To my knowledge, she kept that promise.  If it was otherwise, well, I guess that's between her and Chris.

The reason I have my doubts, is because this was one of Peggy's most endearing and annoying habits.  She always had a knack for charming people into doing her favors. That, in itself, is not so terrible - the annoying bit is that she often conned people into doing things that she was perfectly capable of doing herself.   Making coffee, for example.  When my grandfather was alive, he always made the coffee, without fail, every morning.  Peggy was perfectly capable of using the coffee maker - I saw her do it plenty of times for Sunday dinners and when company was over - but in the mornings, the coffee pot seemed to become some strange, foreign article, and she was incapable of deciphering its workings.

After Grandpa died, Peggy somehow managed to make coffee for herself in the morning. I know this because, for more than ten years, I sent care packages of exotic flavored coffees to her in Florida.  When she moved back here and started living with me, somehow she could never seem to figure out how to make the morning coffee - she always waited for me to do it, and complained when I didn't make it early enough to suit her.  Whenever I went out of town, I left a detailed set of instructions for her on how to use the coffee maker, and somehow she managed to cope.  The minute I returned, however - no comprende.

The living with me thing, by the way, was only supposed to be a temporary arrangement.  When Peggy turned 80, my mom and I decided that it was time for her to move home from Florida.  Because she was so far away, we were missing too many holidays and milestone celebrations, and we wanted her to be here to share them. We also knew that she was getting older, and we wanted to be closer so that we could take care of her if her health failed.  As there was more space in my house than my mother's, the logical choice was for her to stay with me - at least for a while.  The arrangement became one of joint custody of Grandma - she would stay with me during the week, then go to my mother's house for the weekend, so Brian and I could have a little privacy and some semblance of a personal life.  (It is very challenging to get "romantic" with your boyfriend when your octogenarian grandmother is just down the hall, even if she is deaf as a post.)

As weeks turned into months, and then to years, we often talked about Peggy getting her own little apartment, someplace where there were people her age with whom she could socialize, as she was a very gregarious person.  Somehow that never materialized, and eventually she just dug in her heels and decided that this was the place she wanted to be for the rest of her life.  That has not always been easy for me to handle.  I love her dearly, but our personalities are, in many ways, incompatible, and we have never been the best of housemates.  So she got her way in the end, and while I cannot help but feel I was manipulated into the situation, I do not regret having her here all this time.  I know that not everyone is lucky enough to have so much quality time with their grandparents, and  I also know that, in the time to come, I will feel even more grateful to have shared so much her life.

One of my favorite stories about Peggy getting her own way was one my Grandpa used to tell.  When my mother was a child, the family lived in Chariton, Iowa.  Chariton is a typical Iowa small town.  When my grandparents lived there, many of the major businesses were located around the town square, but the parking spaces all required parallel parking, and Peggy did not like to parallel park the car.  So what she would do was stop in the middle of the street, then go into one of the shops and find some man to park her car for her.  It was never hard for her to charm them - she was a pretty woman with a big bust, and she was adept at appearing to be helpless.  According to my Grandfather, it became something of a town joke - the local shop owners would see her car roll down the street and say, "Here comes Mrs. Monk - somebody better go park her car."  Somebody always did.

I have just administered another dose of medication.  Earlier tonight I showed Brian how to give the meds, and we set a schedule to manage the doses so that I can try to get a little more sleep.  "It's just like having a baby," he says.  "Figuring out whose turn it is to do the 2 o'clock feeding."  There's a certain irony in that.  I have never particularly wanted to have a baby. Brian has 4 adult children from previous marriages, and would prefer not to have any more.  (Besides, we are both too old, now, for all that nonsense.)  Nevertheless, here we are caring for Peggy, who is now every bit as helpless as a newborn.  Brian and I are having a taste of sharing the "parenting" experience together, albeit sans procreation.

Brian is sleeping now, and I have one more dose to do before I go to bed.  I will prep the syringes again when I am finished, so all he'll have to do is be awake enough to squirt the liquid into her mouth, and then he can go back to bed.  Unlike me, he is one of those people who can fall deeply asleep in a very short time, and a herd of elephants wouldn't wake him.  I have a terrible time getting my brain to shut down long enough to get to sleep, and the slightest sound can wake me up. I will be on the sofa downstairs again tonight.  I would never be able to get to sleep with Grandma moaning in the next room.  "Rhythmic whimpering" - that's what Brian calls it.  He remembers a similar sound coming from his father, shortly before he passed away.  Although I've been listening to it on and off all day, I can't get used to that terrible sound.

Both of Brian's parents are gone, and having been through that experience, he is truly sympathetic.  He always knows the right things to say to assuage my fears and make me feel better.  I have not had to cope with a death of someone this close to me since my grandfather passed twenty years ago, and that was very different.  It was a long, wasting illness that left him in constant, excruciating pain much of the time.  On the day of his death, I was nearly 200 miles away, closing a show.  By the time I returned, he had already been cremated.   Although I was lucky enough to be able to spend some real quality time with him in the months before he died, the experience of his death was softened somewhat by distance.  I am traveling in uncharted territory here, and I am grateful to have a navigator to help me find my way.  The fact that he loves me me makes me that much more grateful - I know this was not what he signed on for when he moved in with me.

Throughout this ordeal, Brian has been remarkable - kind, patient, supportive, gentle and loving with all of us - me, my mom, and Grandma. Although, like me, he is exhausted, and I know he sometimes gets frustrated, he rarely complains.  I know he is genuinely fond of Peggy, and she has always thought the world of him.  Tonight he told me that one of the times he went in to check on her, he felt compelled to kiss her on the forehead - he said he wanted to feel the warmth of her skin while he still could.  How could you not love a guy like that?

One more confession - as many times as I have been with my grandmother today, I cannot bring myself to lift up the blankets and look at her feet.  I'm afraid to see if she is, as Toni predicted this morning, fading to blue.  I know that her feet are as cold as stone - some weeks ago, she started wearing two pairs of socks and complaining that her feet were always cold.  We have an older house, and it's always a little chilly in winter - and this winter has been bitter cold.  I've worn two pairs of socks myself on more than one frosty day.  It never occurred to me that Grandma's cold feet were not just a reaction to the weather, but a sign that her circulation was starting to fail.  Like I said, uncharted territory.

Tonight, her hands and face are still warm - I can feel the life left in her.  When Toni comes back in the morning, she can lift up the blankets and look.  If the icy blue is indeed creeping upwards, right now, I just don't want to know.

Wearing Thin

After the midnight meds, I finally went to sleep on the sofa.  I knew I had to wake up at 4 to do another dose, so I set the alarm on my cell phone.  Having had broken sleep (and not much of that) the night before, I slept pretty heavily.  I don't remember waking up and turning off the chime, but I must have, as I was jolted into consciousness when Brian came clumping down the stairs at 5:30 to make coffee.  It put me in a panic - I was late on the meds, and dreading a repeat of yesterday morning's episode of restless thrashing.

I ran upstairs.   There was no movement, but Peggy's chest congestion seemed more pronounced, and with every exhalation came a short, whimpering moan.  I quickly prepared the syringes and dosed her, then sat with her for a few minutes.  The moans are agonizing- the sound travels through my ears and into my heart, squeezing.  Although I do not think she is in any physical pain,  I sense that something is going on in that distant place inside her mind.  Somewhere in there, a terrible battle is raging - one side fighting to hang on, the other fighting to let go.

I stroke her forehead lightly and say to her, even though I know she cannot hear me, "It's okay.  It's okay to let go.  You've done everything you need to do here.  We'll be okay.  Everyone will be all right.  Just let go.  Grandpa is waiting.  Your Jimmy is waiting for you.  It's okay to go."  The moaning becomes a little louder.  Perhaps she hears me after all.  I continue to stroke her head, and she begins to settle.  For the first time in four days, my tears flow unabated.

I know that I cannot afford to fall apart today.  But I am down-to-the bone exhausted, and the more tired I become, the harder it is for me to hold it together.  The outer crust cracks and the marshmallow inside comes oozing out.  I go downstairs to the comforting arms of Brian - at times, he is the glue that holds me together, at other times, he serves as the release valve that makes it okay for me to fall apart - whatever I need, he will provide.  Right now I need the glue.  It will be hard not to have him here today.  I know he would stay if I asked him to, but I'm not going to ask.  With Grandma's illness, I have taken on fewer contracts in the last couple of months, and we need the extra income from his overtime.

After he left for work, it is useless to try and sleep - the adrenalin rush I got from oversleeping on the meds was enough to jolt me into wakefulness.  I go up again to check on Grandma - she seems a little less agitated, so I know the meds are taking effect.  She has slumped over slightly in the bed, and the position does not look comfortable.  Her chin is resting slightly on her right shoulder, and there is a puddle of drool (light blue - perhaps the food coloring was not such a good idea) pooling on her nightgown.  I try to wipe it away with a tissue, and I can see it is mostly saliva.  Our hospice nurse Toni had told me that the morphine would be absorbed through the lining of the mouth.

I try to move Grandma to make her more comfortable, but she's dead weight now, and I'm not strong enough to shift her by myself.  I call the hospice 24 hour hotline - within a few minutes, the on-call nurse calls me back.  I tell her the situation, and she asks if I need her to come right now, or if I would prefer to wait until Toni comes on duty at 8.  I decide to wait for Toni.  Since she has been working with us and is familiar with Grandma, I feel more comfortable having her come to help, rather than trying to explain everything to a new person.

My stomach is too sour from my lack of sleep to drink coffee, so I make some tea - a sweet, spiced chai blend, to which I add a liberal helping of milk - and it's back to the computer.  Creating these posts is also providing some glue to help me keep it together.  As I type, I have an internet player tuned to BBC Radio 7.  I studied for a while in London, and have always been something of an anglophile.  Although I have not been there in many years, England is the one place where I felt the most at home, and I enjoy listening to the live radio broadcast.  It almost makes me feel that I am there - a convenient and welcome escape.

Radio 7 is my favorite BBC station - it is the radio equivalent of television (without the pictures of course, or the commercial advertising that clutters the airwaves of most American radio stations.)  The programming is a mix of comedy, drama, science fiction and mystery series, dramatizations of classic novels, short stories, and plays, and variety programs.  This morning they have delved into the archive and are rebroadcasting an episode of the Goon Show, a wild and wacky comedy series that ran in the 1950's.  I had heard of the Goons, even though their series ended long before I was born - their work is considered groundbreaking, and most British comedians who are old enough to remember them (like the Monty Python gang) credit the Goons as one of their seminal influences.  The member of the Goons who is best-known in this country is the late, great Peter Sellers - the crazy characters and voices he created in his films had their foundation in the Goon Show.  I had never heard a Goon Show broadcast until I started listening to Radio 7.  They always make me laugh - and this morning I really needed to - another layer of glue applied.

Time for another Grandma check - Toni should be calling soon.  The Hospice people are really outstanding - I don't know how we could manage this without them.  The tag line on Toni's business card, which I keep next to the phone, reads "Love in Action" - and that's exactly how they come across. I am so grateful to have this kind, compassionate and professional support.  I wish Peggy was aware of what great people are helping to care for her now.  I know she would love them.

I go to her room, and she is much the same, still moaning softly with every ragged breath.  Toni calls a few minutes after 8 and advises me to go ahead with another does of meds, even though it's been less than 3 hours since the last one.  Once again, I complete the ritual: crush the Lorazepam, add a few drops of water to dissolve, load the syringe.  Load the other syringe with the neon blue morphine.  Insert them, one at a time, at the corner of her mouth, which will open slightly, involuntarily.  Push the plunger to dispense the liquid.  Wait to make sure it doesn't dribble out of her mouth.  Wipe the drool from her face. Wait a few more minutes.  Rinse the syringes and the spoons and put them away.  I can almost do it in my sleep.

I go back and sit with her a while longer, trying not to listen to the moans.  Chauncey comes in for what has now become his ritual - front paws on the bed, nose reaching out to sniff, find some skin, kiss Grandma.  This morning he licks her right on the nose. For the first time in nearly a day, she opens her eyes, and sees her "Doggie," then closes her eyes again. She is smiling.

Friday, March 19, 2010

A Snowy Evening

It's snowing... AGAIN.  It's not unexpected - the local weather reports have been predicting it since last weekend -  it's just one more inevitable thing that I wish wasn't happening, but is.

It has been a rough winter - more than 60 inches of snow have fallen in our part of the world since October - something of a local record.  It has melted very rapidly, and many areas are already being flooded as lakes and rivers surge and overflow their banks.  Yesterday, when we brought Grandma home from the hospital, it was nearly 70 degrees.  Tonight the temperature is in the 30's.  By Monday, it is expected to climb back up into the 50's and melt everything away again.  It seems that Nature is reminding me of the transitory condition of all life.

Tonight, after I gave Grandma her latest dose of medication, I sat for a while next to her bed. Through the window behind her, I could see the curtain of falling snow reflected in the street lights, covering the rooftops behind our house in a fluffy, pristine blanket.  Quite beautiful, really. I know that if Peggy could see it she would not believe it - in fact, she would probably find it annoying.

Every spring, when the temperature climbed above 60 she could not wait to start packing away her winter clothes and unpacking the sherbet-tinted shorts and lightweight cotton shirts she brought with her when she moved here from Florida.  Every year, I would always have to remind her that, just because we were having a warm spell, that did not necessarily mean that winter was over, and she needed to keep those long pants and sweatshirts out of storage just a bit longer.  Not this year, however.  Her beloved Birkenstock sandals will remain in the closet. The Cherokee brand cotton pedal pushers she has worn for more than 30 years (now faded from turquoise to robin's egg blue, but never worn out) will not be unpacked.  The signature floppy turquoise hat with the slightly-tatty, violet silk chrysanthemum sits on the shelf in her room, gathering dust.  She will not be needing them this summer.

My mother went home several hours ago.  There was no need for her to stay, there's really nothing for her to do.  Grandma has been resting quietly most of the day - she hardly stirs, even when you touch her.  She is somewhere inside herself now, some secret place we cannot penetrate, but she seems at peace.  Perhaps she will never come back to us at all - at this point, it's hard to say.

I give her medication at four hour intervals.  After several tries, I have finally mastered the art of crushing the Lorazepam with the spoons and getting the diluted solution into the syringe.  At our hospice nurse Toni's suggestion, I have spiked the morphine (which is a clear solution) with a drop of food coloring to make it easier to see when drawing it into the syringe.  "Don't use red, though, " Toni cautioned. "It looks too much like blood."  I find a box of neon food colors my mother brought over - when my 5-year old niece was visiting last month, they used it to make frosting for sugar cookies.

The morphine is now a bright shade of turquoise.  I think Peggy would approve - she has always loved the color.  She would not, however, like the trickle of blue that stains the corner of her mouth when a little of the solution dribbles out.  She barely stirs when I poke the syringe into her mouth and squirt in the liquid.  It's a very tiny dosage - not enough to make her choke, even though I am basically giving it to her while she's sound asleep.  My fingers, too, are stained - I know the blue will fade in time,  much more quickly than the memory of of how the stains came to be.

As I sit with Grandma, watching the falling snow, I try to find some sense of inner peace to match the quiet, delicate landscape outside.  Our dog Chauncey comes into the room, as he periodically does, to check on Grandma.  Peggy and Chauncey (she hates the name and refuses to call him anything but "Doggie")  have a very special relationship.  Chauncey is a high energy dog - half Border Collie, half Australian Shepherd - and smart as a whip.  When I walk him on the leash, he sometimes gets so excited he nearly yanks my arm out of the socket.  Yet when Grandma put him on the leash to take him out (which she did often, in days past) he never so much as tugged. He seemed to have a preternatural awareness that she was not as strong as I - he just knew he had to be careful with her.  He loves his grandma, and Peggy adores him.

Whenever I go to Grandma's room now, Chauncey follows.  He puts his front paws up on the bed and sniffs.  If he can reach a place where her skin is exposed - a hand, a cheek - he "kisses" it, as he has done every day, a dozen times a day, for the last four and a half years.  I know he would like to climb up on the bed next to her as he always has, but the hospital bed is too small - there is not enough space for his 55-pound frame.   This morning, when he licked her hand, Grandma smiled and said, "Doggie."  It was one of the few lucid moments she had all day.  Tonight, not even their special bond can penetrate her silence.  He rests his nose on the the blanket next to her and sighs deeply.  I pat his head.  "I don't think she's going to wake up, Buddy."  He sighs again, then climbs down and trots out of the room, his toenails clacking on the hardwood in the hallway.  It's too hard for me to sit there after that, so I follow him.  There's nothing we can do for her right now.  Nothing to do but wait.

I go to our room, where Brian is dozing.  He had to work overtime today, and I know he is beat.  He has another 8-hour day of overtime tomorrow, partly due to the fact that he left work early yesterday to come home and help get Grandma's double bed out of her room to make room for the hospital bed.  I crawl into bed next to him, and he wakes up, ever solicitous of my comfort.  We are immediately joined by two of the cats - Gatsby, who wants to cuddle, and Stella (also known as Meep, because of the sound she makes in lieu of a meow), who only wants to climb over us to get to the table by the window so she can watch the snow.  Chauncey is curled up on the rug at the other side of the bed.  Here is the peace I couldn't find in that other room down the hall - it is here in the warm, drowsy presence of the four-legged "children" who love me unconditionally, and the man who, despite the fact that he knows me better than any other soul in the world, also, somehow, loves me unconditionally.  In this moment, I feel blessed.

We watch the snow as it begins to cling to the barely budding branches of the tree outside our window, and I tell him about my mother saying this afternoon that she wished we'd had hospice care when my grandfather (Peggy's husband) was dying.  I can hardly believe that nearly twenty years have passed since he lost his battle with lung cancer.  It was a long, difficult dying process - much of it was spent in hospital rooms being poked and prodded by strangers, terse conversations with dispassionate doctors, and an endless menu of medications. When we cleaned the house after his his death, I counted more than 40 different pill bottles on the tray by his favorite recliner (where he slept many nights because he could no longer breathe when lying in bed.)

Grandpa's death was a terrible ordeal - both for him, and for everyone in our family - but especially for Peggy.  He passed away just one month shy of their 50th anniversary, and she was devastated by the loss.  The experience also gave her a pathological fear of doctors and hospitals - one of the reasons, I am sure, that she begged us to allow her to die at home.  Looking back and remembering those horrible days with Grandpa in the hospital, I know that this is better.  It is a kinder death - a more gentle, peaceful passage from this world to the next.  It is not easy, but I know it is a gift - both for her, and for us.

I am still too restless to sleep, so here I am, back at the keyboard.  I think about the snow, and the conversation I've just had with Brian, and I am reminded of that famous poem by Robert Frost called The Road Not Taken.  If you don't remember it, the last few lines are:


"Two roads diverged in a wood, and I—
I took the one less traveled by,
And that has made all the difference."


In respecting my grandmother's wish to die at home, I am, in a sense, taking a road less traveled.  It does make a difference, and I will never regret the choice.

One Step Closer (part two)

I decided I had better split this up, so it can be digested in smaller segments.

Here is what has changed since my early morning conversation with Grandma:

My fiancé, Brian (who is, by the way, quite wonderful) has to leave for work a little after 6 in the morning.  Most of the time, I try not to get up when he does, because I am NOT a morning person.  However, I am a very light sleeper, so I can't help waking up when he gets up.  Often, I go back to sleep for another hour or two after he leaves, but this morning, I could not - my mind started racing, and after about twenty minutes I realized that sleep was impossible, so I might as well get up.

I checked on Peggy, and she seemed to be sleeping peacefully, so I grabbed some coffee and turned on the computer.  After dealing with some e-mail, I was not quite ready to think about business, so I created this blog.  A few minutes before 8, I checked on her again, and she was still sound asleep.

At 8:30, when Ali, the hospice caregiver arrived, we went to Peggy's room and found her moaning and thrashing around, her eyes still closed.  There was a congested rattle in her lungs as she breathed - something I hadn't heard before.  When I touched her hand, she opened her eyes a little, but she seemed disoriented.  I think she knew who I was, because she smiled at me, but seemed confused when she looked at Ali, who had never been here before.  I wrote a note on Peggy's white board to introduce Ali, but I could see that she couldn't read it - she seemed to see the board, but there was no sign that she could comprehend what was written on it.   Ali found her condition alarming enough to warrant a call to Toni, the hospice nurse and case manager.

About this time, my mom arrived.  Grandma was getting more restless and agitated - she couldn't keep her eyes open, and she didn't seem to be able to focus on anything when she did open her eyes.  She mumbled a few words, but what she said was unintelligible.  She didn't seem to recognize my mother.  This was, naturally, very upsetting for Mom and she left the room in tears.

Ali and I decided it would be good to give Peggy another dose of the morphine, as well as a dose of Lorazepam, which as I understand it, is an anti-anxiety medication.  I've pretty much got a handle on the morphine now, but the Lorazepam was a challenge.  It comes as a tiny, tiny pill.  If the patient is not conscious enough to take it - which Grandma wasn't at this point - you have to crush it, mix it with a a few drops of of water, suck it up in a syringe, and, like the morphine, squirt the solution into the mouth.  I made rather a hash of the crushing, mixing, and sucking. I tried to do it on a saucer, and I don't know that I got all of the solution into the syringe, but I did my best.  Within a few minutes after receiving the medication, Grandma started to calm down.  She seemed to be breathing a little more easily and she wasn't thrashing around quite so much, but she still looked uncomfortable.

A few minutes later, Toni arrived.  She and Ali adjusted Peggy's bed and pillows to try to make her more comfortable.  When they rolled her, they had discovered that she had soiled herself a little - it wasn't much, because she hasn't had much to eat in the last few days.  They gently and efficiently cleaned her up.

I left the room at this point.   I am a fairly strong person and can handle a lot of awful emotional stuff, but when it comes to dealing with bodily function issues, I am next to useless.  I have a volatile and uncontrollable gag reflex.  I can barely pick up dog poop without choking.  My fiancé very kindly tells me that I have an extra sensitive sense of smell, which is one of the attributes that makes me a good cook.  What it boils down to is that bad smells make me vomit.

I went downstairs to see my mom.  She was really having hard time dealing with the turn of events. "She doesn't even know me.  I can't go up there - I can't stand to see her like that," she sobbed.  The last few weeks - and the last few days in particular - have been really tough on my mother.  In many ways, I think her spirit is a lot more fragile than mine.  Most people who know me would say that I'm a fairly tough cookie.  Only a select few who know me well have seen that there's a marshmallow under the outer crust.  My mom has no crust - she's ALL marshmallow.

Besides just being better equipped to cope, I have been dealing with my grandmother's gradual deterioration 24/7 for months now.  It's not easy, but after a while you learn to roll with it.  You have to.  You also don't have a clear perspective, because you're around the person all the time.  You're never away from her long enough to be shocked by the changes you see the next time you see her. Although my mom has come to the house pretty much every day for the past two months, she hasn't developed the tolerance for handling the changes.  She goes home, gets away from it for a little while, and then it's that much more of a shock when she comes back.  She sees the alteration in my grandmother's condition  more clearly than I do, and it frightens her.  Proximity gives me a little more immunity.

The other thing is, I'm a generation removed.  This is her MOMMY.  I am sure that, when we get to this stage at the end of her life (and believe me, I don't even want to THINK about that) I will be feeling what she feels now.  Right now, I feel that it's up to me to hold it - and her - together.  I don't say that to be an indictment of her, or to be self-congratulatory in any way.  It's just what is.

So my grandmother is upstairs dying, and my mother is falling apart downstairs, and I'm not sure WHERE I should be.  After running up and down the stairs a few times, I finally voiced this in front of Toni and Ali.  Toni had just given Grandma a second dose of medication, to try and make her a little more comfortable.  She showed me the RIGHT way to liquify the Lorazepam, by crushing it between two spoons, then adding just a tiny bit of water to dissolve it before sucking it up with the syringe - much more simple than the way I had done it earlier.  "Come downstairs with me," she said.  "Ali will be here."

We went downstairs and Toni and I sat down with my mom at the dining room table.  Toni explained, very calmly and gently, that Peggy is in the end stages of life - her body is starting to shut down, but her mind is not quite ready to let go.  Today is Friday - Toni said she doesn't think Peggy will make it to Monday.  It's a matter of days - maybe even hours.  She also told my mother that although Peggy may not be able to "see" her, she knows that she is not alone.  She knows when she is being touched, and she can recognize the touch of someone familiar.  (I don't know if that is true, but it made us feel better to hear it.)  It also helped my mom to find the strength to go back upstairs and sit with Grandma.

Ali left at about 10:30.  Toni stayed a little longer to make sure Peggy was comfortable and we were prepared to deal with whatever was going to happen the rest of the day. Mom stayed with upstairs with Grandma, and I came down to my office.  I tried to do a little work, but I couldn't focus on anything more than what's going on here in the house.

And so we begin the death watch.